Kamping with Autism: To the Max

I’ve been avoiding this post, but I think I’ll feel better once its done. Max has officially been diagnosed on the autism spectrum.

Because of Kampbell’s diagnosis we knew that having a boy, Max would be at a higher risk of developing autism. When Max was a brand-new baby, I found out about a study through the University of Washington in Seattle for high-risk infants that was being sponsored by Autism Speaks. I called the number to find out more information and was lucky enough to get Max on the list.

The Study required me and Jesse to bring Max to Seattle at 6 months, 1-year, 2-years, and 3-years for an MRI and a thorough behavior assessment. The goal is to study the white gamma in the brains of the high-risk infants and watch for changes as they develop. The researchers are also interested in seeing what happens to the brain if indeed, children do develop autism.

I was so excited. Free behavior assessments and doctors watching his brain development?  It sounded very reassuring. I signed us up and the assessing began.

At the end of August we went to Seattle. We were nervous. Max had started doing strange, repetitive behaviors; his social skills had started to regress, and his receptive and expressive language had fallen way behind. We were, however hoping the team of psychologists would convince us we were just paranoid parents and Max was perfectly normal.

We hoped. That’s not what they said.

We were told that Max was behind and the team wanted to review all of his tapes from previous assessments. I got a phone call about a week after we returned home and they told me the team was, in fact, diagnosing Max, and putting him on the autism spectrum.

I sat on the phone with the amazing psychologist and balled my eyes out. I kept saying over and over, “This can’t be happening.”

For the next week or so, I cut everybody out. I hid inside myself and tried to figure a way out of this. I didn’t, and still don’t want to watch another precious baby slip away.

I felt awful. I’m angry, and SO frustrated!

Someone got the paper work wrong in heaven! Or, maybe God doesn’t know me at all.

Jesse and I are still grieving; trying to come to terms with what it’s going to mean, having two boys on the spectrum. Some days are good. I look at Max and feel optimistic. Other days, I go back to being angry; trying to understand why the universe hates me so much.

The truth is, Max has already made a lot more connections than Kamp ever did at this age. We’re hoping he will be high-functioning, and live a much more independent life. It means a lot of hard work for me and Jesse right now, and hopefully the pay-offs will come sooner than later.

I’m determined to get Max through this so that he can blend in – socially.  We’re Kamping with Autism, people! Now it’s just Kamping with Autism: To the Max!

Waiting to hear, “I Love You.”

Along with autism, Kamp has been diagnosed with Receptive and Expressive Communicative Delay Disorder (RECDD). It means that, not only does Kamp not use language, but he has a hard time understanding it too.

For example, Kamp can take a picture of a bus, match it to a corresponding picture and repeat the word bus (after I say it first), but he does not understand that the word bus represents the thing in the picture. Nor does he understand that the yellow bus waiting for him outside our house is the same thing as the ‘yellow thing’ in the picture.

He doesn’t see the importance of language, and doesn’t know how to think in abstract terms. How do you teach a little boy that language is important when he doesn’t know what language is? Therein lies the difficulty.

Ever since he was diagnosed with autism, I have really pushed language hard. If Kamp could get over the language hurdle I feel like everything else would come.

A few months ago I was at the gym when I answered a phone call from Kamp’s speech therapist. She told me that after recent testing I shouldn’t count Kamp out for using some language, but the likelihood of him
talking the way we had hoped was unlikely. I began to cry. I tried to hold it in but I stood in the middle of the gym – on the treadmill – with tears running down my face  – and I cried.

Don’t mistake Cry-Fest 2012 for surrender! I will never give up fighting to find a way for Kamp to communicate. Whether it is speaking, signing or writing, like the inspiring Carly Fleischmann, I will find a way for him to talk to me.

Why?

You see, I’ve never heard my 5, almost 6 year-old-boy, tell me he loves me. I don’t push him to mimic that phrase because I don’t want him to simply regurgitate it. I want to hear it for the first time – one day – when he can say it on his own, because he means it. I don’t care if it is spoken, said in signs or written down, I long for him to say, “I love you” every time I send him off to school or kiss him goodnight.

I make an effort to soak it up every time one of my kids tells me they love me. I realize it’s something precious and important. We all want our children to love us, and I know Kamp loves me; it would  just be so sweet, and amazing, to hear it too. I don’t care if it said silly, or with attitude; when I hear those words it lights up my heart and I can’t wait to hear them again. I will never get tired of hearing “Mom, I love you.” And when it comes to my little Kamp, I will wait forever.

Neverland

At the end of October, Jesse and I took Kampbell into to The Children’s Center in Salt Lake City to have his “autism” diagnosis re-evaluated. It turns out Kamp is much lower on the autism spectrum than we thought.  Of course, Jesse and I had our suspicions, which is why we took the time (and spent the money) to have him re-evaluated.

I was surprised at how bad it hurt. It felt – and still feels – like  someone’s stabbed me in the heart. I titled this post Neverland because I guess that’s how I see my Kamp; he is my “lost boy” who will never grow up. Jesse and I now have to face the reality that Kamp will never be able to be on his own.

It is all a little overwhelming, and honestly a little depressing. I’m not perfect; and I’m not going to pretend that I haven’t locked myself in the bathroom with all the lights off and balled my eyes out. I have. Several times.  For some reason, it just feels good. And it’s much more dramatic to cry in the dark.

But, in the spirit of being thankful, I can honestly say that I’m thankful that my Kamp doesn’t have to deal with the complexities involved in growing up. He won’t have the burden of fitting in, or getting the right grades; getting into the right college, paying bills or dealing with relationships. Everything gets to stay very simple and innocent for him. He is my Peter Pan who can stay in childhood bliss through every breath he takes on this earth.

Isn’t that what we all secretly hope for? To live in a world where your biggest worry is whether or not Mom remembered to buy ranch dressing.

Don’t worry, I did.

In the Broadway musical, “Peter Pan”, Peter and the Lost Boys sing a song entitled, “I Won’t Grow Up.”  They sing, “If growing up means it would be beneath my dignity to climb a tree, I’ll never grow up, never grow up, never grow up, not me!” That describes my Kamp perfectly.

So this Thanksgiving, have fun in the real world. Jesse, Hadley, Max and I will be in Neverland with Kamp!