Early Intervention is Key…but wait six months.

Patience: the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.

Patience = something I don’t have.  I really wish I did.  It’d make life a hell of a lot easier.

My impatience leads me to a natural disinclination for doctor’s offices.  I loathe going to the doctor.  Inevitably, you spend more time waiting to see doctors than actually seeing them.  It’s annoying.  I don’t like it.  ‘Nuff said.

I think perhaps this disdain led me to the overzealous idea of combining both my three year-old and four month-old’s check-ups into a joint appointment last August.

Not my finest hour.

Big C did what I would have done, were it socially acceptable.  He screamed and ran in circles around the room, hitting the walls, and writhing on the floor.  I feel you, Big C.

After some attempt at discussion with me, his pediatrician recommended he see a child behaviorist.  She went on to say it might take six months to get in.

I thought she was joking.

Nope.  She recommended a few books and more or less said, “Good luck,” and we were on our ‘merry’ way.

The doc was true to her word.  Six months later (after some persistent calling on my part), we finally had an appointment to see this “amazing” doctor (not impressed).

My husband and I weren’t honestly sure what to expect.  I, for one, was excited to hear what this behaviorist had to say.  Finally, I thought.  Someone was going to give me some real strategies to help my kid!

What we got was a claim that he might be “mildly autistic” (more on that in a later blog) and that we’d have to come back in a few weeks to confirm.  She compared Big C to a news broadcaster.  He had a lot to say, but much of it was unintelligible, random, and directed at nobody (was this a knock at news anchors?).

It took a few days for the potential diagnosis to really sink in.  When it did, I cried (a lot), and felt guilty, embarrassed, confused, angry, scared: if you’ve been down this road, you know exactly what I’m talking about.  Once it did sink in though, I was ready for action.  I didn’t want to sit around anymore.  I already felt like I’d lost six months; I wanted to get rolling.

Then the road blocks began popping up.  When we got the official diagnosis of ASD, along with a gamut of recommended therapies, resources, and books to read, we discovered our insurance didn’t recognize this pediatrician’s diagnosis.  She hadn’t done a full evaluation.  We had to make more phone calls.  Once again, answers of six-eight month waits was the norm just to get an evaluation.  This didn’t include the additional months of waiting to get the therapies started afterwards.  A genetics test was suggested.  Wait time – eight months.

I was dumbfounded.  I was being told my son had ASD and it was possible I may have to wait nearly a year to start certain therapies?

This was simply unacceptable, so my husband and I did some more digging.  We found a place, a full evaluation center recognized and approved by insurance with only a three-week wait.  It was new, so the long wait lists hadn’t developed (yet).

So we went through an entirely new health system and got the same diagnosis, but this time at least, we had the single sheet of paper our insurance company wanted to see.

That was two weeks ago.  Now, we are in the midst of building our team of therapists for our son.

We’re the lucky ones.  It’s been less than a year for us to get all of this figured out.  My heart goes out to those of you who are still trying to get answers, who are still on waiting lists, who don’t have insurance, for those of you who simply want the best for your child, and are being told, sorry, you have to wait.

I’m rooting for you.

And please, let me know if you need someone to make a few nasty phone calls to get the ball rolling.  I can be highly persuasive.


Darren Johnson / iDJ Photography / Foter / CC BY-NC-ND

~Chaos Contemplated (for now)

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8 thoughts on “Early Intervention is Key…but wait six months.

  1. We got our diagnosis in December. Nearly two years after EI evaluated her. I have to say, i do feel lucky that we got our diagnosis when she was just under four years of age. I have heard later with kids who are more obviously on the spectrum than my daughter. She had EI speech and occupational for one year before she discharged and I had a community outreach program evaluate and refer her for otupatient therapy. She’s had two years of therapy now and is lucky to get more.

    There are always roadblocks though. I had been expressing my concerns since she was one year old to her former pediatrician. No one listened for an entire year. Then i finally get her started to be discharged from services a year later and she went months without therapy because our county said no to the funding for her evaluation.

    Now we are on a waiting list for her ABA therapy to start. And therapy planning sessions. I mean, really? I have been planning therapy around preschool, work, and nursing school for two years. Now they want to teach me how to plan that. Okay then.

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  2. Oh, how frustrating! I hope you don’t have too wait too long for the ABA. It reminds me of our “prestigious” doctor letting us know a social worker would be in touch with us to “help us deal with this challenging time.” Um…that was nearly three months ago. We’ll probably get a call in the fall. Super helpful.
    Thanks for commenting! Keep showing the love! 🙂

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  3. My son wasn’t diagnosed until almost fourth grade. This was back when no one had heard of Asperger’s, and no one was talking about ASD. After diagnosis, I was shown the door. On my own, I learned UCLA had an excellent socialization program for kids his age and older, but my then-spouse refused to cooperate in having our son attend (many reasons: abuse–if I wanted something, he didn’t, laziness, not wanting to let his parents know his child not “normal”…) and I needed his cooperation to coordinate payment, driving, and not stress our sons through our conflict. Aspie son was already biting nails to bleeding.

    Ah…good times, good times.

    So much better now that there is more awareness.
    So much worse now that ASD is increasing in frequency.

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    • Wow. You’ve been through a lot. I really appreciate how upbeat your blog remains. You could be really bitter. I’m glad you have been able to get your son some help. Sounds like he needed a mom who would persevere and not take no for an answer!

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  4. That’s who he needed. That’s not who he had. “O. Babe: The Dark Years.” But that’s all in the past now.

    He is not living the well-rounded highly-successful fulfilled life I dreamed for him, but he is a productive non-harmful independent member of society. More than most parents produce.

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