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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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.
5 comments:
I am so with you on this! My son is 26 months old and was diagnosed as being on the spectrum 3 months ago. My son is also high-functioning, and most people that are around him for shorter periods of time feel that there is no need for therapy, that he is just fine. I also fear the loss of services. Although my son says numerous words/phrases, he will not let me know if he is hungry, thirsty, or anything of that matter and basically shows no fear. I often wish that his therapists (and others) could just spend 1 week with him so that they would understand.
As for sitting still, WHAT AN ANGEL. Be proud, mama.
As for the rest:
(((BIG HUGS))))
Oh how frustrating. But you can only do what you can do. For what it's worth, I do think that the children who have the positive outcomes are most likely to get there through natural, organic growth - those synapses in the brain connecting through maturation.
That having been said, I can understand your apprehension. It's hard to lose control, and it's hard when some one else doesn't get it.
Can you find a preschool that "gets" him? It's obvious to me: he's gifted. But he's also got pragmatic issues. You should look into montessori - in theory, that's the best program for some one who is uneven like that, super strong is some areas and weaker in others. Anyway, just an idea. Good luck, and don't let the system get you down...
Anonymous... I feel like there are A LOT of us out there who struggle to be accepted. Sometimes it's healthy - and sometimes it becomes an obsession (as it was this time for me). You are right. He is YOUR little boy & just remember that the only expert your child has is YOU!! I forget that all too often.
Laura, I will be honest with you- I hear that word 'Montessori' tossed around a lot and I have no idea what it means. I can Google it - but is there something practical about it that leads you to think that? Are we talking huge amounts of money?
Thanks for always commenting and giving me more insight!!! I keep up with your blog too & enjoy the different angle you come from. Thanks & keep it up!
Hey,
oh I feel so invested in you and E. I feel like we're in this together.
Yeah montessori can be pricey. I only mention it as a contingency if you get shut down for services. It's supposed to be good for gifted children who may be uneven in their skills. Montessori won't try to conform your child to a cookie cutter mold, like some preschools.
Brad is different from E. If I had a child like E, my concern would be twofold: 1) addressing his weakness, ie pragmatics, and 2) challenging him and keeping him interested. Montessori would be good for the latter issue, but you can always do that yourself. You already are.
Sounds like you're getting your ducks in a row on the public school side so that's probably your best bet. But you may want to look into montessori as a contingency...
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