I wrote previously about the fun with MA not covering the services Bobby needs, like extra speech. Even with an autism diagnosis (I'll get into that in a second), they were extremely unhelpful and wanted to give me info about how to search for autism support groups (I was a librarian, thanks; I know how to search for things) instead of make real choices that could help him. So I tossed it. The IU can use it to bill for their services if they want, but we aren't dealing with it. I told the woman she could close the file and when she asked why, I resisted the urge to rant at her about her lack of useful advice and, instead, just said that none of there solutions were solutions to our situation and that I'd rather deal with the insurance through my husband's job. She didn't argue; I dont think she wanted to deal with me anymore than I had the patience for her. Stop suggesting "wrap around" aides at my house when I've already told you that I don't need help caring for my child; what he needs is theraputic help for his speech issues and assistance in processing commands and instructions. You wont send a therapist to our house and you want me to drive him an hour plus each way for half an hour of therapy, but you want to send me, basically, a babysitter to "help" when I'm home? No thanks. I'll pass. I have a great babysitter for the hour once a week I run at night (twice during the season) and that's about all I need from a babysitting standpoint... and she's 12! What we need are THERAPISTS!!! And dont get me started about how maybe he should talk to a shrink... If she brought that up one more time I thought I'd go off the handle. How about we just start with talking???? If we can get over that hurdle, then he can talk to whomever the hell he wants. Really.
So, that's done. Still on our regular insurance about covering speech services. Since his diagnosis wasn't autism before (I'll get to it- I promise) and listed as a developmental delay resulting from prematurity, I'm having a fun time getting that switched. Fun times. And I STILL dont have the psych eval from the IU; all I have is the segment listed in his IEP. Again, fun times.
So, in the fall, we consented to the psychological evaluation offered by the IU. This resulted in the diagnosis of PDD-NOS, which is an ASD or Autism Spectrum Disorder. It stands for Pervasive Developmental Delay-Not Otherwise Specified, which basically means there are some markers of Autism but not enough to conclusively say AUTISM. It's something that he could 'grow out of' or it could be an indicator of life long predilictions. At this age, no one can say. For the purposes of the IU, he is autistic. For us, he is Bobby.
His preschool, his teacher, and the principal have all been wonderful. They, like us, see this as just another facet of Bobby's personality and needs, and it hasnt scared them away from working with him like crazy. We are super blessed on that front. They are awesome women, and choosing our parish school for Bobby and Maya's preschool educational experiences was one of the best choices we've ever made.
I still struggle, as does Peter, with the validity of the diagnosis. There is no doubt that Bobby has needs and that some of his behaviors fall in line with his diagnosis. But there are so many that don't and that actually go against the diagnosis altogether. His primary presentation is speech related, with behavior secondary. As his speech is improving, so is the behavior. It's a slow process, but he's progressing nonetheless. He does take more time to process instructions; it could be a symptom of the speech issues, it could be a learning delay, it could be lots of things. I dont know that the diagnosis is wrong; it could very well be right. It doesn't "feel" right to me, but I just dont know. And frankly, it doesnt matter. Bobby is Bobby. I love him, diagnosis or not. I want to get him help, which is why I'm happy to accept the diagnosis at present because, in theory it should get him what he needs.
Highlights from his IEP:
- Based on Auditory Comprehension portions of the PLS-5 Robert achieved a standard score of 50 which indicated severely delayed receptive language skills when compared to same age peers (average standard scores range from 85-115 with a mean of 100). Based on Expressive Communication portions of the PLS-5 Robert achieved a standard score of 72.
- The Personal Social subtest of Battelle Developmental Inventory-2 was administered to Robert. The average standard score is a 100, and the standard deviation is 15. For the purposes of eligibility for special education, a score of 78 and below qualify a child to receive special education services. The score on the Personal Social subtest of the Battelle Developmental Inventory-2 was obtained by observation and parent interview. Robert achieved a standard
score of 64, suggesting skills in the significantly delayed range.
