Forum: Children with Developmental Delays and Disorders
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So, I was posting a while back about my daughter, Chloe, having her follow up evaluation with the psychologist March 1 and I could not take her because I was working and her nana made the appointment so she took her. She called me afterward to talk about it and honestly it sounded so positive like it was so different from her first visit in December. The psychologist had said that Chloe had come a very long way and that she could tell Chloe was so smart and had a large word vocabulary. The thing was that Chloe did not seem to want to comply with her requests and she was really amazed and shocked when Chloe started complying after the psychologist took out some of those craisens (sp?) snacks. After those were taken out as reward she completed every request.
Chloe's nana told me that the psychologist was really optimistic about Chloe and told her that while she sees that Chloe does seem to have some autistic tendencies, she firmly believes that with intensive ABA therapy, Chloe will "grow out of" her symptoms by the time she is in kindergarten or first grade. This sounded so amazing to me. The challenge now is getting ABA as I cannot afford it out of pocket and I am forced to be on medicaid right now because my company does not currently offer insurance and I am pregnant so until I have this baby I can't switch insurance/get a job with insurance/buy a private plan at least for Chloe, etc.
Well, I just got the full report from Chloe's follow up evaluation and in black and white it looks SO MUCH WORSE than what was explained to me on the phone by not only Chloe's nana but also the psychologist. I need to call the psychologist tomorrow because I literally have been crying ever since. It looks so severe like everything! it was mentioned in there that she is borderline clinical ADHD and oppositional defiant disorder and not only meets all of the criteria for autism spectrum disorder but also for autistic disorder, or classic autism which I do NOT agree with at all! I did not for a second think classic autism, I thought for sure a more mild version like pdd-nos, which I was led to believe. I was told it was believed to be super mild and that with aba she should grow out of symptoms and the psychologist told me on the phone that she wants to re-test Chloe in one year after Chloe has received some treatment because she does believe that Chloe will test off of the spectrum. I mean, this does not look like it on paper! I am so upset, I am just crying and feeling so sorry and pitiful and it doesn't help that I am 27 weeks pregnant and now worried sick for my baby boy in my uterus, as if you have a child with ASD chances are the siblings will have it too. I am just so lost in life and have no idea how to get my daughter GOOD aba with medicaid. I just wanna crawl into a hole. I could write a novel about this report, but really I just feel like my mind is so scrambled. I love my daughter more than anything and I just can't believe on the phone the psychologist is telling me such a hopeful version and that I get this report in the mail and it looks like a stamp of dependence for my princess!
Can someone who has been where I am now please ease my mind? I am now thinking the worst and so worried my daughter will never in her life be independent and that makes me so beyond depressed and sorry.
Last edited by pamela.burke611; March 24th, 2013 at 12:24 PM.
I think I know a bit how you're feeling. My daughter's teachers tell me so many good things she's doing. She's completing tasks, she's talked to them, she using the potty, etc. Just doing so well! Then I get that IEP report every 6 weeks, and I almost feel like they should just stamp the words "mentally retarded" on it. It always looks so horrible!
She still pees in her diaper some, she refuses to use a spoon, she jibber jabbers all day with no communication, she refuses to cooperate when they want her to... On and on!
I figure I know my child, and technically she does do these things. It just looks so bad on paper. And I used to be a teacher, I know what they're doing when they speak to me. They're telling me something good about my child because that makes me happy. I used to just focus on the good parts with parents as well. They always ended up surprised when their angels ended up biting a child or something. "That just doesn't seem like him!" It really is, we just like to be positive.
They probably told you all of the positive things about it, and they were telling the truth. They put EVERYTHING on the paper, and it seems like they are talking about a different child. You know your baby, you can tell that she's doing well. Don't worry too much about it. Everything on there is the official stuff. If they tell you they believe she will more than likely test out of it, go with that.
I have a very verbal 4.5 year old boy with an official diagnosis of ASD. I don't know if he's considered "high functioning" or what; I don't really care. He's going to be odd in life. And we love him for it, partially despite and partially because of the traits that make him him. Just like any typical kid some of their personality will drive you nuts and some things will make you the proudest parent ever.
What I don't want for my son is a whole s**tload of therapy or to grow out of being autistic. I want him to be accepted as himself and I want him to get along as best as he can in this world we all share. He attends a special education program with other kids just like him - the school district pays for that after the age of 3 here.
Age 3.5 and age 4.5 are totally different beasts. You can expect to see major developmental change, regardless of a kiddo's status. I'm eager to see what age 5 brings, hehe.
*Hugs* all of this is difficult to process. We've been at it for 3 years (he was a teeny baby when he was diagnosed, just 19 months) so we've done our grieving and figuring out What the Hell This All Means Anyway. What we've found is that he reminds us a lot of ourselves.
(Hugs) Try not to worry so much.. Just remember your Chloe's voice and you need to be strong for her. Take he diagnosis and use it as a tool. Having Autistic Disorder will open so many doors for you to get her help. It's never given to you, you have to fight for it. That's one thing I learned since my son was diagnosed with Autistic Disorder January of last year at 25 months old.
Check with your state to see what Medicaid will pay for. In my state, Medicaid pays for therapy. I had to use a waiver to get my son on Medicaid because we are middle class. The past 9 months has been amazing for my son. Even though he has Autistic Disorder, I know he will succeed in life. He has made amazing progress so far and his almost at peer level in certain things. We had to work hard on this and it wasn't easy. It's like a puzzle and your trying to figure out how the pieces go.
Last edited by Adriana's Mommy; March 26th, 2013 at 09:19 PM.
HUGS....I just got Billy's diagnosis yesterday. I agree that you should take her diagnosis as a tool. With it, you qualify for more services. Also, remember that many doctor's offices are willing to work with you on a payment plan. Hang in there.