mama whose curiosity knows no bounds

Posts tagged ‘facial expression’

Journey with K: 18 months to diagnosis #6

The social worker was a really cheerful, big lady, who panted to walk to my 2nd floor apartment. She immediately established a rapport with K. It was amazing that how well she and K played together.  While playing, she performed several tests (some of them aren’t even noticeable as the test!).  After then, she told me that except speech, he didn’t have too much delay.  And she told me that she didn’t think K had autism.  That was assuring.  After all, my husband was correct! But she noticed that K has some sensory issues (this is the first time I was exposed to “sensory integration disorder”).  I also told her that K couldn’t jump yet.  Those things made him eligible for not only speech therapy, but also at least evaluation for occupational and physical therapies.  They are all set up at child therapy center who serves kids like K.  There was no space for speech therapy there, so SLP would visit my apartment for assessment and therapy.  But for OT and PT, we were going to take K.

Both occupational therapist and physical therapist came to the same conclusion: K qualifies for their service.  They were all paid for by ALTA regional center (this is California’s unique system of service delivery).

Meanwhile, I took K to his pediatrician for yet another referral.  He was a bit surprised with the result of speech evaluation, which suggested autism.  He brought a bouncing ball and played with K for a few minutes.  Then he told me that because K was very interactive and enjoyed the play, the doctor didn’t think K was autistic.  But he sent the referral anyway.

I should have been hearing from UC Davis MIND institute to confirm/arrange appointment within a few days.  For hearing and speech evaluation, it was the case.  K was on UCDMC health system and referral process was annoying but smooth.  But this time, there was no call.  I waited and waited and about a month later, I couldn’t wait any longer so I called the MIND institute.  I think it was a nurse who spoke to me.  She pulled up a file and told me, “he’s been diagnosed with speech delay, I don’t see why he was even referred to us.  He already has a diagnosis.  What’s the point of seeing us?”

I snapped. I was quietly speaking on my cellphone in the lab, but I rashed out to the veranda.  Then yelled, “HE NEEDS AUTISM EVALUATION!!! HE MIGHT BE AUTISTIC. THAT’S WHAT SPEECH EVALUATION REPORT MUST SAY!”.

The nurse’s reaction was, “oh.”  “Oh”? is that it? for delaying evaluation for a month by overlooking the report? But at least she got why the referral was there.  And I was told there was five months  wait.  I lost words at this point.  Do I have to wait another five months before I know the answer? He’s already 2 years old.  But I was told, K was getting evaluation ahead of others because he was young.  If he were, say, 5 years old, they kept postponing the appointment.  That seemed so unfair to the older kids.  I had no idea at that point was their mission was to identify early and study (or prove) ABA on very young children.  You can tell how naive I had been. “Five month wait? Lucky you!”, you might say.  Now 8 months wait is norm and wait could be even longer.

Anyhow, I made an appointment for the diagnosis and received tons of paperwork to fill in.  I was swinging between hope and despair.  Caseworker, SLP, pediatrician and my husband didn’t believe K was autistic, though he definitely had a speech delay. OT and PT remained silent.  But filling those skill inventory forms made me devastated.  How many of these skills should K be performing by now?  Some of the questions appeared to be autism-specific. And I appeared to check most of them in the direction to the autism diagnosis.

Around the same time, the therapy schedules were set up and early intervention was started.

To be continued.



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