My little one who I got an autism confirmation for (via clinical psychologist) has been steadily getting ‘worse.’ Worse in that I am sleeping less (her dad doesn’t hear her) and she is screaming more and longer.
I did send out a “Help me” text to some friends maybe a week or two ago telling them that I didn’t know heart was capable of breaking any further. Telling them that I felt as if if it broke any further, I would literally stop living. This was triggered by her father saying, “I can’t believe this. She used to talk. She used to count to ten with me. But now she doesn’t.”
It broke me. I live this alone. As the norm is, the dads are generally (mostly, not all, but even research has found it) less ‘heartbroken, accepting, stressed’ by their children’s neurodevelopmental issues. They are more in denial, in a sense. And also, I live it alone because he’s not here, I am. He didn’t sit there with the psychologist for two hours discussing what changes I’ve seen, what stopped, I did. He does not witness the twin trying so hard to have a bond and being ignored. I do.
But when he spoke about counting to ten, it broke me. They used to enjoy it so much. And when he got to ten, she’d smash his open hand over her face (Told you she’s a sensory seeker) and laugh her head off! But now, the counting together is gone. The laughter we all knew would come, is gone.
The next morning, I sent my friends that text of utter brokenness.
This morning, I phoned my son’s neurologist to make an appointment for her. He’s on medication for his meltdowns. And I know it has a sleepiness side effect, which is why we give it at night. I knew that when our girl turned maybe five, she’d need it. I HATE her being in distress and I can’t calm her. I hate it. A mom want her children to be happy, not crying and hopeless. It tears me apart when the spells come. And they’ve been coming so often and lasting so much longer and having fewer solutions, that the young lady who cleans the floors and bathrooms in the mornings even asked if there’s nothing we can give her to help her.
In a group for autism moms that I’m in, a mom of a two year old mentioned that her little one had been put on the same medication as my son is on.
He is only two? Is it possible for a two year old to be put on it already?? I might as well go find out. More importantly, I need to find out if she does need that brain scan or not.
So, I made a call this morning to the neurologist’s PA. As she asked if she’s been seen before, I told her no. She asked if I know the doctor is only part time, I told her yes, my son is a patient. That got the emotions bubbling… And then the kindness of her voice as she told me the next available opening is only in June, and asked if I’m ok with that or if I want to be informed should there be a cancellation, undid me.
I’m desperate. I definitely want to go sooner. So I said yes please.
Ended the call.
And promptly wept.
Faking happy is hard. Constantly being surrounded by children I need to pretend to be ok for is lonely. I never get to just let it out. When nothing helps my angel, I can’t just sit there and weep along with her. I have to be strong.
But sometimes, sometimes I’m not.
PS. The beauty is that we know it’s in there. Last Sabbath while I had taken my eldest daughter to the doctor, she apparently counted the circles on her sensory chew that sometimes hangs round her neck to help calm her down. So she can. She does not interact or talk to or with us anymore.