Our Story

Every family with autism has a “story” — not really about them, but about how they came to know about autism, and the battles they have fought, sometimes with insurance companies, sometimes with money, and always with their own emotions.  This is ours.

Something isn’t right

When The Boy was 6 months old, we joined a “baby group” sponsored by our hospital — a group of families who had had their first child in the same week at our hospital.  The ex and I were the furthest flung (geographically) of the group, and always had to drive a long way to the meetings, but I felt it was important to have this support network, as our own parents were out of state (as the years wore on the ex would often “boycott” these group meetings because he felt threatened by the perceived wealth of the other families).  Through this group (and watching the babies interact with each other), I noticed that The Boy was not talking as much as the others, right around his second birthday.  We scheduled an evaluation, not with our hospital, but upon the advice of others, with our intermediate school district.  They decreed that The Boy was Cognitively Impaired  because he wasn’t playing with the toys “correctly” and scheduled him for a “class” with other toddlers his age.  I could not attend, as I was teaching during the school day, but the ex could because he worked irregularly.  It was frustrating, and it wasn’t doing any good.  Besides all of that, I knew the “CI” label was incorrect.  This toddler had already figured out how to scale our kitchen cabinets and the refrigerator to get to the cookies.  Something else was going on.

A second opinion

The Boy: Auditory Therapy for OT

We went back to the hospital, to their medical center that housed speech & language pathology, because that’s where I felt the issues really were.  They diagnosed The Boy with Reflective and Expressive Speech Disorder, and we began a long game with labels.  He received speech therapy two nights a week for about six months, until one of our speech therapists suggested we also get an occupational therapy evaluation.  We did, and they found he had some issues, but declined to diagnose those due to the insurance game.  Undiagnosed Neurological something-or-other.  We continued both occupational and speech therapy, and they did a great job scheduling our appointments back to back, so we didn’t have to make the 40 minute drive (one way) more than twice a week.  I was not enamored of the therapists themselves, though.  I found most of them to be cold, and the OT was so inept, The Boy ended up with a large gash on his arm after a session, caused by a ladder used in a session.  But we didn’t have too many options, at the time, and progress was being made.

Preschool

This medical center also had a speech-based preschool, in which I really wanted The Boy to participate.  It was sponsored by the Children’s Miracle Network, which reduced the cost.  When he turned three and half, we applied, and he was accepted.  He continued to have his own therapies, but was “pulled out” of the preschool day for them.  Transportation was a huge issue, as it was a half day program, and we were both working, so we had to hire someone to get him there, bring him home, and provide daycare for him until I returned home from work.  This was a nightmare.  Finding people with time in their day who were reliable enough not to sleep in, or demand more money was one of the worst headaches I’ve ever had in my life.  Also during this time, my employers made a drastic change to our insurance, and therapies were no longer covered.  We were barely making it.

We continued with the program for two years.  At least, we attempted to.  An aide from the program told the ex that The Boy had autism, and the ex flipped out (“He does NOT have autism!”).  The Boy was jumping off of the furniture, and we would get bad reports all the time.  In December, they called a meeting with me, and no lie, had about 10 people on the opposite side of the little preschool table from me.  I sat in the little tiny chair and listened to them explain why The Boy was no longer welcome in their program.  “You need to enroll him in preschool in his local district,” they said.  I replied, “So you’re kicking him out.”  “No, he needs to be in his home district.”  Halfway through the school year, he all of a sudden needed to be in his home district.

Diagnosis

That December, we decided to schedule an evaluation with a child psychologist to see what we were really dealing with here.  Since we were going to be entering the local school district, I wanted a correct label, and his label would remain CI from the intermediate school district label long ago unless we did something about it.  The evaluation was not covered by insurance, and cost almost $700, right before The Boy’s birthday, and Christmas, but we did it.  And we heard what I had been somewhat prepared for, but not what the ex wanted to hear.  Autism.  Here’s a pamphlet, call the Autism Society of America.  Have a Nice Day.  I remember sitting in a KMart parking lot later that day, on the phone with a friend, and losing it.  Sobbing.  What are we going to do now??

Preschool somewhere else

We enrolled him in our home district, and he was placed in a preschool for kids with developmental delays.  He started in January.  We didn’t hear much from his teacher, although he would get a daily report consisting of three faces, one smiley, one frowny, and one in the middle, one of which was circled to indicate what kind of day he had.  They were mostly smileys.  We attended parent-teacher conferences in March, where she talked about his progress.  I asked about Kindergarten for the next year.  The teacher looked at me in shock, explaining, “Oh, he won’t be ready for Kindergarten next year!”  “What?” “We’re going to continue with him in the DD Preschool, and possibly place him in the CI room when he’s ready.  There’s a lot of sitting in Kindergarten.”  The ex and I were stunned.  The Boy was incredibly bright, but was going to be held back, and possibly in a room for cognitively impaired children?  Wrong.

Even though we had a diagnosis, and a label for his IEP, the district didn’t have the appropriate program for him (or teachers that knew what was best for him, apparently).  I knew the neighboring district had a reputation for an excellent program for kids with autism, but it was in another county.  We couldn’t just choose to go there.  We would have to move.

So we did.

We found a house to rent, moved in before the end of the school year, and had an IEP meeting in the new district that summer.  Again, this new district attempted to persuade me to send him to the closest school, which only had a CI room, but I was adamant that I wanted him at the school with the ASD room, ASD teachers, etc. (which really wasn’t that far).  After the divorce (about a year and a half later), The Boy and I moved to a house that was down the street from his school, so it became his home school anyway.

The rest of the story

After leaving the hospital program, we began occupational therapy with a private practice, and met Miss Megan, who was the first real advocate for The Boy that we had.  She was an angel, and The Boy thrived under her care.  He eventually didn’t need outside OT anymore, thanks to her hard work and his new school district.  He had speech and OT at school, and gradually graduated from OT in school, too.  He still has speech for learning social skills.  He has come so far at his school, and his teachers and therapists get all the credit.  I haven’t agreed with every decision over the years, but his successes in 5th grade this year really shine a light on how incredibly far he has come.

If you’ve read this far, you are a kind soul, and a trooper.  We parents get caught up in our own stories, just like older generation like to re-tell their war stories, football stories or adventure stories.  We have fought battles and want to show our scars.

Thanks for letting me share.

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11 thoughts on “Our Story

  1. Thanks for sharing your story. I think it’s really helpful for parents to read how it went down for other families, just as it’s helpful for you to say it all ‘out loud’. I’m really glad that he’s doing so well, it was a nice ending!

  2. Very well done. I think it is important for you to write it all down and reread it. I think it is cathartic. I think it helps you put everything in perspective. I think it helps you recognize your path forward. I also think your story is helpful for others who are following a similar road. Okay, I’ll stop thinking now. lol

  3. I agree that not only will it help you re-discover how much he’s progressed, but super helpful for families that are just now dealing with this. I’m so disappointed they didn’t even try to explain Autism to you at the initial diagnosis or tell you it’s not a death sentance! It (as you can see now) can make someone extra-incredible! 🙂

    • Right! It’s not something anyone wants to hear, but it shouldn’t be a negative thing either. Just different. You have to remember, too, that there weren’t that many resources out there even five years ago. Now there is so much more awareness and support.

      • I know, it is amazing how much has changed in five years. But still… hearing that is hard enough. They should’ve had the sense to go a bit lighter or shown you the AMAZING people that have had autism and accomplished AMAZING things!

  4. Pingback: Dear Me, Back Then | Simple. I Just Do.

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