Tuesday, February 12, 2013

Permanently Disabled?

I hear the word disabled over and over again when referring to Liam.
From our family physician, neurologist, the psychologists, schools, therapists and now,.. the Department of Licensing.

It all started back in December when Liam started gaining weight and getting his strength back.
Suddenly he sprouted up two inches to 4' 2" tall and gained back a previously lost 5lbs now weighing 53lbs. This may not seem significant, but for a child I could barely keep a hold on before, it became too much.
When we went out if I couldn't find a parking spot right in front of a store entrance, I would park near a cart return and put him directly in the basket. If a spot wasn't available there, I would return home and hope for better luck next time.
It got to the point where I started having anxiety, that became quite severe, every time we drove in to a busy lot.

And then it happened.
One day I had to run in to Costco but just couldn't carry him. My back was swollen and literally black and blue from all of the straining caused by lifting and carrying him everywhere. I parked fairly close to the entrance. There weren't any carts available so I held one of his hands and his other arm tightly. We made it in the door and I breathed that sigh of relief. Maybe things were getting better.
We quickly got through the store and checked out. With just two items, one under my arm and the other in my bag, I was able to get a good grip on him.
We walked out the door and towards our parked car. Then it happened...
A large dog jumped up from the bed of a truck and lunged towards us, barking loudly.
Liam twisted out of my arms and ran out in front of another truck passing (much too quickly for a parking lot) behind us. Fortunately the truck stopped in time and no one was hurt. But the man driving proceeded to scream at me for being a neglectful mother.
As if I wasn't scared enough. As if I wasn't going to be beating myself up about this incident for many weeks and months to come.
That was the day I knew we had to do something.

A couple of weeks later we went to Liam's doctor. We had already been advised to get a disabled parking permit. Patrick and I had talked it over but just didn't think that that would ever be necessary.
Until this happened.
I left early for the appointment. Patrick hugged and kissed me trying to reassure me that all would be ok. An hour later we arrived at the doctors office.
Carrying Liam, I walked in to the door and checked in. I could already feel the heaviness in my chest and throat. His doctor came out to say hi before the appointment. She must have noticed the distressed look on my face, as she pulled us back in to the office right away.
I handed Liam his iPad as she closed the door. Hoping he would be distracted enough to miss my less than composed state.
As soon as she got the door closed I was met with a hug. She didn't know what, but she knew something was going on. We sat down and discussed the concerns over Liam's safety.
She quickly filled out the disabled parking permit application. She was just about to sign when she looked up at me and said "I am going to mark this as permanently disabled". She continued to explain why and what it meant, but I didn't hear anything else. Permanently disabled? It continued to echo through my head. When did my sweet, loving, energetic, curious little man become permanently disabled!?
The tears were welling up as I moved Liam across the room.
Returning to my seat in front of her, I broke down.

Over the past 3 1/2 years we have been through a lot. Liam has lost all speech, socialization and desire for anything beyond food. He has been through hours and hours of evaluations, worked with a slew of therapists, attended two developmental preschools, been in multiple labs, diagnosed with severe regressive autism-nonverbal, PICA, global developmental delays, sensory processing disorder and many more.
Nothing could have prepared me for the pain I would feel that day.

The rest of the appointment is a bit of a blur. We went through some lab tests, noted improvement in his mitochondrial function and decreased brain inflammation. She was thrilled he had gained weight and started growing again. I know there was a bunch more that was discussed in that hour, I have the notes in his home file, but I couldn't delve too deeply in much else.

A few days later I went to the Department of Licensing and received Liam's disabled parking permit hang tags. The agent asked who the permit was for. I explained that it was for my son at home. I didn't want to bring him with me just in case I lost composure again. Fortunately I didn't.
The woman was very sympathetic as most people usually are. I got the pity speech that comes all too often after meeting Liam or hearing of his struggles. I know that these people mean well so I smile and thank them for their kindness. I know that's what it is. I can't imagine being on the other side of these conversations.

Since receiving this permit we have come to terms with it and what it means.
Just as Liam's autism label doesn't stop him from making significant progress beyond what any of the specialists ever thought possible, a label of permanently disabled doesn't mean he is and will forever be.
There are just those days that are really rough. The ones where hope seems so far away. But when we actually sit down and put emotions aside, we can see all of the possibilities for Liam.
He has already broken out of the box of what his particular brand of autism is supposed to be. He has made gains that are, according to the experts, not possible. Yes, he has to fight much harder and work much longer than the typical child to learn something. But he doesn't give up and either will we.

Just know that in those darkest of days that there is hope.
If you believe in God, pray. If you don't believe in God, pray anyways. It can't hurt, right?
Prayer, meditation, yoga,...it all helps to get us through, especially in those tough times.

With Love,


  1. Susie, I just want to let you know that you're a huge inspiration to me. You're an amazing mother and and wife and Liam is so very blessed to have you as his mother, as I know you feel so very blessed to have him as your son. I love your blog! You're a very talented writer, and I love all your wisdom.
    Hugs and prayers,

    1. Lea,
      Thank you for your kind words of encouragement. I really appreciate them.
      I do feel incredibly blessed to have Liam. He has taught us so much. Very proud of my little man. :)
      xo Susie