The Toll of Allism
As hard as my son struggles with his allism, he is not its only victim.
When your child has allism, there is no break or vacation. My son woke frequently in the night - waking every two hours until he was two and not sleeping reliably through the night until nearly three - and the only thing that would soothe him was human contact.
His hunger for connection is insatiable.
When I was a child I played happily by myself for hours. But at eight my son is still fixated on people. He wants to talk, he wants me to play a board game with him, he wants me to “verse” him in a minecraft mini game.
Sometimes I feel like he is a vampire sucking words and energy right out of me. When he is around talking happens. He will talk or demand speech from me. Even in his quieter moments he wants to be touching me, leaning on me.
It’s how his brain is wired, and I understand that and I accept him for who he is - this loving, generous, good hearted boy child of mine. And it comes with those “allism superpowers” that makes children with allism such sweet angles.
“He gets along with every kid in class. Everyone loves him.” His teacher reported in his report card.
But when you are the caretaker of your child, there is no break from the overstimulation, the constant flow and deman for words. No time to dive into a hyperfocus to recharge.
His challenging behaviours sometimes lead me to snap at him - his affectionate nature means he is forever trying to hug and kiss or pick up or talk to his baby sister and she loses her patience sometimes.
“Don’t TALK to me!” She says impatiently.
“But I just want a huggy...” my son will implore. Then I remind his sister that this is how her brother shows love.
Of course I don’t make her accept his attentions but I think it helps her to have his behaviour explained. And I just keep coaching my son to help him understand that if he just gives his sister some space, she will give him a hug when she is ready.
And she usually does. She’s quite huggy herself, as long as it’s on HER terms.
I can only work part time due to the demands of raising a child with allism. His class starts at nine and ends at three, and then he needs me to pick him up and feed him a snack and talk to him about his day.
He and his sister and their relentless needs sometimes drive me to the point of snapping at them.
And then I feel terrible because this isn’t their fault.
It isn’t their fault that I’ve been in burnout for years now.
It isn’t their fault that I’m overstimulated and drained from masking all the time.
It isn’t their fault that I have to pop Advil every morning to keep the headache at bay.
But it is because of them. Because allism parenting is incredibly stressful.
In fact studies show that parents show higher stress levels than childfree people. The stress comes with the job.
And when your child has special needs like excessive human interaction demands, it’s bound to take a toll on a non-allistic parent.
I need solitude the way he needs companionship. I need silence the way he needs laughter.
And I wouldn’t give him up for anything in the world.
It won’t always be this stressful. My husband and I are working to teach him how to be comfortable in his own thoughts, how to rest and read, how to respect people’s bodies instead of getting up into their faces or grabbing them all the time.
And he is so so much improved from where we were when he was a preschooler.
But if we ignore the toll that this takes on parents, we do a disservice to the kids. How can I give my son the unconditional love and care that he deserves when I can’t even care for myself?
Respite is incredibly important and while I sometimes feel like I am alone in this, I know I’m not.
I have friends who will take my kids to give me the time alone in the house that I crave, and sometimes I schedule a day when I can stay home while they are at school and do nothing and talk to no one.
And I always feel guilty when I do it, but I know that my children deserve a parent who can give them all they need, and when it feels like they need more than I can give, well, then it is up to me to fix that.
And I have to learn to forgive myself. People always praise how well I seem to cope given the circumstances. But I don’t feel like I’m coping at all.
My doctor wrote me a prescription tonight for an SNRI. I’ve tried SSRIs without any luck and while my Wellbutrin helps it hasn’t been enough lately.
Here is hoping this will help give me the strength I need to give my children the support they need.
