It’s not going good
Being a disabled parent to a child with a physical deficit is becoming increasingly frustrating. I keep finding myself yelling at JJ because I can’t help him the way he needs me to. Sometimes I just want to cry about it but it’s never when I’m alone; it’s always when I’m facing my limitations with him.
The school wants my attitude
He’s 5 years old now and in kindergarten. He doesn’t know how to put on his socks or button his pants yet. He doesn’t have the motor skills in his hand nor the hand-eye coordination. It’s strange because it’s not a fine motor skill issue, and not a gross motor skill issue, either. I don’t know how to define or describe it to get him the appropriate assistance. What’s worse is fucking politics right now is driving my anxiety through the roof every time I think of JJ in public school. There’s no room for a few extra minutes for him. He’s already spent too much time in the principal’s office. He’s not a bad boy, he’s just restless and physically distracted– if that makes any sense. I’m not making excuses for his poor behavior. I know when he’s acting out, and when his teacher doesn’t have the patience for him. Send him to the office when he throws pencils on his table after you repeatedly tell him to stop, I will not fight you on that. But he has trouble standing still without moving at least one part of his body at all times…he shouldn’t get sent for that.
He has a sensitivity to tones and sounds (we’ve tried music therapy to no avail). He panics when he hears certain sounds; like not all alarm clocks have the same effect but ones that have a slightly deeper pitch seem to have a negative impact on him and he screams like he just found a masked murderer hiding in the shower. It scares the living Hell out of me every time he has one of these events. You literally never know when it’s going to happen because we don’t know what causes this reaction. ….but he shouldn’t get sent to the principal’s office when it happens at school. The teacher, who’s been informed of his “personality,” reacts to his panic without understanding, and it’s difficult to calm him. She sends him to the principal’s office where he’s stuck sitting, in trouble, for something he can’t control.
He gets lunch detention often because he talks…during lunch time. They then make him eat alone; they push everyone away from one end of the table and make him sit like he’s quarantined. It’s irritating and I’m honestly not sure what to do. He’s not “disabled enough” to receive therapy through school and because the state cut the budget for in home therapy for kids through Medicaid, getting a new appointment for therapy through the facilities here is incredibly difficult. All the slots are always full; even the afternoon slots where your kid has to miss school multiple times a week, for a few months a year, if not throughout the whole year. What makes this so much worse is that I feel like if I go to the school and tell them I think they are on the path to creating an unnecessarily turbulent ride for my child early in his educational career, they might take it out on him.
Frustrations in our limitations
I feel powerless. You’d think, considering our similar deficits, that I’d know how to handle this; but I don’t, and he’s getting older and I’m freaking out more. The other day I tried [again] to encourage him to button his own pants (he wears elastic waisted jeans to school and buttons at home for practice). I try so hard to be patient. I try to speak calmly for both our benefits. But I only have one hand. I can button his pants perfectly fine but I can’t seem to find a way to teach him how to do it on his own, and he needs to learn by the end of this coming summer. I have to rely on Kasper but he is never here when JJ is . After 20 minutes of trying, I failed and ended up screaming in his face that I
only have one hand, how do I teach you to use two? Use both of your effing hands for Christ’s sake!
It’s not his fault his right hand is weak, and it’s not his fault I don’t have two hands to use as an example, either. I know this as words are coming out of my mouth at a high rate of speed as if I’m angry at him and blaming him when it’s really….it’s me projecting.
His brace is already getting too short but because he needs to see a therapist before getting a new one, we got him longer socks to keep the bruise on his shin from getting deeper. I tried putting them on him the other day– I have few problems doing it with ankle socks and one hand even with his right foot, which he has trouble keeping straight and controlling his toes; and I remembered why I stopped buying him anything other than ankle socks when he was 6 months old. It’s too fucking hard. My hand can’t get in deep enough to spread it wide enough to get it on his foot. I need to find a way to roll it down like a normal person would. I haven’t figured it out yet. Point is, I ended up throwing the sock, which ended up looking like I threw it at him because I threw it down as I stood up. Poor kid…
I make it worse
I know there is a lot I’m doing wrong. The more patience I exhibit when dealing with my disability in front of or with him, the better off he will be with both his deficit and his own patience. But, I’m not that person and I never, ever, never…ever have been that person. That’s a huge problem. When Skas was born and cried first thing in the morning, I had to repeat to myself before picking him up:
Smiles, we always smile, baby only needs smiles
It sounds stupid, but it worked and I was able to smile as I prepped him for breakfast. It kept my patience in check until I could break safely away for a cigarette and coffee while getting ready for work. I think the stroke damaged the part of my brain that reminded me seconds before reacting to my baby/child that I don’t want them to be angry like my genes tend to help me be. I don’t want either of my kids to learn that from me.
Have to find and be that voice
I always tell JJ to let me try when he needs something and comes to me. He asks then tells me, “But you can’t do it.” Do you know how painful that is? It hurts so badly that I can only smile and beg him to challenge me and my arm. I never know if I’m going to be successful or not. Most times I am successful, but now that he’s getting older it’s getting harder because things are getting more difficult for his hand. Shoes are getting more complicated, buttons and zippers are popping up on more clothing and items (backpack, lunchbox); and, just because I could help him the last ten times does not mean I can do it this time without a cuss word or four.
So, after I convince him to let me help and fail miserably, it’s a terrible experience for everyone around. It hurts JJ most in the end because he sees my awful reaction and probably feels ashamed or blamed, and he’s learning very poor character behaviors. He also will eventually stop coming to me for anything and I’ll feel like a total shit parent because I was aware of it all going down as it went down. Sometimes I’m lucky, however, and I can rebound somewhat quickly by saying something semi-positive like:
Well, even though I failed and cussed, at least I tried. Maybe next time, eh, turd?
It’s usually the best I got. I don’t know what else to do. I think to myself that he needs to know I tried and will try again even– if I have to say it with my teeth clenched to keep him from seeing the hurt from frustration through my tears. I need to work on ending all my failures with positive connotations, not just some. He needs to hear and learn how to fail with some sort of grace and dignity…
Work towards the greater good
I have to work harder to be better for him. He deserves that and more. He will face challenges, just like Skas, but he will have a steeper hill and it’s my job to make sure he knows how to inhale-exhale properly while on his journey. How better to help him than by setting the example myself? I can’t think of who it wouldn’t benefit. So it’s all a matter of me putting in the work…. You expect that, as a parent; at some point you realize old people always saying parenting was a full-time job were not messing around. I just didn’t realize that it would require so much work on myself and that will be tiring and pointless for myself at this point in my life but for JJ? Do I have any other choice?