Wednesday, November 5, 2014

My Son Has Autism

After a long day of testing on Monday, my husband and I were told that our youngest son has autism (formerly Asperger's), ADHD and a possible mood disorder like his oldest brother. She called it “The Trifecta” because one condition is triggering the other.

It’s strange for me to type those words. Though my gut knew it to be true, it still feels weird to declare it. It gives me mixed feelings.

I admit that my first feeling is relief. I understand that my son will now have an opportunity to get the help he needs. After the appointment, I hugged my husband and cried in the waiting room. I could feel a weight being lifted off me. It felt so good. This was good news in a weird sort of way. Not that any parent wants their child to have a label, but when you’re watching your child struggle everyday, a diagnosis is the first step in turning things around. And let’s be honest, this news isn’t giving him a label for the first time, instead, it’s replacing the current label people have given him such as “brat”, “odd” or “difficult.” A label of autism may bring patience and understanding where it wasn’t before.

After the feeling of relief comes reality.

My son has autism.

And a possible mood disorder too?

What does that mean?

What will his future look like?

How will we be able to help him?

I don’t want to go down the rabbit hole of worry, but there are feelings a parent needs to process whenever your child gets a diagnosis. A diagnosis that will impact their child’s entire life. Sadness is one of them. My husband and I are going through that now.

There are still feelings of anger for having been dismissed by his previous doctor over a year and a half ago, but after talking to the current doctor, she was able to explain that my son “presents well” and that can lead to a misdiagnosis. But she explained that after spending enough time with him, she could see him slip into the ASD behaviors. She also pointed out that a lot of kids higher up on the spectrum don’t get diagnosed until they are older and to a certain extent they can handle things pretty well, like in a clinical setting, until enough stressors surround them, then they completely fall apart. Forth grade was that tipping point for our son.

On a positive note, she smiled and told us how adorable, bright and funny he is. Then she told me that I should read up on “2e kids”. These are twice exceptional kids, intellectually above average, but diagnosed with one or more disabilities. She believes this describes our son. She said it’s like a coin, you have one side that has all the struggles and if you flip it over, you have something pretty special.

I can’t argue with her, he is pretty darn special.

Then I have a final feeling. And would you know it... it’s hope.

Kinda funny after I recently said I was letting go of hope. But there it is, once again floating in front of me like a pretty, shiny balloon.

I have hope that my son will be approved for services and that we’ll be able to give him the support he needs in his school and at home.

I have hope that I will have access to the support I need in order to raise my son.

I have hope that we can now make a difference.

I have hope again.

Hello, old familiar friend.












Saturday, November 1, 2014

Autism—Will they see it too?

The day is fast approaching when our youngest son has his second assessment for autism. Honestly, I’m filled with anxiety. It’s making me sick. I find myself wrestling with anger, disappointment and great concern that the second opinion will also be unproductive. I feel it in my heart and in my gut that my son has Asperger’s. Yet the first assessment didn’t see it.

What do I do with that? How can something be so true to me, yet go unseen by a professional?

My husband and I have gone through the entire DSM 5 guidelines for Autism and my son meets every criteria. This process only proved to create more frustration as we questioned how it wasn’t diagnosed the first time.

I’ve read time and time again that Asperger’s, now referred to as autism or ASD, is hard to diagnose in high functioning kids. I’ve read that they’re often misdiagnosed, or simply considered gifted, that is until years later when it becomes more apparent.

How can we avoid this wasted time? How can we get the help he needs today? How can I be sure that on Monday the doctor will see what so many others have seen. From relatives to close friends, even strangers, all have expressed their sense that my son is on the spectrum.

Just this past Sunday I spied on my son after he ran out of service 10 minutes in. I found him where I always find him, he was outside playing video games in his head. As I watched him, I saw his rhymetic pattern, jumping over invisible walls and entering into new levels in his mental “video game”. It was a ritualistic dance, one I now refer to as mental stimming. When my husband approached him my son informed my husband that he was now up to 9,312 points! He was alone, isolated from everyone and was as happy as could be. As I stood there, enjoying his dance, an elder from the church approached me. As an usher, he’s had the pleasure of watching my son play outside every Sunday. Today was the first time he spoke to me. He looked over my shoulder to where my son played and said, “Have you ever seen the TV show Parenthood?” I replied, “Yes, I love that show,” knowing full well where he was headed with his innocent question. He smiled and said, “You know the character Max, the boy with Asperger’s?” With another smile I said, “Yes,” and pointed to my son who was jumping to the next level and said, “does it look familiar?” He only smiled and gave me a look of acknowledgment before he walked away.

This by no means is an indicator that my son is on the spectrum, I have lists of behaviors, 504 plan and interviews with family and teachers to support that, however this simple exchange reminded me that there is something there that people see. It is real, whether or not the doctor sees it, it is real.