facing reality

 I remember filling out the m-chat form in the pediatrician’s office. I knew about the m-chat, my husband was in medical school and I’d read about it in the developmental books I was reading. I left several answers blank, deciding how to answer them. Would he grow out of these tendencies to not look people in the eye, not interact with others? I found myself blindly trying to predict Joel’s future based on a split second impression and a stupid form in the pediatrician’s office.  But when the doctor came to clarify the answers, I couldn’t accept the fact that Joel might need help, more permanent help. So I told the doctor he was fine. A week later, I finally talked to my husband about the fact that everyone was saying Joel needed to be in speech therapy and physical therapy and probably occupational therapy and yet I refused to put him in any of the programs, stubbornly insisting it was a phase and that he’d grow out of it. I still remember that conversation and how neither of us wanted to admit it, but Joel was getting worse.

   

The day I found out my son had autism is stored way back in my memory, in a spot I’m afraid to access. I’m tired of crying. The feelings and roller coaster motion of the day happen in a part of me that I try not to open too often.  When we began Early Intervention, I was sure it was a short term thing. Joel has been in therapy of some kind since he was 16 months old. It started out as physical therapy, when he wouldn’t walk. He was 18 months old and still crawling around, eating things off the floor. I thought he only needed a little physical therapy and that would be that. I had no idea we would be in therapy for years more. We progressed into speech and occupational therapy.

At one of our appointments, an aide asked me if my son had autism “No!” I said, spitting the word out. “Why would you ask that?” She met my eyes and seemed as uneasy as she backtracked. “I just work with autism kids a lot,” she stumbled, seeing my reaction. “Does he qualify for long term care?” she asked. Long term care, for people with severe disabilities, life altering conditions my son could not possibly have. I was angry now, so incredibly angry that she was asking me this, and angry at myself for not reacting well. I didn’t answer her, but we left the office and switched therapists.

 But she had planted a seed. Here was my beautiful, talented Joel at 20 months whose babbles of “mama” and “dada” had been reduced to shrill screams and tantrums. He wouldn't look people in the eye and seldom played with other children. He spun in circles and ran into walls. I knew that she might be on to something, but I pushed it away.

After that I would find ways to bring up autism at all our appointments. At this point, I feel now that I was just begging someone to actually tell me yes, it is autism. We had great therapists, so no one did because that wasn’t their job. It wasn’t until we took Joel to a developmental pediatrician, almost a year later, that I heard the words I had been wanting and waiting and dreading to hear. “Yes, it definitely looks like autism,” the doctor said kindly. Rob and I nodded and held hands tightly as our son wandered around the room, oblivious to any human interaction. I gulped and tears streamed from my eyes as I asked her “Well, what do we do now?” The answer was what we were already doing, plus so much more. Find a habilitation program, start ABA therapy at once, continue with speech therapy, find an occupational therapist, find a music therapist, and keep him in his developmental preschool class.  That was our beginning, really. From then on, we jumped into anything Joel qualified for

    I look at our history and sometimes want to kick myself for not just accepting things and diving in. When he was first recommended for speech therapy, I laughed and rolled my eyes. “This kid talks all the time! Why would he need speech therapy?” I said to Rob. Well, because he wasn’t speaking English, that’s why.  When we began Early Intervention and I felt frustrated, I took us out of the program for 3 months because I truly thought he did not need it or was just a late bloomer. I was struggling to face reality, and at times I still am. But that's part of life with a kid on the autism spectrum. The good part, the absolute best part, is that his victories are hard-fought. Although his progress seems slow and at times interminable, when he hits a goal it is the sweetest, most beautiful feeling.

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appointment anxiety

We just had our bi-yearly developmental pediatrician visit for Joel. These visits give me such crazy attacks of anxiety and panic that I often wonder if I'd be better off medicated into a stupor. The past couple of visits Rob has been able to come to, which really helps. He can hold my hand and let me squeeze it when I think that I'm going to cry. And he usually comes away with a pretty bruised hand. the doctor is nice, and I know she doesn't mean to make me cry, it's just the nature of the beast. I mean, I wouldn't want to be in her position, telling well-meaning parents that sorry, your son is not going to fit the perfect mold you've planned on.

That sounds bitter. I am, but not really. Yes, I wish things were different, wish he were totally happy and communicative and didn't get made fun of for his tics. But then I see how far we have come, how much progress and potential there is in this kid, and I lighten up. The truth of the matter is, he's very self-motivated. So most of the time, he IS happy because he's doing what he wants to do.

We've just got to work on me, then.

Intro

Hi. I'm Kristen, and this blog is about my son Joel, who is now 4 years old. I need a place to put down all the crazy things that run through my head in terms of Joel's development. I'm married to a great guy, and we also have an 18 month old daughter, Charlotte, and a dog named Tess. And some fish, but I'm not sure if they are still alive so we're not including them in the headcount for now.....

I should back this crazy train up to about four years ago.

In the beginning, everything was perfect. My husband had been accepted to medical school in Arizona, I was  due with our first baby in September, and we had just bought our house. Sure, moving away from our families in Utah was difficult, but we were so darn excited to start a new chapter of our lives. We were going to be parents-- we would be our own little family unit. we were expecting a little boy, and he'd be a carbon copy of all of our best features-- mechanically minded like his dad and love to read like his mom. We'd play soccer together outside in our new backyard. Life couldn't get much better.

Fast forward 18 months. We had this, a beautiful, beautiful moment with my husband's family where our son FINALLY took his first steps. After months of coaxing, Joel finally started walking at nearly-19 months-old.
Surely all this would come around now, all the speech we'd been waiting for would bloom, we'd finally see what was going on inside that little head of his. We were positive, no doubt, that now that he was walking everything else we had been anticipating would fall into place. "He's a boy," I heard all the time. "Just wait, he'll be talking your ear off soon."

And sadly, in some ways we are still waiting.

In fact, most of his speech disappeared. Where a cow had said "moo" and cars went "vroom" they just.... didn't anymore. He stopped looking people in the eyes. He began spinning in.circles and flapping his hands and running into walls. He became obsessed with finding soft things to run against his skin, and especially fixated on using people's hair as a way to get this "fix". And he would scream gibberish for hours at a time.

I don't want it to sound like the past few years with Joel have been torture. But it was these things, these "symptoms" that drove me to early intervention, that drove me to insisting on therapy and a developmental pediatrician consult. I am incredibly grateful for these "symptoms", because they were the driving force I needed to get out of denial and into a proactive state.

The kid has made some great, great progress. Right now, he is communicating verbally with an echolalic tendency. A typical "conversation" with Joel goes something like this.

"Who's that on your socks? Is that Lightning McQueen?"
"McQueen."
"We're going to go downstairs and eat some lunch."
"Lunch."
"Do you want a sandwich or chicken?"
"Chicken"

These conversations are HUGE, and are what usually get me through the hard times. Because he IS communicating with us-- slowly, limited, but yes, it is there. This is the result of many, many hours of ABA therapy, developmental preschool, and speech therapy.  The boy has taught us so much and to see his growth and progression is truly remarkable. It has been a hard couple of years--the years of 2 and 3 for our boy were some of the angriest I have ever had and have ever witnessed in a child.

Our "official" diagnosis is ASD- autism spectrum disorder. Behind it are also a global language delay, and a handful of other oddities-- Duane syndrome, poor muscle coordination, etc. etc. Obviously, I have a lot to say on all of this, so don't be afraid to jump in and say hi! Do you have special needs kids?