Not Just A Label

Different Places

2011-03-17T20:55:00.002-04:00

Somehow, over the last 9 months I have come to sit in a very different place than I ever have before.
I see my boy differently. I've been changed. Sorry I've been gone. I just haven't needed this place.

One day, it all changed. I'm not so sure it was just this one thing, but I know God opened my eyes to see the treasure I get to hold in my arms each day. These words, about King Solomon, started to resonate. And I knew. I knew that I had missed it. Totally missed it. I was mourning what I wanted..... and God showed me in these beautiful words that I was looking for something regular, when what I got was a prized treasure beyond what any parent could imagine.

"And God gave Solomon wisdom and understanding beyond measure, and breadth of mind like the sand on the seashore, so that Solomon's wisdom surpassed the wisdom of all the people of the east and all the wisdom of Egypt..... He also spoke 3,000 proverbs, and his songs were 1,005. He spoke of trees, from the cedar that is in Lebanon to the hyssop that grows out of the wall. He spoke also of beasts, and of birds, and of reptiles, and of fish. And people of all nations came to hear the wisdom of Solomon, and from all the kings of the earth, who had heard of his wisdom." 1 Kings 4:29~34

One of my two beautiful treasures, he's about 4 feet tall. And oh, what a beautiful mind. Only GOD knows the measure. Now, I know Solomon was a King and he prayed for God's wisdom. I know that's different than my little one. But when I read that, I think about how different it made him. I think about the responsibility one has to hold all of that in their mind and KNOW that God wants them to use it for His purposes.

And, that is where I sit now. God gave this beautiful mind to my son. My son loves scripture, loves God so much. He opens up his Bible to a Psalm and just belts it out in praise. We've told him he should write his songs down so he can remember them, but refuses, 'It is already written down, it's right here in the Bible'.

This little boy, so unique. God made him that way. We have SUCH a responsibility.... to train him up to know what all that ability and knowledge is for.

There's a line in a favorite song, that always reminds me of my son.... and it says:

'I will not boast in anything: no gifts, no power, no wisdom
But I will boast in Jesus Christ; His death and resurrection
Why should I gain from His reward? I cannot give an answer
But this I know with all my heart: His wounds have paid my ransom'
~How Deep the Fathers Love

God doesn't give us such unique gifts so we can go flaunting them around on the things of this world. He has a very specific purpose for each of us and intends to teach us what it is, if only we will listen.

"Hear, O Israel: The LORD our God, the LORD is one. You shall love the LORD your God with all your heart and with all your soul and with all your might. And these words that I command you today shall be on your heart. You shall teach them diligently to your children, and shall talk of them when you sit in your house, and when you walk by the way, and when you lie down, and when you rise. Deuteronomy 6:4-6

Making Sense of ASD's

2010-07-01T08:44:00.002-04:00

If you don't have a great understanding of the spectrum as a whole....this image sums it up very well. I don't think any child can be neatly plotted on a chart such as this, but it gives a better understanding to what is meant by a diagnosis and the expectations (or lack thereof) that follow a particular diagnosis.

Anyway, Dr. James Coplan, who has written probably the newest very well written all inclusive handbook on ASD's now has a website/blog where he is sharing thoughts and other images such as this. As a very visual person, I am enjoying all of his articles and visual aids.

Check it out! http://www.psychologytoday.com/blog/making-sense-autistic-spectrum-disorders

World Autism Awareness

2010-04-02T09:48:00.002-04:00

Today is World Autism Awareness Day.

You know one family who was given a wonderfully beautiful child with an Autism spectrum disorder. We are all created in the image of God, and thus I do not question God's authority in creating my son just exactly the way he is. He is awesome, beautiful, funny, intriguing, smarter than I am, and has a God given purpose here on this Earth. Please take this as your open invitation to ask anything you've ever wondered about Autism or Autism Spectrum Disorders. I'd be happy to oblige.

... and more importantly.... this is the day Jesus died for all of us. He never sinned. He never did anything wrong. He became the sacrifice for me because I can't do it for myself. Do you want to know Him? He already loves you. "For the wages of sin is death, but the free gift of God is eternal life in Christ Jesus our Lord." Romans 6:23

Yale Undergraduate Seminars on Autism

2010-03-31T09:28:00.003-04:00

Breakthrough! I'll post my thoughts on this subject later, as I have only had the opportunity to watch Behavioral Treatments, Dr. Michael Powers. I just want to say that if you want to understand behaviors of Autism/ASD's at their core, what to do with them, why it is important to do anything at all, this guy is phenomenal at the explanation.

I plan on watching the remaining videos at some point. I highly recommend checking this stuff out!

http://autism.yale.edu/

Take THAT expectations!

2010-03-16T10:48:00.002-04:00

Sometimes, the professional world helps me to gain perspective and get better handle on what we're dealing with. Having expectations is helpful, in part. It is helpful to know, though he began reading at age 2, that his understanding or comprehension of the text he has the ability to read MAY be well below the level of his reading. He actually MAY not be able to comprehend what he is reading AT ALL. And when it comes to more advanced fiction, later on, he MAY have a lot more trouble.

Long ago, he started laughing as he read. So, we've known that expectation was thrown out the window. He totally thinks some of the text/pictures are hilarious, especially in his Curious George books. It is quite entertaining to see.

But, yesterday, we got a new magazine subscription in the mail from Memaw. Highlights, 'High Five'. What a TREAT!! Page 12. Word Math Problems. He got every single one of them correct, immediately.

"One spaceman is in the truck. Another one is climbing in. When he gets in, how many will be in the truck?" Two

"Two spacemen are on the table. Look! Another one is climbing up the table leg. When he gets to the top, how many will be on the table?" Three

"A spaceman is going for a ride on the dog's back. Another one wants to ride, too! When he jumps on, how many will be on the dog?" Two

Take THAT Expectations! :)

"Ages 4+"

2010-03-16T00:33:00.004-04:00

I don't usually have to look long or hard to find something to keep me laughing. With a 2 year old around my ankles and a 3.5 not far away, I am in constant struggle to keep my giggles under control.

You mom's know what I'm talking about. It's that kind of thing where they're getting into something they're not supposed to, but it's SO funny you just have to step away for a few moments before declaring their misbehavior.

Or, it's the thing that you so badly don't want to turn into an 'issue' and so you really, I mean REALLY shouldn't laugh in front of them.... but then you do.... and you just can't stop. I see you over there laughing. You know what I'm talking about...

So, today, I was waiting for quiet to rush over the house (we call it naptime). I was sitting here pecking away at the previous blog post when DS came to me so upset that he didn't get to play at all between school/lunch/nap. I conceded to allow him 30 minutes of play time before he went back in for nap. I felt it was a very reasonable concession.

He picked a board game we haven't played in a very long time. There's a good reason that game was on clearance... it's no good. I set him up right near where I was and went back to my typing. And I hear....

"No, No, Nooooo. But, it says, 2-3 players"

"What do you mean buddy?"

"You have to have 2-3 players. Play with me."

"Ok. Be right there." No arguing with that one.

We played a little.... not having instructions or any real desire to find any, I just made up some simple rules and we played for a few minutes. All the while I was waiting for him to find the flaws in the made up game. But, he didn't. He happily played along.

Until. He looked back over at the box and studied it for a moment...

"It says Ages 4+. I'm 3. We're all done. I will play again on [insert birthdate] when I turn 4. Mommy, you are 31, so YOU can play LOTS of times."

I could not contain my laughter. So literal. So, well, obedient really. Hey, it DOES say ages 4 and up. Who can argue with that?
And we were done.

Glorious Token Monsters

2010-03-15T11:56:00.003-04:00

Mon, March 8: 2 Green tokens

Tue, March 9: 3 Green tokens

Wed, March 9: 5 Green tokens

Thr, March 10: 7 Green tokens

Fri, March 11: 5 Green tokens
Sat, March 12: 6 Green tokens
Sun, March 13: 6 Green tokens

I anxiously awaited meeting with DS's Psychologist again. Bottom line, I was very confused on how to meet him developmentally, understand him developmentally, and still parent and discipline appropriately. I knew there was a disconnect.

When we're getting dressed for school and he won't put on his clothes, time out doesn't work. He's already upset, he gets even more upset and in turn, we're late for school, and he's even MORE upset about that. He can do it. He just won't. I realize there is a road block besides disobedience, but I haven't quite put my finger on it. He is an adorably manipulative little guy, and there's not a thread in me that believes that he doesn't need the right kind of discipline.

We implemented a visual schedule, broken down into Morning, Afternoon, Evening, and Nighttime. It works wonderfully and we only have to use it when we NEED to, which makes me feel better about not getting him SO sucked into a routine that he is depending fully on the support. From experience, that's not good for him.

So, that was one piece. We can breathe a little easier knowing that when he knows what is going to happen and how it happens, he does a LOT better.

We used a coin jar/treasure box system for a short while, but it was not effective. We told him to make 'good choices'. He really understood what good choices were. When he made good choices, he would get coins. 10 coins and he would get a treasure. DS would just fixate on getting his 10 coins. Then, he would constantly make up rules about how he was to get his rewards, "I will eat one bite and you will give me 5 rewards, then I will have 10 and I will get a treasure. 5 + 5 = 10. Ok? If I have 3 tokens, you will give me 7 more tokens and then I will get a treasure. yep. Ok.". Ha! The coins were just a new fixation and we finally took that away.

So, last week, I finally met with the Psychologist.
Her suggestions:
Try the coin jar again.
Remove the # qualification of how many he needs to get.
Also, remove the words 'good choices' because the reality is that getting dressed and not jumping on the bed are NOT really choices. He is now to 'follow directions'. When he doesn't we use as natural of a consequence as we can. Naptime or getting dressed, we don't use time out. His delaying is meant to get out of doing it because it's not easy for him. Time out only makes that worse. A behavior like hitting or something dangerous, time out is still the consequence. This helps both with all the delaying AND with his understanding of time out. He seems to 'get it' much better now. He doesn't NOT get to put on his clothes just because he doesn't want to.

So, if he isn't following directions, we either prompt him that he won't get a reward if he doesn't do it the first time and when that doesn't work, we hand-over-hand do it 'for/with' him. Telling him that following directions means he must do it the 1st time was a REALLY good thing for him. It gives him a very clear expectation and he knows if he doesn't do it right now, there is no reward. When we help hand-over-hand, he is NOT happy about it and finally ends up saying, 'No, I need to do it by myself.'

He can also get rewards for using 'nice words'. Again, he must do it the 1st time in order to get that reward, so I prompt the nice words and the whining diminishes.

The coin jar/treasure box was totally revamped: Enter Token Monsters

One for DS, one for Baby sis.

As you can see, there is a paper on the front of each racquetball jar that depicts the 'line' their tokens [poker chips] must cross before getting the coveted treasure from the treasure box.

We thought long and hard about all of DS's quirky little obsessions in the making of these monsters. The tokens had to be big enough so they could fall differently each time he inserts them so he would never have to get the same amount of tokens. If that happens, the little square on the front is removable and I can reposition it to change the goal # of tokens. So far, so good. No counting. Just pure excitement.

In fact, he was SO excited, SO motivated over these tokens, the responsibility of 'feeding' his own monster, we decided to up the anty.

"If you go potty ALL BY YOURSELF [aka no prompting], you will get a Green token. A Green token can be fed to your monster AND you get an immediate trip to the treasure box"

As you can see above, it's working. Like a charm! He's so excited and proud of going potty by himself [pee only for now]. He's even graduated to flushing, washing hands, and drying his hands before he comes out of the bathroom. Insert Applause! The big difference between these potty successes and all the others in the past are that he is motivated by the reward, but he isn't going back to the potty standing and waiting for more pee JUST to get a reward. He is actually staying dry. All. Day. Long.

We're more relaxed and both of the kids get to take part in the wonderfulness of FOLLOWING DIRECTIONS the FIRST TIME, Using nice words, and pottying independently!!! We're 11 days in and it's still working!

All Glory to God for allowing the right people at the right time into our lives to help come up with these awesome ideas.

"And my God will supply every need of yours according to his riches in glory in Christ Jesus. To our God and Father be glory forever and ever. Amen."

Phil 4:19-20

The radio

2010-02-27T02:31:00.000-05:00

I've watched some movies recently, "Mozart and the Whale", "Adam" with main characters who have Asperger's Syndrome (purely for entertainment). I've read a little. Talked to a slew of other moms. I've come to my own conclusion that DS probably fits that label a bit better, though diagnostically, his language delay and toileting issues are not textbook for Asperger's. Plus the fact that he's a bit young. Wherever he falls on the spectrum... it's not Kanner's Autism & I've been in overdrive trying to understand him better so i can be a better mom and advocate. It is fair to say, I have been immersed & the asperger's books are helping more than anything else I've found so far.

Today marks a first.

For a long time, we've had pragmatic language on our speech session roster. We've worked on conversation volleys, requests, clarification, commenting, etc. It has only been very recently that, again, his language has exploded. He is still more on his own topics of interest and his longer conversations are usually tinted with lines from tv shows or his books on tape - but they are rather subtle - much of the time he steals their tone and not their exact words. He will even say, 'Look' to get our attention now, which is something that I JUST noticed today. He still has a long way to go, still needing plenty of instruction, but it seems as if he's met a whole new set of goals. He's definitely starting to come out with some more original thoughts and needs.

I've never actually been a part of one of those conversations where you know that the answer that is coming out is far beyond the expectation of the original commenter. Until today. And even then, it at least started as something that might be expected from a 3 year old....and then he passed the line....and then he sprinted further.....

Yesterday, we were at Walgreens. DS owns a little MP3 player, got it for Christmas. He saw this same little 'radio' at the store and debated me on buying ANOTHER one. What we would need another one for, I don't know. I imagine it was just his fascination that they sold the exact same one.

Today, we took baby sis to the doctor. DS took his radio in with him. It is very quiet and I knew it would keep him out of mischief. When the nurse walked out to the waiting area she said,

"Oh, your radio is really cute"

His response, "Yeah, uh-huh. This is my radio. I got it at walgreens. We drove to number [address] 2956 in the black car. When we got there, we went in and walked to number [aisle] 9. It was Twenty nine dollars and ninety nine cents. It is blue with lots of numbers. I have 34 songs. Un-huh. Yep. I am listening to number 17 and I will listen to the whole song. when I get to the end of number 17 I will listen to number 18. I need to listen to the whole song...... "

I had to cut him off to go back to our room, but I would have loved to just sit there and watch this play out until he was done.

I was amazed and in awe of all the words and sequencing that came out of his mouth. At the same time, I felt a bit sorry for the nurse who had made the innocent comment. And then, also, I knew this is a new thing we'll eventually have to work on. But I was just so happy to see him relating to a comment like that, I would have let him drone on and on all day if I could.

Confusion says....

2010-02-27T00:57:00.002-05:00

I have found myself back in a place I visited shortly after the diagnosis.

Confusion.

Winter break was a rollercoaster. 5 weeks off, some time at home, lots of time spent traveling here and there, no real schedule or routine. We had a couple of good weeks and a few really rocky ones. Therapies were hit or miss, with an insurance glitch and vacations. Out of nowhere, seemingly, came this flash flood of behavioral stuff I just wasn't quite expecting. Meltdown city is where I live on any given day. If he isn't melting down, he's engaged in a preferred activity. There are moments where he is just playing nice and engaging with his sister, being silly or complying with requests -- but the overwhelming part of his day is spent in His world with His rules and His expectations. Now, I don't mean he's in a corner all day perseverating on letters and numbers ---- but if the day isn't going just as he plans, we are all in for a real treat {insert sarcasm}.

Potty training is exactly the same at it was. 100% prompted for pee, though we can go whole days without 'accidents', it is 100% controlled by when and whether we send him and how compliant he is or is not. He lacks the piece where he understands he NEEDS to go. He is unaffected by the accident itself - not upset - not needing new clothes - he can go on about his regularly scheduled day and not care.

My poor boy has now been restricted from playing computer since Thanksgiving because this reward is solely attainable through pooping in the bathroom [our system is supposed to help him move toward the potty, but he only has to start IN the bathroom to reduce anxiety and show us his ability to know ahead of time] and he is not able .....or is he? .....I don't know. I am up to my eyeballs in poop filled undies in our attempt to give him enough TIME to 'get it'.

......Is it helping? ........Is it hurting?

All of our reward systems put in place (after our psych consult) have hit the trash. Revamped over the past week.

