It's been rough around here again. Damn. I hate even typing that. I totally get whining mother of the past two years.
I almost blogged last night after a very raw and real, holy-shit-I'm-losing-it, kind of evening that ended with a giant bowl of Ben & Jerry's Half Baked ice cream. (Thank you, Ben & Jerry. It was just what the doctor ordered!)
M has been a stimmy mess. And the stims are vocal. And they are LOUD. So basically his entire time at home, post-school, is spent flapping his arms, pacing around the room, and escalating his voice with total gibberish and the occasional recognizable word. (His latest is 'Tunnnnnellll!' a word we always all yell when passing through a tunnel)
I wish I could blame all of this frustrating behavior on gluten infractions (M has been gluten-free for two years) and have them magically disappear once the gluten is out of his system, but let's face it, gluten or not, he is still...severely autistic.
But here's the frustrating and confusing thing about the gluten...it's been B's 'fault' the past two days that M has eaten gluten. We've entered a little phase whereby B does not sit through an entire meal without getting up multiple times. I have to admit that this does not set well with me. I am a firm believer in sitting at the table until your done. I know that I'm going to have to instill this in him a bit more by actually taking his food when he leaves the table. It's not really fair to blame a three-year-old for his brother's issues, which makes me feel really terrible when I tell him to please pay attention when he's got bread or pasta on his plate. How the hell is he supposed to remember that sort of stuff?
And onto food in general...the food obsession thing has gotten OUT.OF.CONTROL. Not only does M spend his time fidgeting and vocally stimming when he is home, he also spends it hunting for food. I have to know where he is at all times because if I don't, I'll likely find him taking a bite out of a tomato (which he doesn't like) or biting into a banana peel or even an onion. I'm at a loss as to where to store my non-refrigerated fruits and veggies so that they are out of his reach. The boy is crafty. And if I make myself something to eat and turn my back for a second, or go to get a glass of water to go with it, I will inevitably turn around and have missed M in stealth mode, sticking his fingers in it about to take a bite.
Cooking is no longer a fun or relaxing thing to do. I spend way too much time herding him away from things I have just chopped, and worse, from sticking his hands into pans on top of the stove. He never used to do this!! What the hell is going on?
I know that this concern over gluten infractions is why doctors and nutritionists suggest that an entire family go on the diet together. I get it, I really do. I also know that it would probably be very beneficial for all of us to be gluten-free.
But you know what? I'm fucking tired of it. I'm tired of doing a thing that I don't see 'wow-me' results from. Yes, he turns into a hyperactive maniac when he gets a bit of gluten accidentally. BUT HE IS STILL SEVERELY AUTISTIC. Yes, his poop is more formed since we started the diet. BUT HE HAS SINCE REGRESSED TO BECOME SEVERELY AUTISTIC.
And then there are the supplements. I am a big believer in vitamins, always have been. Blood tests have shown me that M is low on iron, calcium, magnesium and vitamin D...this part is not hocus pocus, it is medically there in front of me to see as necessary. But you know what...even if I try to bolster all of those things that the lab tests show me he is lacking...wait for it...HE'S STILL SEVERELY AUTISTIC.
When we were on the plane home from Kauai I lost my cell phone for a bit. It turns out, I'd set it on my chair next to M and then gotten up to grab something for B. M had grabbed the phone and somehow hid it (not intentionally) underneath him. I was so worried that I'd lost the thing that the other half even had the flight attendant come over with a flashlight. The attendant asked me to tell her when I found it, so I did. It's hard to explain why your child didn't just tell you he had your phone, so I briefly explained the situation by saying that my son is 'non-verbal.' Afterward, the other half looked at me a bit offended and said, 'M isn't non-verbal! He talks!' It hurt my heart because I know that this is what he wants to believe, and here I am getting into that 'realistic' stage with him still lagging just behind me. M does not express his needs. Yes, there are a few recognizable words, but you know what? HE IS NON-VERBAL!
Clearly all of this has me worked up. I want so desperately to help my beautiful child and to bring him more into my world. It makes me feel horrid that our afternoons are spent annoyed at him and on edge because there is never a second without movement or sound. (funny...I just typed that and he is actually sitting still with his chew tube, barely making a sound right now. Oh, wait...never mind. There he goes again! I swear, that really just happened that way!)
And poor B, the world's most compassionate and patient child has even started to get bothered by M's sounds. He actually said to him the other day, 'M! Stop making your sounds! You need to say things like I want to play with you, or be my friend!' I told him he was breaking my heart--and he was--but being the funny boy he is, now every time he tells M to say real words he immediately turns to me and says, 'Am I breaking your heart, Mom?' Oh, that boy....!
Our Dan! doctor wants us to try an elimination diet next. He is without answers too and freely admits that our next step may need to be medication. Though I was at first open to the idea of an elimination diet, I am now at the point of saying, 'screw it.' Screw the diet. Screw the vitamins. Screw the no-prescribed-medications belief. We're all a bit miserable in each other's company at present, and this is just no way for a family to live.
I'll shut up now...and I may even get myself some more Half Baked ice cream.