GARS-2
Jayden was evaluated last week for his transition from EI into the school system. They completed a GARS-2 test on him (basically all while observing him during a HUGE behavior outburst over a simple transition) and he scored a 96. I see on the form that they gave me that anything 85 or higher is considered very likely to have autism. Of course, we already have been told that he does have autism, but that he is very high functioning b/c he only exhibits autistic behavior problems (no learning disabilities and his social issues aren't extreme). Because of this, we have so many "professionals" who disagree with his diagnosis. One in particular, his behavior therapist. She took one look at Jayden, who looked her in her eye and said Hi to her when she first entered our home, and immediately disagreed with his diagnosis. She still agreed to start ABA therapy with him b/c it was a Dr order and she had to comply, yet at every session she commented on how he is just "too smart" and he should be teaching the other kids for her. But the entire time, she ignored his behaviors. She never followed up with the paperwork needed by our ins co for him to be seen by the psychiatrist. She even went so far as to cancel SEVERAL of his sessions for no real reason and then to tell me that he just doesn't need the therapy. And whenever she heard word of his eval for the school system she would say "He probably isn't going to get accepted b/c he isn't really delayed." and "Please don't put him in a class with autistic kids b/c clearly he isn't autistic." I reported her and being that MS is just a God awful place to live if you have special needs, they simply said "She's all we have to work with." Well, with the comlaint I'm giving, perhaps you should start looking for someone better?!?! UGH. So anyway, it's obvious to me that her comments were giving my husband false hope. I completely understand that. Who wants their child to have any sort of disability?? So when someone is constantly telling you that there is nothing wrong, of course you will hope that this person is right. So when my husband heard the score from the GARS-2, it's as if he has to go through this acceptance period all over again. Now, what has us confused is what exactly does the number mean. Does 96 simply mean that he is very likely to have autism (which would make since b/c we obviously know that he does), or does 96 indicate the extreme of his autism? I didn't even think of this until my husband started picking my brain and asking "96 out of what?" It's so frustrating.
I just wish that we didn't have to go through this acceptance all over again and it's horrible b/c these Drs out here are just overlooking serious problems in kids. We went to a birthday party today and a girl that wors with my husband was there with her 5 yr old son, and she was sitting at the table with us when another lady commented on how calm Jayden was (she knows he is NON STOP!) and I did tell her that he has calmed down a bit since starting his anti seizure medications. The girl with the 5 yr old chimed in and said, "Don't worry about that, he's just being a boy. That's normal." I swear, I'm starting to hate that word, just b/c it's so over- and mis-used. She then went on to tell me that the Dr told her that her son's speech is delayed and that he is possibly autistic, so she found a new Dr and that Dr told her that her son is NORMAL and that boys speak later than girls. Well let me tell you, that sweet little 5 yr old boy sat at that table and didn't say a single word, smashed up some cake with his hands and made gestures with his fingers directly in front of his eyes. He also could not use a fork that his mom gave to him in order to eat the cake. Then when she took his cake away, he reached and grabbed another child's cake and continued smashing and doing the gestures. I would say that she needs to go back to her FIRST Dr. It's just so sad to me.
And Elias Parker, Born 3.5 weeks early 12/20/2011
FINALLY!!! After 7 years of infertility!
Re: GARS-2
The GARS-2 is one of the tools I use when my students are up for their 3-year reevaluations. It isn't meant to be used when they are observing him for the first time or for a short period of time. Did the evaluators know your son? I mean, have they worked with him before or over a period of time? If they hadn't AND he was having a tough behavior period while they were observing him, they likely did not get the most accurate results. But, maybe they did.?
?I'm sorry you're having such a hard time with his providers. It's rotten when everyone has a different opinion and decides to act upon it, even when it might set the child back. It's unprofessional and flat wrong.
Your LO is such a handsome little man. I wish you all the best in getting him everything he needs. ?
I havent even made it through your whole post yet. First Paragraph = My DS. It is SO frustrating. I was told that for so long... he won't qualify...he is obviously too smart... too good eye contact... too social... don't put him with AUTISTIC KIDS... he could teach these classes...etc... How many times did I want to scream at someone ----WHAT? Are you here to just make me feel like all this is my fault and I am imagining it??!