I've got 3 books started, none finished, and about 5 more on a waiting list. [see booklist]

The current influx of confusion has multiple levels.

I have compassion for my Three-and-a-half year old little boy who, at least on SOME level isn't wired the same as my two-year-old. And at the same time, his language, his manipulation, his abilities make me think....... is using a different kind of discipline or support just giving in?

So, where is that line? Where do I draw it? What DOES he get and what does he NOT get? I feel like a failure at discipline..... ..... or do I?

xx time out doesn't work

xx popping is not an option {reaction is incomprehensible}

xx delayed reward only turns into a debate

xx immediate reward turns into perseveration

xx natural consequences turn into all out meltdowns

Does he willingly choose to not comply with getting dressed for school in the mornings because he deceitfully and manipulatively wants something else? Is it anxiety? Is it a problem with routine? Is it a mom-softie giving in too easily? Is it inconsistency?

I wear two hats.

One hat is my ASD hat. When I put it on, I believe my son needs me to help him be better. To help him navigate. He needs me to steer him through the ever confusing world that doesn't conform to his ideas. When it is time to leave or we are late - he wants to change the clock. When there is no address at a business - he wants to put one there. When he thinks it is time to do X,Y, and Z -- there is no alternative. I am there for him to navigate with him and help him understand the world doesn't rotate around HIM.... and I don't want to punish him for disobedience that I don't even know if he understands. And then there is the sensory piece. Maybe the material is upsetting him. Maybe I forgot a part of the routine he has in his mind.

And my other hat is my mom hat. The hat that holds expectations. It tells me that I have allowed him to 'get away' with manipulation. It tells me I have let him down by not expecting more. It tells me to put him in time out and show him that there are consequences to our actions. It tells me that he doesn't want to get dressed because I have allowed him to take control. It tells me that I am babying him and he will never learn if I don't make HIM do it himself.

I am certain I need BOTH hats and neither works well without the other.

********************************************************************

My main problem is confusion.

It used to be about diagnosis. Then it was getting others to understand him. Then it was finding the right therapists. Then it was preparing for the IEP fight to help them understand the disconnect in ability & deficit.

All of that is over and somewhere along the way he started growing up. He's 3.5 and the expectations of a child growing ever closer to 4 are just different than that of my tender 23 month old who was newly diagnosed. It isn't just about sentence length and motor planning anymore.

It didn't always matter where on this spectrum he fell. And now, all the sudden it does.

If i could just understand why he does some of the things he does. If I could just understand his comprehension of the expectations we have for him. And so I read..... in hopes to find a profile that helps me to understand my boy better. And to be a better mom, too.

the Video did the trick!!

2009-12-15T23:49:00.000-05:00

I am so thankful for technology today. I walked into my appt. w/the Psychologist and she says to me, "I had a chance to watch your video, and that is a very different little boy than I got to see last week" She observed him in his OT session last week and he did as expected, "Perfect". He knows when someone else is in the room, and once again, he showed exactly 0 of our concerning behaviors.

I think this has been the best appointment of any sort in a very long time.

After viewing the video [http://www.youtube.com/watch?v=tL6P_QJdZfI] she admits that seeing the behavior in his natural setting leads her to believe more strongly that he is engaging in a very typical autism spectrum ritual that brings him pleasure and serves a purpose --- aka stimming. And I asked her what she thought about the circles/patterns he was running and jumping in and about the incessant asking. Her thoughts mimicked mine. There is not a typical flavor to it, though activity and continuous questioning is quite typical for 3 year olds. He also has no cares as to where he's throwing that ball... he's just throwing it. And followed more results.

I completed a BASC-II last week [as will his teacher, but it is not in yet]. Very revealing, yes! I heard 'Clinically Significant' and in came that flood of emotions where there is a mix of 'Yes! Finally a piece of paper agrees with what I've been trying to get through to people for so long' and 'No, Really? Aww... don't tell me that'

Clinically significant (aka...this is a problem) issues included Hyperactivity, Anxiety, Atypicality, and Attention Problems. Borderline issues included Depression, and Internalizing Problems. He scored w/in a normal range for Aggression, Somatization (physical complaints), and withdrawl (which is important b/c he is enjoying other people, but in an atypical way). The overall picture is clinically significant. She also pointed out that this particular set of questions is normed against typically developing children. If she were looking for a diagnosis, she would have looked at a better gauge of ASD, which would compare him to other children on the autism spectrum. Makes sense. She said that she really gets a good picture between this report, the video, and some of our conversations.

The plan:
Move to phase II of the penny jar. It has not made a significant difference in his 'stimming' to reward those times where he is NOT displaying that behavior. However, we do know that he is very excited about the treasure box and rewards and beleive he understands we are not big fans of his writing. Now, we can reward him when he STOPS or attempts to stop. 'Close approximations' will be a good starting place. She said that our goal should not be to totally take away this purposeful behavior... but allow him a safe environment with a time & place to do it.

We are also going to teach him to take a deep breath and blow out when we are in the midst of stopping the behavior - with the goal being that he would replace the behavior ("hands down") with an anxiety reducing mechanism (blowing air out) on his OWN (at some point) when it is not an appropriate time/place. And if we eventually end up allowing the behavior in a room, or even at a certain time of day, or with a set of rules, wonderful.

And we will be implementing SOCIAL STORIES!!! Which brings up a sore subject for me today. For all too long, I bought into this idea that he was 'too normal' or 'jumping off the spectrum in a couple years' or whatever other mumbo-jumbo is out there. I learned more about autism pretty quickly and admit to really starting to understand after about a year. But it left me with this false sense of what 'therapy' will look like. As if we'll be doing all high-level interventions and he will need minimal support.

What she helped me to understand today is that autism is more about the deficits and not about the abilities. She said that she gets that a lot of 'well trained' professionals are still buying into the idea that you have to flap or you don't have autism. But, the truth is that the deficits and abilities can be all over the place. Low IQ/Low Autistic Behaviors, High IQ/High Autistic Behaviors, High/Low, etc.. It's not cut and dry.

So, my picture of interventions hasn't included an idea that he would use picture cards to reduce issues with transitions --- social stories to get him to potty --- and relaxation techniques. How can he need that.... he's SO VERBAL.

The simple truth is that he does have difficulty with transition...... and he might need a picture of the school so that he will just get OUT and not go through this whole deal about 'I dont like to go to school' every morning.
And maybe he has a hard time following detailed instructions..... and he might need a social story so that he will just get DRESSED without running around the house and wasting 20 minutes. All of these things are ok. I can now feel OK that I'm not doing a disservice by allowing him some extra help along the way. It's ok that he's not just going to 'GET IT' and bam, be potty trained. It's going to take work. I'm ready. Let's go.

Trial: Penny Jar

2009-12-11T01:19:00.002-05:00

The Psychologist suggested using a glass baby food jar and coins to praise DS for NOT writing in the air/finger writing/walls etc. Instead of using CBT, we are going to use Behavior Modification to try to minimize the anxiety ridden behaviors that we think are interfering with a large chunk of his day. Week One, we are to ONLY tell him that we are proud of him when he doesn't write with his fingers, drop a coin in the jar (making sure he hears but does not touch) and then reward after a certain amount of coins are accumulated. We are NOT to say anything about it when he IS engaging in this ritualistic behavior. His reward is one prize out of his new Treasure Box (which he loves). There are sheets to play hangman & dots, mini candy canes, chocolates, and 5 minute computer passes.

Week One:
   Thursday.... I started the day journaling about his behaviors so that I could accurately picture a baseline of anxiety and behaviors from day one. Today was a school day, and OT day, and the Psychologist observed, a day where we went to Target, and one where he was heavily engaged until nearly dinner time. NOT a good day for a baseline. After thinking through my own answer to 'how much does he do this', I asked hubby...who had the same answer, I asked a friend who also agreed, and grandma admitted that she is noticing all the behaviors increasing as he gets older too. I think it's sufficient to say that for every 15 minutes that he is NOT being fully engaged, he IS engaging in these ritualistic behaviors of writing in the air (numbers associated with his play or tv shows), writing on walls (more related to high anxiety), and writing on tables or scribbling on non-existent note pads with his fingers for at least 4-5 opportunities lasting from a couple seconds to a full 5-10-15 minutes. He is spending significant amounts of time intertwining play and these behaviors and it is SO rooted in his day that it is inseparable from most any activity he participates in.
   To begin with, he was VERY excited about his treasure box. He was very happy about us saying we were proud of him for NOT writing with his fingers. We spent the first 10 minutes after introducing him to this new thing constantly finding opportunities to reward him. He picked computer time from the box as his treasure.
   Right off the bat, he wanted to tell us over and over and over and over "I'm not writing in the air, can I have a reward? Reward please, Reward please!" and we explained that he would not get a reward if he was telling us to give him one (because he was not engaging in anything except the fixation on the system itself)
   After a few visits to the treasure box (always picking computer time), he began to incessantly start to chatter. He twirled his hair, raised his shoulders, and gave us a play-by-play of every move he was making as if he was a commentator at a football game. Finally I asked him why he was talking so much. And he says, "Because I'm not writing in the air"
Once the newness of this system wore off (about 2 hours) he incessantly wrote on walls, the air, tables, fake notepads, fake envelopes, etc.... It literally looked as if he was forced to put himself on Fast-Forward mode to get all the writing in that he couldn't do while I was rewarding him. He wound himself WAY up before bed.
Looking forward to maybe a BETTER day tomorrow, I hope.
Questions: Baby Sis will not allow brother to be the only one going in the treasure chest. Do we reward her for 'not writing' or do we use the same box for a different purpose so that she is not left out?
Is there anything we CAN or should do right now to remind him of what we're looking for when He starts in with increased behaviors, in FFWD mode? I was thinking of jingling the change around in my pocket or giving a gentle reminder. OR maybe that is meddling too much?

The Psychologist ~

2009-12-10T10:56:00.000-05:00

A humbling experience I will say.

Usually the first appointment with a new professional has little progress. He's a difficult little dude to understand and I like to prepare and try to paint the best picture I can of the concerns that bring me to their office. The responses to his atypical presentation of ASD range from he is 'High Functioning' to 'Very mild' to 'Are you sure?'. We've had some good experiences [namely current OT] but for the most part, it takes a lot of observation time to finally SEE HIM and SEE his issues.

I am not used to hearing anything 'bad', anything that I actually know to be true... they usually water down my concerns and it takes me either 6 appointments to get to the meat OR they just don't get him at all and we start over.

Not today, my friend. I have YET to be shocked at one of these appointments, in my head, I issue a little challenge --- Alright *arms crossed* I challenge you to tell me something I don't already know.

And today she did.

Q: "So, when you talk about these ritualistic behaviors (finger writing), tell me about how many hours a day do you think he is engaging in them?"

A: "Well, subtract the time he's sleeping, and then I will have to say, how many hours is he NOT engaging in ritualistic behaviors? If you give him 15 minutes, he WILL do it at some point. It depends on how engaged he is as to how much he'll do it. But unless he's glued to the TV or a book, he's air writing, table writing, writing on doors. It's getting worse."

She gave me a little word picture to think about. She said that kids who are engaging in these behaviors & are looking at an OCD diagnosis [not necessarily what we're looking at] ONLY need to be engaging in ritualistic behaviors for ONE hour a day. And ONE hour a day is a real problem. ONE.

*shudder*

She said to me, 'This is a severe problem'

And then, she read some of the results of standardized testing on his IEP. She said that when they look at a child's IQ (132) they like to see how it compares to adaptive functioning. She expects that a child functioning cognitively in the 98% should also have adaptive function near 98%. And this is what I didn't know. Never knew. He is at 16%. 16.

Now, I know that numbers are just numbers... but nobody ever told me that. The score said '86' and I really didn't know what to compare that to... and I didn't ask. All the paperwork we've filled out, all the professionals, and exams... he always 'passes' with flying colors and the professionals look at me like I'm the one overreacting.

That number is significant.

I know this finger writing/air writing is inappropriate, intense, frequent, and taking up WAY too much of his day. It is masked in between typical behavior. And to be frank, I barely see it some days because I'm so used to it. And I'm used to everyone minimizing the problem with it. No solutions. No fix. No help. We can't get him to stop, they can't, I guess it is what it is. I'm overreacting.

Making a correlation between his adaptive function and the frequency of this behavior leads her to believe that a large part of his day is spent in true anxiety and distress.

She said Cognitive Behavioral Therapy is not a good option for this frequent of a behavior. If it were just the doorways when he goes in/out, then she would have made the behavior move to a spoken #... to a whispered #... to a # only said in his head to himself.

So, she wants to do a behavior modification. For the next week, we are to explain that we haven't been rewarding him enough. That we want to give him more rewards and that it makes us very proud when we see him NOT writing in the air. And we are to drop pennies in a jar (so he can hear) when he's NOT engaging in it. And at a certain # of pennies, he gets rewarded. And we are to reward him frequently.

She also planted a bug in my ear about medications. She said that this intense of a behavior is so rooted in anxiety that she sees an SSRI in his near future. But, she likes to start with the least invasive treatment first, so we will try this first. It seemed as if she really understood that parents freak out over the mention of meds. She was solid in her opinion, but wanted to allow me some time to think it through.

Potty and Perfection/Inability to be Wrong took a back seat until next week. She is going to observe him today at OT and see how this tranlates out of the home setting. I honestly can't really remember... I'm SO used to it.

And that's it. Hard day for me. It was the roughest appointment I've been to since June 2 2008.. the diagnosis. I've never heard the word 'severe' attached. And it hurts.

No matter what, I know MY GOD created him. He gave DS to ME as his watchcare and We will trust in the Lord. This is hard. I was not promised it wouldn't be hard.

Game Shows...

2009-12-03T11:01:00.000-05:00

Game shows. They're just a lot of fun? right? Well, if you're ok with winning AND losing, then yes. If you are devastated at the mere thought that something on TV could be WRONG and someone would tell them that they are WRONG and then give a new answer, then not so much fun anymore.

It started with Price is Right. Then the 'bow, bow, boooow' noise showed the disappointment on Bob's face and the contestant didn't win. Then it was Family Feud. The big red X in a big red box sent him into a shaking frightened terror. And yesterday, it was Lets Make a Deal. What was I thinking? He happily watched. He enjoyed the show SO much (I mean, come'on, who doesn't just LOVE it when you are given the choice between 2 doors or cash right?) that he walked around asking us questions like, "Would you like Door #1 -or- $99" with a huge grin on his face.

And then I ruined it for him. Forever more. I didn't think. I didn't protect him. He will not even allow me to talk about Door #1 and Door #2 now. I gave him 2 doors and he picked the one with $0 (which he understands, by the way, to be bad) and he lost it. He shakes. His eyes fill with tears. His face is transformed. And he starts to bawl.

Perfection has been a big deal in our home for a long time and sometimes I wonder if I didn't know what sets off our son what our life would look like. If I purposefully went about our daily life (making changes to schedules, cancelling shopping trips, turning off shows before they are over) would we be a living nightmare? or would we be teaching him valuable life lessons?

But when you see THAT LOOK in his eyes, you cannot mistake it. I don't know how to do it to him. I KNOW that he needs to learn these things, but I think its a slippery slope. I've got to do it RIGHT.

So, we've made an appointment with a Psychologist. Another piece to our puzzle of OT, SLP, DT, Preschool, Neurology, Pedi, ENT, Dev. Pedi, Craniofacial, Gastroenterology, Genetics... and someday soon I will probably be revisiting Allergy [crazy side note: Im wishing they ALL rhymed, because they ALMOST all rhyme but not actually ALL of them, and I am now thinking... OH... this is where he gets it from]

I recently rather enjoyed this post by Hyperlexicon discussing how the Wii is helping her son with some of his perfection issues among other things. We had the opportunity to play a little Wii over Thanksgiving with my brother and DS is not ready yet. He was so ZONED in and I really don't think he or we would ever do anything else until it was safely locked away in a closet. We'll revisit that in a year or two.

POOOOOOPEEEEEEEE

2009-11-29T20:47:00.001-05:00

Sorry for the title. Just a little excited. We got a Thanksgiving present just after putting up our Christmas tree thanksgiving morning. He went POOP on the POTTY FOR THE FIRST TIME! Had to share!!

The Biggest Number...

2009-11-22T17:31:00.000-05:00

I really thought DS loved my workout video and doing it with me because it was interesting and movement and he got to do something with mommy.

