Guest Blogger: Marissa of 4 Little Monkeys

“Your child is autistic. Make a follow up appointment for two months for now.” I’ll never forget those words. It was almost like a knife in the stomach for me. Christopher was 15 months old at the time. We took him to a neurologist bec…ause he had an abnormal MRI, an MRI he had done through an eye doctor to check on an abnormal eye nerve.

Christopher was a premiee and we had him at the eye doctor as a precaution. I was shocked when she found a problem with his eye nerves and had ordered an MRI to investigate. The MRI came back ok with his eyes although he has the larger eye nerves still. It did find a bigger issue though. Chris has delayed mylenation meaning the connections in his brain move slower than most people’s connections. We were told to go to a neurologist and when we were there we were told he was autistic.

I used to work with children who were on the spectrum so I thought I could pick a kid out who was. I also thought 15 months old was too early to be diagnosed as being on the spectrum. It turns out it isn’t. Chris has a genetic condition that we didn’t find out about until last year when he was 2.5 years old. We are now learning that his 16p11.2 duplication is inherited and more than likely our twins have this as well. We have had concerns with Matthew, on of our twins as well, being on the spectrum. We now know that almost 80 percent of kids with this genetic condition are on the spectrum.

I used to sit and cry every day looking at Christopher thinking “I thought I could handle this. I can’t.” I would worry about his future. I would worry about how we would interact most of all. I worried that we would not have the connections that most mothers and sons do a connection I loved with my 3 other children.

Almost two years into our diagnosis I can tell you those fears are all gone, for the most part. He and I played this weekend together and I loved every minute of it. We sat and laughed on our couch together as if we were communicating completely through our laughter. I would have never thought this could happen. A year ago shortly after the genetic syndrome diagnosis, I wouldn’t have thought he and I could have the connection we do.
A year ago I looked at my son as “autistic” or as “intellectually delayed” and not my blond haired blue eyed baby boy. When I look at Christopher now I would have never thought he’d be doing what he is. He is behind and always will be BUT he has made such great progress that people don’t even realize he is the same kid. I also think that progress is made that much sweeter. I think I’ve celebrated the boys’ milestones more now that we know they work so hard to achieve them. Most of all, I enjoy my boys for who they are. I love everything about them, quarks and all.

What I want people to know, and I usually share with them if they are new to a diagnosis, is your child is the same as they were the day before their diagnosis. They are still YOUR child. Now you just know how to do things with them a bit better. It makes it easier to get the help your child needs

~Marissa of 4 Little Monkeys

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3 comments

  1. Thank you for sharing your story. That IS interesting that the diagnosis came so early and that it was through detection of the other disorder. For his sake (& yours) that is such a good thing though that the Dx was early and you could start some early intervention right away. I'm so happy to hear he is already progressing so well. Good work, Marissa!

    ******
    I am a teacher for kids with Autism. I'm dedicating my blog all month long to Autism Awareness.

  2. DRS Are The Best

    Thank you so much for sharing this story. It is amazing how that transition happens — from the devastation of learning the potential limitations that our children face to the realization of how much they CAN do and how we still have those amazing moments with them.

    All the best to you and your wonderful family!

  3. "Your child is the same as the day before the diagnosis." I love that statement. What a great way to look at it, because it is completely true.
    Thank you so much for sharing your story with us. You are an amazing mother.

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