Monday, September 19, 2011

A Regression Story Part 2


For Part 1 of A Regression Story, click here.

The theme for our regression vacation... crying
After my husband and I returned from our less-than-perfect tropical vacation with Conor and our close friends, I immediately called my son’s pediatrician.  That’s what you do, right, when something goes terribly wrong with your kid? You call the doctor.

I described the symptoms to him over the phone, stuttering and ahem-ing and clearing my throat. It made me nervous, saying the words out loud.

“So now you think he has autism?” he scoffed.

I don’t remember much about the conversation after that.  I think I stammered, “I don’t know” and hung up the phone.  Then I did what I always do in these situations.

Weeping, I called my husband at his office. I talk a good game, but Jimmy's the hammer.

Jimmy then called the pediatrician and demanded that our concerns be taken seriously.  Of course, he got the referral to Kennedy Krieger Institute.  (He didn’t even have to cry or justify himself.  Shocking, I know.)

And, oh, how I wish I called that person at Kennedy right away.  But I didn’t.

You see, when you start to ask people who love you whether they think their grandson or their nephew or their son’s playmate has changed, they don’t want to see it either.

“He’s a boy,” my mom advised.  “They develop differently than girls. Slower.”  (I have three sisters and no brothers.)

“I don’t see anything,” my older sister said. “And I’m on my second kid. And Conor’s a boy.” (She has three girls now.)

It’s true, you know.  Boys can develop at a different pace than girls.  And aside from the two alarming symptoms (avoiding eye contact and losing speech), Conor still acted like Conor. 

(Most kids go through periods of sleeping and not sleeping, so I thought that maybe I could just chalk that up to a “phase”. A phase that lasted nine more years. It was a symptom.)

It was like I existed now in an alternate universe.  He was Conor, but quieter.  Weirder. Harder. Less present. Different. But the same.

He didn’t line his cars up and play with them inappropriately. They still zoomed down the ramp of the toy. He continued to love bouncing balls back and forth, and to go to the park.  He didn’t sit in the corner and rock and bang his head. He watched his videos and danced along. We read our books and listened to our music.  He put the square block in the square hole and the round peg in the round hole.

But still… different. Far away, even though he was right there. Quiet.  Eerily quiet.

Finally, I asked the woman I had recently hired to babysit Conor whether she saw anything amiss.  (I was starting to think about going back to work part time and a neighbor who was moving out of state just raved on and on about her babysitter, so I eagerly scooped her up.)

Gloria wound up staying with us for more than 10 years.
I expected Gloria to say the same things everyone else did. 

And do you know what she said to me?  “Whatever it is, Alisa, you can handle it.”

I thought this happened only in the movies, but my jaw literally dropped down and I left the room. I couldn’t even talk. It wasn’t exactly the response I had expected.  I didn’t know it at the time, but her son has autism too.  So she knew the signs.

And it was very loving, what she said to me.  Because she knew, and she was honest.

But still, I didn’t call Kennedy Krieger.

You see, my mom didn’t really like Kennedy Krieger that much.  She had worked for years with adults with developmental disabilities.  She felt that Kennedy just labeled people, and then sent them on their way. To be fair, demand quickly outstrips supply in the autism world. It was a problematic relationship, I guess.  Little did I know how important that label can be. 

She suggested that someone from Infants and Toddlers come out to evaluate Conor.

That sounded good to me.  It’s a viable alternative.  The wait times at Kennedy can be quite long, and it’s expensive.  The Maryland State Department of Education provides the evaluations to you at no expense, and has lesser wait times. Many parents use this service to evaluate their child.

The woman came.  She saw.  And then she left, saying she saw no signs of autism.  What about the loss of language? I asked.  She shrugged.  “Just don’t want it so much,” she told me.

That pacified me for a few weeks, but still, I was troubled.  I enrolled Conor in a speech program at Loyola College anyway, since he clearly had lost his speech.  Thanks to the speech pathology students, he said his first (first again?) word. 

Dump.  As in “dump the sand out of the truck”. God, we worked so hard for that word. I lived in the sandbox. Dump, scoop, dump, scoop, dump, scoop.

We could feel that something was wrong.  It’s just not normal to have speech and then lose it.  To have eye contact and then lose it.  So I persisted.

Someone suggested Mt. Washington Pediatric Hospital.  Again, plenty of parents use the physicians there to receive a diagnosis.  It’s a good alternative if you can’t get into Kennedy Krieger for months and months.

So Jim and I shuffled off to Mt. Washington Pediatric Hospital and saw a developmental pediatrician there.  (Hey, at least I didn’t have to cry this time to be taken seriously.)

Dr. Christmas played with Conor, he listened to our concerns, he observed my son.  And he declined to diagnose him with autism.

“But what about the loss of language?” I asked.  “What about his eye contact?”

“Oh, he’ll certainly need speech therapy,” he replied.  “He plays so normally. I don’t want to label him as having autism at such a young age.”

This still makes me furious. How dare he? Because of his hesitance, his reticence to “label” my child, we wasted so much precious intervention time.  He cost us a year. A year of intervention! It still makes my head hurt. In terms of the plasticity of his brain, a year was forever.

Conor was two and ½ years old.

I looked for about 3 hours for pictures of Conor during the time between
the regression and his brother's birth.
I think I was too scared to take photos; this is about the only one I could find.

By this time, my husband and I were in full panic mode.  Something just wasn’t right with Conor, and we were getting frustrated at the lack of progress. We both have M.B.As, for Christ's sake, and we were working hard at this.  But we could not get any traction.

What the hell was going on with my kid?

My husband came home one day and said that a co-worker with a son with autism suggested this Clinical Neurolinguist they really liked.  She had a lot of experience with children on the spectrum.  We got an appointment (two months wait) and went to see her.

The Clinical Neurolinguist labeled Conor with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) and told us it was quite mild.  “He’ll probably go to college and have a girlfriend,” she thought. “He’ll just be a little different. Quirky.”

We ramped up the speech therapy and started Occupational Therapy.  I felt relieved....for about five minutes. Mild, I can handle that I told myself.

Pregnant with our second child, I finally made that call to Kennedy Krieger.  We waited for months and months and months for that day to arrive.

The day after Aidan’s birth, my husband took Conor to be evaluated there.  I insisted.
Conor visiting me in the hospital.  He went to be evaluated the next day. 
No desire to interact with his brother, much less even look at him.
Seven days later, the four of us were sitting in the psychiatrist’s office to get the results. My stitches still hurt.

In her heavily accented English, the Chinese doctor told us the news.  “Your son has autism.  It is not mild, he is very affected by autism based on his ADOS score,” she told us.

“Not just mildly? I asked.  She shook her head.

I swear, I saw the floor buckle and I felt like I had been slapped hard, in the middle of my forehead.  I looked down at my week-old baby sleeping in the car seat on the floor, and wondered. 

Will he have autism too? What the hell do we do now?

Well, you do a lot. But that’s for another post.

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