Our journey in the Autism Spectrum

Posts tagged ‘denial’

The Rabinowitz Bubble

Oh. Yeah. Autism. We have that here…I “forget” sometimes.

Maybe it’s because we’ve had some really great successes lately or maybe it’s because it’s a holiday and there are celebrations with fireworks and BBQ’s and carnival rides going on all over town; a blatant reminder of where we will NOT be. Perhaps it’s because our newest phase (and phrase) is “I’m scared”. Of everything. All the time. Probably it is all combined with the fact that Henry’s not sleeping at night which means Grant and I aren’t either. Whatever it is, I’m tired of it (literally). And bitter. And sad. I am sick of acknowledging and celebrating our many successes over the past several months only to get kicked in the gut with a reminder that autism is still around with meltdowns, inappropriate outbursts, echolalia, seemingly bizarre behaviors and sleepless nights.  Although it’s not like we can ever really “forget”…it’s some denial, wishful thinking, and hoping…and then there is the guilt for feeling all of the above.

I usually see the good things about autism. The amazing things about our son which are ALWAYS there too! His gift for building, his incredible imagination and way of seeing things around him! His sense of humor and clever mischievousness. His true intelligence! I wouldn’t want to change any of that.  EVER. Our son is perfect just the way he is…

I try to remind myself of how far we have come and our many successes, the great leaps Henry has made lately. These are great, positive things!!! His communication, dotted with insightful comments and thoughtful questions has really improved! His ability to handle visiting friends and family for HOURS is wonderful! Huge steps! This summer we have been able to get out more and more! We have adopted Aaron Likens’ phrase of “expanding our Kansas”. And we have had a lot of good times! But I notice, that the more Henry can handle these visits, the more we are able get out, “expand our Kansas” and hang out and visit with our “typical” friends and family, the more I am aware of how different Henry is; how different our family is. And then comes the gut-kick, that reminder, of how we are anything but typical. That all of these successes for us take so much damn work to get there… and a lot times doesn’t “stick” without a lot more work!

I guess that’s why I like our little Rabinowitz Family Bubble. Here, we are normal, typical, comfortable. Sure the sleep issues and outbursts and other assorted issues still occur but we can look at them as normal daily occurrences and just a part of our way of life. It’s okay. I can “forget” about the autism and comfortably think that EVERY family is like ours. Surely they must be. Right?

I don’t mean to imply that our “typical” friends aren’t wonderful and patient and accepting. They ARE and we are very lucky and truly grateful for these friends! But even as awesome as our “typical” friends are, there are moments, bits of awkwardness, where they just don’t always know how to talk to Henry or deal with his behaviors. I see this. I feel their awkwardness, their not understanding, and I then feel uncomfortable for them. I am embarrassed by Henry’s odd behaviors and inappropriate outbursts.

Now that being said, for our typical friends and family who read my blog, before you call us or email us…no, it is not YOU in particular that I am referring too! This is a generalized expression of our different experiences with our typical friends over time, here and there…so, please, no worries.  I am making no personal accusations or blaming or pointing fingers! It’s all good. It just is what it is. I don’t expect everyone to “get it”. God knows I don’t want everyone to “get it”. With 1 in 110 children born with autism, WAY TOO MANY families “get it” already!

Yeah. Autism. We have that here. We will always have that here. But today I don’t like it. I am not happy about it. I don’t want to even acknowledge it! Today I just want to stay isolated in our little bubble and pretend that we are normal. Typical. Just like everyone else. Another day, tomorrow probably, I will again be able to accept and even celebrate autism for what it is in our lives. Back to work. It will all be okay. But not today. Today I just don’t have the energy for it. Today working with autism hurts and I want to find comfort and respite in our bubble.

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Processing the Twilight Zone (or Kindergarten IEP- Part II)

[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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