It is a daily struggle to have a child with special needs. Me, Jaxson's worker and Jaxson went to Wal-mart just to pick up toilet paper. Jaxson proceeded to touch everything we passed. If we were stopped for any amount of time Jax would pull or swipe the closest items on to the floor. Then usually when I am bending down to pick up the mess he pinches me or pulls my hair. I want to bring Jaxson out in the community but even with the worker present it doesn't seem to make much of a difference. He has been on a new med for about a month to help with his behavior. However it doesn't seem like it is helping at all. We go to the Developmentalist on Wednesday to talk about his behavior and how the meds are working. Either the Dr. is going to up his current med or she spoke about putting him on an antipsychotic. It makes me nervous for him to go on a antipsychotic med but if it helps him and makes him less aggressive then it will be worth him going on them. So to get back to the day, after his worker left Jax took a nap. When he got up I gave him a pouch to eat. As usual he kept spitting and smearing it everywhere. So after a few tries I took the pouch away to give him a break. He signed to get out and I said " no buddy you have to finish eatting." Well he didn't like that at all. He started throwing himself back in the highchair and flinging forward and hitting his head on the tray of the highchair. I again said "buddy I am sorry" and then he started biting himself. When he starts biting I have to act quick before he really hurts himself. I would get ahold of one arm and he would bite the other. I then restrained both arms so that he couldn't harm himself anymore and would eventually calm down and he did. Once he was done with his tantrum he signed to have a bottle. His bottle is not only his main form of nutrition but also a comfort device for him. Before anyone says anything, I understand he is six and still has a bottle. A lot of people have given me a hard time about it. Personally, I don't have an issue with it. He is special needs and doesn't do well with a sippy cup or an open cup. I care more about him getting nutrition and staying healthy then I do about him being age appropriate. Which according to the feeding team eval he has skills of a 4-12 month old surrounding his eating. So really a bottle is appropriate for his skill level.
At 9 I have to give him a bolus feed. For any of you who don't know what this is, it is a large volume of food or in this case formula given in a short period of time. For now I am doing this until I can figure out a way for Jax to get his overnight feed and not have him pull it out. When he pulls out his feeding tube not only does it make a huge mess because the formula doesn't stop pumping if it is pulled out. But Jax doesn't get those precious calories he so desperately needs. Plus I never know when he pulls it out. If he pulls it out towards the end of his feed then he could be getting some calories but if he pulls it out at the beginning then he is hardly getting any calories. But either way since I am asleep when he is hooked up I don't know when it gets unhooked. I hope at some point I can get a night nurse who can take care of his night meds and his feed. That would definitely relieve a lot of my stress. It is so emotionally and mentally stressful having a child with such complex needs. Even when I get time to myself I am constantly worrying about Jaxson and what I am going to do in the future. I heard some where that being the mom of a special needs child is comparative to being at the stress level of a combat soldier.
Anyways enough about Jaxson, lets talk about my daughter Skylar. This past Thursday was her 13th birthday. 13! are you kidding me!? I can't believe I have a teenager. So quick funny story, Sky comes to me the night before her birthday and says "moooommm guess what tomorrow is?" I said " your birthday", she says " yes, my 13th birthday", I say "umm ok", shes like " and I get to SHAVE!" lol. I literally told her months and months ago that when she turns 13 she can shave her legs. Kids don't forget anything haha.
In another blog post I will go over more in depth what a day is like, a detailed post about Jaxsons morning and night routine and all the supplies I use for him. Okay well after this very long post I suppose I should go.
Bye for now
Kelly
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