Special Needs

Introducing myself (long)

Hi ladies. :) My name is Kara, and I've been a knottie/nestie since planning my wedding waaay back in 2002. I've been taking a break from the boards for awhile, but recent events have prompted me to come back and seek out this board in particular.

I have 3 beautiful boys, Jackson, 3.5, Bennett, 1.5, and Owen, 4 mos. Jackson has been in speech therapy since he was about 19m. It was originally due to delayed speech, which was brought up to speed fairly quickly once he started therapy, and he's continued with it due to articulation issues. He was originally receiving ST in our home through the state's early intervention program, and once he turned 3, he moved into the school district's program. At the end of March, his current ST mentioned to me that based purely on his speaking ability, he probably wouldn't qualify for ST anymore; his main problem now was with pragmatic speech, or social speech. He has difficulty holding eye contact, his ability to properly converse is not up to where it should be at his age level, etc. In addition, he's had a number of behavioral and social issues that we've been noticing for about a year now that have not really improved at all, despite trying various strategies. With those two pieces of info in mind, we agreed to go forward with further testing, specifically looking to see if he falls onto the autistic spectrum.

Jackson had his official evaluation in mid-April. Parts of it were very similar to the type of eval he went through before starting speech therapy (different play scenarios that were looking for different types of responses from him, both verbal and non-verbal), but, I'm sure largely due to his age, my involvement was virtually nil this time. I'm fine with that-- to me, it means that their impression of him would be based more on his behaviors and actions and not necessarily colored by my observations or thoughts. I did fill out some questionaires while he was working with the speech-language pathologist and the school psychologist; there was also a behavior specialist and an occupational therapist present, observing the testing. I was not expecting to get any kind of results that day, so I was taken aback when the school psychologist told me that, while they obviously needed to conference and score his results, that she was confident in telling me that he was definitely on the spectrum, albeit a high functioning end of it. They all thought he was a smart, sweet child, and their initial observations focused on how quickly he's made progress in the past (re: speech development) and how they feel confident that getting him into a structured program will really do wonders for him. He qualified to start in their ASD pre-k program, and they luckily had an immediate opening, so he started school the beginning of May. It's been a HUGE adjustment for him, as he's never been in any kind of preschool or daycare setting previously. He's starting to get settled in though (just in time for summer :P), and his teachers are extremely nice and seem to be a good fit for him.

Overall, I go back and forth between feeling optimistic and encouraged and feeling sad, angry, and frustrated. I also feel a hefty amount of guilt resting on my shoulders that we didn't catch this earlier. Rationally, I know that we've taken all the right steps, but I feel like, as his mom, I should have caught on more quickly. 

If you managed to read all of that, thanks! I've been lurking on the board for last few weeks, and you all seem like a very friendly, supportive and knowledgeable group. I'm looking forward to getting to know you all better!

DS1 9/7/05 DS2 10/20/07 DS3 1/20/09 DD 11/9/14

Re: Introducing myself (long)

  • Welcome!
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  • Hi! Glad you came back. My DS sounds like he has similarities to yours..... especially picking things up (like speech) quickly. The biggest issues revolving around pragmatics...

    To tell you the truth, my son was Dx'd at 2 ---- but we spent a LONG time trying to figure out if they were right, etc... because of how odd of a fit it was for him. We also battled with therapists who wrote him off as typical. It is JUST NOW (he'll be 3 in July) that the Dx seems more real and accurate. And, as you described, when he is evaluated now - there really isn't that need for me to hover and make sure they know every little thing - because he show's them what they need to see. Before, I always felt like I had to 'PROVE' it. 

    I wanted to share that, because you DID see something going on & you addressed it. I really think it depends on who it is that sees a young young child as to whether they will even entertain the idea of Autism. And especially in it's milder presentations. 

    We've had therapies for this year, but I KNOW the big work will come once he is in more demanding environments... Preschool... etc..

    You are NOT late. You probably saved yourself a year of utter confusion. Little kids are so quirky anyway, it's hard to lay a finger on just what seperates them from the spectrum....  when they are so young.

    You have done a great job. I think this board is a great place of support. 
    I'd love to chat on email if you care to.....  There's always going to be guilt - with ANY child - I hope you can get to the place where you tell yourself 'WELL DONE!' because it sounds like you've done what you needed to for him so far. 

    scott and briana at hotmail dot com 

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  • image -auntie-:

    Is there anyway you could get ESY for your son over the summer?

    Thankfully, yes. I'm not thrilled that it's only for 3 weeks in July, but it's better than nothing. I'm frustrated that he's finally getting used to the school routine and now will be out for over 3 weeks before starting back, but I'm trying to tweak our schedule at home to mimic his school schedule, at least as much as it's possible to do so with 2 younger (read: needy :)) brothers at home as well. I'm also trying to set up a home eval with our local CARD program to see what other opportunities and programs are available in our area.

    DS1 9/7/05 DS2 10/20/07 DS3 1/20/09 DD 11/9/14
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  • Welcome. :)
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    Nora Judith 7/2/06 Miles Chauncey 4/20/09 born with Trisomy 21 - Down syndrome
  • I agree, you have done everything right. You have him in therapy and that's really all you would have done even if you had, had a name for it sooner.

    good luck

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  • Welcome! We have several ladies on here that have children with asd, including me! My ds was diagnosed just weeks before his 3rd birthday, which was only about a month and a half ago. He is high on the spectrum as well. He was evaluated by both the school system (which actually said Aspergers) and our own developmental pediatrician (said ASD).

    I too felt guilty for not catching this sooner. He was in PT from 9 months-17 months old, but at that time, we had no idea how much that contributed to the big picture now. But, he was our first child, we didn't know what to look for and of course our former pediatrician (one of the reasons she is a "former"), didn't think anything was wrong.  He was also loving and happy child, which is one of the main reasons we put off getting him evaluated. But, I quickly learned that many kids on spectrum can be very loving.

    So, bottom line, try not to be too hard on yourself with that. He is still so young. I would be very careful about the preschool program though, especially since he is high functioning. From my research and talking to many people and professionals in autism world, including our current pediatrician who has a 22 yr old daughter with Aspergers, they need exposure to "typical" children as well. As children tend to model what they see. If there are typical children in the program, that is excellent. Where I live, there is only one special ed preschool program in the whole county, so only SN kids go there, and they all have very different issues. Fortunately, we live close to a big city, so we have other resources to reach out to get ds the help he needs.

    But, if you are seeing progress with this program, that is really what counts more than anything. I just wanted to through that out there, just in case. I am still learning about this ASD stuff as we speak.

    All of the ladies are excellent on here, don't be afraid to ask questions. I didn't read the responses, but I am hoping auntie has put her two cents in. She was extremely helpful to me when we entered the ASD world.

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