....until..... I hear from the other room..... to his sister [who isn't paying him a lick of attention]

"Ok. And 12, 11, 10, 9, 8, 7, Keep it up, 6, 5, 4, 3, 2, one more and..... "

She was playing with the barn.

Boy did he fool me.

Frustrated

2009-11-10T15:26:00.003-05:00

Jen (SLP) brings the same toys each week. While our DT and OT feel the need to often buy new things to keep DS interested, Jen always seems to find a new game for the same old toys. She amazes me. The beloved little chubby cars are an all time favorite for DS and Baby Sis. We've worked on everything from choices, to scripting play, to crashing and tolerance for 'oh-no' with those cars.

Today, we were working on 'Thank you/You're Welcome and Excuse me'. Jen used her little bag of bears to talk about where they were driving to, scooting the cars around saying things like, "I'm going to the fair.... oh, can I ride? .... Yes....Thank you.... You're welcome". DS was playing along quite nicely, taking our prompting and modeling for the Thank You's and You're Welcome's very well. He was amused and enjoying our playtime quite well.

But we realized that when he chose to put a bear in a car or ask for a seat, a Yellow bear could only sit in a yellow car and a blue bear had to ride in the blue truck. Then he started moving OUR bears around because they were in the wrong cars. We all (Jen, DH, and myself) looked at each other and decided to stretch him a bit. I like to call it the SET-UP.

OOOOOH. He did NOT like that at all. We moved the bears about, taking them different places and changing cars. All the while DS was saying, NO NO NO.... as if to say that they really couldn't sit in the wrong color car. NO NO NO!!

After a while of that, he decided it was ok if they sat in the wrong color, but he assigned new colors to each bear and still HAD to sit in the color HE deemed appropriate.

Once we pushed him just over the edge we gave in and Jen asked him if he was FRUSTRATED?? We worked for a few minutes on what FRUSTRATED means. He said, yes, he was Frustrated and we moved on.

Later that evening... DS was at the dinner table writing in the air, squirming around in his seat, doing everything OTHER than eating or engaging with the rest of us. So, we told him to put his hands in his lap and we started asking him questions about his day.

What did you have for breakfast today? Did you go to school? Who did you play with? What did you play? Was it fun?

He was going along with our questions pretty well, although we had to keep reminding him to keep his hands in his lap and no writing in the air to keep him engaging with us.

And then, Did you go pee-pee in your pants today?

.......All joy wiped from his face, he hung his head. Put his face in his hands. "I'm frustrated".........

OH. Sweetheart. It was all we could do to console him and keep our tears at bay in that moment. He's never shown any emotion about going potty or having an accident. Never. But the way he hung his head showed the shame in his mind that he never had a word to express before.

Oh. My baby boy. I'm so sorry I didn't think about how it makes you feel for me to talk about it all the time. I'm so glad you have one more word to express that you FEEL just as much as we do, you just don't always know how to show it.

Sonism

2009-11-04T15:49:00.000-05:00

Speaking to his little friend who is over to play, he says, "Lets go to the ABC store to buy some more things we can play with, it's for 99 cents, ok?'

He cracks me UP!

2009-10-28T10:55:00.001-04:00

DS came RUNNING into the room to request a pen. This happens all the time, so I just looked to make sure he had paper and handed it over. About 5 minutes later, I walked over to redirect him to something OTHER than writing and this is what I found.....

Appropriateness score: 60 year old woman

Funny score: Off the charts!

Note to self: Don't leave the TV on something other than PBSkids when I'm not in the room. Notes for old lady pills will follow.

black & white

2009-10-26T10:24:00.006-04:00

June 28 I wrote a list of all my concerns and things I knew DS needed to work on for the IEP.

Jen told me last week that it is time to reassess his speech goals. When she says that, I know it is my job to be on top of what I know, so we can work together in our expertise.

So, I pulled out my handy-dandy list.

It has only been 4 months since I made that list.
Right there in black & white I can see his progress.

✓ Done
✓ Mastered
✓ Emerging

✓ Will respond to choice questions without any echolalia.
   still having a hard time with the choice, but not echoing our questions!!
✓ Will request "more" without prompting consistently
✓ Will use pronouns I, me, my, you, your correctly in conversation
   very much improved, still not 100%
✓ Will protest words other than "no", such as "I don't know" or "stop it"
✓ Answers/Understands Wh Questions (who,what,where)
✓ Make Observations in environment
   much improved, especially with sister
✓ Respond to greetings appropriately
   much less delayed, more appropriate
✓ Express/Respond to Thank you/Your Welcome/Excuse Me/I’m Sorry
✓ Asks for help from others appropriately/offer help….

The list is much longer, and there are still plenty of things that need work. But just LOOK at those improvements!

Sonisms

2009-10-25T19:56:00.001-04:00

I will coin the word 'sonism': [suhn-iz-uhm] something my son says that makes me burst into laughter and be rendered useless as a parent who then determines she cannot punish him because the 'ism' was just too funny.

Example #1: DS likes to ride his scooter and park it up under the bar. Baby girl has shown him that it also doubles as a nice stool, which he can use to get into everything sitting ON the bar. It is automatic time out if you are caught standing on the scooter. So, tonight he was standing on said scooter and I had to ask him, 'What are you standing on?'
To which he responds, "The Promises, Mommy!"

♫ Standing, standing..... standing on the Promises of God my Savior... ♫

Example #2: I have been trying really hard to explain the difference between when his underwear is wet or dry. I have him touch them so that he can feel it and then we discuss. There is a LOT of potty talk around here lately. So, when he got up from nap, I asked a very normal question "what is in your underwear?". Usually the response is 'Nothing' or 'I don't know'. Well, this particular day, I pushed him because I thought he had peed. I forgot to ask if he was wet or dry. So, when I asked, "What's in your underwear?"
He responded, "My Butt"

Preschool Reflections....

2009-10-25T19:24:00.001-04:00

Is it really almost October?
[I started working on this post September 28]

DS started preschool the first week of August. His first quarter is over. Today is our first day of track out and I have both my babies and nowhere to be for the first time since June 18th (I just looked it up). We had 'happy face' pancakes (among other healthier options) for breakfast, played, and just enjoyed our day. No major meltdowns by either child or myself. Both kids are gloriously SLEEPING at the moment.... and I am writing in my PJ's at 1 o'clock in the afternoon. I do not feel bad about this at all!

It has been interesting.

For the first 4 weeks of school, each morning was a struggle to get him out of the car and into the school. I have to carry baby girl into the school too, and so when he tries to run away from me or lay on the ground instead of going in (its about a 20 yard walk) it is very hard for me to 'control' the situation. In the afternoons when I picked him up, he was sweaty, red faced, disheveled, and generally agitated. He only wanted to exit the school from one specific door. He couldn't handle if I was there before he left the playground. He refused to eat breakfast [in class] with the exception of a couple of mornings. And when I picked him up, he whined to me 'I want to go home'.

12 kids are in his class. All have an IEP - yet I do believe they are a wonderfully diverse group of kids of whom MOST challenge him socially. I believe this is the #1 reason for all the anxiety. And it's a good reason. This is the first time he has been challenged in this type of environment.

He did surprise me, though. In the past, it would take him several visits by a new therapist, etc.. before he showing ANY of his negative stereotyped behaviors or difficulties. My prediction for school was that it would take him a couple of weeks to show anxiety and behavioral issues. It took all of ONE day. I guess 3 hours was enough.
I was told (multiple times, but mostly by his DT) as soon as he was challenged to do some things he couldn't master immediately or any sort of demand was placed on him, I would no longer be able to question the Autism and negative behaviors would ensue. That is and was and continues to be true.

I have gone from constant questioning of whether the oddities of his development were explained by autism (prior to the IEP)... to a better understanding of autism in general... to a better understanding of my son, period. I listened all too many times to the tune of 'your child isn't severe enough for services' & 'autism, you're crazy' & 'he won't always be on the spectrum' & 'he's just smart'.

Well - he is NONE of those things. He is wonderful, bright, awesome, intelligent, genius, beautiful, has autism, funny and ALSO has a future. There is no question. He is not the poster-child, especially a media born one... and there are certainly parents who deal with a lot more than we do... but I am making progress through the 5 stages of grief. I do not grieve my son. I grieve what I thought being a parent meant. It is a wonderful and horrible and eye opening experience. And it is necessary. It will eventually work it's way into my unwaivering knowledge that THIS is so much better than what I thought, but I'm not there quite yet...

Denial: believing that he would somehow jump himself right off the spectrum after we fixed him.

Anger: I'm not an angry person, so I believe this to have played out in my anger towards those who wouldn't believe me and didn't support us.

Bargaining: What therapy, what is perfect, what can I do to get him off this spectrum. What will fix it? Is it autism, is it hyperlexia, what best explains away everything? maybe it was birth trauma... maybe we're wrong... maybe if I tell no one, it'll go away...

Depression: .....for me I think manifests in my sadness when the differences between Neurotypical and ASD stare me blankly in the face. These moments come and go. I think it's normal. I think it's a process that has to happen. I don't like it.

Acceptance: not there yet

***********************************************************

...back to preschool

At the same time he was pent up with anxiety from all the work at school... he was doing new things at home. During this first quarter I was happy to post quite a few successes and awesome things happening with him. There were certainly others - new words - new questions - a new level of play with his sister - some potty success... etc. And I was SO confused.

How is it that he is so ridden with anxiety after a day at school, but for the first time EVER finds the words to ask me to snuggle with him and hold him? How is he doing so BAD and so GOOD?
One call to Suzanne helped to explain. He IS learning some really important stuff at school, but it IS really hard. So, it's both. And there lies the behavioral stuff that has surfaced.

At one time I might have told you that we are just beyond PECS and a lot of intervention techniques that a lot of other kids need. But, what I have found is that there is a really fine line between being supportive and asking too much of him. So, we went back to some more basic supports.

I am still trying really hard to figure out that line most days... but we have implemented a potty PECS routine and a hand washing PECS routine in the bathroom to help him be more independent as he works through the steps. It also helps mom keep her sanity so I don't have to pick a fight over putting pants back on (or whatever it is that he decides that he's not going to do) constantly.

When the first 4 weeks of school were done, he really loosened up. He is still very challenged, but more directable. Some changes over the quarter:
Once aloof during rug-playtime (usually up staring at the room calendar) - he is now attending to parallel play for an increasing amounts of time.

He is wearing undies to school on a regular basis. He is not bowel trained in any capacity, and is fully prompted to toilet, but it's an improvement.
Much improved demeanor during school and when I pick him up. More often than not, he started telling me that he didn't want to leave school.

[fast-forward to Oct 25]
His 3 week break is over. We've completed his first week back to school. This has been the best week yet!!! I am so happy to report that he acts as if he really missed being there. He has communicated well, played well, and listened well. He does have some of that anxiety back that he didn't have (shrugging shoulders) before, but he is also challenged in his classroom again. I think it's working.

MRI & EEG results are in

2009-09-03T21:31:00.000-04:00

MRI is normal. EEG is abnormal. Nothing physically wrong, but neurologically, his right temporal lobe has periods of lower functioning. She said the 'slowing' w/o physical evidence of damage [via MRI] shows her that he basically is at a higher risk of seizure, but no guarantee & it more likely just paints a picture of what we already know. Some of the difficulties of Rt temporal lobe dysfunction would include: 1) disturbance of auditory sensation and perception, 2) disturbance of selective attention of auditory and visual input, 3) disorders of visual perception, 4) impaired organization and categorization of verbal material, 5) disturbance of language comprehension, 6) impaired long-term memory, 7) altered personality and affective behavior

Hey. That fits.

I really loved the neuro. She explained everything in plain language. Did a thorough exam, and took time for us to explain 2 situations in which we felt he really may have had a seizure. She agreed they concerned her, but since she doesn't see permanent damage, she won't be interested in a longer (48 hour) EEG unless he has another episode that is concerning including no arousal from physical touch. That all made me feel better.

And, to top the cake with a cherry, she is very interested in further autism research and will keep his 'case' open in the event there are any breakthroughs with research pertaining to genetics, brain studies, etc... She said that if they find out anything groundbreaking in the near future, they likely have all the info they need, and just don't know to look at it. So they would use existing data first.

The last thing she is going to do is get the genetics testing back from that hospital and make sure they did/found what she would have sent out for. Since he had ear tags, they look to see if there was any genetic reason for him to have a mutation.

Sounds thorough to me. She put to rest some of my questions including the possibility of brain damage from birth via vacuum. She said his brain is HEALTHY as it can be and there is no sign of ANY damage of ANY type from fall, bump, etc..

Quick Hit: Clocks

2009-08-25T21:11:00.000-04:00

So, round about noon today, I learned something new about my boy.

I'm fairly certain it will explain itself.

DS: "It's 12 o'clock"

Me: "Yes it is, look at this clock, it says 12 o'clock too"

DS: "No. That's 11:58"

Me: "uh...................................You are absolutely right!"

I'll Love you forever, I'll like you for always...

2009-08-15T12:43:00.000-04:00

As long as I'm living, my baby you'll be.

I guess you don't really wake up and expect a miracle on a miracle day. The day is going as it usually does and I suppose miracles usually just sneak their way in....

I own the book 'Love You Forever', and it has always held a special place deep down. I think most mama's have a bittersweet taste as they read it, and I imagine most don't read it without a box of tissues handy.

But for me, it holds an even more special meaning. When I pick up my boy and rock him back and forth and back and forth and tell him I love him forever and like him for always..... he really does have to be really asleep.

He is so sweet and shows me in many many ways that he loves me. But, not by holding me. He never has. As my first child, and a baby, I never understood why I couldn't carry him on my hip. If I tried... he'd just hang off. He would never put his arms around my neck or even just grab my shirt or arms. I can even remember the last time I tried to snuggle with him. We used to always lay on the couch, snuggle up and watch ELF when he was tiny. But as soon as he had a little mobility, he would arch away. As he got older, we noticed he yelled when we tried to hug him in bed or tuck him in or especially when silly mama tried to sneak in bed and snuggle. Then, one day we gave him the words he needed, "I want to sleep by myself.' Which was a blessing, even though it stung a little to hear it every time I got close. He knew what he wanted and could express it.

Baby sis has moved back in the room with Big brother. We needed the office space, so coordinating naps has been a challenge. She went for her nap first, Big Brother was reading his books, and I was feverishly working on a new reward chart (stickers for 'good choices', subtract stickers for 'bad choices', and 8 stickers = 15 minutes on PBSKids.org) so I could show it to him and get him working towards 3 stickers if he made the 'good choice' of staying in bed. He seemed excited...

And then....

.... he grabbed my hand, "I want to take a nap, Mommy" and led me to his room.

"Well, ok, you can take a nap... make sure you use your good choice and stay............... "

"can I snuggle?" He grabbed me around the neck with both arms, holding on so tight, like he would fall if I even moved a muscle. "can I snuggle?"

"Yes, sweet boy, I'll snuggle with you"

"ok, mommy"

I layed on the bed in tears as he gripped around my neck and twirled my hair. I tried to pull away at one point, "No, hold me."

I didn't even know he knew to say that....... I continued to lay there as long as he wanted to hold me. After about 10 minutes, he moved to the side - flipped onto his belly, "You lay beside me." ....and then he fell asleep.

My incessant sobbing kept making him jump and Baby Sis reposition in bed, so I thought I'd better leave. But I could've laid there FOREVER.

I KNOW that God is working on me... teaching things through my children day in and day out.

"Those who sow in tears

Shall reap in joy.

He who continually goes forth weeping,

Bearing seed for sowing,
Shall doubtless come again with rejoicing,
Bringing his sheaves with him."
Psalm 126:5-6

Lord... you have my attention.
Thank you for being in control and not me.
Thank you for the hard places....

I hurt at times
But You always show me
why it's so silly to
be sad over the creation
you have placed in my care.
The deepest things I have ever felt
YOU have shown me.
Thank you that no one else can take
credit for the miracles You perform.

My HOPE is in you Lord
My STRENGTH is in you Lord
My LIFE is in you Lord.

"F" Words

2009-08-11T17:45:00.000-04:00

For a while, Jen (SLP) has been testing the waters with 'F's'. He

has always used a 'Th' sound, and part of the problem might be that he is missing a front tooth, but Jen doesn't seem to think that is the whole problem.

Yesterday she asked me for a mirror after witnessing the F's not getting any better. She sat right behind him and just had him bite at his lip over and over, like she was doing, all while watching in the mirror.

A few misses and then BINGO!!!

'Ffffarmer, Ffffarmer, Farmer!'

