So hard to write. Don't want to reveal to anyone what I know is going on. Why? First off, because I haven't been collecting the evidence to "prove" it. (I should be collecting all this daily data on what he eats, how he sleeps, observed ticks, voiding, behaviors, word usage, skill usage but who the hell has the time when you are running around after a 5 year old and a two year old trying to keep some semblance of sanity in the house?Did I happen to mention the 3 sets of meals I have to cook every lunch/dinner/breakfast?) But mostly I haven't been writing because it feels too awful and I feel so helpless to ever get out in words that truly epxress how we feel.
Zach is regressing. Again. WTF. The experts say it happens once, once they tell you. We have had two major regressions already. This could be a third. This might not appear as obvious as the others to most because he is still saying some words, but to Steve and I, it is so friggin obvious that we want to scream.
He is saying less words. The words he is saying are only after we force him, and for things he wants. No pointing to things that interest him. He appears unable to learn anything new. He has lost some skills such as using a fork and riding his bike (even though he was doing so minimally.) Game playing and cognitive skills such as identifying puzzle pieces seems to have evaporated.
And let's not forget the weird ticks/stims he is having. He is jumping around a lot. He is not sleeping well. The other night, he lay there tossing and turning. Whatever that was plaguing him, he couldn't tell us of course, was keeping him from sleep. He wanted to sleep - he wasn't trying to stay up and play, he threw his blanket over his head as if bright lights were the problem. He was in the dark, figuratively and literally.
This warrants a trip to the doctor - but which one? Neurologist who said that he is just normal? Pediatrician who accepts the view that this is the way it is? Asthma doctor?
In my heart, I know right now that whatever caused Zach's autism in the first place, beyond the genetic predisposition, but the stuff that is working on his nervous system, is doing it's thing as I write this. It has taken him away again. Not like the undercurrent that totally pulled him under the first go around, but a series of eddies that are still working to draw him away from us.
I hate this. I hate this. I hate this.
3 comments:
Breathe. Slow, deep breaths to help you stay calm so you can think clearly. (Well, it helps me.)
I don't know enough about your son's history to know if he's had major health issues but I would recommend asking for genetic testing (to rule out any specific syndromes which *mimic* autism) as well as a complete metabolic workup.
Next, is he on any meds right now? Has his dose changed recently? Conversely, has he gone through a growth spurt and maybe something needs to be tweaked?
My son is extremely sensitive to the slightest shift in medications (even antibiotics) and that alone can send him into a regressive period for a while. The hardest part is waiting it out and keeping a journal of *everything* that happens. I know it's a monumental pain in the wazoo but it really *is* important.
For example, we discovered that when we give Nik even the slightest bit of fiber supplement (to keep him full so he doesn't wake at 3 a.m. starving!) before bedtime, he wakes multiple times through the night with screaming, hysterical, painful gas. Wouldn't have made the connection without keeping the journal; really, we're so stressed and sleep deprived that who can remember what you gave your kid three nights before?
Sending prayers and cyber hugs your way.
I agree with Beth. Even the slightest change of things can cause regressive-type behaviors. On Thursday night, I went out on a "girl's night" for the first time in ... years? I wasn't there when Conor went to bed. He woke up at 2 am and was awake until 3 am. He came into our room saying, "You're back! I missed you!" I knew that I was the one that caused that. THEN, to make matters worse, I got to school in the morning and had forgotten Conor's game (reward). He was so upset that he decided to lie down on the bus ramp. I told him that I was leaving to go get it and it would be there in time for him to get his reward time. It didn't matter. It messed up his morning. He had a meltdown akin to last year's tantrums, and he ended up in a 3-person restraint hold. Heartbreaking. And hope dashing. But, I knew that it was the compilation of those two out-of-the ordinary things that caused his world to be turned upside down.
Hold onto your hope, no matter how small. Zack is in there. I promise.
It's heartbreaking. I am glad that you have friends who went through the same people and can advise you. I keep my fingers crossed that Zach will rebound again. I am looking forward to learning how his first day at school will turn out.
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