ABA therapy: vent
So, this therapy is VERY important for Jayden for several reasons, but mainly so that he can at least be prepared to transition to the school system. At this point, he cannot sit still for activities and does not like to do anything as a group (even one on one) and he does not like to follow directions. He's okay as long as the activity is NOT structured and I know that won't fly in school.
So there is only ONE clinic in this town that does the therapy and Tricare has agreed to pay them for Jayden's services (yay for Tricare for finally stepping up to the plate!). My only problem is the behavior analyst and her opinion on what is and what isn't autism. She, of course, rec'd the referral from Jayden's dev. pedi explaining her findings, diagnosis of PDD-NOS, and what she feels he needs as far as therapy goes. The lady actually told me that she disagrees with the Dr and that she doesn't believe that Jayden has autism b/c he can talk. Yep. That's what she said!! Ridiculous. She keeps making comments about how she doesn't think he needs the therapy, but since he was referred she will go on and add him to her schedule and maybe he can teach her a thing or two. So obviously, she hasn't witnessed Jayden at his worse. And this is b/c everytime she sees him, she gives him control. The first time, the eval, she sat on the couch and he played on the floor. Of course he was fine b/c she didn't intruyde in his space. His first session with her was last week and she sat on the floor with him while he played with the toys (and never once made eye contact with her). She tried to get him to identify some objects on flashcards and he ignored her and she put the flashcards away. Of course he's going to do great with that b.c he has control, but in school when it's time to switch activities, he has to switch and that's when a problem will arise. When we were leaving, he had a BIG fit (transitioning) and I asked him if he was ready to clean up and he threw a container across the room and fell out. The lady told me that I shouldn't have asked him, I should have told him, but I did let her know that it honestly doesn't matter at this point if I ask him or tell him, he doesn't like to transition and there's always this huge fit. She asked me what do we do when he has these fits in public and I told her that we leave wherever we are or we just don't take him places. She says, Well it sounds like you handle it right by doing that. But I asked her "How would you feel if you had to leave a place EVERY.SINGLE.TIME. or if you just didn't go places b/c you knew your child would be out of control." She just nodded her head. I just don't think she understands, but I know eventually Jayden will show her what he is capable of. I sort of feel like her opinion on what is and what isn't autism is hindering her desire to work with him. IDK. I know it's still early in the process, but if she continues to make these comments about him not needing this therapy, I may end up telling her something very nasty!
And Elias Parker, Born 3.5 weeks early 12/20/2011
FINALLY!!! After 7 years of infertility!
Re: ABA therapy: vent
((Hugs)) I've read your blog and know how hard you've had to fight to get Jayden services. Keep on fighting! You are a strong woman and great mother!
Ahhhhhh I feel your frustration! I really really do. I've got so many thoughts in my head, I'll probably have to finish this up at another time.
So, first, what 'school' are you referring to? Are you talking Preschool, Kindergarten, etc..?? I'm not asking that b/c I don't understand the concern [i fully do] just trying to get a perspective of time frame. My DS is about 6 months younger than yours.
A personal experience that kinda matches up is our Speech Therapy. We have had the same SLP since day 1. I always felt a little tension, though she was never as vocal about her disagreement of his diagnosis. He had SOME issues that were stereotypical, but mostly he follows NO stereotypical pattern of speech needs. He struggles with Pragmatics, not semantics or fluency or vocabulary.
So, anyway, once she made enough comments to really think that she doesn't understand Autism past the stereotypes, I started working on my list of things that children 6 months to 1 year younger than him were doing spontaneously that he NEVER did. And once I handed her that list, she got on board.
Once we worked on that stuff for a while, she finally admitted that she didn't get it or him for a long time and that she was finally really getting the hang of it. (that is such a loose translation of what happened, it's not funny, anyway...).
MORAL of that story is: how much time can you afford to spend educating her? I hate to say it..... I really do. But, if you have to educate her ---- is she worth the $$ you're going to have to put in? and the time?
If she really is the only option.... don't hesitate to try it out. I wonder what kind of expense your insurance is going to leave over for YOU to pay to try this out. We've never done ABA, but we did do TEACCH. I wonder if there is a TEACCH program anywhere near you. It is all about structure & Transitions. I would be happy to tell you more about it over email if you're interested. It MIGHT be helpful & you can do it yourself. We were put in a 12 week program so we could learn the system, but other than LOVING the guy who came out to work with DS, it should never really take that long to figure out.
I am also just hating for you that they took away his services. Having a balanced team was so wonderful (when we finally got them all together) Any chance you'll get speech or OT or anything back?