We congratulated, worked a few more minutes and then moved on.

She said that sometimes you just have to wait until they're ready. She was right.

So, today, I was celebrating for him as he figured out other 'F' words to say correctly.

If you've ever watched So You Think You Can Dance, you'll get my reference.

"Ffffoot"

"Good Job! High Fives!! You're on the Hot Tamale Train!! WOOWOO WOOWOOO!!"

And, the rest of my day has been like this:

"Foot, Feet, Flower, Fireman, Farmer, Farm.... WOOWOOO WOOOWOOOOO....Hot Tamale Train!"

Good Week!

Two firsts at dinner.....

2009-08-07T21:16:00.000-04:00

I don't know why I held back my tears when it happened.... I guess so I could be strong for my boy. But, I am NOT holding them back as I write this.

Our first week of school is over. DS hasn't been eating well at school [they serve breakfast], I can tell because he is hungry enough to tell me when he gets to the car. Tonight at dinner we had a host of favorites; Chicken Nuggets, Green Beans, Potatoes, Mac n Cheese. Both kids were happily digging in, when baby sis decided to start playing with her milk.

As usual, playtime ensued. She shook her cup back and forth, and he did too. However, his is an open top cup. 'Uh-Oh!' says mommy when it spilled. And the tears started to flow. He was so upset. His little lip was quivering, he was heart broken.

In the midst of sobbing, he managed to get out, "I'm... sorry ....for ...spilling... milk Daddy....'

What did he just say? What did he just fully understand? What?! What!! WHAT??????

Dad and I looked at each other in amazement and felt so sorry for him because it was SUCH a sweet first for us, but it was just an accident and he felt so bad he could barely get the words out.

Then, "Can... I ....help clean up ....milk?"

What did he just ask? What did he just fully understand? What?! What!! WHAT??????

Sweet sweet firsts. Sweet sweet understanding. I am amazed beyond words tonight.

Funny Things...

2009-08-06T12:14:00.001-04:00

As a Stay-at-home-mom, I become complacent to see hilarious things happen around me all day long that just seem normal.

I've never thought about DS's little morning routine until THIS morning.

DS gets up. Earlier than usual. Dad and I are sitting having our morning coffee and daily quiet time. The lights go on, the lights go off, and then he sits on the couch.

I never blinked.

Dad, looks at me and laughs, "Did you just see that? He just turned on the lights. It looks like he is sleepwalking."

We both laugh.

Later, I called dad for one reason or another. He was still relishing the morning happenings and asked me if he went off to school ok? I asked him what was different about the way he woke up, and he responded that he looked like he was sleepwalking the way he just came into the room with no greeting, turned the lights on & off, scratched his head, and then sat down.

I laughed a little harder.

"OOOOOOOOOOOOH. That! I wasn't sure why you were concerned. He does that every morning."

"Really?!"

"Yeah. I can be standing in his path and he never even looks at me. He runs out of his room. Flips on his light, hall light, livingroom light, and then sits down. It used to be the TV, but now he just turns on the lights."

We both have an even better laugh. Realizing that we just get to see things that other parents don't. And we enjoy that.

The EEG Results

2009-08-02T14:56:00.000-04:00

I really didn't expect to get ANY results from the EEG.

I expected it to be one of those phone calls like I've had so many times, "Is this mom? The results are normal at this time." But,When you hear the Doctor is on the other end of the phone, you know that's not what they're going to tell you.

~Abnormality in Right Temporal Lobe

~Slowing for brief periods of time on & off

~No active seizure activity within duration of the test, but there is an elevated risk

Doc also mentioned that it could be something as simple as a cyst, but an MRI would possibly show lesions if they are present.

She basically said that he has an elevated risk now, and even if the MRI does not show any additional information, he will be monitored from here on out.

The Developmental Pedi does not read the EEG, we will have to schedule an appointment with the Neurologist who wrote the report to discuss the results in more detail. We will have a Head/Brain MRI this Wednesday to follow up on his head trauma at birth, and now to follow up on his EEG results as well.

My Google search found quite a few things supporting 'Right Temporal Lobe Abnormalities' as being associated with Autism. It was quite interesting to read that it contributes the sensory system, language development, and aggression.... however I don't really want to know TOO much. Only HIS brain is going to tell us what we need to know.

Any experiences out there??? Questions I should have ready for the Neurologist/MRI??

Holding fast to the knowledge that God is the one who created this little miraculous boy.... He knows what his purpose is and I am actively searching for what HE wants me to learn. One is certainly WORRY does me no good.

Talking... er.... Reading the PHONE....

2009-07-24T07:00:00.000-04:00

I cannot bypass posting this one ;)

We use reading/spelling/numbers as rewards around here all the time. Ask me how to get my 18 month old to do something & I have NO IDEA --- but DS will do almost anything for stated rewards.

I was talking to his Memaw on the phone last night. I tried to get him to talk and he directly told me, 'No'.

A few minutes later, he came back. 'My turn.'

'Ok, talk to Memaw, but no numbers'

As he put the phone up to his ear, he was looking as hard as he could out through his peripheral vision to see those numbers as it went past his face. He couldn't stand it after about 2 seconds and, before even saying hello, had the phone back down and started reading it.

We went through a series of giggles as he TRIED to read and I redirected. Finally I said, 'enough, no you can't talk if you're going to read it, all done'.

He left for a few minutes.

'My turn', again.

'Ok. You can talk, but NO numbers. You could say.... hello. how are you? what are you doing? I love you. Bye Bye. But NO looking at numbers.'

He got a sneaky grin on his face, 'OK!'

"hellohowareyouwhatareyoudoingIloveyouByeBye....... '

*looking at numbers*

Memaw and I could not contain our laughter for nearly 5 minutes. OH MY! Well, he DID say everything I suggested. The reward system is working SO WELL. HA!!

Urinal Update

2009-07-13T22:36:00.001-04:00

Who knew I'd ever have 2 posts about a urinal... ha!

Well, all my hopes and dreams were crushed tonight. Not really, but teacher #1 and I were rehashing how hilarious last night's bathroom festivities were and I found out that she wasn't talking about the URINAL.... she was just talking about him standing at the potty. No bother, he's never done that at home either.

She reenacted [at dinner] in full how much too TALL he was to go pee-pee standing on the stool. And how much too short he was to go standing on the floor. Let me just tell you - watching a 30 something lady reenact a boy potty scene AT DINNER was enough to put me over the edge.

Anyway, tonight, teacher #2 took him potty. Of course, he told them YES he needed to go (this is almost always his answer). I am picturing his pants and diaper in the floor of the bathroom - thrown wherever they came off. Complete with naked bottom, Teacher #2 is helping & he doesn't REALLY have to pee. So, she says that he is holding the little thing, "Come on pee pee, Come on pee pee, Come on pee pee" because it is just not acceptable to GO to the bathroom and NOT pee. She said that finally he dribbled a TINY bit and then reached towards the water to touch it before she stopped him.

Ahh.... I guess my potty stories are JUST beginning. I do, however, think that if there are other kids going potty at his school, he's going to pick this up QUICK!

I got to watch him get in line from the playground and walk in so good. He got out of line a couple times, but listened very attentively when teacher #1 told them to get back in line.

VBS night 2 - went well! Theme: Urine....er....I mean.... The life of Peter

Good times!!

The Urinal

2009-07-13T06:29:00.000-04:00

Last night was DS's first night in 'big boy' VBS. I was SO busy with setup, etc... I didn't have time to remember to freak out (I know that was from you, Lord, thank you!). Prior to this week (seemingly the busiest I've had in 3 years) I was quite concerned about transitions and how DS would do moving from class to class with his peers. I had planned to talk to one of his teachers to make sure they knew to keep a close eye and maybe discuss a couple key issues. I never did that. I still hesitate on that. I want him to have the opportunity to reach ANY potential possible, and I'm so afraid that someone who does not understand 'the label' will treat him differently. It is just ONE week. Not a whole school year.

So, I settled on asking a couple of the teachers how he did and testing waters on whether I needed to step in at the end of the night.

Our night began: All the kids get a sticker for identification. I wrote 'diaper' on his so they'd know that he is not potty trained [because for whatever reason I figured all the other 3 year olds would be, but it's a young class and not all of them are]. I am a 'guide' for the 4 year olds, so I was right there as we all gathered in the big room. DS Teacher #1 came over and asked me about the 'diaper' note and I stated above. She asked if he needed to go potty at all that night, and I stated that he is not actively training and he is welcome to go, but will need a lot of help.

Low and behold if that boy didn't GO with everyone else, walk in, take off his pants, pee IN THE URINAL with a 'couple of dribbles', somehow get his pants back on (maybe help??), and went back to class. Hey now, I was supposed to be there for his first URINAL experience....

My BIG BOY did so good. Of course, the FIRST time they thought he went to the potty, he was just there for moral support watching another boy and then clapping in congrats that he went pee-pee. I wonder what that poor kid thought. LOL Bet he's not used to an audience.

Other than that, the only comment I got from a teacher was that he purposely threw his napkin on the floor at one point. I don't know what that was about, but I'll take it.

Night #1. Success.

Now, let's see how much night 2 changes & how he does with that. Worried mommy has higher hopes for tonight.

The art of Storytelling....

2009-07-08T07:27:00.000-04:00

I had the sweetest evening with my little boy.

We had another hard/long day yesterday. We spent an hour at a well visit for Baby sis (everything is good, & just one shot), then we headed to spend 5 hours at church working on props for VBS. Both kids really enjoyed themselves, but DS would not nap. He got really wound up and by the time we were home, he was just off the wall, talking gibberish, and not listening.

I knew that this was in part from the long day, in part still recovering from two long weekends, and in part from our routine being flipped upside-down.

I got baby sis in bed, and then headed to work on him. He was NOT having it!!! I left him to get his PJ's and instead of getting 'Pajama shirt and pants', he brought me 4 regular shirts. Then, when I walked in his room, I found the entire contents of BOTH drawers and the cabinet on the floor. UGH!

So, I took him to the livingroom and we wrote out some social stories about our day. I would write most of the sentance, "Today was fun. First, mommy fixed _ _ _ _ _ _ _ _ _" and then leave the rest as a fill in the blank for him. He thoroughly enjoyed going back over our day this way, but he wasn't winding down.

Then, he sat on my lap and layed his head on my chest (like he NEVER does). I said, "Why don't you let Mommy just tell you stories tonight instead of reading". I proceeded to tell him what I could remember of stories like The Three Little Bears, and Rumplestilskin (because i thought he would like the silly name, and then I remembered what a horrible story it is, so I left out big parts). He was laying so still and he was SO intently listening, I just kept telling him one after another. Finally, I started asking him questions. He actually processed parts of these stories with NO book & rattled answers back off to me with precision.

Then, I said, "Would you like to tell Mommy a story? Maybe a story about a fish"

And he said, "Once upon a time, there was a fish. Fish was swimming in water. The End."

And I responded, "How about a story about a Farmer and his animals"

And he said, "Noah and Ark. Animals in the boat. The End."

And I said, "What about Jonah and the Whale? Can you tell Mommy that story?"

And he said, "Whale swimming in the water. The End."

I think I would have sat there until midnight going back and forth if Dad hadn't walked in.

It was so sweet. He sat still. He layed his head on my chest. It was just a regular little conversation. I'm telling you, I needed that this week. He is so awesome.

Thank you God for victories like this. I KNOW that you allow us to walk through the fire sometimes so we can see what is on the other side and KNOW that YOU have provided it for us.

Joy, Trials, Patience, Wisdom.....

2009-07-06T22:04:00.000-04:00

I began my day today reading James 1:1-5

I KNOW that when I am obedient to read HIS word, it will be used. Most of the time, it relates to someone else; an encouraging word, a conversation, etc... but when I read about Joy in the midst of Trials.... I should ALWAYS know that it is going to be a day testing of my faith.

We went to church this morning to work on some props for VBS. There were several other kids there. Pretty much we had the hall to ourselves; the kids had a TV, lots of toys, and space to roam. I thought to myself, "Here's the perfect opportunity to give DS a little social interaction."
Everyone always tells me how great he does with other kids. But all I saw was him sitting in a corner reading. Then, he ran up and down the halls. Then, he played with the doors on all the car toys, then he swung a hockey stick around the room with no awareness of the other kids. He never interacted. Not once. The other 6 kids had toys thrown from here to yonder & he MIGHT have put his hands on 3. To boot, he wouldn't listen to ME either. He's been better about that.
Then, he was with the babysitter (and sis) for a few hours while I went to the dentist. He was pretty good for that, other than a diaper change outburst (which ended up being a problem because he wanted to go potty - but he already WENT in his diaper, so he couldn't and he doesn't do well when he already has something in his head).
As soon as I got home, we had to eat. He has refused breakfast today. Only ate Peanut Butter for lunch, and basically refused dinner too.
Then we left for a meeting (which I knew I should have kept the kids home for instead of going, but we went anyway). Baby sis ran like a crazed animal for 2 hours & DS just sat there. 1 hour with the Study Bible. 5 min's, again with the doors on toys. A little running/circle time. Then, the rest of probably 40 minutes played with a calculator.
Am I just noticing it more? Are we just in more circumstances where I see it? Is he just getting older and I'm seeing the delays more? Is he having a hard week?

Yeah. Hard Day. Everyone has them. I know.

God.... today..... I will need YOUR wisdom to perfect that JOY in my heart. I am imperfect. My first reaction is to cower into a ball of tears. But I know that YOU know the bigger picture, what YOU created him for, that he will be just fine. That he is your child. I just need YOUR wisdom to comfort me in that tonight.

IEP Goals in more detail

2009-07-01T08:55:00.000-04:00

GOALS: (i will list one from each category, since there are well over 25 total) They explained to me that goals can be academic or functional. All of DS are functional.

SelfCare/Safety: Request somethign to eat or drink during mealtimes and/or at other appropriate times, at least 2-3 times across each week of services. (other goals about toileting, washing, and safety)

Emotional (Regulation): Choose from two acceptable options for responding to an identified emotion a) when choices are presented visually by an adult b) by using a visual choice system on his own, for at least 3 of 5 situations when his emotional state is limiting or preventing him from engaging in activities. (other goals about identifying emotions, redirection)

Social: Verbally initiate a social interaction with a) an adult b) a peer, during at least 1 of 3 informal group situations (i.e. snack or mealtime, play session, recess, etc.) (other goals about following directions, turn taking, participation in cooperative play, response to frustration, attention)

Play/Independance: Maintain engagement with an adult-directed hands-on acticity (craft, construction, game, etc.) for a) 5 minutes b) 10 minutes or until complete, with no more than two individual redirections, for at least 3 of 5 opportunities. (other goals about following directions, choices, transitions, problem solving, redirection)

Language: Answer fact-based "wh" and "yes/no" questions regarding a)current activities adn routines b) information requiring recall for at least 4 of 5 consecutive opportunities across settings. (other goals about pronoun reversal, using verbs, maintaining conversation, following directions)

IEP Results:

2009-06-30T16:36:00.000-04:00

The meeting went very well, actually much better than expected.

The 17 page report that describes a well rounded picture of my boy was read off to me in brief. Multiple areas were described as being noted during the 3rd observation - which made me feel really good I pushed for it. A couple items I was NOT aware of that were reported were his IQ (DAS II), which tested at 132; and his Visual-Perceptual skills which tested above what any of this team had ever seen. [This is a test with a series of blocks that are used to create structures matched and then remembered, as well as being timed. He never missed one] The Ceiling for the test is 90 & he scored 90. However, this was another great picture of his 'skatter' of skills as he did not test THAT well on the other parts [though they were all between average and very high somewhere].

