Our journey in the Autism Spectrum

Posts tagged ‘language’

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!

Slinging Webs and Canacholearnology

We have a lot of unusual verbal exchanges that go on in our home. Usually these exchanges involve Henry as we try to figure out what the heck he is talking about. Sometimes it is downright frustrating, but most times it can be very humorous.  We encourage some (okay, a lot) of his funny Henry-speak more than we probably should but we are just so thrilled when he wants to talk and carry on any form of conversation that we feed right into it. He is our little dude of few words, stringing only one to three words together at a time if you are lucky. He shortens the sentences he chooses to speak down to the bare minimum required to get his point across…unless he decides he wants to share…and then look out!  His speech is fairly clear and he does have a decent vocabulary but he also still does a lot of garbled jargoning in between and he has developed some words and/or phrases of his very own that we have yet to decipher. To add to this, Henry can be an extremely fast talker. I can be a very fast talker myself but even when I try to say some familiar phrases as fast as Henry, I get nowhere close to his speed!

Last night’s exchange is just one small example of a conversation with Henry. I was coming down the hallway last night making my final rounds on the kiddos expecting the littlest ones to already be fast asleep. I was saying goodnight to the oldest, Molly, as she herself had just tucked in, when I thought I heard something come from Henry and Lucy’s room. I peaked in and saw Lucy was down for the count.  Henry, however,  was sitting up in bed, his big brown eyes blinking at me in the semi-dark.

“Hey, little dude. What are you still doing up?” I move over toward him and he scoots over and makes a place for me with his “friend pillow”.

“I can’t sleep, Mom.”

“Why not?”

“I’m afraid of nightmares you know, Mom.”

“I know you are buddy but you haven’t had a nightmare in a long time. And you know they are not real. They are just like pretend.”

“I know but I want a Spiderman costume that shoot webs.”

“You do?”

“Yeah. It shoots webs.” He demonstrates holding his one arm out straight and using the other to press some kind of web trigger on the outstretched arm.

“Well, you need to get to sleep, mister. Can you turn over now and try to sleep?”

“Well, yeah, but I need a Spiderman costume. It shoots webs and it is red with webs all over. Can we get one?”

“Maybe when it gets closer to Halloween we can look for one but not right now. Now is bedtime.” I am not sure where this conversation is going at this point. Right now we are talking very quietly, matter-of -factly. Nice. Sometimes these conversations can take quite a turn toward tears and meltdowns…I am treading carefully.

“But I NEED one!” More in a tone of exasperation than anxiety. I am only slightly relieved by this.

“How come you need one right now? Can you tell me?”

“Well, a Spiderman costume shoots webs.” He demonstrates how that works again. Also,in case you haven’t noticed, Spiderman is the superhero of the moment. Or at least for this evening.

“Yes, you showed me. It sounds pretty cool. What would you use the web shooter for? To keep away bad dreams?”

“Yeah. But no. It’s for canacholearn. I can use it in my lab and then I take it and shoot it. And then the bad guys get the scientist and they use if for science.” More demonstrating web shooting. “And then Spiderman and his webs shoot ALLLLL over!”

“Henry, what does “canacholearn” mean. I don’t know that word.” It’s pronounced KA-nacho-LEARN. Well, at least the best that I can tell. He says it so darn fast!

A sigh comes from Henry with what I thought were his eyes rolling at me. (In the semi-darkness it was hard to tell but I am pretty sure that’s what I saw). I have asked him on many occasions what this word/phrase means. “Science mom! Canacholearn is like science! I tell you this before!”  Sometimes he says it is for science~either way, I still don’t have a clue! Clearly there is the “uh. Duh?” tone in his voice.

“Hey, Henry, can you say that word again very slowly? I really would love to understand what you’re saying.” This “canacholearn” phrase has been driving me nuts for months and so I feel compelled to nudge the issue! What the heck is it?!?

“If I had a Spiderman costume that shoots webs I canacholearn and go to my lab and [garbled jargon that I don’t even know what letters to use to spell it out that goes on for about 15 seconds] and shoot it.”

Gee, I didn’t even have to ask him to use it in a sentence.

He doesn’t slow his speech at all but actually says this even faster. I blink back at him and I see that he is holding back a smile. A slight twitch in the corner of his mouth reveals his dimple and gives him away. That stinker!  He knows what I want and he is not giving up any of his secrets tonight.

“Okay, Henry.” I smile back at him to let him know he has won this conversation exchange. “It’s time to try to sleep. Think you can sleep now?”

“I don’t know. Yeah. But no. Okay.”

I kiss his forehead and he hugs me and kisses me back. We just look at each other for awhile and then I see those deep golden brown eyes slowly close.  I lay there for a bit longer with him, watching him, so peaceful. I wonder what is going on in that amazing brain of his. I try to imagine pictures, thoughts, words all flashing  at a speed I cannot comprehend. I am in awe of my little dude. I hope someday I will be smart enough to understand him but mostly I just hope that he will know that I am at least trying to understand.  He says he wants to be a scientist when he grows up. Maybe he is preparing for Canacholearnology. What ever it is I know he will be brilliant!

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