Finally!! Utah has an official bill that was introduced in the House today!!! This is fantastic!!! The Utah Autism Coalition has been working tirelessly to get votes and support. Let's help them out! If you live in Utah, you can go to the link below to find out what you can do to help!
This is such an exciting time! Become a part of it and help us pass this new piece of legislation!!
http://www.utahautismcoalition.org/2012/01/utah-autism-insurance-reform-bill-hb-69.html
Thursday, January 19, 2012
Wednesday, January 11, 2012
The Eval From You Know Where...
A lot of you have been very patient with finding out exactly what happened back on Oct. 14th, in relation to Macho's evaluation with the school district. I think I'm finally ready to talk about all the crap that happened during that incredible 4 1/2 hour ordeal. By the time I'm finished writing about it, though, I may need a piece of chocolate...
Before I arrived at the appointment, I made sure to not only have all the necessary paperwork with me, but I also faxed everything to their office beforehand. I faxed over the evaluation from the Pediatric Behavioral Specialist and the eval from the Child Psychologist. I faxed over papers from DDI, which stated Macho's issues with speech and problematic social behavior. When I arrived at the school district, I immediately informed them of the medications my son was taking for various problems. I made sure to inform them of the official diagnoses he's received and the unofficial diagnosis he has yet to receive. I was prepared people. I was as prepared as any parent advocating for their child could get. And yet...
The first thing the head of the eval team did was pull out my son's OLD evaluation - the one from last October - where they denied him for services the first time. Immediately she and two other colleagues began reviewing the old evaluation and stating, "Well, he did pretty well here, so I guess there's no need to perform another test in this area, right?" That's the first time my jaw dropped.
I immediately spoke up and said, "I don't understand why you're even looking at the old eval. It's old. It's a year later. Re-test him on everything!" Amazingly, even after I said that, the Speech Pathologist still came up to me - twice - and asked, "Are you sure you want his speech re-tested? I don't think it's necessary." I had to tell her a total of three times - YES, test my son!
There were brick walls put up everywhere I went. The speech pathologist didn't believe he had a speech problem, despite the fact that he still can't say certain letters and he doesn't do a lot of spontaneous speech. The Psychologist ran aptitude and intelligence tests, and because he scored on the low side of average, she dismissed my concerns as well. When I mentioned to her that Macho has separation anxiety, she said, "Well, I didn't see him react negatively when I took him to the room without you." I had to remind her that he is on MEDICATION! Not to mention, she was luring him over with new toys, so of course he's going to be interested and go without a fuss.
Next, there was the main coordinator. She stood by observing my son's behavior and reactions to pictures, playing with toys, books, etc. She noted that he could smile at her and make eye-contact, and that he was able to identify things. Now, please realize people - I'm not saying my son's case of PDD is severe. He is mild, but combined with his Anxiety and his ADHD and he can be very difficult to teach. I tried speaking with her - with all of them - telling them my struggles and how I've spent SO MUCH time and energy trying to teach him. I've spent countless hours researching how to help him with speech, with his inattention, with his sleep issues, with his nervousness and sometimes his constant fear of things. Then (here comes the compliment that's NOT a compliment), they told me, "Well, obviously you've been doing a great job! He's doing very well." AAAAHHH!! Wanna pull my hair out by this point!
Finally, when all the testing was over and the observations were done, we all sat around a little table with me on one side and the other 4 "experts" on the other side. They all, one by one, determined my son wasn't "bad enough" to be in the special ed program. People, I tried. I tried reasoning, I tried being irrational, I tried yelling, I tried being calm and understanding, I tried everything I could think of to make these people see that my son, though not a severely autistic child, still needs help! Despite all the paperwork I brought from my son's doctors, despite his several diagnoses, despite him being on 3 medications at only three years old for various reasons, THEY STILL SAID NO! They told me the most I could do was enroll him in a regular preschool class. When I told them I already tried that but that all the spots were full, they said, "Oh, well, I know we have one open, but ONLY ONE. Submit the paperwork today and we'll get him in that class." What a convenient "coincidence." I submitted the paperwork, grabbed my son and marched right out of that ()*&^% place!
I came home feeling exhausted, defeated, depressed, pissed off, but more than that - I came home feeling like I failed my son. I felt like my son was slipping through the cracks and as his mother, it was MY JOB to make sure that didn't happen, yet it was happening right before my eyes. I can't fully describe the roller coaster ride of emotions I went through that day. It was tough. I cried, I sobbed - it was like I was in mourning. What was I gonna do next? What could I do next? If I didn't do something right away, I was gonna lose my son. I'd have to watch him continue to regress and sink further and further into the "autism hole" and there would be nothing I could do to stop it.