Alot of paperwork later.... he was determined eligible through the Autism Spectrum Disiblity Eligibility requirements.

~~~side note~~~

Last Tuesday when the Psychologist was at our house, she told me that he was not impaired enough to qualify under ASD, they were having a hard time qualifying him under DD and began giving me other options for settings where he could benefit from time with typical peers. She also told me that he would not benefit from one of their settings because all of the children have IEP's. This whole process goes to show that NOTES and REPORTS and PHONE CONVERSATIONS with current THERAPISTS, as well as GOOD observations across professions are VITAL to this process!

I took a deep breath as I read the paragraph that detailed his eligibility & support diagnosis of Autism. I KNOW it, but it always hits a little hard when it's in black ink.

On to determine GOALS. The general categories that were either proposed or suggested by the team (including myself) were all functional goals:

Self Care/Safety

Regulation (Body/Emotions)

Peer Social

Independant Social

Pragmatic Language

He also has a blanket OT service that has no time limit to incorporate sensory into the entire plan. She can come everyday or once a month, depending on his needs.

SLP is stated as 4x/30 min for each reporting period (approx. 9 weeks)

The placement is for a Part Day, Developmental Delay classroom. All the children have IEP's, but there are varying issues. The instructor is trained in Birth-5, but usually has added training & I was told that if they are not fully trained on the issues that are presented in their classroom - they receive specialized training [in theory]. The actual SCHOOL placement will happen within the next two weeks. They are looking at a school that is not the closest school to our house, but has a teacher with more experience in ASD. We won't know if we will get year round or traditional until then either.

I am very pleased with this placement. I feel that other kids will have something to offer him, he will have things to offer them - but it will be a less threatening environment with a little more support and less kids.

How in the WORLD do teachers keep up with all these goals? Hats off to the successful ones!!

NOW I have to actually LET GO and let him GO to this preschool.

It's Monday (aka. IEP Day)

2009-06-29T07:08:00.000-04:00

Prayerfully walking through today..... walk with me!

God knew I needed a little tidbit to calm my spirit this weekend. Jen spoke with their SLP on Friday. She sent me a message to tell me they talked, and it looked like we would be getting a class based assignment. I needed that!

Thank you Lord for being our creator, the all knowing, and everywhere all the time! You know what my inner most faults are, my inner most needs are, my thoughts, my feelings.... Please be with me today....

Update later...

Observation Day Part 3

2009-06-26T11:21:00.000-04:00

Today the SLP (Liz) and Special Ed. teacher (Jeff) came for my requested observation. It was MUCH lower stress than Wendy's observation and in my opinion, they saw a LOT of stuff they needed to see.

Jeff did the play. Liz did the notes.

He knew all the right questions to ask and the right way to go about all their interactions to get the desired responses. When Liz wanted him to do something specific to address a specific concern, she would let him engage. DS can't mask his pronoun reversals, echolalia, delayed choices, deflecting coping mechanisms, labeling, and rigidity. I am very pleased that they came to observe because now it's not just ME saying it - they saw it with their own two eyes. It was actually QUITE a different experience with these two. They seem to understand HFA a bit more than Wendy b/c they picked up on real subtle things that I felt I had to show to the other lady OR she would pass them off as typical.

In the end Jeff said we would work hard as a team to figure out what would help him best to get him up to speed with other kids 'well before it's time to enter school'. Sounds promising. I think I can de-stress and relax a little now.

Here's one mama who is ready for Monday (the IEP) to come and go. At that point, we will have a plan in place. We will continue with SLP and OT during the summer. We have goals all worked out with the both of them. And we can return to somewhat normal life.

Lord, thank you for some rest and peace. You know this is what I have been asking for! I am thankful for harder times like these because I get to see you more fully. Your rest, your peace, your kind of JOY and wisdom are all I really need. Forgive me for getting so worked up!

"we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, HOPE."

romans 5:3-4

Observation Day Part 2

2009-06-26T06:48:00.000-04:00

50% Old Wise Cynic: CONFIRMED.

As I wrote in the previous post, the School Psychologist (Wendy) was planning to re-visit to observe DS in his natural setting. They usually prefer to see them in a school/daycare setting around other kids, but we don't have that -so- home with sis was the winner.

I planned for her to come while Suzanne was here. I knew Suzanne would be readily available if DS was having one of his unusually calm days - to display a behavior or two. When he has to work really hard for her, it gets him all riled up. As I said before, he had displayed exactly ZERO behaviors for them at the eval.

I took a couple things away from that experience:

1. I was pretty certain Wendy was quite skeptical that DS even has issues that need to be addressed. He thrived, aced their standardized test (which he broke - really - not ACED), and didn't have any trouble at all. I expected that. However, professionals should realize how subtle some of this stuff is & the fact that many like DS fly under the radar until they hit 1st or 2nd grade only adds to my confirmation of that!

2. I became concerned about the SLP's (Liz) comments and body language; stating that 'she had seen everything she needed to see' and didn't need to observe him at home.

3. Overall UN-impression with the OT who continued to have no contact regarding trying to at least sit-in on one of our OT sessions, since she was unable to spend more than 20 minutes at the eval.

So, prior to this Home Observation, I emailed Sally. In a very non confrontational -yet- direct way, I let her know all of these things. She got to work - got the OT back on her feet to at least call and talk to our OT, which I felt was important because no-ones notes are ever going to be so exhaustive that they explain every detail. I guess the benefit is that if she gives me much trouble at the IEP, I will not hesitate to remind her how much time she actually spent with my little one.

She got another observation set up where Jeff and Liz will be coming to the house [this morning]. However, I also got a phone call from Liz who was upset that I 'felt like she didn't care' which I never said. OOPS!!! I really really spent a lot of time on that email so that no one would come away from it feeling like I was being overly critical of a process I know little about. The one line I could NOT leave out, though, was probably the kicker, "I would like to make it clear that it will be unacceptable to me if he is denied speech help without any outside observation." I've been warned not to be too defensive & go in acting like they are out to get us ---- but I also have to look at this process and make sure they are getting everything THEY need to make an informed decision. I guess I could have just requested an observation, but I felt this was more effective. If nothing else, it worked.

Wendy came on Tuesday.

She was here earlier than Suzanne, so we had some time before the session. DS was his usual self in play. I set up the living room so there weren't any toys out to begin with. They were all around the perimeter. I asked him quite a few questions to try to coax him to GET a toy and PLAY for her like she came to see. (noted: didn't initiate play independently or jointly with sis; typical for him) I finally picked blocks. He made a 'boat' and a 'house', which are very scripted items. I also tried to get him to make a nondescript item like I did and he copied it exactly. I encouraged him to no end to make something different. Nope.

After a while of him Persevating on her Laptop instead of playing with anyone, I told her that the real picture of his play would be if we backed off and tried to talk. He always gets REALLY upset if any therapist and I try to talk. Of course, this Wendy was new, so he wasn't all that upset about it. But, he did use some atypical behaviors to get her attention back (noted: grunted and got in her personal space to get attention).

Before we left him alone, he wrote in the air, jargoned quite a bit, and also did this really funny thing where he stood at the couch and 'journaled' while making funny mouth noises and talking under his breath. (noted: that was weird)

We headed out of the room. When we backed off, she proceeded to tell me about other options (other than preschool) where we could foster involvement with typical peers. She said to me that nothing seems to be the right fit for him and they are trying their hardest to figure out what he needs, but he is not impaired enough to be put in a class with all children with IEP's. I asked her about the mainstream programs & she stammered around and said that they were really programs that children who need FULL DAY support are usually placed in.

[At this point, I am appalled that she has admitted they have NOT had any sort of group meeting to discuss the other professionals findings/observations, YET she has already made up her mind and has decided he doesn't qualify. Steaming!!!]

THEN. She lit into this story about the 3 boys she nannies. Basically they are really smart. And they don't have good play skills. And then she says "and THEY by no means have Autism". [thinking to myself what the purpose of this story is... conclusion... comparison to DS's genius and play skills, which were the only observations so far.]

I made it VERY clear and precise for her that certainly any child with that profile has ONE piece of that 'autism' puzzle, and while QUIRKY nonetheless, does not have autism. It isn't until you ADD 1 + 1 + 1 + 1 together that you have ALL the pieces and a child actually DOES have Autism. And she says, "To tell you the truth, I have yet to see that sensory piece at all".

I laid it out for her: THIS is where you need to take MY comments as a part of this team and trust the information provided to you via his therapists who have known him for all this time. They all have very detailed notes and are all willing to do anything it takes to get all of you the information you need. Certainly there have been children before who 'test' well. But, his entire EI team are in agreement that while he may 'fly under the radar' at first, is clearly impaired and needs additional support so that when he DOES get to kindergarten he will know how to thrive.

At that moment, Suzanne came.

Long story short [because I'm getting too long winded here], Wendy's eyes bulged out of her head when she finally got to SEE it. I could see her watch in amazement as this Quirky Genius turned into a child with Autism before her very eyes. I really cannot say WHAT she took from the experience of his behaviors - except for 5 pages of typed notes. I asked her as she left if she saw anything new that helps put all those pieces together and I got a definitive, "YES".

TOTAL exhaustion.

I cannot STAND this. Focusing on his impairments is like the worst thing you can ask a parent to do over and over. Yet, because of the way he presents, I have to. It is very clear to everyone on his team, myself, and some others in his life that there is no longer a 'grey-area' for him. I don't have that question anymore, "Is it really autism?" Yet, as all of his team have said to me on multiple occassions - because of the way he presents at first, he is at risk for falling between the cracks. He has an endless list of potential - and I am so thankful for that. Not every parent can say that.... not every parent gets to see this hope so early, so blatant, so quickly. I have that. But I also know that he's going to need some support to get there. Please somebody, help me out here. I can't do it all by myself.

Next observation: 9:30 this morning. SLP and Special Ed. teacher. Now I have to figure out why it is that I made them come.... hmmm... what do THEY need to see? Back to the grind.

Silly Talk

2009-06-20T23:23:00.000-04:00

This week has definitely had it's ups and downs. DS is always there to encourage though! It seems just when I am discouraged and in need of 'pick-me-up' he says the darnedest things!!!

All of the following were spontaneous and FIRSTS!!!

1. Earlier in the week, DS was having a hard night and responded to EVERYTHING we said with 'Beasty-Beasty'. I was growing tired of him not responding to us properly and tried to find out what 'Beasty-Beasty' meant. He wasn't helping at all and was becoming more frustrated by the moment. I ran out of the room...hid...ran back into the room towards DS and as I tagged him yelled 'Beasty-Beasty'!!! He laughed so hard and said 'No, it's not a game' in the most playful and silly voice I've ever heard. We still haven't found out what it means...

2. We have been working SO hard with DS on dressing/undressing. He mastered sliding elastic pants down some time ago. He can get his diaper/pull up off, though I've only ever seen that when he's working for a marshmallow (potty reward). His shirt is the hard part. If I start one arm for him, he can usually at least attempt to get it off on his own. The thing that has been VERY recent is him choosing to do this on his own. We usually have to prompt until we are sick and tired of prompts!

Well, this morning I woke up and heard the TV on. I usually hear the pitter-patter of feet when he jumps out of bed, but not today. I walk into the living room to see clothes littered about and one NAKED jaybird sitting on the couch watching a cartoon. Just for added flavor, if the chain lock hadn't been on the door - it would have been standing wide open as well!

Mommy: Good Job!! Did you take all your clothes off?

DS: Yeah (full blank stare at the TV)

Mommy: Do you need new diaper? Do you need to potty?

DS: No, I want Cartoons

Mommy: You did such a good job taking all your clothes off. You did it all by yourself.

DS: Removes focus on TV "Yeah. (name) did it!"

3. Tonight, Dad put DS to bed. He usually requests a Curious George book-on-tape to listen to as he falls asleep. In fact, it usually lines right up with whatever story he READ to himself in the 15 min's of book time before bed. Recently we have been asking if he wants SILLY stuff to listen to such as, Curious George eats a Popsicle, or Curious George Dances with Mommy.... just to mix things up. He knows that those aren't REAL titles of CG books/movies and laughs. Tonight was as usual with the silliness. Here's how it went....

Daddy: Do you want 'Curious George goes Skydiving?'

DS: No, that's not a Movie. I want 'Curious George Eats a Carrot'

Daddy: That's silly, that's not a movie

DS: Good Job Daddy, Thank you for using your words

****I think we might say 'thank you for using your words' too much!****

4. Anytime I even attempt to lay with DS and SNUGGLE like I've always wanted to do, he gets upset and pushes me away, 'No Mommy, No, No No'. I tried this at naptime a couple days ago and modeled for him 'No Mommy, I want to sleep by myself' & then left him alone.

So, one day Daddy tried to lay down with him. And without any prompting at all he says 'No Daddy, I sleep by myself'. YAY!!! Dad was floored because he had no idea I had taught him to say that ;-) Teeheeeheee

Observation Day.

2009-06-15T19:49:00.000-04:00

Today was the infamous observation day for Preschool Services.

DS was in such a good mood this morning. I took him to McDonald's to get his all time favorite breakfast ---- pancakes! Eh, not the most nutritious of foods, but the smile it put on his face was worth it. I knew he was in for a lot of work in the coming hours.

We arrived in plenty of time to talk about what we were going to do. He was ready and willing to get to work. If my son could have a motto it would be: 'Work is play and Play is work'.

A very cautious Sally (Preschool Coordinator) greeted us and made sure that DS would be ok with some seated tasks, rather than the normal free play observation. I told her that he would certainly prefer that sort of thing and he would transition perfectly fine into that situation.

He proceeded to get into his chair. Observation #1. Got into chair OVER the back and then slid down and squeezed his legs under the table. Did they catch that? I do believe that is about the hardest possible way to get into a chair!

Then come the books. Flip books. Page Numbers. Lots of Pictures. Questions. Lot of Questions. Ace! Ace! Ace! Ace! This is what I expected. He aced the entire first book. I am not exactly sure what tests they were giving him, but it only took them about 10 pages of questions before the jaws started to drop. Whatever age this thing ended at, he pretty much got them all. I think they finally stopped when he got to early division. I admit, I did enjoy this part. Though, I knew it would come at a price. This is where they (professionals) get all googly eyed and lose sight that even though this really bright little kid has some quite amazing skills - he still needs help.

While all the questions were going on, Special Ed Teacher - Jeff, was chatting with me. He asked me how I felt Hyperlexia fit into DS's equation. He asked me to paint him a picture of grocery trips. He asked what DS does with magazines and books. He asked how social situations look with other kids. He looked as if he could not WAIT to jump out of his chair and start to get PLAYING with my kid. I really liked Jeff.

As I was chatting with Jeff, the Speech lady (sorry, you didn't leave enough of an impression for me to remember your name) passed me a 'Pragmatic Language Inventory' and I breathed a sigh of relief. Someone read my notes!!! About 5 seconds into her part of the evaluation she turned to me and asked if I had any concerns about articulation. It was littered with 'I hope she says no' & my answer was no. He used to speak as if he was an English Professor from Cambridge University. His improvement has been more like going from 'Yes' to 'Yeah'. I am pleased with that!

Then came the OT. "My you look familiar, where do I know you from?" Oh no! Are you the same lady who did his initial OT evaluation? Low and behold yes, you are. Good News! She didn't have much time & is going to rely on the recent OT evaluation (PRAISE GOD!!) and come observe during one of our home OT sessions. *second sigh of relief*

She did want to at least see him write and use scissors before she left today and she got to observe the disconnect. She asks "So, he can write with a pristine grasp, but he can't cut with scissors at all?" And there is demonstrated his Motor Planning and Fine motor issues. He really has a hard time even figuring out how to get ANY fingers in the scissors, let alone the right ones. We're working on it.....

Then came playtime with Jeff. At the same time the Psychologist (Sorry, you looked so much like the Speech lady I forgot your name too) did a parent inventory with me. DS started strong with Jeff, following his lead. But quickly he backed off and started using his coping skills. Observation #2. He won't do ANYTHING that comes remotely hard. His agitation was extremely mild compared to that of home --- at home he would have already been up running down the hall and crashing into the mirror.

Psychologist asked me a ton of questions about safety, language, eye contact, communication, etc... She *seemed* to be the most skeptical of the group. She made a noise under her breath when I answered that there was no ADOS or CARS administered (at22 months old) to diagnose his Autism. She littered her speech with 'If's' that made me leave less than confident that she would see the necessity in DS's need for services.

