the Video did the trick!!

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

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 ~

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. 


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...

 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.



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...

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.



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.



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!

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

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! 



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....

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

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

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...

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

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.
"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.....

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...

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."
"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

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....

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

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

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....

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.