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The Light at the End of the Tunnel (part 3 of our journey with Asperger’s)

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So….where was I? Oh right, we were wrapping up all our screenings and evaluations (still not sure what the difference is between those, but whatever).

At this point, I’d gone part time at my job. To be honest, it sucked. I loved my job. I loved my team, the challenges, the intellectual curiosity, the energy…everything. The decision to go part-time was a joint decision between my boss and myself. Once he settled into his job (he was hired a few months after me) we began to realize there was a ton of overlap in our responsibilities. Plus, there was the whole Z thing, which completely distracted me from performing my best at my job and took the passion out of me. Even when I was there, I wasn’t really there. So, instead of waiting for them to let me go, I proactively went to him and we decided on a transition plan. I went part-time for 6 weeks to finish up some projects and then I was done. Again, it wasn’t ideal….none of this was for me…but it was the right thing to do.

Soon after I left, we went to Florida for a little vacation. It was a blast. The kids had a wonderful time playing on the beach and in the sun. It was SO great to be on a relaxing vacation. J and I kept commenting on how much we all needed it. Z even seemed to be thriving even though it was a new environment, lots of people, etc. I guess running all day on the beach can wear even the most sensory seeking kiddo.

When we came home, Z had his final screening (ADOS). The psychologist called me later that afternoon to tell me the results. The ADOS scores on two fronts: communication (pragmatic) and reciprocal social interaction. The cutoff for communication is 5, Z scored 5. The cutoff for reciprocal social interaction is 6, Z scored 8. In order to receive a diagnosis of Autism Spectrum Disorder, the aggregate score needs to be above a score of 12. Z had an aggregate score of 13.

Next step was to have an IEP meting with the school district. I won’t bore you with ALL the details of that 4+ hr meeting. We discussed his strengths. He’s extremely intelligent. He scored above average or advanced on all cognitive rating scales. His motor skills were great. His communication was very good…except for the pragmatic kind (the give and take in conversations). We discussed his challenges. He’s not truly social. He wants to be but doesn’t know how to be. And, if he does play with another kid, he has to control everything or he loses it or walks away. He has intermittent eye contact. He takes inappropriate risks. He has his own agenda and has a tough time doing things if he doesn’t want to. He has difficulty following instructions….unless it’s something he wants to do. He has difficulty with transitions….unless it’s something he wants to do.

The bottom line was Z exhibited “behaviors consistent with the diagnosis of high functioning autism” and qualified for a half day Developmental Delay IEP with related services of 30 minutes of speech therapy once a month. Right….what the heck does that mean? It meant that the county saw that there was enough of a concern in his behavior that they wanted to put him in a special ed class with other kids that had some sort of developmental delay. Chances were, all the kids would be like Z…high functioning but not quite ready for mainstream.

And that’s when the real work began. Now that we had the diagnosis, we wanted to know what else was out there. What other private services/schools/options did we have? Was his school assignment and teacher assignment the right one? Did we want to accept what the public school system had offered us? We thought so….but…we wanted to research all our options. Did we want him to be in a class with all kids with developmental delays? Wouldn’t it challenge him more and help him more if there were some kids that were typically developing?

I started doing research on area preschools that had a lean towards kids with developmental delays. First stop was a 45-minute drive from our house, but who cared, right? If this was the right place for Z, I’d do it. Let me say that for the kids this school caters to, it’s a fabulous facility. It was also for much lower functioning kids. I called J practically in tears and said, “How can they say Z’s got the same label as these kids?!” As I mentioned before, it’s a good thing Z’s so complex….he’s not slam dunk autistic. He’s extremely high functioning. And extremely intelligent. Both of which are strengths that can easily be built upon in the right setting.

My next stop was also 45 minutes away but a much different school. And, I fell in love. It was a full-day inclusion school. The staff was amazing. The kids looked like they were having a great time. Exactly what I wanted. And they even had a classroom for younger kids so maybe S & Z could go to school together?

Unfortunately, I wasn’t the only one who loved the school; the waitlist was a mile long.

After that, there were countless emails/phone calls/internet searches learning about other school options in the area. None of them were *quite* right. Then, Z’s speech therapist informed me that there was a preschool that was 10 minutes away from us that was founded on an inclusion basis. It was perfect! Z could go there 5 days a week, S could go 2 days (giving me a MUCH needed break) and we’d still have time for additional therapy in the afternoons.

All set, right?!?

Until…..

Stay tuned for our next installment from guest blogger Rebecca. She lives in Denver where she spends her days wrangling two kids, a dog and a husband, working part time and enjoying Colorado as much as possible. She even manages to eek out some time to write in her blog, MBA Mommy where she talks about, you guessed it, wrangling 2 kids, a dog and a husband, working part-time and enjoying Colorado as much as possible! Photo

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Comments
  • comment avatar Amber Johnson January 17, 2012

    Until….. thanks for sharing your story! It’s so interesting to hear the process of working through the diagnosis. You’re helping a lot of parents by sharing your story.

  • comment avatar Lana January 17, 2012

    When I first heard them words, “Your son has a Aspergers syndrome, a form of autism”, I felt like my world had crumbled on top of me, I felt so alone.

    I read everything I could read, I tried desperately to learn all there was to know! Once maybe twice, I convinced myself they had got it wrong!

    Then It hit me! He was no different from the child he was a month ago (pre diagnosis), he was the same little boy, who still loved trains and buses.

    • comment avatar Rebecca January 22, 2012

      Amen, Lana! Label or no, they’re same amazing kiddo. The difference with a label is that now you can wrap your head around it and figure out ways to further help him and explain him to others who don’t get it. Thanks for commenting!!

  • comment avatar Martha Fish January 17, 2012

    Until what? Until whaaat? I don’t know this first hand but did communicate with therapist years ago for a student. I’m always interested to learn more about the process as I get ready for the field of education. Thanks for sharing your story! You’re helping future educators too.

    • comment avatar Rebecca January 22, 2012

      Thank for commenting, Martha. I’m so glad this is helpful. 🙂

  • comment avatar Karen January 17, 2012

    Thank you for sharing your story!

    • comment avatar Rebecca January 22, 2012

      Thanks for reading, Karen!!

  • comment avatar MaryAnn2 January 17, 2012

    Wow, this is great. Thanks rebecca! I have been reading an interesting series of what it’s like to have Asperger’s as an adult. This lady writes about her challenges of Asperger’s in the office. http://blog.penelopetrunk.com/2009/09/30/asperger-syndrome-in-the-office-how-i-deal-with-sensory-integration-dysfunction/

    • comment avatar Rebecca January 22, 2012

      Thanks for Penelope’s blog, MaryAnn! I hadn’t read her before…she’s amazing!

  • Pingback:Mama, I’m Coming Home (the conclusion to our journey with Asperger’s Syndrome) | Mile High Mamas

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