I absolutely LOVE how at the end of the evaluation they ask 'Is there anything that concerns you' as if this is your opportunity to interject a few small statements and leave the rest up to assumption. NO! I was prepared for that. HERE YOU GO! It's the 2 page summary we prepared for you last night so as to not miss this opportunity. Here's a copy for everyone.

Jeff seemed to enjoy this little 'challenge' that entered his evaluation room. He was excited to see the positive skills that they can hone in on and help him improve all the way around. I could tell that he was in agreement with me. He saw it. I hope he'll be the voice the others (if they are as skeptical as they seemed to be) need to hear when they are discussing the NECESSITY of giving this little boy services.

Our evaluation lasted for 2.5 hours. Well over the amount of time I THOUGHT it would take, but they did get to see a lot of stuff during that time. I just pray that the overload on 'cognitive' and preferred skills doesn't skew his results.

I was sent home with two more parent assesments. It took us a little over 2 hours to complete them both, but they are done. I also made phone calls to lock in 3 advocates from his current team at the IEP meeting. I was feeling a little skeptical, so I made sure my 'maybe's' turned into 'Yes's' because I feel like this team was a little hard for me and I will need all the help I can get.

I have to feel so proud of my little boy. He was an absolute angel. I think it could have been important for them to see some of the behaviors that we encounter at home ALL the time, but 2 of them will be coming out to do a home observation. At home, there are very few opportunities that he is not showing at least SOME of the behaviors that tell me he needs more help. I think they'll get to see it. But, I hope it's Jeff that comes and not the Psychologist. They were undecided when I left.

I joked with hubby the other day that I want to take a picture when we get to the IEP meeting. 3 people off his team volunteered to come to the IEP with us. That will make 9 people in on this IEP. They know he falls in a little area that is misunderstood! He is so loved. He has made such an impact on so many people and he doesn't even know it yet.

Before we were done today, I had several comments that showed me how special my little boy is. I got one "Maybe he'll be president one day", and a couple "I don't know what it is he's going to do, but he's going to do something big". I think I'll hold off on all the PRESSURE, but he's already doing big things in my mind.

He's so cool!!

OH and 2 HUGE, HUGE YAY's!!!!!

Speech will continue all summer!!!

OT will continue all summer!!!

Jen and Dawn will both continue services at least until we can re-evaluate and make sure he's getting what he needs from preschool services. We will have to travel to the OT center, but that is the least of my worries! YAY!

The one with goals...

2009-06-13T15:01:00.001-04:00

I don't know about everyone else out there, but I'm not a huge fan of the way goals are written for the IFSP.

It was brought to my attention by our new, competent Service Coordinator, Mara, that his current IFSP has only 3 goals. Anytime we have changed or updated goals, I have signed something to approve them, but I had no idea they were actually supposed to update the IFSP itself. It hasn't been changed at all since June 2008.

So, I am finally in the process of gathering all of his past/current goals to create a bigger picture of where he has been and what progress he has made - for myself - but more importantly for the IEP meeting in two weeks. Even though the goals are written in list form, the goals are 'met' in narrative form - thus not giving me a clear-cut LIST of goals to mark off as done (or ask to re-evaluate if needed). I am a LIST girl. I need a LIST!!

These are his current Goals:

Speech

Will respond to choice questions without any echolalia

Will ask simple who, what, where type questions in 2/3 opportunities

Will comment to gain person's attention like, "look mommy" in 2/3 opportunities

Will request "more" without prompting consistently

Will use pronouns I, me, my, you, your correctly in conversation.

Will protest words other than "no", such as "I dont know" or "stop it".

OT

When He is frustrated, he will be able to throw himself safely on the couch.

He will improve his body regulation so he is not too rough with his sister or other people.

He will be open to new foods instead of the same thing everyday.

He will be able to put his shoes and clothes on by himself.

He will be able to transition to new activities and handle changes in his schedule.

(There are supposed to be 3 more under this category, I will add them when I get them back)

As we discussed his OT goals this week, Dawn brought up a TON of stuff that didn't make it into the goals. Here is the part that is confusing to me and I don't like... They have to make the goals 'functional', but if he needs eg: 'body regulation'; the goal is written with a need for not being too rough with sister. But the discussion talked about everything from going up and down stairs, motor planning, to cutting etc.. We also discussed Fine motor needs, Bilateral Coordination, Low tone, etc.. etc.. etc.... Why do they have to be so specific? I am almost OUT of the whole EI process and I am still confused. DO they not want to work on too many issues at one time?

Dear Son,

2009-06-02T03:01:00.000-04:00

One Year since they told me that you have Autism.

I was sad that day.

I thought it meant you couldn't do stuff.

I was wrong.

I thought it meant life would be too hard.

I was wrong.

I just can't imagine my life without you

Perfect creation that you are.

You amaze me.

Your effort amazes me.

What comes effortless amazes me.

A year ago, you could count to 20.

Knew your alphabet.

Could spell a few words.

But you have amazed me beyond words.

You are almost 3.

You can read me a book about Curious George

and you can laugh at him.

You counted backwards from 900 not long ago

and read $60,000 out of a magazine.

And what about the time we played

scrabble? What other mom gets to play

Scrabble with her baby boy?

You do have to work harder

There will be struggles

I have learned so much this year.

about me

about you

about our family

about God.

But your smile...............

Your Beautiful smile.

That's what really breaks my bank!

You are my Beautiful, Beautiful, Beautiful,

Beautiful Boy!

Nonverbal? There's an App for that.

2009-05-31T20:41:00.001-04:00

Basically just sharing to spread the word.

Like all things, this is not for every nonverbal child out there, but the article blew me away...

Article on USAToday.com

The one where Jen said he might.....

2009-05-25T09:09:00.000-04:00

QUALIFY!!!!!

I really do feel like people are starting to listen. She had to do a re-evaluation today, for insurance purposes & I know Jen has gone back and forth during our year together on her opinion if DS will qualify or even NEED speech after EI is over. After my huge list of concerns about two months ago, she finally agrees with me. It was just great to hear those words come out of her mouth. I feel a little bad for celebrating, but it's not the difficulty itself I am celebrating - it is the hope that someone has listened and WILL continue to help!

The one with OT #3, Third Time's a Charm

2009-05-21T21:07:00.000-04:00

Bottom line, he's got qualitative differences in Sensory Processing, among other things listed here.

All the way around, it was yes.

Yes. Vestibular

Yes. Proprioceptive

Yes. Motor Planning

Yes. Bilateral Coordination/Crossing Midline

Yes. Tactile (this is the mildest)

Yes. Fine Motor

Yes. Low Tone

We got our FULL evaluation & I am very pleased. I am not pleased that DS has these difficulties - I would gladly take them all away and give them to myself if I could - but the next best thing is Knowledge and good hard WORK.

I feel like I ALMOST understand all of this, and where we're headed with it. But she really perplexed me too (below).

She did a very thorough eval. She explained things to me well, explained her plan of action - which doesn't have specific written goals as of yet because she wants us to find the top 2 items we feel are his biggest concerns this week and she will go from there. The good thing about a good OT is that they are fully capable of incorporating multiple issues at the same time. But, she wants to get the ball rolling as fast and furious as we can because we have SO LITTLE TIME.

Why? I didn't think we had so little time. Come July, I thought the plan all along was to move directly from EI to Private OT, even though it would mean a bit of a drive.

So, when she said that - my antennae went up and I asked her if she felt he was a good candidate for continuing OT in the private sector after July 3? I kind of understand what she said, but I still feel really uncomfortable about it. She said that most kids who's parents are ACTUALLY following through with them only really need either 'tune-up' appointments to discuss progress and implement new techniques or maybe monthly check-ins. The parents who don't follow through - end up with kiddos who need more therapy. I felt a little KICK in the GUT when she said that. But, on the other hand, once we implement a plan - a sensory diet, etc... for him.... maybe we WON'T NEED weekly OT??? I think I am just confused. I plan to ask more questions next week.

Thoughts from those of you with GOOD OTs in place?? DS seems to have quite the load of issues to be addressed. He turns 3 on July 4. That gives us 5 more one-hour sessions.

The one with the newer OT & Eval.. [Part Two]

2009-05-14T15:45:00.001-04:00

IT. WENT. FABULOUS.

I really had a good feeling about this, and I was right!!

She had her kit of 'standardized' testing, she had the sensory profile - which she went over with me bit by bit. She observed, asked questions, explained why something was good or concerning. She wasn't afraid of using the 'bigger words' with me, always stopping to explain.

A big difference between her and the other OT's we have tried to work with, is her expertise and experience with Autism. OT's work with SO many different types of issues, that it is hard to find the right fit. From our hour together, it seems that she is very on top of her game.

....and she found stuff no-one else has too. He is 'low tone'. I am certain this will take some time to process exactly to what degree & I don't fully understand it, but she saw quite a few things that fit:

1. He props constantly

2. His shoulders are 'shrugged' all the time

3. He lays on his back with 'frog legs'

4. His thumb flexes WAY futher than it should

5. He has a weak grip/grasp

6. Hunched/Rounded back

7. Couldn't even do ONE partial sit up - he was asked to place a puzzle piece at knee level (lying down) and all he had to do was lift a tiny bit to do it - but he had to roll to his side.

There is so much to work on, it is almost overwhelming. But I am just glad that we are getting the help he needs still early on.

Next week, she's going to continue more observation & talk through my list of concerns after she sorts through all that she 'tested' and observed today. She wants to see him a few more times and get a good chance to get to know him better before completing her review. I thought that was a wonderful idea.

She was so apologetic that we didn't get a useful/competant evaluation the first time around, and was also fairly surprised that no-one had addressed quite a few issues with me.

When I get the full report, I'll be sure to go into greater detail... but the evauation today cites difficulties in the areas of:

Vestibular

Proprioceptive

Motor Planning

Bilateral Coordination/Crossing Midline

Tactile (several things never addressed before, though I was surprised)

Fine Motor/Grasp (other than writing; again surprised)

There are quite a few things that I enjoy about standardized testing! :-) It is always a great thing to see your child EXCEL! She said that he set her record for the YEAR for a 3 year old: writing, using a 2nd grade level tripod grasp, and stacking blocks (12 tall). He also gave her the 'tour' (if you will) of his cognitive processing.... She asked him to 'write his name'. So he wrote 'N A M E'. She got a good kick out of that! Then, learned to rephrase. That's my boy!

Even better: I got the call that the 'Out of Sync Child on video' is ready for me at the Library. I requested it via:Interlibrary Loan a while back & now I can watch it and process things even better.

Hey - our team is FINALLY complete!!! We now have competent Speech, Developmental, Occupational, Service Coordinator, and Preschool Coordinator.

And it only took us 11 months and 12 days.

The one with the newer OT & Eval.. [Part One]

2009-05-14T12:47:00.000-04:00

Part One......

Today we meet Dawn.

I have read everything I think could possibly help, filled out a sensory profile, and have some lists ready with behaviors/concerns. I have prayed that this one will be the right fit for DS. I am a little on edge that she will meet us AND evaluate on the same day, but as long as she is a good listener and a good professional - there shouldn't be a problem. DS is very OBVIOUSLY experiencing issues with sensory regulation. I just pray it is revealed and maybe he'll actually give her a display to observe as well. We've had the TV on today, Natalie came this morning & he won't get a nap before she gets here --- so we're well on our way to some Sensory Overload anyway....

My list:

Stomping

Marching

Circles

Writing in the Air

Twirling Hair

Running into mirror/people

Throwing self onto floor/pillows

Falling off couch

Rubbing eyes constantly

Over Sensitive to Light

Biting Jaw constantly

Water on face = Smacking Face

Can't stand tags

Shoulders Tensed up

Loves upside down/swinging

Uncoordinated/Clumsy

Runs until he bumps

Fidgety/Can't sit still

Fingers in mouth

Didn't like to straddle

~Bilateral Coordination (proping)

~Motor Planning (2 feet on steps, clothes on, throwing, jumping)

~Vestibular (much of above list)

~Proprioceptive (much of above list)

~Picky Eater (? just to mention, not a huge deal)

~Self Help - Shoes, Clothes, Jacket, Stool, Potty

What we're doing

Heavy Blanket (nap)

Wiggle Seat

Vest

Heavy Moving

(Swing?)

(Crash Pads?)

My Daddy.

2009-05-13T09:32:00.001-04:00

Being Mommy.

2009-05-11T09:41:00.000-04:00

Being Mommy is something I wasn't always so sure I wanted, sitting in my college apartment nine years ago. I remember sitting on the hardwood floors of the hallway talking to my roommate - wondering how you know that you really want to BE a mom.

Then, after my husband and I were married, we had 'the list'.

All the reasons why we didn't have kids - or weren't having kids. We were on the 'Five year plan', five years and then we'll THINK about it. We used to say that as long as the cons side of the list was longer than the pros, we weren't having kids.

And then one day... I heard a preacher on the radio. I sat in my car long after the engine was turned off just to hear the last words he had to say. It was ever burned into my mind that the blessing of having children would mean that there would be another generation to teach, raise up in God's Word, and lead away to spread the good news of Jesus Christ to the world. It was that day I knew. I have always been thankful that God allowed me to hear that message before finding out that I was pregnant with my little boy. From time to time God allows that message to come back into my mind.

"Train up a child in the way he should go,

Even when he is old he will not depart from it."

Proverbs 22:6

I am SO blessed with exactly what He knew I needed.

.....A Humbling experience, yeah, He's given me that. Something to bring me to my knees over and over again - I think all parents get that -not just those who have children with special needs.

.....A Beautiful Boy to teach me how big and wide and deep the Father's LOVE really is. A child who holds a future that is important, beautiful, extraordinary, and totally out of MY control. A child who takes my breath away, takes every ounce of energy, but I still cannot get enough of - so that at the end of the day I just want to crawl next to his bed and kiss his worries away over and over...

.....A Beautiful Girl to show me how beautiful differences can be... how to capture each first like a camera lens in my mind and enjoy it with fullness. To give a sparkle to laughter and tears to the tiniest bump in the road. A child who encompasses joy, real joy in the smallest of things. Who stands strong in her will, yet crumbles at a kind word and a tickle. A child who greets each new day with a beautiful smile and intoxicating giggle. And who makes me long for night to end and morning to begin again...

But not only did he give me two totally different children, He gave them to me in a perfect order... A boy first - one who captured my heart in a moment. One who requires a little more time, a little more patience, a little more give. But - I didn't know I was giving a little more.... so my second, my girl just makes me marvel at tiny minds and miracles - instead of having that opportunity to question. I have thoroughly enjoyed. Laughed a lot. Cried a lot. Loved beyond my hearts measure. Blessed beyond anything I could have ever prepared for myself.

HE knew. HE knew this is the plate I would be given as a mom. Yet, each moment that seems too difficult, also shows me a new reason to believe. Because around the corner of the difficulty is provision. He has provided.

BEING a mommy wasn't ever a choice. It was all in His plan. Being is more so a state - I just AM a mommy. It isn't something I wake up and choose each day, I just am. He carries me through it, I just pray that I continue to open my ears and listen for what He has prepared for us next...

The one wondering about Pronouns...

2009-05-11T08:50:00.000-04:00

What exactly is Pronoun Reversal? At what age is it appropriate? Is this advanced Echolalia? Does this fall under another category? All of my examples are daily occurances. He always says things this way.

Example of a phone conversation....

Me: 'Tell Memaw you love her.'

DS: 'You love her.'

Example of Potty Training conversations....

Me: *checking the diaper*

DS: 'Do you have gas?' (HE was the one passing gas)

Me: 'All done potty, what's next?'

DS: 'Wash your hands and dry your hands' (should've been 'MY')

Example at Mealtime...

DS: 'Are you eating cereal and milk?'

Me: No, YOU are eating cereal with milk.

Example of daily events...

Me: What did you do today?

DS: 'And we play, and we sing, and we readin' books.'

DS: 'Mommy, can I kiss your boo-boo?'

Me: 'Where is my boo-boo?'

DS: 'On your foot' (holding his foot up to me)

The one with a Beautiful Mind...

2009-05-06T09:52:00.000-04:00

I would love to see all that happens inside my son's beautiful mind. I mean, I am totally perplexed on a daily basis with what he comes up with.

Today he wanted Chocolate Teddy Grahams. Well, we have Honey flavor, but I've never had Chocolate ones. I am certain he got that gem of information off the box. He would not listen to my explaination, so I wrote him a note: "Mommy has zero

Chocolate Teddy Grahams. I am sorry."

I handed him the note and a pen, thinking maybe he would write me a note back. (What was I thinking???!!!)

This beautiful artwork piece, of which I can see multitudes of numbers, includes 100, 300, 400, 500, etc.... Not an ounce of scribble on this paper... all numbers.

Is this obsession?

Is this communication?

Is this going on in his head constantly?

Is he trying to tell me something?

Is this his version of play?

PSA: Interesting article on cnn.com

2009-05-05T16:37:00.000-04:00

The Amygdala is on avg. 13% larger in toddlers with autism who have problems with joint attention. Interesting....

