Monday, August 15, 2011

One of many colors on the Spectrum

I was recently shared this perfect narrative on raising a child with special needs. Most of you may already know a little bit of my family history, but for those of you that don't, this short video will give you a little more information on how special Ben is.

Between the struggles we had with Ben & AJ as infants (through GERD, ulcers, colic, sensory aversions, etc) it was only after we sought therapy for them last summer for the sensory integration disorder and feeding difficulties that I was certain Ben wasn't like other children his age. On May 27th my heart broke as my initial self-diagnosis of Ben was confirmed. I had been seeking answers for almost a year, waiting patiently on wait-lists, researching information, calling the county for help, reading countless books, and I wanted the diagnosis so I could move on. And here we are. My son is on the Autism spectrum and has been labeled with Aspergers.

We've had a crazy few months between the new addition of Thomas and bouncing back and forth between the developmental pediatrician, developmental psychologist, and neurologist. We're on the waiting list at Hopkins for a 2nd opinion as one doctor says he's on the spectrum and the other is hesitant to label him right now. The psychologist from the county also gave Ben a label of high-functioning Autism. Everyone has their own diagnosis for Ben, but I knew in my heart long ago that Ben was probably on the autism spectrum. Even close friends and family sometimes question this diagnosis. But his teachers, nanny, and those who spend the most time with him in a number of different environments recognize that he is different from other children his age.

We are fighting with the county to get him the assistance he needs - since his symptoms and behaviors are very slight it's hard to see that he may need help. We keep hearing over and over- "Ben is bright. He's above average intelligence. He plays great with his brother and has good communication." What isn't seen in a 30 or even 60 minute evaluation is that he struggles in playing and relating with his peers, he's a little quirky, his sensory issues still exist, he gets upset when we do things out of routine, and he can have severe meltdowns or anxiety over something small (such as when our nanny showing up wearing glasses one day). I have no doubt that Ben will overcome these problems and be a healthy and happy boy once we get him the treatment he deserves.

I have been trying my best to keep busy, pushing Ben's limits by enrolling him in camps, swim lessons, tumbles, library time, etc. He was in occupational therapy (until my insurance denied it) and has Floor Time therapy from a local Social Worker. All of this in part is driving me insane but even these small strides have made a world of difference. I'm so thankful that Ben & AJ have one another - always.

While this blog has primarily been of sharing photos, videos, and an attempt at humor, I will also be focusing on the progress we will be making as a family. This will be my therapy. Thanks for sharing in our journey!


1 comment:

  1. Lisa,
    I've been so impressed with you as you've started this journey. Here is a quote from a 14 year old: "I will be alright because I have family and friends who care for me. I would not change the fact that I have autism for the world because it makes me who I am. So no matter what's going on in your life, you should know that the world is not perfect and it never will be, but there are a lot of good things that come from our world and across the universe, so live with a purpose and smile." Keep smiling that gorgeous smile, Ben!

    ReplyDelete