Nathan will be starting the extended school year program in
just a few weeks. He will go back to the
same site he went to last year (but not the same school he goes to during the
school year) and that got me thinking.
How will these teachers and therapists, who likely worked with him last
summer, view his progress? I mean, I
have a hard time gauging it myself, but I see him every day. These people have gone almost a full year
since they last saw him. What will they
think?
And then I smiled.
This year, for the first time, I would like to go in and see the looks
on their faces. This year, for the first
time, I know that they will be looking at a child that has made progress- and
it will be my son! Is he still
stimmy? Ummm, yeah he is!! Is he distracted? Oh yes.
Does he notice the other kids? Rarely.
Did you notice I just said rarely? Last year that answer would have been
NO. I have caught him looking at Jack
lately- especially when they are swinging together. He will watch Jack’s face while he
swings. And he smiles. OK, that makes me teary. This is one of their first positive
interactions. John and I noticed it the
other day, and we were both like “look, look!!!” HUGE for him.
And the words, oh the words!!! He can say anything he wants to. He can repeat any word that I tell him
to. He can say mama, hi, bye, go, open,
all done, eat, drink, no, I want, bath, I don’t want, “Lawrence”, “gwen”, night
night, gra (for grammy), chicken, chip, cookie, pi (for pizza), meat, dog, fish,
watch- and many more. And he gives the
most incredible hugs and kisses. They
will be stunned by all of this. I am
stunned by all of this.
There is a much needed next step for Mr. Nate. And that is USING these amazing words that he
can now say. At this point, if he wants
something, he will still say “more”. And
we have to go through a list of possibilities.
If we say “eat” and that is what he wants, he will respond with “eat”. But when we get to the cabinet, he just says
more again. If I say “cookie” and he
wants cookie he will say it- if not, he literally pushes it away. Same with any other food. Now we have to get him to use these words
spontaneously. It’s a big transition and
can use his pecs as a tool- so he can hand us the picture of what he wants, or
even point. Sometimes that works.
And like all autism parents there is that paranoid part of
me. Is this going to go away? If I stop feeding him the words, will he lose
them? He has lost so much so many times before. I can’t take watching it happen again. So it takes a lot of strength to withhold a
word from him. His speech pathologist at Cisco Center, Miss Carla, will stand
at the door with me and I want to say “open door” and make him repeat it. She wants me to just stand there and wait, or
state “open door” and not do what I do, which is say “say open door Nate”- which then makes him
do it. It is a very small difference and
those of you with regular old verbal kiddos may be reading this and saying why
the heck does it matter? I say to you- I
totally get it! If someone had talked
about this when Jack was my only child I wouldn’t have gotten it either because
Jack would have stood at the door shrieking “open door” like 5000 times and
interrupting our conversation. It is a
totally different world. Carla is 100%
in the right. She can view it from an
objective angle. I on the other hand
cannot. I view it from a fearful,
anxious, maternal angle. I want him to
make this leap so badly. But it took him
sooooo long to get to where he is, and a bigger part of me wants to just
continue to hear these words even more. I
prayed for these words, I begged for these words. I sat in front of him saying them over and
over and cried so many days because I didn’t hear these words. And now- because I am a good mommy and I love
him- I need to stop trying to get him to just repeat what I am saying- I need
to work on functional speech. Deep
breath…ok, I can do this. It will have
to be in small steps. I do not want to
take away his current, relatively new, ability to communicate, even if it involves
my assistance. We can start with areas
where he is super motivated- food (he is our kid, ha). And we can take the next step.
If your son has classic autism, it is highly likely that the stereotypy is caused by oxidative stress. This can be treated with NAC. This was the subject of a trial at Stanford. If it works, it does so almost immediately. Less stimming will help increased speech. NAC is safe and needs no prescription. You only need to try it for a few days and it May be the best few dollars you ever spent.
ReplyDeleteThis gives me hope for my yet to be diagnosed,non verbal 2 year old, thank you!
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