The one with the obsession...

So, the numbers thing where he knew all 53 songs on the CD by number is driving me UP A WALL!!!!! I will say it is interesting how very typical behaviors and very disordered behaviors mesh in daily activities. If there is one thing I've learned as of recently - one reason I get the 'oh, he's just being 2' so often is because he really is just being 2. Follow me...

We came home from our first dentist appointment right about naptime. I decided to give DS a bit of wind down time so that nap would go a little easier. After a nice cup of milk and a little TV, I started the nap routine as always:

Lay Down - Blanket On - Close Eyes - Music On - Close Door

Out of the bed....messing with CD player

'Lay down, No-no playing CD player. What # do you want?'

'I want nummer 3.'

'Ok. I'll turn on #3. Lay down. Do not get back up.'

*crying* 'nummer 53, nummer 53...'

turned it to 53

*sobbing* 'nummer 00, nummer 00'

opened CD player so it would display 00

I could keep going, but the basic gist is that he wanted me to do what he had been doing or else he would not be satisfied. His pattern is to lay down, listen to the song, get up when it changes, look at the number, lay back down, listen, get up when it changes...etc.. so on.....

This must have been how/why he memorized them all.

So, I moved the CD player to where he could see the numbers from where he was laying - thinking that maybe this would resolve the getting out of bed peice. Nope. This is the pattern, that's what he wants to do. It just gave him easier access.

So, I took the CD player away. And he goes hysterical.

As a mom of a 2 year old - I realize that I am pretty much always in a place to do something wrong no matter what decision I make. But this particular day I decided that maybe he was trying to manipulate me to stick around and I ignored him for a bit.

That didn't work either. He got more upset, crying so hard he sounded like he might get sick.

So, It was over. I got him out. Consoled him. We checked the mail together, and I put on Curious George. 45 min's later, I found him curled up asleep in the chair.

This is just what a 2 year old does. I've heard the stories of many other 2 year olds 'I want the pink blanket, no the yellow one, no the one with abc's, no blanket, etc...' but the sheer obsession with the routine he developed was I think the real disturbance and reason he could not be settled.

Poor little guy.

The one with crazy memorization....

Off my 'soapbox' as of recent.

Here is some FUNNY or AMAZING or just plain out WHAT???!! for you.

Saturday, we were going to a free trial of Little Gym. We went one other time about 2 weeks prior for another free event (yes, I am queen of the FREEBIES). I was trying to describe it to DS to jog his memory and see if he was excited.

"Remember the place with the big red mat that you ran all around in circles, and they had the big long board you walked across and mommy wanted you to jump off, and there were lots of other kids and you had lots of fun....."

His eyes got huge - and I could tell he remembered something.

His response:

"Five - Zero - Zero - One"

I looked over at DH and we both knew what he did - but I couldn't beleive it. Could it be?

I googled and yep - the address to Little Gym was "5001 Whatever Road"

We went ONE time and he remembered the number on the outside of the building.

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Yesterday, dad was playing piano for the kids and we were encouraging DS to sing along to 'The BIBLE', and 'My God is so Big' etc... He has a CD that also has these songs, and when dad stopped playing, DS walked into his room and said 'Nummer Thirty, Nummer Thirty'. So, we turned on his cd to number 30 & low and behold, it was 'The B-I-B-L-E'. Still there was that chance that it was a fluke, so as well intentioned curious parents do - we asked him what number 'My God is so big' is. "Nummer Five." Well, This particular CD has 53 songs on it. So, dad proceeded to cover up the screen on the player and change songs. "What number is this?".......

He told us - without error- what the number of each song was within the first few notes of each song playing and totally out of order at that.

We stand amazed. ONCE AGAIN.

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And last.....

Dad was reading DS an "Amelia Bedelia" book we picked up at the library for the first time. We are trying hard to get him to allow us to read to him, instead of him always reading the books. So, dad is reading along (remember he has never seen this book before) and flips the page. DS won't have it - dad missed the 'she said' on the page before- and DS turns the page back and points at them "grunt, grunt" pointing to the two words dad missed. Each time dad left out a word (whether it be by accident or on purpose) DS would not allow him to be done with that page until he read it. Then he would turn the page.

Silly boy.

The one with all the blessings...

