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!

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10 thoughts on “Kamping with Autism: To the Max

  1. Beth and Jesse you guys are great and amazing parents!!! Know Kamp and Max love you and that will never change!!! Love you guys and miss you.

  2. Oh my gosh! My heart goes out to you both! I have been watching your posts but all i can say is you guys are some strong parents. I commend you both!

  3. Beth you are an amazing mom. You inspire me to want to be a better mom. Your sweet little Max is lucky to have a mama that will fight hard for him.

  4. Beth, I know that our Heavenly Father not only knows you, but he has trust in your ability to love and care for your two boys! Special needs children are found, most often, in the most incredible families. It is not an accident that this is true!
    Love you, Uncle Russ

  5. I’m so sorry about Max. I don’t blame you for feeling all of those things. That’s heartbreaking. I saw your news story when they mentioned both your boys and I was surprised and sad. But can I also add that you looked and sounded amazing. You did a great job. And you will continue to be just what these boys need, I know that for a fact. I know God sent them to you because he knows you and your heart and your capacity to love these two special spirits. He doesn’t expect you to do it perfectly or even without feeling all kinds of pain and frustration along the way. It’s more than I think most of us can even comprehend. But try your hardest to believe– SOMEDAY you will KNOW WHY and the final picture will be complete and (let’s hope!) you will find all the good in this. I know I can’t speak from experience, and I hope I’m not one of those clueless parents who tries hard to be encouraging and instead makes you feel worse…but just know that we are sending your mental strength and positive vibes, you are doing something absolutely incredible and I wish you knew how many people look up to you, respect you, and admire you for it.

  6. Beth, indeed your Heavenly Father does love you. Through the strength you show all of us, we are strengthened. We can see the eternal perspectives even though the here and now is so difficult for you, Jesse, and Hadley. You are in our prayers daily and you are greatly loved by all of us.

  7. You might consider reading the book, The Myth of Autism by Dr. Michael J. Goldberg. I also have a son who has been diagnosed with Autism, but have seen some improvement through some of the ideas in this book. I agree with much of what he says in his book about Autism. The odds of 2 of your sons having true Autism are out of this world and highly unlikely. It’s worth reading, and certainly can’t hurt to hear a different perspective. Best of luck!

    • Actually the odds of you having more once you already have a child with autism go up significantly. I have read over his book, and I think it works for some kids but not all which is where the true autism thing comes in I think. Thank you for your thoughts.

  8. Beth I look up to you so much! You are an amazing mother, and your husband sounds pretty great too. I hope that this study will help them figure out why there is so many cases of autism…and how to make their lives better. You sound like you are working hard with your two boys. I think you and your husband should automatically be put up in the highest degree of heaven no matter what happens in this life. You are amazing and I think your family is adorable. Its okay to cry or be mad…

  9. Loving on all of you with all of my heart and soul.. Dalton is watching and helping… he is also giggling at you guys… I love you bothe and the kiddoes.. Big hugs.. God loves all of us..

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