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A Taste of Summer

  • Posted on May 30, 2014 at 10:00 AM

Last weekend was a long weekend. Not only were the boys home from school for three days in a row, the heat index climbed enough for me to turn on the air conditioning. This being Wisconsin, I can’t help but point out that it was just last week that we had the furnace running at night. Of course, a house with better insulation and windows that can open safely would improve things, but I’m not making that kind of money yet.

More to the point, both Ben and Alex decided to be particularly irritable on the same sweaty day and lashed out at each other. Separating them was a challenge, because they both seemed inclined to take their frustrations out on each other. Neither one of them was particularly interested in being soothed or distracted. They went after each other, even though neither of them was the real source of their different frustrations.

I look forward to summers, because it means I’m not a “slave” to the morning routine regardless of my level of sleep (or not), which is particularly unpleasant considering I really do need a sleep study – if I can actually sleep for them. On the other hand, it’s nice for Alex and Ben to be separated for a good chunk of their waking hours, because they tend to get along better when they don’t get quite so much of each other.

Maybe this summer will go better. Maybe they’ll learn to like each other or at least not to hurt each other. Maybe. Maybe we need a plan B.

Ripples of Anxiety

  • Posted on July 25, 2012 at 8:00 AM

Alex bites his wrist.  Ben throws tantrums of sudden rage—explosions of frustration like shaken soda pop.  Willy bursts into tears.

This may be a sequence of events.  Each event may happen in isolation.  It’s just a taste of the ripples of anxiety that plague our house.  The ripples seem to be getting bigger.  Some days they seem more like waves—high and deep enough to drown us all in their wake.

Of course, that triggers the traumatic memory of a haunting article, written long ago now, where a mother’s murderous leap from a bridge with her autistic son was described as “an act of love.”  I’m not that far gone.  I’ll never be that far gone!

But I am frustrated.  If anxiety were an earthquake our house would be shaking persistently.  The few glass baubles I have left would topple from their perches and crash in a million pieces.  Picture frames would rattle until they fell smashing to the floor.  Considering the soundness of the structure, the whole house would probably topple in our heads.

The ground may not be shaking, but something inside of me is.  Like a tuning fork.  As many parents are I’m tuned to my children’s emotions, and right now the sound is bad.

I want a solution.  I want an answer or at least an explanation.  Hell, I’d take just about anything at this point.  But I’ve tried everything I can think of and I’ve got nothing on this.  The summer started with a state of upheaval and we’ve been heaving ever since.

I just want a day off.  Not for me, but for my boys.  I want one day where they’re all fine.  Just so we can remember how it feels and maybe get back to it.  But the ripples keep coming.  The waves are knocking us down.  So we swim.  What else can we do?

Waiting on Transition

  • Posted on November 23, 2011 at 12:00 PM

I attended Alex’s IEP and 3-year re-evaluation on Monday. By mutual consent, the meetings were combined and the material of the IEP represented most of the re-evaluation work, simply because nobody had any doubt that Alex still qualifies for special education services.

One good thing about the 3-year re-evaluation: When one of the therapists questioned why Alex wasn’t marked as qualifying for the special education services based on cognitive disabilities criteria, it wasn’t me who had to explain. The psychologist who was sitting in as part of the re-evaluation team provided the explanation, though he wasn’t a regular part of Alex’s education team.

His explanation was simple: We don’t know. Considering Alex’s sensory, communication and social delays and difficulties—all part of the autism criteria—we cannot effectively assess his cognitive disabilities; and, so we do not officially attach that label to Alex. All simple and straightforward.

The bad thing, of course, is that this had to be said. Again. Granted, the therapist in question is new to Alex. But the dominant assumption seems to be that because Alex is placed in a CD classroom he must have cognitive disabilities. We can assume—and many people choose to do so—that because Alex cannot effectively and consistently communicate that he knows how to do something, then he must not be able to do it. Of course, we know Alex knows his numbers 1 – 50, but because he cannot consistently prove those abilities through testing procedures, his teachers continue drilling him on them.

I almost wish we knew that Alex did have cognitive disabilities. First, there’s nothing particularly wrong with cognitive disabilities. You can still live a happy, productive life with cognitive disabilities. You can still be wholly and utterly a person with cognitive disabilities. It is a disability and does pose certain limits, and those limits do tend to put a ceiling on what you can do, but with enough effort from the support personnel and enough acceptance and accommodation, you can attain a pretty awesome quality of life. (I am not suggesting that’s the norm, but that it is possible.) On the other hand, not knowing is very difficult. Imagine being a twelve-year-old boy with a normal or above-average intelligence (distinctly possible since both his parents have above-average IQs), but being unable to express that intelligence in a way meaningful to others and to be drilled daily on the most rudimentary subjects like “What color is your shirt?” and “What comes after 32?”. If it were me, I’d be very frustrated, very agitated, and sometimes I’d get very angry.