Ok, I am officially rambling and needing to go to bed. I'll recheck on this post and see if I've sparked any questions or feel free to email me.
scottandbriana at hotmail dot com
To piggyback on what Auntie said about making a list of where you want him to be in 3-5 years......let me throw this at you:
We've had an OT and and SLP who just didn't get it. He presents very Atypical for autism, but if you go down that list in the DSM, yes yes yes yes... he fits in way more categories than necessary!! When I presented them with a list of what I felt he needed to improve and be able to do in 3-5 years (beleive me I did this first) they just told me every reason they felt that there was no reason he couldn't achieve that with minimal intervention, if any at all when he hit his 'developmental growth spurt'.
So, I stopped that train and jumped on another. I don't have a LOT of opportunity to be around other kids, but any friends with kids 6 months to a year behind my DS - I would ask them to make short lists for me of things they say, how they ask questions, how does he get what he needs?, what phrases do they use... how do they go up and down stairs, what's the frequency of this... etc...
And VOILA! I had a HUGE list of things that should PROVE to them that this is not typical development. A couple months behind typical is one thing, but when you see a 18 mo old doing things that he's STILL not doing at 2yrs 8 months - you can REALLY show them pure evidence that there is a concrete developmental gap that will only improve with therapy.
It wasn't until I supplied the SLP (the OT remained of her own opinion and we said goodbye to her) with this list that she realized what I was talking about when I said over and over how many things he is just NOT doing that other kids are. I couldn't really provide her with great answers of 'what' until I took a good look at the kids around me. This SLP worked hard for him, but around the 2yr8mo range she said she wanted to stick around for him so it wouldn't be so hard to get speech once he turned 3, but she was ready to discharge otherwise. After my list, she realized his needs & has taken us on privately after 3yrs and plans to work with him for the LONG HAUL. Ready to discharge to long-term commitment is a BIG CHANGE!!
Also, I meant to say my DS is 6 months OLDER than yours last night, and I apologize for my rambling in the pp, I should have known to just answer it today when I was more clear minded.
And - I thought about it again once Auntie mentioned that you could pave the way for others by dealing with this therapist and helping to mold her into a better therapist and a more understanding one. It is true.
I've done this. Just make sure that in the process you see progression in her. If she is stone cold and not moving and you really don't feel that her sympathy towards your sons needs is changing - then you might need to move away and find another avenue. But I certainly think it's worth a try.
Like I said, my SLP did grow and has thanked me for that. The OT did not, and continually told me thinks like, 'Well, dressing is really a kindergarten skill, so i wouldn't worry about it until then'. And we said goodbye.
I wish you much much blessing. You are a fighter! I can tell. Just don't wear yourself out
I've done that too. There were (are) somedays where I just don't think about anything else. I try really hard to get things down on a list and just walk away. But it's not always easy.
I pray the move will help services too!!
And if he aces the Vineland.... and the psychologist says to you 'he's not severe enough' just push some buttons so she can observe the behaviors. [sorry, reliving a flashback]
My DS does as well as you said when placed one-on-one with an adult [until said adult challenges him] & while I can't put my finger on whether I ever really got that score back, I do know that the psych who gave it to him was the same one who exclaimed he would never qualify for their services b/c he wasn't severe enough. One 17 page IEP later, he qualified under EVERY facet & has 6 pages of goals.
Wow, thanks so much for the replies. You ladies are really helping me to continue this fight for Jayden, even when I feel like I just cannot take it anymore. Seriously, thank you!
About the "school"...it's an elementary school that has a pre k probram for 3's and 4's and they do follow IEPs. I would decide how often I want him to go to school (twice a week, 5 days a week) and how long he stays. From my understanding, if he doesn't transition into the school system by the time he turns 3, then we will be responsible for paying for any therapy he still needs. He's back in speech therapy as of last week. We are still waiting to get picked up by an OT but I am happy to say that our new service coordinator is working very hard to make that happen asap.
Wednesday is Jayden's second ABA session. My DH is coming with me to voice his concerns as well b/c I've told him that I think this lady is making light of our situation. My mom suggested we take videos of Jayden's behaviors and I recently took a video of him having a horrible fit over a cup in his carseat cupholder. It was awful and it tears me up to watch that video, but if it's necessary, then I will do it for him. Thank you so much for the idea of the list of what I want to see him doing in the future. I sort of brought that up to her (in front of a monitor from the board of education) when she was explaining the goals she would be working on with Jayden. I told her that making requests was a HUGE concern of mine b/c at this point he doesn't request things. Instead, we have to offer things and keep offering until he hears something that he wants. At his age, he should be able to tell me what it is he wants, even if it's just using a sign. So I think a list would be beneficial for him with this therapist. My plan is to pay close attention to the progress he's making. I will take my own notes and compare them with hers on his progress reports and if I feel that there is a huge difference in what I'm seeing and what she is seeing I will bring it up.
I believe someone asked about how much our ins would leave for us to pay for this service? It's costing us $35 a month as a co pay and they will pay up to $2500 for ABA.
And Elias Parker, Born 3.5 weeks early 12/20/2011
FINALLY!!! After 7 years of infertility!