Wednesday, October 14, 2015

Its been awhile.....

     Its been awhile since my last post, but life has still continued on here. Dylan started full day school the day after labor day. He surprisingly didn't have very much trouble transitioning to getting up at 6 am and coming back home at about 5 pm. I had stopped his ABA therapy because I truly didn't know how he would react to being in school a full day, since he has been fine I'm going to be starting it back up here soon.

     Dylan wont be with any of the same workers he had before. It really sucks that he cant continue his therapy with his pervious workers, but I am one heated mommy and I will explain why.

     Dylan started doing this tick type thing with his shoulder.  He would bring his shoulder up and rotate it kind of like you would if it were sore and at the same time rotate his head in the same direction. It was a new thing and everyone was unsure why he was doing it, it did seem odd. I talked to his everyday ABA worker about it right away. She then talked to her supervisor, who come to see Dylan doing the "tick" and right away diagnosed him with Tardive Dyskinesia herself, I'm not even sure if she's qualified to be diagnosing anything, but that was her opinion. TD is serious and she explained to me, even showing me videos of other people who have gotten this from taking Risperdal. Dylan was on Risperdal and so I called his doctor, who told me to stop the drug right away and to bring Dylan in right away which I did.

    So I took Dylan to the neurologist who is the prescribing doctor of Dylan's Risperdal. Where he was able to observe Dylan's "tick", also in the same day did an EEG test on him which he explain to me only confirmed his severe autism. He saw Dylan doing his "tick" for a good 20 minutes before we were able to get enough meds in him for him to be sleepy enough to wear the cap for the brain wave test. He assured me that what Dylan was doing was simply self stimulating, but to assure me even more we changed his meds to Abilify and were sent home to see if they would work. The reason I have Dylan on anti-psychotics at all is because his temperament changes super quick, and he lacks the ability to self soothe and calm himself once he is so upset. He does things like self harming by scratching, pitching, hitting and slapping. When on Risperdal he was like a totally different kid, much happier with life and more calm around other people. He would still have his occasional upset where he couldn't calm down, but when he would do it while on Risperdal it usually meant there was something more going on, like him getting sick or he had a pain.  When he wasn't on Risperdal it was extremely difficult for me to filter out what was going on with him all the time. Being he is non verbal, with little experience with PECS or sign language, he would pretty much throw a huge fit over anything and everything to get his point a crossed that he was in need or wanted something. there was lots of self harming involved and I would be heart broken over it every time.

   We gave Abilify a good shot, 2 weeks straight of constant fits and self harming. It was like Dylan reverted back to him pre-anti-psychotics only worse. He rubbed his face, neck and arms raw from self harming while having fits. Now I do try to stop him from self harming while in the fits I hold his hands away to stop him. There are occasions though when I can not, Like while driving in the car or when he does it while I'm sleeping. I was sick of watching him tear himself up and called his doctor and explain to him that Abilify was not working out and I wanted to try something else. He told me there are at this point in Dylan's young life there were only 2 meds possible he could take for this reason that being Risperdal and Abilify. He said Dylan should have already been some what adjusted to abilify and that if he wasn't yet the medication was not working for him. He then told me that he wanted to put Dylan back on Risperdal and assured me again that he had no reason to think Risperdal was causing Dylan's tick in the first place and he only changed the meds bc he wanted to ease my  mind about the whole situation. We decided as a "team" (doctor and mother) because really that's what you are when it comes to taking care of your child and his patient (neither wanting to cause harm to Dylan), that the best thing for Dylan would be to return to taking Risperdal only this time he instead of liquid gave him mouth melts.

  Well, to shorten my story just a tad, the supervisor I had mentioned before turned me into CPS. She told them that I in fact put Dylan back on Risperdal against doctors orders. When on her last visit to see Dylan I specifically told her that Dylan's doctor told me he didn't have TD and that he was just self stimming and as a "team" me and his doctor decided it was best for him to go back on it. I believe just out of spite she turned me in with false allegations. She has always been super (overly)opinionated while overseeing Dylan's ABA therapy sessions, but I put up with her because Dylan loves his everyday worker and to have her, We had to have her supervisor. Now I refuse to have her apart of anything that has to do with Dylan. As I told his case manager when she come to see me about a week ago, there should be no reason for he to even have to speak my child's name. I don't even want the "new" team Dylan received for his ABA to be able to consult with her about anything pertaining my son. For her to mentioned to anyone let alone CPS that I would intentionally put my son in harms way makes me sick to my stomach and I will not stand for it. I have never and I will never do anything that could harm Dylan. Anyone who knows me knows that my world is Dylan, I may have 3 children in total and I don't like to say I have a favorite, but Dylan needs me more and I would do anything for him at anytime, He is my only son! I believe sincerely that God puts the special children with special mothers because he knows they can handle it. I got this!

I'll update more later, I'm hoping to get a new camera soon as well so keep watch for the pictures. I'm sure I'll be so excited to have one again I wont be able to contain just one shot, I'll be sharing it all :)
till next time,
Jessie pearl

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