All the time I hear people complaining of 'over-diagnosis' and I go HUH??!! because I just don't see how that could ever happen where I live because of all the skeptics. My complaint is not of OVER diagnosis -- but of professionals who are under-trained, bad listeners, buying into stereotypes that the severe/profound end of the spectrum is all that exists, etc... We HAVE found a good team (I can only imagine what you are dealing with living where there are no alternate resources) and those who FINALLY do understand. But I totally know where you are coming from.
Let me tell you the honest truth. As he gets older...... the difference between his peers and himself will increase. There is something about that period between 2 and 3 years old for kids on the milder end of the spectrum (in my personal experience and what I've learned from multiple other parents) that takes you from concerned and skeptical -to- concerned and confident. As *Auntie* always says, there is a 1/3 deficit across the board. So, a 2 year old is still in that time frame where he isn't expected to do everything his peers are doing b/c 'everyone develops at a different rate'. THAT is where all these 'he's just a boy' comments are coming from. And for the record... I HATE that too. I would love for the fact that he has NEVER pooped in the potty even though he's been in underwear for 3 months consistently through the day to be 'because he's a boy' but it's not the truth and I don't want to hear it anymore.
And about the 'hope' they were/are giving your husband... Im so sorry. The score is probably just a 'score'. That test isn't going to tell you HOW severe he is... no test will. He just is who he is. Down deep... you already know. It's ok to be MILD on the spectrum. It sounds as if that's the case. It doesn't mean he still doesn't need help and extra support and time in a SpEd preschool to learn skills that will support him the rest of his life.
So, what did I do about it?
I found lists of areas of development. I wrote everything that he does well, and everything that is disordered about his development in ALL of those areas. It took me many hours to complete.... but it is the single reason that the Psychologist (who said what your BT above said), and the SpEd, and the OT, and the SLP on the IEP team finally listened to me.
I gave it to them at his first in-office evaluation (for IEP/preschool services). When I got the comments about him being too social, etc... I asked for more observation time. Every time I got comments like that, I knew they hadn't seen what they needed to see. I brought in our DT - who knows his buttons - he displayed some behaviors.... still with the 'not severe enough' comments. I requested more evaluation time. On the final day of observation... the SpEd teacher said something to the tune of, "Well, I think I saw exactly what I needed to see today". He GOT IT. He GOT that DS's interaction with his sister is scripted and learned and delayed and disordered. He GOT that he retreats and over/under reacts. He just GOT IT. To end my story... DS got his placement. And it's the right place for him. And there are challenges every day. And he is learning every day.
Im SO glad I made that list. Now I can go back and look at his progress and update it from time to time and I will have a record going forward!
That was a long response. Sorry. I just wanted you to know that I've been there. I'm still there. Even our private SLP didn't get it until I made a list for HER too. Sometimes these professionals don't know what to look for. I am HORRIBLE at showing them or telling them on the spot, so I sit down and make a list and their ears perk up and they finally GET IT.
It's sad to hear about that 5 year old boy, but at the same time... there are plenty of kids who aren't diagnosed until early Elem. School, so it is actually pretty common probably.
This whole conversation makes me ask? How is it 1/100 now? With all this tension in the system to give our kids help? To understand them? I just don't get it.
And Elias Parker, Born 3.5 weeks early 12/20/2011
FINALLY!!! After 7 years of infertility!
I'm sorry - we still struggle with the "you guys are just too paranoid, leave the kid be" and "I hope I'm not going to be such an over-bearing parent when I have kids...your kid is a boy, leave him alone and let him develop at his own pace" etc etc etc. Imaginary back-handed slap across the face from me followed every time.
It's tough when your boy's deficits are not obvious to others because the deficits seem so "mild" at that young age. I deal with it every day...and yes...our "professionals" and doctors were also disagreeing with each other on our son.
Sigh. But, we just need to keep on keeping on, like we have been for the sake of our kids.
To make a point though. EVERY one of our professionals worth their salt who have gotten to KNOW DS agrees... wholeheartedly. And they DO now listen.
It can get better!