I can, just barely, imagine Alex’s desire to break through that barrier—and the frustration and anger when he can’t. One thing about typical education strategies that always frustrated me was the rule that you say what you’re going to say, then you say it, and then you say what you’ve said. While teachers generally don’t follow this rigid public-speaking form, they repeat themselves a lot. As a child, I imagined how much more time I would have to play if they’d just say it once and leave it be. I didn’t need for them to repeat, repeat, repeat the same material over and over and over again. And I didn’t realize how important it was for the other students. It was frustrating. It was annoying. When I imagine myself as Alex with a normal intelligence, stuck in this repeat-a-thon for years, it makes me want to scream. It’s so pointless, so useless, and so very frustrating.

And Alex is frustrated. He does scream. He acts out in aggressive fashion. What if it’s not an inability to regulate his sensory system? What if it’s the combined frustration of being unable to communicate and being drilled with simple concepts day in and day out? What if his inability to regulate his sensory system is, in large part, a measure of his frustration in having knowledge that he cannot express and being drilled over and over on “meaningless” tasks?

I worry that this is exactly what Alex is going through, though I cannot prove it and I seem powerless to change it. Every time I try to nudge or push or shove the teachers into experimenting to see if Alex will find more difficult material more stimulating—I hit a brick wall, almost totally immovable.

So I hope and pray that the next year, the next school, the next attempt will bring about a break-through, either for Alex and his communication abilities or for me and my need to try to up the ante.

But for all my imaginings, the reality is that Alex’s sensory system is a mystery. We’ve tried just about everything any of us has ever come across and nothing can get him calm and keep him calm for more than a few seconds or a few minutes. Willy can go 0-60 with no apparent transition or cause. Ben can go 0-80. Alex goes from 0 to 150, and he has no in-between. He’s either asleep, at the edge of sensory overload, or over the cliff speeding for the crash at the bottom of the ravine.

My little guy faces so many barriers and we’ve tried so many things. And we’re stuck waiting…waiting…waiting for someone to figure out what we can do to help him.

Teaching to Adapt

  • Posted on May 16, 2011 at 3:51 PM

My kids are less adaptable than many children.  They want things to work the way they’re supposed to work, without any complications, and can’t cope when they don’t.  This can involve schedules, toys, technology, day-to-day activities, or anything else.  I’ve talked about this briefly in previous posts.

While those examples are especially poignant, these frustrations and aggravations are daily occurrences, especially with Alex and Ben.  Willy used to throw some pretty remarkable tantrums when things didn’t work.  He would throw himself on the ground and kick and scream, because he couldn’t deal with the stress of something not working as it ought to do.  Alex is more likely to jump out his frustrations on the trampoline, biting his wrist and screaming.  More frequently now, he’ll lash out at others by trying to bite or pinch them.  Ben is moving away from the aggression, and now he’s most likely to scream and flop himself on the floor.  Well, that doesn’t quite seem enough of an explanation.

It’s more like: Ben sssssccccrrreeeeeeeeeaaaaaaaaaammmmssss!

Back when Ben and Alex were both littler, their cries were distinguishable.  They’re still distinguishable from each other; however, they’re their cries have become universal.  If I was in another room, when they were little, I could tell by the type of cry whether they were hurt, frustrated, sad, or whatever.  Now, I can’t.  The only thing I can tell is the perceived extremity of the situation.  So whether they are hurt or their video won’t play right, they communicate it with the same cry that used to be reserved for physical pain.  Perhaps I’m misinterpreting their behavior, but it seems to me that their behavior indicates that their frustration is experienced much the same way physical pain.

Life only gets more frustrating, with more things that can and inevitably do go wrong as we get older.  How will my children adapt?  How can I teach my children to adapt?

While I try to lead by example, adapting with grace to the changes and unexpected troubles that come, I know this isn’t enough.  My children don’t learn best by example, by observation.  Besides, I still struggle with this myself and I wonder if the occasional poor example undoes whatever success we manage to achieve.  Even so, they need more than the example.  Yet, when the opportunity arises, they are often too lost in the frustration to learn how to deal with it.  Most of the time I cannot “bring them down” or stabilize their emotional energies without fixing the problem, and once I’ve fixed the problem they want to continue with what they “should have been doing” instead of trying to learn how I fixed the problem.

Has anyone out there succeeded in teaching their children to adapt?  How did you do it?  For Willy, he mostly “grew out of it” by learning in his own miraculous way to stay calm.  I’m not yet convinced it’s been our strategies and tools that have made this possible.  I suspect that Willy has accomplished a great deal of this on his own, beneath the surface of our interventions.  After all, we’ve tried much the same strategies for Alex and Ben with very different results.  Is there a strategy that works?  Or, do I just need to help my little ones cope as best I can until they have their own miracles?