So here's what I did: I kept working with him. I kept doing floortime therapy with him, I kept working on sounds and doing speech therapy with him. I kept doing attention techniques with him and I kept researching other things I could try. And guess what? I'm going to keep doing those things. I may not be a "professional," but I'm the mother of two special needs kids. Those are all the credentials I need!!! Besides, how could I ever give up with a son as adorable as him? ;)
Before I arrived at the appointment, I made sure to not only have all the necessary paperwork with me, but I also faxed everything to their office beforehand. I faxed over the evaluation from the Pediatric Behavioral Specialist and the eval from the Child Psychologist. I faxed over papers from DDI, which stated Macho's issues with speech and problematic social behavior. When I arrived at the school district, I immediately informed them of the medications my son was taking for various problems. I made sure to inform them of the official diagnoses he's received and the unofficial diagnosis he has yet to receive. I was prepared people. I was as prepared as any parent advocating for their child could get. And yet...
The first thing the head of the eval team did was pull out my son's OLD evaluation - the one from last October - where they denied him for services the first time. Immediately she and two other colleagues began reviewing the old evaluation and stating, "Well, he did pretty well here, so I guess there's no need to perform another test in this area, right?" That's the first time my jaw dropped.
I immediately spoke up and said, "I don't understand why you're even looking at the old eval. It's old. It's a year later. Re-test him on everything!" Amazingly, even after I said that, the Speech Pathologist still came up to me - twice - and asked, "Are you sure you want his speech re-tested? I don't think it's necessary." I had to tell her a total of three times - YES, test my son!
There were brick walls put up everywhere I went. The speech pathologist didn't believe he had a speech problem, despite the fact that he still can't say certain letters and he doesn't do a lot of spontaneous speech. The Psychologist ran aptitude and intelligence tests, and because he scored on the low side of average, she dismissed my concerns as well. When I mentioned to her that Macho has separation anxiety, she said, "Well, I didn't see him react negatively when I took him to the room without you." I had to remind her that he is on MEDICATION! Not to mention, she was luring him over with new toys, so of course he's going to be interested and go without a fuss.
Next, there was the main coordinator. She stood by observing my son's behavior and reactions to pictures, playing with toys, books, etc. She noted that he could smile at her and make eye-contact, and that he was able to identify things. Now, please realize people - I'm not saying my son's case of PDD is severe. He is mild, but combined with his Anxiety and his ADHD and he can be very difficult to teach. I tried speaking with her - with all of them - telling them my struggles and how I've spent SO MUCH time and energy trying to teach him. I've spent countless hours researching how to help him with speech, with his inattention, with his sleep issues, with his nervousness and sometimes his constant fear of things. Then (here comes the compliment that's NOT a compliment), they told me, "Well, obviously you've been doing a great job! He's doing very well." AAAAHHH!! Wanna pull my hair out by this point!
Finally, when all the testing was over and the observations were done, we all sat around a little table with me on one side and the other 4 "experts" on the other side. They all, one by one, determined my son wasn't "bad enough" to be in the special ed program. People, I tried. I tried reasoning, I tried being irrational, I tried yelling, I tried being calm and understanding, I tried everything I could think of to make these people see that my son, though not a severely autistic child, still needs help! Despite all the paperwork I brought from my son's doctors, despite his several diagnoses, despite him being on 3 medications at only three years old for various reasons, THEY STILL SAID NO! They told me the most I could do was enroll him in a regular preschool class. When I told them I already tried that but that all the spots were full, they said, "Oh, well, I know we have one open, but ONLY ONE. Submit the paperwork today and we'll get him in that class." What a convenient "coincidence." I submitted the paperwork, grabbed my son and marched right out of that ()*&^% place!
I came home feeling exhausted, defeated, depressed, pissed off, but more than that - I came home feeling like I failed my son. I felt like my son was slipping through the cracks and as his mother, it was MY JOB to make sure that didn't happen, yet it was happening right before my eyes. I can't fully describe the roller coaster ride of emotions I went through that day. It was tough. I cried, I sobbed - it was like I was in mourning. What was I gonna do next? What could I do next? If I didn't do something right away, I was gonna lose my son. I'd have to watch him continue to regress and sink further and further into the "autism hole" and there would be nothing I could do to stop it.
So here's what I did: I kept working with him. I kept doing floortime therapy with him, I kept working on sounds and doing speech therapy with him. I kept doing attention techniques with him and I kept researching other things I could try. And guess what? I'm going to keep doing those things. I may not be a "professional," but I'm the mother of two special needs kids. Those are all the credentials I need!!! Besides, how could I ever give up with a son as adorable as him? ;)
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