"Yet who knows whether you have come to the kingdom for such a time as this?” Esther 4:14b

In studying the book of Esther for about 5 weeks now, I have come to rest on this question asked of Esther by Mordecai. He is basically saying to her that she needs to open her eyes to the bigger picture. She is a JEWISH queen of a Persian Empire. He is saying to her, look lady, you are looking at yourself when you choose to NOT confront the king - look outward and see the bigger picture and you will see that you are HERE in this PLACE at this TIME with these CIRCUMSTANCES for a reason.

I kept coming back to that. This place, this time, these circumstances. Who will my decisions affect? Once I answered those questions for myself, I realized, yep - I needed to hear that. My life is not haphazardly put together. I already knew that God had entrusted me with these 2 wonderful children. But, I am learning that He is leaving the HOW I am going to do it up to me.

My 'Resolution' post showed the slowing of a pace around here. My neurosis is much more containable. I feel more sane. I likely am a better mother and listener and person to be around. So, what happened after I made the DECISION to slow down the pace?

Blessings happened.....

It is so amazing to me to watch the Lord take back the reigns. I decide I'm going to take control for a while and whine and kick and scream myself right out of his Will for my life - but the moment I give it all back to Him - He shows me why I can take none of the credit and He is the only one who should ever be in control.

In real time, it was HOURS after I finally gave over control that the new day started and Jen was here for Speech. I felt at peace with everything going on. Never once did I feel defensive. I was able to bring up a new concern (scripting from Curious George) and a big success for the week (talking ABOUT something). At the end of the session I was rehashing DS standing at the door waiting for her to come in and I blurted out "I don't know what we're going to do when DS turns 3 and you don't come anymore...He loves you so much, what am I going to tell him?" Why i said that, I don't really know - but it was true.

Her response sparked the conversation that we have needed to have and haven't had time for. I never quite know where Jen is coming from, but today marked an occasion I won't forget. She said that while he is very well caught up from where we started it is very likely that he will qualify for ongoing analysis of his Speech progress. And if he doesn't she would fight for it. I think she was eluding to the fact that SHE could be that for him, and would see him monthly, but I won't put those words in her mouth. I told her that while I do see how wonderful he is doing and how well he is caught up on most speech goals, I fear that once I am taken out of his services that he will fall back behind. She said that he is more than caught up - but the Pragmatic (this word will become a theme) useage of his language needs a lot of work. She said he would test SO well on language that they would have a hard time seeing the problem - but to make sure they are looking at the Pragmatic and Social uses of his language and the problems become obvious. Once they have that piece there is more than enough evidence to give us at the least a monthly evaluation that I can be a part of and make sure his goals (IEP) are dead on. HALLELUJAH AMEN! She finally gave me something to work with. Now if I can get that down on paper - I have letter #1 to take with me to his IEP/Qualification meeting.

Then, Ron came for his weekly appointment. We spent about an hour working the TEACCH process - Work/Play/Work/Play. DS loves every minute of the work. Not so crazy about the play, but he joins us without too much restraint. As I've said before, Idle conversation with Ron is just not going to happen. Let's just say he's Quirky. However, today (not by accident, this proves my point on blessings from God) as he was packing up his car load of stuff, somehow a conversation was sparked.

He says 'Has DS had an IEP meeting yet?' and I told him we have had the very very basic meeting that doesn't tell you anything except that you'll get something in the mail and plan on 3 more meetings. I told him that the whole process confused me and that they don't seem too helpful on the confusion either. So, he says to me 'Well, that's why I like to be a part of all of my kid's Preschool meetings. We'll have to really fight for him. With a kid like him, we will really have to show the Pragmatic and Social areas that he struggles. They might qualify him due to his label, but from my experience, we're really going to have to fight.'

He went a lot deeper too. He said that he had 2 other little boys like DS and one qualified for a preschool program, the other did not. The little boy who didn't was much more aware of his surroundings and was able to pick up on very subtle clues in his environment to regulate himself. Several very specific issues came up - like that of standing in a line. DS isn't going to know why/how/when/etc.. on his own. These are the practical types of things that stand out to Ron. He may not need a LOT of help, but he'll need some. So Ron actually wants to push for Itinerant services in addition to his preschool. This will likely mean that the actual preschool itself will fall on our shoulders and not in the lap of the state - but I see his point and think that he's on to something.

Just as he was leaving I asked if next week was our last session & he told me that he is in the process of trying to push through 4-5 more sessions with us so he will still be our case manager and can be a

part of all the meetings regarding services after 3.

After he left, I was energized and exhausted all in the same breath. I stopped and allowed myself a

small cry. The corner of my mouth turned up and I smiled at the thought of having 2 out of 2 today

ready to fight for this little boy worthy of it all.

