Well, yesterday was a bit of an emotional day for this Mama. I found out that Nathan will need more at home therapy than I expected, and I felt very discouraged about it. It turns out that due to his inability to locate his body in space at times, he has underdeveloped muscles in his trunk to shoulders area. So basically, the upper half of his body is pretty weak compared to kids Nathan's age. This weakness even causes him to breath heavier than he should at times. So, there's therapy to help him breath properly, therapy to help his muscles develop, and therapy to help him locate his body in space. This will require us swinging him in a hammock (which thank GOD we have one!) from side to side and front to back. This will help his vestibular system to basically center itself. Also, because of this vestibular issue, Nathan is unable to locate where sound is coming from. So, for all those times people have shouted to him across the room, or the yard, or where ever, and he didn't respond, he wasn't ignoring you.. He literally could not process where the sound was coming from, therefore he didn't turn towards it, or hear it for that matter. Kate, our OT, said that the only way Nathan really responded to her was when she stood directly in front of him. So, because of this, Nathan will need audio therapy twice a day for 30 minutes at a time every day. Right away my mind was filled with discouraging doubt. How am I going to get Nathan to want to do this twice a day, every day for the next 8 weeks for 30 minutes a pop!? On top of that, when I dropped Nathan off at school, his teacher informed me that since SPD is not considered a "medical" issue, the OT at school is not funded to help kids that only suffer with SPD. So basically, the school cannot provide OT for Nathan. The only way he'll get it is if we supply the supplies they would need. I'm ok with giving the supplies.. What got to me was the fact that the schools don't consider SPD a medical issue. His nervous system is all jacked up! How is that NOT medical? My child can not process things the way a "normal" child can.. How is that not medical? It doesn't make sense to me. Don't get me wrong, his teacher is incredibly helpful and she still has regular conversations with the OT to see how she can help Nathan... I was just pissed off at the system. I don't think people realize how difficult these kids with SPD have it. People need to be more aware of this! These children need help and support. Without it, they face horrible self esteem issues, they may lack friends, and be filled with confusion and anxiety. These children are often set up for failure as well. They cannot complete some normal every day tasks that someone without SPD can. For instance, if Nathan is sent into his room to pick up all of his dirty socks, he may miss the ones that are right in the open. Not because he wasn't looking, but because his system gets overwhelmed by how many other things are in the room. I just thought he was being lazy, but he literally couldn't see them. Imagine sitting in a room full of things and not understanding why your mind can't seem to focus on just one simple thing... Nathan explains it by saying "his brain feels dizzy."
It frustrates me how overlooked this disorder is. These kids have a chance to have the confidence and abilities of a "normal" child. But without help, chances are they won't get it.
On a lighter note, Nathan and I had a talk over our lego building time last night. I asked him how OT was going.. He likes to call it "central therapy" and he LOVES Kate! I don't know how he came up with central therapy.. but I think it's cute. He said it's really helping him and he likes it a lot so far. I asked him in what ways he thought it was helping. He said, "you know, it helps me make my brain stop. I stop wiggling so much, and I can pay attention more in school. And I'm not naughty." He said he wishes that Kate could move in with him so he could have "central therapy" all the time. It's cute. I love how he just thinks the world of her. I think he sees her as the one person that really understands him. I thank God for that.
Last night I got a glimpse of the muscle weaknesses Kate was mentioning. Our neighbor went to push Nathan down the slide, and since his upper body is much weaker than normal, Nathan just folded in half and tumbled down the slide, scraping up his side, smashing his glasses into his face, and hurting his tummy. A kid with more steady upper body strength probably would have just gone down the slide, but Nathan, not so much. It didn't help that the boy pushing him was a lot older and stronger, and it didn't help that it caught Nathan off guard either. But he just flopped like a rag doll! The Mama bear in me broke out and I snapped at poor Allen. I felt bad for Allen, but I felt even more badly for Nathan. His body is still sore today to the point that he cried after getting dressed because his underwear scraped his raw skin when he put them on.
Ugh, I'm just getting to the point where I want to scream at the people who call him naughty, or yell at him for not listening to them. I just want to scream into my pillow sometimes. Ask God why my little boys heart has to hurt so much? Why do the schools not find this disorder serious enough to want to help these kids more? I want a voice, I want to inform people that this is serious, and it needs to be looked into more. Know your kids! Know their actions and behaviors, and if something feels a bit off and your gut is telling you something about it, listen to it! Help your children! Because if you don't, no one will! Set your kids up for success, not failure. Don't let fear of how a diagnosis may reflect on you as a parent. It's not about you, it's about your kids. 1 in 20 kids have sensory issues.. Some pretty serious, some not as serious.. But they all need to be acknowledged. They all need some sort of help. Read about it, be informed and do not fear a possible diagnosis. There is help out there and there is hope! Nathan's future will be a lot better now because he's receiving the help that he needs. And now, I can say I understand him so much more. There were so many signs that he displayed since he was an infant.. I probably would have recognized the signs long ago, like around 2 years of age had I known them.
I'm hoping to convert a part of our basement into an integration therapy area. If anyone has any old bean bag chairs that they want to get rid of, I'd love to take them off of your hands! As long as there are no holes. (If they're patched that's fine) Thank you all for your support, your kind words, and prayers! I can't tell you enough how much I appreciate them. And I know Nathan will someday too. I will not give into guilt from actions of the past, but I will hang onto Jesus and the hope that he provides. Nathan has the help he needs now. Nathan has a chance at a better future, and a chance to be understood.
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