http://www.cnn.com/2009/HEALTH/05/04/autism.brain.amygdala/index.html

The one with new Case Worker details...

2009-04-22T14:44:00.000-04:00

I got a call from Tammy's (old case worker) supervisor today.

I spoke with a different supervisor yesterday who was able to take care of cancelling our current OT services. Then, I had to speak to Tammy TWICE on the phone about cancelling OT -because the supervisor enforced her handling it. It went ok, but I just kept my mouth shut and said what I had to. Have I ever told you I hate confrontation? Well, I do.

So, Tammy's supervisor (name slipping mind) spent quite a while on the phone with me. She addressed my concerns over why Tammy was a bad fit. She addressed getting the new OT up and running ASAP. She addressed questions I felt were never answered (there were a lot). And she addressed what a Case Worker IS and isn't supposed to do for a family. The 'isn'ts' were pretty self explanatory and the 'is's' were mind boggling. Bottom line - Tammy really isn't doing her job. Everything was always vague with her. Tammy told me that she could not help me choose a therapist in any way. What the supervisor is telling me is that No, they can't recommend one over another (understandable) because they contract with them all.... but they can help in any way possible to find the right fit (based on credentials, specialties, degrees, etc..). All I EVER got was a list.

But LOW AND BEHOLD if I wasn't told an untruth by Tammy AND by fired OT Amy. There is NO rule in any book that a child is only allowed one evaluation per year. It is a decision that is completely child driven. That tells me #1. Tammy must have told Amy said untruth, in which Amy didn't protest or #2. Amy didn't ask for an evaluation in the first place, like we discussed.

The supervisor is going to keep our case for now until we get OT services going, so we won't be in limbo. Then she is going to assign us with the best fit for our needs - keeping in mind the list of people I have requested. Fair enough.

Supervisor has a list of 4 things to do for us:

--Find info on Dawn (new OT), set up OT sessions, and get us started with an evaluation.

--Research our case fully; find out what type of evaluation was done if any regarding OT

--Find the right NEW case worker for us.

--Get information together on County/Private Preschool programs requested

The one that's Blowing My Mind....

2009-04-21T09:36:00.000-04:00

If you were on my side of the screen - you might find me dancing on top of a chair waving my hands about...."God is good. All the time. He put a song of pra-a-aise In this heart of mine...."

......... or maybe I am really just sitting here typing..... but that's what I feel like doing.

Oh. My. Gosh. Someone made an 'anynomous' tip to one of our therapists that our case worker is, in fact, NOT doing her job at all. This is a factual tip - as in maybe this person actually has our files and knows first-hand. They are to remain unnamed - but I can tell you that it makes me feel more strongly than ever that we've got our train on the right tracks FINALLY. I was given several names of new case workers that are supposed to be 'awesome' to work with and will advocate FOR us instead of all this flailing about not knowing what direction we are to go next. Hey, now THAT'S a novel idea..... ADVOCATE. FOR. A. CHILD.

..... more dancing.........

......I'm feeing a little sensory overload........

.....doodopde deeee deee dooooo......

Ok. I'll chime in with more when

1. I'm settled down

and

2. I hear back about switching case workers and actually know something more.

The one where the fog starts to lift...

2009-04-20T22:38:00.000-04:00

On the other side of that beautiful green meadow, you can just make out the sunrise through the thick fog that envelops anything it touches....

I feel like finally a little fog is lifting.

We had our Referral IEP meeting on Friday and hours later the whole family (excluding dad who was out-of-town) came down with the stomach bug. As bad as I wanted to process my thoughts - I was quarantined to whatever room made the kids most happy.

fRIDAY:

I could not have asked for a better meeting or case manager [Sally].

I walked into the meeting not knowing what to expect. I was as prepared as I knew how to be and I was resting on the knowledge that DS has a future and a purpose and no matter what little events happen now, it'll be ok. I prayed for several things prior to our meeting - one of which was for someone willing to listen and understand the unique issues my little boy brings - without the need for defense of diagnosis. To my astonishment, Sally greeted me and immediately told me how appreciative she was of the information I had prepared to describe in detail the strengths and weaknesses of DS. Her words were 'I have never had anyone paint such a perfect picture of High Functioning Autism until now.' She proceeded to take me step-by-step through what I had written to make sure she understood and allowed me to expand on certain thoughts that were intriguing or left her with questions.

She GOT him. I mean, as much as you can really get it in one and a half hours - she got it. I could go on and on, but the bottom line is that she understands that he has some really great strengths, but none of those take away from the fact that he needs a preschool environment to help him first and foremost with development of Pragmatic Skills across all areas (among other things, of course).

She read about the sensory needs that are being addressed by his DT and SLP and inquired why his OT was not a part of that if he is receiving OT services. I explained about him not getting an evaluation even though some paperwork somewhere says he did & she jumped right into helping me find what he needs NOW for OT. She was the last straw in Amy's back, and now Amy-current OT is a goner. I've already contacted two good leads on OT's with strong Sensory Integration backgrounds. One of the two has all kinds of specialized training, which impresses me and I can't wait to get more information.

We hashed through different preschool options that are not necessarily all options for DS, but were options to be discussed nonetheless. We have 2 inclusive (or what I'd call mainstream) classrooms for 3 year olds in our county.... There are also part day DD classes... and Full Day AU classes. The option that everyone was telling me he might qualify for was Itinerant services, which she quickly threw in the fire because of his great need for social interaction. She doesn't think one-on-one therapy is the right fit, but made a point to tell me that a TEAM would be evaluating his needs, and while she will be there for the whole process, the team will decide. I am a part of that team & I understood and agreed with her sentiments on Itinerant services. I actually thought they were something a bit different than they are.

tHIS mORNING:

I finally got to go through my speech concerns with Jen today. She tends to dismiss my concerns as 'typical development' - but I turned it around on her today. I had a list of what other 2.5 year olds and younger (that I know) are saying/inquiring/commenting/etc.. for each category that I had a question about. She left with a lot of great notes, some great new goals, and FINALLY seemed to understand what I mean when I say DS has a really rough time with Pragmatic speech.

tHIS aFTERNOON:

We had a well check for Baby Sis and I asked the Pedi about referrals for Private OT and for a Developmental Pediatrician for DS. He didn't bat an eye at the recommendation and immediately wrote that up for me. Good news = both qualify under insurance and it looks like I won't have to shed a dime. He recommended the Devel. Pedi I wanted to call - which made me doubly happy!

The OT's can work through EI until he is discharged in July and then continue on with him after in a private setting - which he may need since we are getting a late start on [what I hope to be] proper therapy. I am sincerely hoping that the 3rd time is a charm and we will get the right person this time.

All of this, plus I feel like our team of helpers is finally coming together. I feel like Jen, Suzanne, and Ron are all people who know and are understanding DS better and are becoming great advocates for him, too. It may seem a little late - but it's not. I have learned a lot about myself through his hard 'foggy' process. It really is ok that parts of it have been really hard. I am enjoying my child like never before, and I think we just needed to get through some hard stuff to get here. Maybe the road paved before someone behind us will not be quite as rocky or rough because we've been here first. Those who went before us certainly dug out the muddy road.....

wHAT a dAY. What a weekend. What a whirlwind. Praise God. Praise God. It looks like we are at least on the right path to get DS what he needs. It'll never be easy, but it's not looking impossible at all.

The story I cannot resist...

2009-04-18T00:27:00.000-04:00

This evening we needed some groceries. Dad is out of town & I had no choice but to take both kids, so I decided to make it fun. We went to Harris Teeter where they have the little carts for kids. DS has been doing so well walking along while we shop these days, I thought it would be a fun little change. I will never forget his priceless little face when he realized the cart was just for HIM to shop with. He was so proud, I think he almost tipped it over. We set about finding an onion. He paced up and down every inch of produce reading the labels until he happened upon the last bin on the last aisle and found the onions. We got a couple and headed for aisle #1. That was easy enough - he always wants to find the aisle numbers anyway. "Ok, now mommy needs a can of Peas. Can you find that for me?" "Oh wait! Mandarin Oranges... do you want some of them?" DS:"Peas, mommy, peas. No. Peas" "But now I decided I need some oranges, can you find a can?" DS:"Peas, mommy, peas. Aisle 1 Peas" "Ok, Ok, I'll get the oranges, you get the peas. Aisle 2." Well, round about aisle 2 he heard me say that something was on my list. Low and behold if there isn't a list right up there with the aisle number too (thinks DS). So, he proceeds to tell me I need 'Kool Aid', 'Juice', and 'Breakfast Cereal' - you know - because they're all on 'the list' [aka the sign].

Each time we got to a new 'list' he would stand in the middle of the aisle exclaiming all the items listed on the sign & refusing to move a muscle until I got all of them. It took some explaining and a little barganing and distraction, but I did manage to get away without any of those random items. Until aisle 5.

My [still enjoyable yet rigid] 2.5 year old exclaims "I need MIXERS mommy, Mixers."

Dear Lord - the first item on the sign on aisle 5 is 'Mixers'.

You know, the ones used for mixed drinks??!!

This time, he was adamant. "Mixers. Mixers. Mixers Mommy" until the word 'mixers' turned into a whiny blurb that contained nothing but vowels.... but he persisted on.

I was on the verge of wetting my pants in laughter... my son was exclaiming and crying that he wanted mixers... and who knows what the poor shoppers thought of my alcoholic son....

I finally brushed off the laughter - helped him understand what was REALLY next on our list & went in search of Cheese Balls. Ahha!! "Cheese Balls are on aisle 10 with the chips, lets go find them"

Awwwww - man..... they don't sell cheese balls. They sell Cheese PUFFS. Well, that just won't do. LOL another breakdown of the system.... DS finally decides that Cheese Puffs are ok to go in the cart. And I asked him what was next: 'Cheese Balls'. Of course. Because my 2.5 year old can read and he knows that there is a distinct difference in the word 'Puffs' and 'Balls'.

Note to self: Make sure I know what I'm really going for next time & skip aisle 5!!! Also, wash pants.

Leave the old stereotypes behind...

2009-04-17T17:24:00.001-04:00

The one with the first IEP meeting...

2009-04-16T23:50:00.000-04:00

Well, the first one that really counts anyway...

I'm trying very hard to not be nervous about tomorrow. I am as prepared as I think I can be & I am holding fast to Jeremiah 29:11. I am coming to terms with the fact that public services aren't the end all be all anyway, so everything will be just fine whether someone there listens to me or not. But my #1 prayer for tomorrow is that I will say the right words, someone will listen and understand, and that my little soon to be three-year-old will get what he needs.

For I know the plans I have for you,"

declares the LORD,

"plans to prosper you and not to harm you,

plans to give you hope and a future.

This is the second of four meetings that will determine little man's IEP. The second one is set aside to discuss what needs to be evaluated and/or observed. This is equally as important for him as the IEP itself because if they wont agree to evaluate/observe what I think is necessary, then they won't get a full picture of his needs. The most frustrating part of this is that the forms I was supposed to fill out had a section to describe in 'narrative' his STRENGTHS, yet the section on concerns only had checkboxes.

I shake my head.

I think knowing and understanding his strengths are very important and I would have GLEAMED at the chance to gloat about my little boy had I not felt a bit of a set up in the way the form was written. As a rules follower, I had a bit of a hard time going against the grain.... but if I've learned ANYTHING over the past 10 months, it has been that I am the only voice that DS may have. So, I proceeded to narrate about EVERYTHING instead of what I was supposed to. I think I painted a pretty good picture, if I do say so myself.

The one where DT is awesome....

2009-04-01T11:26:00.000-04:00

All along, Suzanne has been more awesome than I knew...

Going along with my recent 'hyperlexia' theme - I planned to get her on board to help me know what next steps would be necessary and what next steps would be useless. Maybe some suggestions on particular doctors, etc... Up until now, I haven't had an opportunity to mention my newfound information with any of them. I did email Ron, but he is in the field of Autism exclusively and our sessions with him have ended. I'm anticipating his response.

In she walks with Boggle Jr. and Hullabaloo DVD.

I know that a Title, a Diagnosis, a LABEL doesn't matter a hill of beans if someone just knows what to do. And she does. Maybe some of the hyperlexia material will help us understand something better - but for the most part she GETS him.

She was pretty unfamiliar with the term, other than the implication that a child would read early. But she was happy to read the short articles I sent home with her and said that she would read them and let me know her thoughts on next steps. She even said that she would be the one to contact the casemanager to request an addition to his current diagnosis.

It has been suggested on the Hyperlexia group I found that the next step needs to be medical documentation. That would facilitate me in not needing to argue what I *think* is true, but just being TRUE when we are in need of getting services. It also serves as a good starting point for casemanagers to understand WHO might be a good fit. Whether any of that ever happens or helps - I'm not sure - but that is what everyone says is the next step.

We've never been to a Developmental Pediatrician, but if I can get a good recommendation, then maybe I can also get a good recommendation for a full OT evaluation and we'll be on the road to having what I've wanted all along. I am slowly learning (slower than slow, I take a long time to process information.....) that EI is not the BE ALL END ALL of what we need. We are going to have to branch out on our own, and in doing so, probably bear the financial burden I hear tell of...

Anyway, so she brought those 2 games -

Boggle was a good easy way to get him to interact and answer questions while doing what he does best. (basically you spell 3-4 letter words with dice). I loved that he had to manipulate the dice to get the letters. He had to work harder than just writing it down or picking from a lineup. It was also a good game to get him to use both hands. She understands that USING his reading is a good thing. Jen always wants to find things that don't have words or reading or numbers - and I understand where she's coming from b/c there is a hard question to answer... "Is it better to use his love for words or better to steer clear of it?" A question I have asked myself multiple times. Myself - Dad - and Suzanne realize that he's going to do it anyway, so we might as well teach him appropriateness. Newfound info on hyperlexia supports that & takes it steps further - which will be a subject for another day.

I think Suzanne GETS IT well. She understands that he needs to learn to use his skills appropriately, and yet needs to be able to transition away from it when deemed inappropriate. But she never wants us to take it away from him - just make sure he's not absorbed into it & isolating himself.

Then Hullabaloo [oh my, what a great game].... what can I say? She knows he loves TV, so the DVD version allowed him to spend some time enjoying visual stimulation AND physical interaction. It had all kinds of simple instructions that challenged him to use auditory and visual discrimination. We all played, including baby sis!

The one with the most awesome....

2009-03-30T12:10:00.000-04:00

....little conversation ever!

For the past week, I have been very consistant and sequential about naptime. We were having a horrid time getting DS to stay in the bed long enough to fall asleep. Poor little guy just could NOT wind down. I could no longer (with a good conscience) give him chocolate milk and new CD stories to get him sleepy enough to eventually die out. All along, I think he needed a little sensory integration help & the suggestions have helped Tremendously.

Push or carry heavy toys for a few minutes

Eat Lunch with Mr. Wiggles (new air seat cushion)

Read books Sitting in bed

Tell Mr. Frog, Gregory, Curious George, and Baby Doll that it is time for Nap

Tell DS it is time for Nap

Lay down under heavy blanket

Glorious sleeeeeeeeeeeeeeeeeeeeeep!

So, today, we head to DS's room and I say 'Mr. Frog, are you ready for stories?'

DS responds (looking directly in their eyes):

"Gregory, it's time for read books, OK?"

"Curious George, it's time for read books, OK?"

"Baby Doll, it's time for read books, OK?"

When we finished up reading, he knew exactly what was to come next.

[DS in quotes]

"Mommy's turn" I took Mr. Frog and put him to bed.

"Gregory" (we have to do them in the same order) "It's time for nap-nap. Lay down. Blanket on. No-no getting up. No-no playing. No-no jumping. Night Night. *kiss* "

"Mommy's turn" I put Curious George to bed.

"Baby Doll, It's time for nap-nap. Lay down. Blanket on. No-no getting up. No-no playing. No-no jumping. Night Night. *kiss* "

Then DS turns to me with the biggest grin on his face, ready for me to tell him the same thing. I go through the whole thing with him & he nods his head just like I do with the animals as I have them answer me.

How adorable! How amazing! Man what a little repitition can do!!!!

The one I wasn't even looking for....

2009-03-27T00:50:00.000-04:00

All I have to say is that my 72 hour journey into the world of Hyperlexia - the one I wasn't even LOOKING for - has taken me on this crazed trip of finding answers and direction to just about EVERY SINGLE question I have had over the past 10 months. Every evaluation I thought should have been done. Every 'should I take him to this doctor' or not. Every 'gee why do they battle so hard against his diagnosis'...........Every he is so awesome....

Thank you, Lord, for this trip.

My mind is about as clear as a big bowl of mush from information overload.

But I know that God has provided me with what I needed right now.

I couldn't even keep reading tonight because of the abundance of blessing. He certainly did let it OVERFLOW in this situation. Hallelujah!