Thank you Lord for this peace. I told you I needed a break. I just didn't know what I meant.

Resolution

For days on end I wanted new justification for my son's diagnosis. I've got all these people around me making me so confused. Questioning not the Dx itself, but questioning his need for services. I also had many people making me feel better, but they don't actually KNOW him - so it threw in an added piece of self-doubt. The Roller Coaster has slowed down for me. I have come to terms with what is called 'autism'. I see my precious precious little boy. I see him in his thrilling abilities - I see him in his plain ol' 2 year old skin - I see him with his quirks - and I see his weaknesses too. But when someone Threatens his progress (in my eyes) I get so defensive. I literally feel like I am Suffocating - I can feel my Blood Pressure rise and my whole body tense. I have this need to search for answers - for someone to agree with me. I feel like anyone I talk to thinks I am a raging lunatic. I realize at the same time - Whoa... there is something else going on!

So - I Stopped. I opened my ears. I sat back and decided to take a break from everything except one thing: Why? Why does it bother me SO BAD? And this is hard for me to say - but I quieted the other noise, and I realized what it is.

I am deathly afraid of being wrong.

I need to write this down. I need to remember it. It would be ok if I were wrong. I don't believe that I am, but the idea of being wrong was making me feel like I was doing something wrong. Like advocating for him was making him something he is not. Like I was trying to convince people of something that was not true. And that is just a lie. From where? I have a PRETTY GOOD IDEA!!! Satan is the ultimate source if you are looking for something to suck the life right out of you..... unfortunately I let him in on this one. I let him pick at me and poke at me and I am DONE with him.

So to slow down. To get back on track. I took some time off from even thinking. I went through the motions of therapies and whatever else, but just stopped being so crazy about it. After my break & some sanity..... this is where we are:

What are the issues at present?

SLP with Jen: She might say aloof comments, but she has little if any bearing on his IEP/evals or qualification for Preschool. Therapy is going good. She is a good listener. She even reversed a met goal because of something I brought up. This is as it should be. Check.

OT with Mitzi: It's over. I loved her as a person, but she's not who DS needs. She is an OT assistant and through several people's advice, we are moving on to an OT who has 17 years experience with autism SPECTRUM kids & is more than willing to begin week #1 with an evaluation. Check.

DT with Suzanne: Great. She is a good listener & an even better advocate. She was very frank with me when I shared a more concise version of my fears & told me that while he IS doing very well and will score very well, he lacks many social/pragmatic skills that a 2.5 year old should have, has many obsessive traits, and is very willing to see the BIGGER picture. Check.

TEACCH with Ron: More that great. I will explain more below, but a man who I thought was just going through the motions with DS will prove to be my best advocate and help. Check, Check, and Check!

Contact in our future city: A long conversation with a wonderful lady proved very useful. I can't say she would ever know the impact it had, but talking with her was my turning point in those crazy 2 weeks. I needed to hear that it is ok to be confused. I needed to hear that looking up developmental milestones and expecting my son to not stop working until he does all that other kids his age do is ok. I needed to hear that I AM his expert (again). I needed to hear that things will be better once we move. I needed to hear that someone is already ready to work for us there - so a BIG check and relief for the new city.

PAT with Natalie: Have I talked about this before? Well, basically Natalie was the bridge between a mom with fears to a mom with a plan. She was so gentle and never jumped before I did. She gently led me to get the evaluation - but has stuck by my side all this way & was a listening ear this week when I needed to disengage a LOAD of junk. Check.

Service Coordinator Tammy: Eh. There's really no complaints - she does her job. But when I requested to talk to her after my confrontation with Jen and Mitzi (2 weeks ago) she was less than helpful. But, she has never let me down on the area that she can help me with - as the red tape here seems to be about 12 feet thick. Check.

Frustration

I pondered for some time on not posting this thought process that I went through 2 weeks ago... because it sent me into a week and a half spiral of confusion and distrust. I always trust God & trust in God...but there are times that I step off the curb and let my fears entangle me. This was one of those weeks. To be fair... to remember where I've been.. I will post it. My next post will be the resolution to this frustrating week to 2 weeks. I left it in 'draft' status since 2/2/09. So, that's how long I've been pondering....

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And for some reason, I forget that advocating for my child is not always going to be easy.

