Our journey in the Autism Spectrum

[Editor’s Note: An alternative, more appropriate title for this post really should be: An Annoying Mother Who Worries Too Much! ~Trust me, I know. I annoy myself!]

School is now officially out for the summer. It’s probably time I just push through this post and get it out there…before summer is over and we enter into a whole other mess of worries and anxieties and issues! This particular blog post has been sitting in my drafts for days and days now. I just haven’t been able to bring myself to fully think through and process the whole thing. I can’t seem to grasp (or don’t want to grasp) the thoughts swirling and spiraling in my head. I am not completely sure why but  my guess is because just thinking about it raises my anxiety. If I think about it too much doubt, worries, fears about whether or not we made the right decisions creep in.  Worrying and second-guessing come naturally to me so I like to avoid and “stuff” all things which I don’t want to deal with…like then maybe it won’t happen. Denial…I could not possibly be sending my son to all-day, mainstream Kindergarten in August where he will ride the bus, eat lunch and be in a class of TWENTY other children with ONE teacher! All. by. himself!

So if you remember, a few weeks back we had Henry’s big Kindergarten Transition IEP. In case you missed it you can read the prequel here. Since that time I have been slowly trying process what transpired. 14 or so individuals (not counting Grant and myself) sitting around two big library tables pulled together was a little intimidating. And when it came to discussions about data and percentages of pull-out versus push-in and weekly minutes in the triple digits….well, my brain shut that part out for fear of vertigo and vomiting. (Some day I hope to write more about my newly self-diagnosed dyscalculia~it has a name!) Anyway, if you asked me now, I would not be able to tell you exactly what even came out of that IEP…that’s how badly I block data and numbers. (Scarier still is that I do the banking and bill paying for our family!)

Anyway, what I do know is that he is roughly getting only about 20% special education help; mostly in language and social/emotional areas. This is good. Right? I think?  Occupational therapy is basically being reduced to only a consultative basis, which is reasonable at this point.

Overall I came away from that (2-hour!) meeting feeling pretty good. Still nervous and anxious about Henry starting mainstream Kindergarten but it wasn’t so horrible. I still  had an appetite afterwards. Not feeling nauseous after an IEP is a good sign for me so the fact that my husband and I enjoyed a very nice lunch afterward was a positive.

What my brain keeps circling back too, and I have said as much to his beloved SSD teacher, is that my little dude looks pretty darn good on paper. Everything we talked about and decided on in the IEP makes sense and seemed reasonable at the time.

But now…the more think about it, what my son is on paper is not what he always is in the classroom and out in real life. And what triggers his autistic traits to come out are generally what are found in the mainstream school setting; the hum of voices in a confined area, many things going on at one time in this setting, many people/classmates moving around him…that buzz or hum causes him to shut down, act out, become noncompliant, meltdown. We have yet to see any real success in this area without one-on-one help. Now I am wondering if I stressed this very real trigger enough to our new team. There was no talk of a para for him. I do remember questioning this at one point where I was “assured” that they would have resources to pull in someone for him if needed.

I have enrolled Henry in a mainstream summer camp starting next week where he will go two half-days a week with his younger sister, in hopes of introducing him to a more mainstream setting. He will also still get two half-days of SSD summer school.

I know I have to let go. I have to raise the bar for my little dude, nudge him. But his anxieties and meltdowns are so painful to watch. I feel them along with him. He generally doesn’t even want to talk about Kindergarten! I anticipate a shaky start, some bumps in the road but I have to believe we will get through it and he will succeed; surpassing my expectations as he is known to do.

For now, I am going to try to take one small step at a time. Henry and I will take these steps together…anxiety and all! We will see how the mainstream camp goes. We will talk about Kindergarten; like it or not. I don’t let him see my anxiety. I don’t let most people see it. Ever. But it is there still just the same as it is in my little dude.

Now I await the letter that will come in the next few weeks telling us who his new Kindergarten teacher will be. And then I will probably worry some more! I haven’t even begun to address my little dude’s social/emotional issues! In between all this worrying I hope to actually enjoy some of this summer…Get ready for us Mrs. Kindergarten Teacher!

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Comments on: "Processing the Twilight Zone (or Kindergarten IEP- Part II)" (7)

  1. I.E.P. meetings can be very overwhelming. They should have a staffing meeting with you beforehand so that you know what to expect and you can have an opportunity to digest it all and prepare your responses and concerns. Any autism mom has been through your exact worries. I have learned over the years…how to better prepare for these meetings. My boys are now 12 and 15 and have had ARD meetings since pre-school.

    Don’t hesitate to call another ARD or a staffing meeting with the essential team players to voice your concerns. Write down your questions and concerns. (I always forget when it’s a live meeting). Autism is really difficult to put “on paper”. It’s a living breathing organism.

  2. I’m walking into our preschool Team meeting tomorrow, because my little man’s IEP is expired. Well, not only expired, but missing several key services that the school has been fighting since January. Tomorrow, they are bringing 12 people. But I’m bringing 5. And I intend to walk out of there with some progress, but no IEP yet.

    This is so HARD! And the back and forth in our brains is hard too! So I’m right there with you wondering if I’m doing the right thing! Wishing you much luck in the transition!

  3. You guys will do great. Henry is VERY lucky to have you and Grant.

  4. This will be an amazing summer – there may be bumps – but your son has new adventures awaiting him and that is a good thing :0)

    You’re an amazing mom who is getting into the hardest part – letting go of some things, little by little – the HARDEST PART.

    XO

  5. […] ready for Henry’s Kindergarten Transition IEP and then when it was all said and done I did a follow-up piece. As I re-read these posts I could feel my anxiety and emotion about it all over […]

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