My kids are struggling. Parenting is hard enough. Parenting with a brain injury seems so much worse.
My oldest son, 8, is autistic. Since he started third grade, he has been struggling with multiple things. He is scoring poorly in reading. He is sensory seeking, and constantly touching his brothers’ hair, which they hate. They ask him to stop, sometimes screaming at him to stop. And he doesn’t stop. I find this especially triggering because I am trying my hardest to teach these four boys that when someone says “No” it fucking means no. If someone says “stop” it fucking means stop. I feel like I am failing to protect my other kids when he is touching them and they don’t want him to.
His teachers, and his parents, think he is lacking focus and attention. His scores for reading are in the toilet.
He is increasingly hyper focused on various things he finds on YouTube (trick shots, Rubix cubes, and other things).
He is argumentative and defiant. He will not do his homework when he’s asked to. When he does his homework, he forgets to turn it in.
Last week, his aunt took him to a birthday party at a trampoline park. On the way home, he repeatedly called her a “dumb idiot.” She said he said it at least ten times in the 20 minute drive.
He can’t be re-directed when he gets a thought stuck in his head. If he’s told no, he badgers us, asking over and over for whatever it is he wants that we already said him no to.
To me, he is showing signs and symptoms of both ADHD and OCD. These fall under the autism spectrum. But, I am not trained to know when one disorder ends and another begins. Nor do I know that it even needs to be defined. To me, he might need treatment for these things. In February, he’s seeing a pediatric behavioral specialist. It seems so far off. Help seems so far away.
All of this has made me so incredibly sad. I feel like I am failing this kid. I also hate admitting I no longer enjoy spending time with him. I really hope these people can help us, and him.
He has to enroll in tutoring after school due to his poor reading scores. We are also on the waiting list for him to have an OT eval to help with the sensory input. Help will come, I hope, but I’m impatient.
I’ve gone back to journaling, practicing gratitude, and meditating more. Before I react, I’ve been pausing. It helps, but sometimes I’m just in over my head.
My other son, who is closing in on 7, is globally delayed. He can’t do any of his own activities of daily living. He can’t feed or dress himself. He can’t bathe himself or brush his own teeth. He can’t wipe himself. He struggles to write and is majorly struggling with reading. He is also being tutored, but it’s not taking. We’ve started talking about special education for next year, increasing his OT appointments (again, waiting for a spot to open up), and we work with him every day on his reading.
There just aren’t enough people around to help with all of these things. I don’t know how people do this, along with working, and taking care of themselves.
My life feels impossible. I’m so tired.
I can’t tell what is just life fatigue and what is neuro fatigue and what is burnout. It’s probably all three.
I’m grateful for the help we do have, for the tutoring opportunities, and for the OT we are getting. I’m grateful for the behavioral health appointment next month. I am trying to be hopeful that things will get better. But, right now, things are just really hard.