He is really doing well. Most people who are around him for short periods of time - or even just one day would probably think of him as a well mannered child who is smart and loveable. Just yesterday at church, he was commended for having the best manners in his 2 year old class. They have a singing time at the end with all the preschool ages (2,3,4yrs) and DS was the only one who sat still the entire time. He got called up front to sing with the teacher and he loved it!

These things make me happy. Proud. These things make me feel like we've done some great work, with even greater progress, and potential. These things most certainly do NOT lead me to want to take all his services away. That is one of my worst fears. Plus the fact that REALLY!!! REALLY??? He was the ONLY one sitting still..... and why do you think that is????!!!

Today during SLP, Jen wrote down several sentances DS uttered - most between 3-4 words each. That TRUELY is a great accomplishment for him. But after witnessing him speak several sentances she said 'I don't think he's going to qualify for any services when he's 3. Not just speech, but I don't think he's going to need anything at all. He's all caught up.'

AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA! *pulling my hair out in clumps* AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA!

You may find it distrubing that a mom wouldn't take that as good news. But the truth is - I don't believe it. I believe my son is doing GREAT. He has learned a lot! He has memorized a lot & copied a lot too. His unimaginable cognitive/memory skills allow him to fake the system all too often. CERTAINLY some of the sentances that come out are REAL, SPONTANEOUS, and Genuine. But as his mom, I see the rollover. I see what he retained throughout the week. I see how he uses what he's learned. I really do FEAR that all the evaluators will see things the same way as Jen. The Fear rocks me deep down when I realize that maybe I will be the only one in the room who sees him. who understands him. who wants him to have BETTER.

Am I off my rocker to wish that my child would come into the room to talk about what someone is doing? or ask questions OTHER than 'Where is the block?' Is it unreasonable to expect that he would ask to eat, tell me he's hungry, or thirsty - without seeing food or watching me cook first? Is it ok that I have no idea when he will have the ability to tell me that he needs to pee or poop? Should it not strike me that he still could care less if he's at the edge of play equipment about to fall and has no idea? Or that he doesn't have any idea the function of a stove or other dangers in his environment....

....... mid sentance typing here...... OT calls and asks if we are ready to stop services because he is all caught up on his goals. WHAT???!!!! What??!!!! Do you not understand him at all?????!!!!

I have felt much tension between his current OT (actually she is the 'assistant' and the OT has been out here twice. she is the one in control of his goals) as of recent. I have felt for a long time that she thinks we are using her service & that he really doesn't need it. The truth is that she works on goals that have nothing to do with what his needs are. We determined a long time ago that his sensory issues are very mild. He overcomes issues dealing with 'sensory' quite quickly & more of it is determined by WHO is presenting it to him... not WHAT it is. We have TUGGED at each other for more months than I care to admit. (Because admitting that means that I am admitting to not providing my son with the best care & I cannot bear to think about that at this moment). She paints with him, brings play doh, sensory balls, sensory putty etc.. I requested over 2 months ago that we work on Gross Motor issues & self help. Things that I think a 2.5+ year old should be able to do: Undress, Dress (at least have the want to & need help), climb into and out of the car, go up stairs w/o hands on steps, go down stairs one step at a time...Bi-lateral coordination. I even discussed with her the difference between 'Motor Planning' and Physical Therapy type issues, saying that I could contact PT if this is not where she is meant to help.

As I spoke to Kitty (the OT that doesn't actually work with DS) I made sure to bring up the issues we talked about working on 2 months ago. I told her how quickly DS learns and that I really needed someone capable of evaluating on a regular basis. If he picks something up - and he has mastered a goal, then why does it stay as a goal for 6 months. That makes NO sense to me. She said that DS needs an OTR - someone who is more trained and capable of evaluating and chaniging goals as needed. It basically boiled down to the fact that they do not have that capability and she recommended that we look elsewhere.

So elsewhere we looked. I found 2 ladies who are available to come out immediately. I spoke with both of them to make sure I was getting the best fit for us. The one we have chosen has worked with children all over the spectrum since 1991, been in OT for 17 years and was very open to discuss doing a full evaluation her first visit out because I feel very mislead on what OT is actually supposed to be & do.

I feel like I'm suffocating. Each time I sit down here at the computer to deal with ANYTHING relating to Autism...... especially the impending Preschool qualification/assignment... I end up with 25 open tabs and so much information I can't even imagine beginning to process it. Not to mention the fact that we will be moving who knows when & so I am researching BOTH cities programs at the same time in anticipation that I don't know if we will begin preschool here or there.

If you can hear the panic in my tone - i feel it.

I am done. For now. I need a break.