The one with Hyperlexia...

2009-03-25T22:45:00.000-04:00

Hyperlexia

I came across a special needs resource center recently with a lending library. I called them up, got a couple of books in the mail the next day and set about reading.

One of my current reads is 'Reading too Soon' by Miller.

Page 1 might as well be DS's Biography.

Hyperlexia is not a recognised disorder in and of itself & I don't really know why but there is very little literature out there. My hunch is that there are a group of children that present in this very similar way, but that it is so tied into the Autism Spectrum that it doesn't really deserve to be set apart. Just my hunch.

It hilighted that these hyperlexic children usually begin to recognize letters and numbers between the ages of 18 months and 2 years. Spontaneously, coming out of nowhere they begin to read words before the age of 5. Most of them are reading by the age of 4 - but the intense love of numbers and letters comes well before that.

Well, last night after reading a few chapters, i had the opportunity to go to an event for

moms of children on the autism spectrum. The room was filled with these moms along with five professionals. I was intrigued to find out that the woman sitting next to me has a son only one month younger than my own. And he is a 'reader' too. We didn't have a huge amount of time to chat, but her son has a reading vocab. of about 50 words. It is extremely amazing to me for children of this age to read, but even SHE was blown away by the extent to which my DS reads (and that made me feel bad, not sure why, except I didn't like the way that felt). I would have never walked into a room like that and announced my child's abilities - but RON made a point of telling everyone 'This is DS mom, he's the one who reads and memorizes 53 song CD's' etc... [Thanks Ron...]

People just can't get over the 2 year old who can read them a book.

Yet, when we pass by 'On the Border' or 'Right turn only'. I am nearly oblivious to the little voice in the back seat reading all the signs.

I say this to just pose the thought in my head. How many children who are 'on the spectrum' AND have this thing called Hyperlexia are reading 76 page kid books before bed at 2 1/2 years old? How many kids in general can do that? How rare is this thing happening in our house? Our first video of him reading a book was on 9/20 last year. That was 6 months ago!!!! What?

If I sound a little braggy in this post - eh - that's ok. I need that every now and then :-)

I'm learning things about Hyperlexia that are really intriguing - about how they process language etc.. The most encouraging thing I've read so far is that some of the children lost many of their autistic traits by the age of 10-12. It seemed that most of the behavioral challenges were directly related to the communication/understanding deficits.

The followup to re-reading the IFSP...

2009-03-25T21:36:00.000-04:00

Tammy came today with the 'Disco' seat, wiggle seat, whatever you want to call it. It was no big deal for me to call her and request it and have her schedule a time to come out. It seemed to work well at lunch/dinner today. He still fidgeted, but when I also mixed in some deep pressure through his shoulders/elbows/wrist, he seemed to calm down even more for us. He almost seems to MELT into anything with deep pressure. I'd say that's the sign I've been looking for.

Also, when she came, she was supposed to bring his OT evaluation from August.

There's not one.

She called the company that worked with us previously to request it, but they have not gotten back to her yet....... The sad part is, I am not even surprised. However, if they can't produce something, I will be requesting a new OT evaluation. End of Story.

.........................................................

Jen's visit today was really good. She worked on one task with DS and then we talked the rest of the time. I got out a lot of stuff that I feel like we haven't discussed & I think the timing of it was good as well. [Again] She told me that she feels like he is caught up & in other cases she would be ready to discharge, but recognises 2 things. 1- it will be harder to get services again after being discharged and 2-she knows that he will fall short again soon without SLP help. Not with making sentences, etc.. but social/emotional.

I agreed 100%.

I also made note that DS does things for her that do not translate over to his 'real world experience'. I told her that SHE is a prompt for him. He asks questions for her - for her books - for her cars.... and he will ask questions around the house as well - but it is all so learned and rote. I know, I know, it starts that way when its emerging...

I also told her about the reading I've done over the past couple days on Hyperlexia (more to come on that in a few) & asked her if she had ever read up on that subject. I feel like there are things pertaining to language development that might involve her having a more detailed understanding of how his early reading can impact his language development. One being the amazing amounts of things that can be memorized & spit back out as big chunks (looks rote) instead of REALLY being learned.

At the same time we were talking, DS and DD were bouncing around the room playing and getting into whatever their hearts desired. DS decided he wanted to 'play with mommy and plashpluh....' which ended up translating into 'flashlight'.

Upon witnessing something more mundane and the opposite of structured play - Jen decided that she wanted to cut out our structure play time (oh God thank you! I was so afraid she was going to bring up 1x/month visits again) and just come without her toys. So, next week, she is coming without her gaggy bag of stuff & wants to participate in whatever activities just HAPPEN.

Also, we are looking to find a place for her to observe DS that would show his interaction with peers, opportunities to communicate, demands being placed, etc... Because she (and I) think that his next set of issues are going to be in direct relation to being in a setting where he needs to interact with peers and meet demands placed on him. Whether that be just understanding what a teacher is requesting, or stopping color time, or sit in the chair..... you know... preschool stuff.

Anyone reading this blog ever needed to do that before? Suggestions?

In the end, it was a great conversation. I do not agree that he is all caught up & am working on finishing my list of concerns (that I started a couple weeks ago) that we can still address at his tender age of 2 years and 8 months. We still have more than 3 months with EI. We have come SO far. He said an 11 word sentence for her today. Oh My! Who would have thought. BOTH our jaws dropped as I counted the words that came out of that precious boys mouth.... I think we still have some things that can improve over the next few months. My expectations will never quit, but will ALWAYS be blasted out of the water with this amazing child.

...........................................................

I'm on an emotional roller coaster today. There's really not a reason - nothing has happened that much different than usual - just if you think of me today stop and say a little prayer. Everybody deserves a good cry once in a while....

The one where I went back through the IFSP...

2009-03-22T23:53:00.000-04:00

I've had this growing stack of papers all pertaining to DS in some way that has traveled from place to place around the office. Too new to have a place. Too needed to be filed away. Too daunting to do something about.

Anyway, I managed to sort through the stack on Saturday and at least sort it into a manageable set of information. I ran across his IFSP & decided to take a gander at the professional lingo that described my son when he was 23 months old. In bold Black and White 'Consistant with a diagnosis of Autism' still has a shock value. However, that's not what I'm fixated on tonight.

Right under the 'Sensory Observation' section it states 'OT evaluation is recommended to further address his sensory processing skills due to qualitative differences.'

So, that proves-- There was not an OT evaluation at our initial diagnosis appointment.

Raises the question-- Does what Kitty did with him back in August count as an official evaluation? Because it wasn't any sort of standardized test to my knowledge - and if my mind serves me - I beleive she even called it 'informal'.

And brings upon action-- I will be calling Tammy on Monday to get a copy of the OT evauation that is supposedly on record, and thus stopping him from the availability of another eval within the year.

I think that something got swept under my radar while I was on watch. Easy to do when you don't fully understand something. But this might work to our advantage....stay tuned...

The one with the Museum...

2009-03-21T11:10:00.000-04:00

When I focus my blog posts on our current subject matter of figuring out what our OT needs are, therapist comments, etc... our life seems all too dreary and dull. Especially as of recent, the blog is not a good portrait of our lives as a whole - so I will invite you to something a bit more telling...

The Museum

When I was growing up, kid's museums were all so 'sciency'. That is great for kids who are either ~8 years old or into that stuff, but I was always kinda bored. So, I had not put any thought into the local children's museum, knowing that the Natural Science, Art & History museum trips have been a bit on the sleepy side for us.

I'm a sucker for a freebie, so when I found out they were doing Story time and Free Admission one afternoon this week, we headed out on an adventure.

It was perfect! Everything in the whole place was to encourage children in imaginative play. Everything scaled down to child size, yet bigger than anyone could ever have in their home - there was an ambulance, firetruck, hospital, kitchen, grocery store, ball pit, dress up stage, train set, lego forts....you get the point.

Both kids LOVED it.

We parked in space #63, which DS reminded me of often. He held my hand like a big boy all the way in. Had a hard time in the line to get in, but that's ok... Storytime lasted less than 10 minutes because he wanted to sit IN the book and read the words. But that just gave us more time to play!!

His favorite ended up being the ball pit, which thouroughly surprised me! He loves slides, and you slide into the ball pit, but I didn't know what he'd do once he was in. Until he wriggled himself all the way over to the other side and slid back out, I was ready to jump in and save him. But, he did great! And, then there was no getting him back out :-)

Baby sis' favorite was running away from mommy. Around the corner from the lego fort area was 'Real Tools' (duely named; saws, hammers, wood..) - so i was being cautious neither of them went that direction. But, Baby sis thought it would be MORE fun to grab the legos and make a RUN for it! Her other favorite was driving everything - the convertible, the ambulance, the mail truck... DS sat either in the passenger seat or back seat while she 'drove'. Is this imagery I will remember in a few years? I think so.

Mom's favorite was the lack of batteries, cords, buttons, noises, stop-dont-do-that's, and the ELEVATOR - which would stop any unwarranted behavior at the slightest mention...

I absolutely LOVED that the only noise in the whole place was light instrumental music and the sound of kids playing.

It was exhausting chasing them in different directions, or holding Baby Sis while DS ran toward something else, but that's not a complaint - just a matter of fact. I would love for Dad to go next time so we can really let the kids dig into whatever it is that meets their fancy that day.

Good day. Good imaginary play. Good words. Good following direction. Just plain ol' good.

I can't make this stuff up!!!! SERIOUSLY!!!???

2009-03-21T11:00:00.000-04:00

OT Amy was only O.K. this week.

I will remind you that my plan this week was to sit back and observe what AMY does instead of making a lot of interjections and asking questions. I have had a lot of questions over the past two weeks, because she is new...

Within 3 minutes she annoyed me.

She came in [late] and asked me how the week had been & if any of the suggestions had

helped. I told her the distraction of something in his hands, or changing the marching to carrying were all working well. And, I told her I felt like the 'beach ball in the chair' for mealtime could work, but we always have to get it just right and more often than not, he wants it out. But I have seen it work.

I told her that the SLP wanted to know what new things we are working on & when I mentioned the beach ball, she told me the EI center has a whole closet of things to check out, one of which are all different types of 'wiggle seats'. And that I thought one of those might work better for him.

Amy's response: "I don't go to the CDSA. The Beach Ball is the same thing, just cheaper."

Seriously??!!

I tried again... I told her that I was under the impression that what could be checked out at the CDSA would be free, and that the beach ball kind of crushes under him instead of giving him any buoyancy.

Amy's response: "The beach ball is

the same thing. That's what it's supposed to do. I don't go to the CDSA."

Seriously??!!

I dropped it. I was baffled and annoyed. I got REAL quiet, because I was put off and not quite sure what to do with such blatant refusal.

About 20 min's after our 'conversation' ended, she comes out with 'Do you ever talk to Tammy (our Service Coordinator)? Maybe you should call her to see if she can get you one of those seats.'

Another 20 min's pass and she tells me that she has a headache. Ok, I have bad headaches sometimes... they can certainly make me crabby. It was duely noted, but didn't take back any part of the crushing blow to my impression of her: Disappointed.

..................................................................

What we DID do:

She seemed to be in a kind of 'assesment' mode for fine motor today:

She let DS color and asked him to color on different parts of the paper; mastered.

Asked DS to copy shapes such as 'S', square, and then a couple abstracts; mastered.

Asked DS to copy shape patterns with them touching, such as Square w/circle touching the bottom corner; mastered.

Drew a stick figure and asked DS to draw eyes, nose, mouth, hands, feet, hair, ears..etc.. on the body; mastered to a 4-6 year old skill level.

Gave DS an assortment of blocks and asked him to copy a straight tower and a few other structures that she made; mastered.

Showed DS a structure, knocked it over and asked DS to rebuild it; mastered

I sat in amazement. I knew he could do SOME of it, but not all. I knew his memorization skills were helping, but I was MOST amazed that when he copied her structures, he didn't match the colors of the blocks to the same as what she used. I would have expected that of him. I take that as a GOOD thing, he wasn't so rigid in the task that he needed it to be perfectly matched.

Then we moved on to socks on, shoes on, and outside to play ball. She continued working with his ball catching and kicking. She assesed his skills going down and back up the stairs outside, and then we were back in to take shoes and socks off.

Back inside, she did a wheelbarrow crawl and 'bear' crawl with him to improve his shoulder muscles and input. She also wants us to use these are distractions when he gets to marching, twirling hair, and singing his ditty.

Then she told us that a class she works with in preschool are JUST starting with helping the kids put on Jackets. And that working on even getting a shirt on is more of a 4 year old skill, that she would not emphasise that right now, as it is developmentally out of his league.

I'm not saying he's REALLY behind on those things.... but I disagree.

The one with Mother Lion and her cubs...

2009-03-17T14:44:00.000-04:00

Me and the kids met Dr. GI for the first time today.

All sides agree that all DD's reflux issues are gone and we can move away from any medication/testing/treatment for GERD (reflux). If we notice any change in the next 3 months, she will want to do a Barium study and Endoscopy. I do not think that will happen.

In that respect, I liked Dr. GI.

However, we were ushered into this CHILDREN's HOSPITAL satellite office 'room' that had 10,000 buttons/dials, and NO door to boot. DS was in button & machine heaven. Mom was in total misery and there was nowhere to undress Baby Sis. So, I was left to undress, help weigh, help measure & keep DS from breaking all the gadgets at the same time. Of course, we were in a new place and his ears were closed to any instruction I was waisting my breath on.

In my huffy voice (that I hate and try SO SO hard to stay away from using), I said 'Is there a room we can go to soon? He's having a really hard time.' She said yes, and I asked her to please tell me what number it was. #8. Ahhhh..... 'DS, we are going to room #8. See if you can find it. I need you to listen to mommy. We are going to go in and sit down and Dr.GI is going to look at Baby sis.' (blah..blah..blah... you get the point).

Well, DS listened as long as it took him to find door #8. After that, I might as well have had a bouncing, spinning, chattering TIGGER on my hands. I think he settled on singing the calendar for about 10 minutes at one point, as LOUD as he could.

Anyway.... Dr.GI finally came and disregarded the fact that I was having a hard time keeping DS under control. But then, she says 'Baby Sis (but her real name), Baby sis, Baby sis......... Baby sis. WOW - you won't look at me at all. You just don't like looking people in the eyes do you? Oh, wow, look at me, I'm over here... Baby sis, Baby sis, Baby sis....'

GROWWWWLLLL....errrrrrrrrrrr

I really need not explain why it turned me into a growling Mother Lion....

I wasn't sure why she was making such a big deal - but I've never questioned Baby sis in the least - and whether she meant it or not.... I just wanted to grab my cubs and go.

....................................................................

I'm the first to admit how imperfect I am. These are the situations, the ones that I have no control where I #1 realise how dependant I should be on God for my peace in every situation and #2 let my emotions get the best of me and let my witness go by the wayside. My energy was wasted on this trip - I am drained at this very moment to the point in which I just want to go lay down. However, I am not without Hope. I pray God will give me another day (although I am not promised one) and that I will seek HIS strength better tomorrow.

1 My soul finds rest in God alone;

my salvation comes from him.

5 Find rest, O my soul, in God alone;

my hope comes from him.

8 Trust in him at all times, O people;

pour out your hearts to him,

for God is our refuge.

Psalm 62:1..5..8

Always talking about needing a 'breath' or a rest, I am very comforted by the fact that God knows I will need hope...and rest...and refuge. He knows how imperfect I am and JUST what I need WHEN I need it.

The one with Mastery of 'Are you' questions...

2009-03-17T08:23:00.000-04:00

I've noticed that DS has actually started to ASK some questions. This is a HUGE event because I had no idea how long it would take us to get here. They are still squeaky, shaky, and fairly planned out.... but it's amazing.

I think he has noticed everytime I say 'Thank you for asking a question' and has built on that praise a want to do more.

'Are you reading your Bible, Mommy?' he says to me this morning.

Yes, I am. Thank you for asking a question!

'Are you over?' (meaning over the other side of the gate)

I am over this side of the gate. Good question.

'Are you drinking Coffee?'

Yes, I'm drinking Mommy's coffee.

I see him adding 'are you' to the beginning of a lot of things that began as a one word prompt and have slowly been added to..... Certainly a great show of learning on his part.

YAY... a little dance... and more YAY!!