Yeah, I said that today.
Actually, what I said was, “Today is one of those days when I want to go outside and scream ‘why can’t my kid be normal?’.
I said it to Adam while trying (and failing) not to cry. And then a little later, I posted the same thought on my Facebook local area autism moms support group. One mom almost immediately wrote back that she had a whole week of days like that recently and she understood how hard these times are. Then another member, one I’m not terribly familiar with, came back with (and I’m paraphrasing here) that she was offended that I wished for Simon to be “normal”, that he is his own normal, and autism is a beautiful thing that should be embraced, and maybe if I tell her what the problem is then she can help me learn to “accept” my child.
What. The. Actual. Fuck?
I love Simon more than anything. Anyone who knows me knows that. He and I have had a very special bond even from before he was born. I love his quirks and his giggles and I am so insanely fucking proud of him watching him make progress in his therapies. I am doing my damnedest to make sure he has everything he needs to make it in this world. One of my biggest sources of guilt is not so much about Simon, but about how my other children are being shunted to the side in deference to what Simon needs. There is much guilt here.
Which brings me back to this morning. Ever since we moved, Simon’s sleep habits have both improved and regressed. Improved in that there are now minimal tantrums at bedtime and nap since we discovered that he wants his door left open. That’s cool, dude, whatever helps you. However, now, when his melatonin wears off, usually around midnight or 1am, he is coming and climbing into bed with us, and the only way (the ONLY WAY) he can seem to fall back asleep is to put his hands down my shirt between my breasts and pinch my skin. I am not kidding or exaggerating. I have bruises. You try sleeping like that. If I stop him from doing it, he gets stressed and upset. Even under the best of circumstances, he will be awake for at least 30 mins and there have been 2 occasions when he has been awake for 3 hours. A second dose of melatonin helps, but his sleep (and mine) are still horrifically disrupted and I need my sleep, man. I get ragey when I’m this tired.
Last night, he came in at 12:30 and started accosting me. I kept pushing his hands away and he kept climbing all over me. Finally, after an hour, I had had enough. I gave him another melatonin (a battle in itself), carried him back to his room, and dumped his ass back in his own bed. He then went and climbed into bed with Eleanor. This was 1:30 or 1:45. I sat in there with them until 3 waiting for him to fall asleep and then I went back to bed. He came back in at 5, fell asleep again, and was up for the day at 6. Adam and I take turns getting up with him in the mornings and today was my turn. He was a right little shit this morning, grousing about everything and deliberately doing stuff he knew he shouldn’t do just because he knew it would get a rise out of me. I was exhausted and at my wit’s end by the time Adam got up and I went to lay down for a nap. Simon got upset by that and spent the hour I was trying to rest pulling on the door knob and kicking and banging on the door. I got up even more tired than I was before and started snapping at just about everyone, so in order to get a break, I left to go do the grocery shopping. As I was leaving, I said to Adam “Today is one of those days when I want to go outside and scream ‘why can’t my kid be normal?’.
I was at the store and checking my shopping list on my phone when I saw the FB notification come through. And I read that message from the offended lady. And I cried. Right there in the frozen food aisle, I cried. I cried because I felt like the shittiest mother ever. All because I dared to express my overwrought feelings that I wished my child was normal. My wish that he didn’t always have to struggle. My wish that our family didn’t always have to struggle.
I love my son. I will always love my son. He brings me immeasurable joy and his challenges are teaching me to be a better person. Autism or no, he is my love. He is my life, as are all my children.
But, yeah, on days like today, I wish he was normal.