Spectrum Moms? Educators? Help?

fuzzbucketfuzzbucket Registered Users Posts: 996 Curl Connoisseur
Raising Harry has been like putting together a puzzle. A really challenging, frustrating and amazing puzzle. I think we may be looking at a diagnosis of Asperger's Syndrome as well as ADHD, but I don't know what the next step is. He's in EI and getting ready to transition to preschool. His speech has caught up with his age, but his other traits (listening, attentiveness, impulsive behavior) have not. Socially, he loves other kids and is very charming, but very oblivious in certain ways. His SLP (also his service coordinator) is worried that the public school may not think he qualifies for special ed because he can speak so well.

What is the next step in getting an actual diagnosis? Do we go through EI or his pediatrician? Or both? I don't think they diagnose ADHD until later, but it can't hurt to have an IEP in place, right? I have so many questions and I'm not meeting with his service coordinator until Thursday. Can anyone weigh in from either the parent or educator side? Thanks in advance.
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Comments

  • cosmicflycosmicfly Registered Users Posts: 1,814
    Have you seen a developmental pediatrician? Many of my spectrum kids have been diagnosed by a developmental pediatrician. It can be a helpful report to go to a meeting with.

    The school district is concerned with whether Harry's developmental issues affect his learning. Your service providers can illustrate that he needs support to learn because of his issues (they'd need to be specific). Low standardized test scores are helpful, but they are not mandatory. Some of the things I look for when a kid doesn't qualify on paper (by test scores) are gaps in earlier (more fundamental, if you will) skills, poor pragmatic skills, poor application of skills (i.e. the child can demonstrate a skill in isolation on a test, but cannot typically utilize the knowledge in real situations). Any of these can be indicators that a test score is not a good estimate of a child's skills and should be interpreted with caution.

    I have to put Maya to bed (again!), but I will check back to see of you have any questions.
  • cymprenicympreni Registered Users Posts: 9,609 Curl Neophyte
    EI gave us a referral to a children's hospital for dx. The school did their own testing as well. You can get a referral from your ped as well.

    People knowledgeable in the spectrum look more at more then just speech, lack of social. They look at the history and whether it's appropriate. My son looks pretty good on paper. He will talk your ear off and is everyone's best friend, but there's no doubt he has autism. They way he talks, the way he interacts with others, it's just not normal. it wasn't so clear when he was your son's age. A lot of people questioned the dx, but as he got older it became very obvious.
  • fuzzbucketfuzzbucket Registered Users Posts: 996 Curl Connoisseur
    Thanks. I didn't mean to disappear. We are seeing an ENT tomorrow to look at his hearing loss issue. Right after that appointment, we see his SLP and I'm going to raise this question and hopefully move toward getting a referral to Children's. I know getting a dx can take time and I'm not 100% sure on whether this is AS. He has some traits, but not others. I'm pretty sure on the ADHD. I know he's very smart (and not just b/c I'm his mom) and I know he is going to need help focusing. I wish we could have been on this with more time before EI runs out in July. His preschool eval is in May and I don't know if that is enough time to get some paperwork started.

    (Warning, this next part is a little ranty...)

    The thing that gets me is that my WHOLE family has thought this for a long time (we've got several educators and an OT) but nobody verbalized it until I spoke up with my own suspicions. I know they wanted to be sensitive, but Geez! As they watched us struggle with all of this, a little nudge in the right direction would have been appreciated. I'm certainly not in denial about any of this. I just want to help H be the best he can be. I know his service providers can't say anything unless we ask them, but they are the ones with the practical knowledge and experience. As first time parents, we've been flying blind. I spend TONS of time researching ways to help Harry and learning things from scratch only to hear these things from his therapists AFTER I mention doing them. I'm glad I'm on the right track, but I feel like I shouldn't have to be reinventing the wheel. Part of my yearning to get a dx is to just get some answers already. Seriously!

    End rant. Sorry. It's been a tough run.
    Hair type: 3A/B
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  • cymprenicympreni Registered Users Posts: 9,609 Curl Neophyte
    I hear ya on the rant. I learned my family had been gossiping about it for a while and never mentioned it to me. I had very little experience with little kids. I really didn't think much of his differences. Kade is not even close to those ASD cases you see on tv. It wasn't until I started reading about how they really are did I see it.

    And a warning. Just because you have a dx, doesn't mean you'll have answers. When Kade finally got his all I got was "your son has autism, here's a pamphlet have a nice day!" I had to do all the research myself. I had to fight and beg for services. Also, just because you are almost positive of the dx, it doesn't make it any easier to hear at least for me. I fought for over a year to get it, and I still cried for months. If that happens to you to, just remember he'll still be the same little boy as he was before and no matter what, his future has not yet been written.

    What really helped me the most was going to a support group. I doubt they'd care if you don't have the dx yet. The group was focused on educating. They talk about services in the area, what treatments are good, etc. You can ask about how to deal with various issues from people who have been there. It's very informative. It was shocking how much professionals didn't tell me.

    there are also advocacy groups that deal with IEPs. I would look into one of those as well.
  • medussamedussa Registered Users Posts: 12,993
    My son was diagnosed with Asperger's Syndrome when he was 4 (he will be 11 in July). He was diagnosed by a Pediatric Neurologist. My hands are never free long enough to type out a thorough response. I sent you my number awhile back, so please don't hesitate to call me to vent or ask questions.
  • fuzzbucketfuzzbucket Registered Users Posts: 996 Curl Connoisseur
    Had our IEP meeting today and it went really well. After listening to me and his SLP (and service coordinator) give a whole picture of Harry, the panel made a complete 180 and deemed him qualified for special needs services. He will be attending an integrated preschool and will have individual services for speech and OT as well as individual instruction in the class. Academically, there were no concerns, but we are worried that, due to his attending and social difficulties, he'll have trouble following the curriculum. I can write more detail later, but we are so happy he's going to get some help!
    Hair type: 3A/B
    I lurk, therefore, I am.
    My Blog
  • cymprenicympreni Registered Users Posts: 9,609 Curl Neophyte
    :cheers:

    Glad it all worked out! IME schools usually listen to the recommendations of therapists and teachers. It can really slow a class down if a kids has delays that aren't met. A lot of work in the younger years can really make a difference later on.
  • mad scientistmad scientist Registered Users Posts: 3,530 Curl Neophyte
    That's great news, Fuzzbucket. Its always nice to feel like you are moving forward. Hopefully this new school and the service that are now available to you will be of help.


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