- The Checklist for Autism Spectrum Disorders is a comprehensive rating scale used to gather information pertaining to social interaction, mood, behavior, sensory functioning, attention, and safety skills in children ranging in age from 1-16. Results are reported in terms of raw scores ranging from 0-30. Raw scores above 15 indicate a strong likelihood of Autism. The ratings of Bobby on the Checklist for Autism Spectrum Disorders yielded a score of 18.
- The results of the GARS-2 are reported in terms of Standard Scores which combine to form an Autism Index Score. The above mentioned scores are categorized in the following manner:
- Standard Score: 7 or above / Autism Index of 85 or above = High probability of autism
- Standard Score: 4 to 6 / Autism Index of 70-84 = Possible presence of autism
- Standard Score: 1 to 3 / Autism Index of 69 or less = Low probability of autism
- Bobby's Autism Index score was 96. (39th percentile)
- Sterotypical Behaviors= Score 8 (25th percentile)
- Communication= Score 10 (50th percentile)
- Social Interaction= Score 8 (25th percentile)
He's been approved for a one-to-one aide, in addition to speech therapy (at home) and OT (and his BSC), in the classroom. The aide should have started today but, big suprise, didnt show up. I'm both angry as well as feeling like "typical" since it seems like delay after delay is par for the course. His therapists (BSC, OT, and SEIT) in the classroom seem to be helping him, especially the BSC. Since he started working with J, he's engaged in more imaginative play at home and has really started embodying some 3 year old behaviors. She's great with him and doesnt take any of his behavior issues when he's put off with something. She's just what he needs right now, which is great. Assuming he qualifies (which his teacher thinks he will), he'll also be able to get an aide for any summer schooling we opt for, in addition to his regular therapies. This is great. (More about summer school later).
In October, we began some dietary changes for Bobby, putting him on a banana free, dairy free, and gluten free diet. We did the diet for 2 months and noticed some positive changes in the beginning (such as requesting food and better communication). We began reintroducing dairy and so no negative consequence, so we reintroduced gluten, again without issue. Since mid-late December, Bobby has had these segments of his diet returned and his improved behaviors have not decreased. If anything, he is continuing on a positive stream. Perhaps he needed a detox, or perhaps a dietary change wasn't a big thing for him. We did notice that his eyes, which were previously always dilated, have returned to normal and we haven't seen them go back to dilation (except when appropriate). Bananas are still nixed; he was sick when we attempted to let him have them, but both times, he woke up around midnight and didn't want to go back to sleep... which is odd since both he and Maya are great sleepers. (They normally are up between 7am and 7:30am, nap from 1pm-3pm or as late as 4pm, and are in bed around 9pm.) We plan to try again, but haven't decided when; I hope they aren't problematic, since he still asks for them all the time.
For the summer... At Bobby's IEP meeting, we were chatting with his teacher and discussed how he would do over the summer break. We were curious because the 2 week winter break was coming up. His teacher said that she felt he'd do considerably better going into Pre-K if we found a summer preschool or camp (and that Maya would enjoy it too, although she feels Bobby will need it in order for a smooth transition to happen). The IU told us that, should he qualify for services during school breaks, then he would also be eligible for his aide and therapists if we enroll him in a summer program (this wouldnt be true if he was at home for the summer and not in an organized program). After winter break especially, his teacher is confident he'll qualify for help during breaks. We had 2 weeks off and last Thursday, when they returned, she said it was chaotic. He was clearly happy to be back, but it was manifesting as crazy energy that he couldnt reign in. Tuesday was better, but she said you could still see that he was trying to reacclimate to the classroom setting. So, we're trying to figure out what to do. We're going to interview at a school that is year round and, during the summer, offers openings for non-enrolled students. We could do the twins 3 mornings a week (to help transition them towards the 5 morning a week Pre-K program), from 9am-12pm. It's a half mile from the house, and they have experience with aides, etc, for special education students. So, we'll tour them and see how it goes. There's another preschool as well, but they only offer a one month summer program, so it's not perfect for what we're looking for, but it is excellent for special needs. So, we'll see. School lets out in mid-June, so we are thinking about July and August, then having them home until school starts in mid-September. I'll write about how our interviews go and what we decide (or if we decide to keep looking all together!)
So, a super long update on how things are going at school, but one that I've been meaning to write for a while!