Saturday, February 18, 2012

The beginning of the Autism Shenanigans…


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Nine years ago we were blessed with our first child. We had problems for 4 years trying to conceive, and so once our sweet boy was born, we spoiled him rotten! I wanted to document every second of his life, so I scrapbooked, and journaled, and took a million pictures and videos of him.
Justin was full of sweetness, and loved to tease. He also was a big flirt, and with his big brown eyes he would bat his eyelashes at anyone he came across. We also had people stopping us in public to comment on what a little flirt he was!
We moved away from home and family when he was a year old, and I was pregnant with my second child. I was put on bedrest, and as we stayed cooped up in our apartment all day I started to notice that Justin wasn’t acting like he used to. He was about 19 months old and I took him to the pediatrician and talked to him about his lack of speech. He told me this was all because he was a boy, and because he “sensed” a new sibling was coming. This was the beginning of many well-intentioned theories of why my boy didn’t have Autism that we went through for the following 2 years before we finally got an official diagnosis when right before Justin turned four.
The diagnostic appointment, that we had to wait 6 months for because of how booked the Developmental Pediatrician was, went something like this: 15 minutes of playing with my child, turning on a tape-recorder so that I wouldn’t forget anything the Doctor said, and 60 seconds after he turned on the recorder he said the words I knew were coming, but I would have paid a million dollars for him not to say, “Justin has Autism.” He followed it up with saying that he only had a moderate form and with intensive therapy he could be mainstreamed by Kindergarten. It sounded promising when he said it like that, so my husband and I (after I wiped away my tears) said, “Great! Where do we sign up for this therapy, and when can we get started?” And as if getting the diagnosis of Autism wasn’t stomach wrenching enough, the Doctor answered, “It’s called ABA (Applied Behavioral Analysis) Therapy and it costs $50,000 per year and insurance doesn’t cover it. Good luck you guys!” And that was the end of the appointment. We drove to pick up my daughter from my friend who was watching her, and I cried on her shoulder, and then cried the rest of the night.
The very next morning I got up and started making phone calls to see how we could get services for Justin. I won’t say I didn’t ever cry about Autism again, but once we finally had an answer after 2 years of trying to decide whether there was something wrong with Justin—the answer did help us move forward and start being proactive for him.
We moved to a new state that had some services covered through government programs for Autism and we began the journey of ABA therapy, speech therapy, occupational therapy, and GFCF diets.
My son is now 9 years old, and currently receives 30 hours of ABA therapy per week, and is doing well. There have been so many wonderful people who have come into our lives to bless Justin and our family. We found a wonderful Speech therapist here who diagnosed Justin with Speech Apraxia, secondary to Autism. And although we weren’t looking for any more diagnoses with Justin, again, knowing what he had helps us know how to help him best! Justin struggles to spontaneously talk to us, but when he does—the world stops and everyone cheers and it is always the sweetest moment of my day!
I know that there are a lot of parents out there raising kids with Autism, and there are a lot of different degrees of Autism Spectrum Disorders, so I decided to use this blog to also share our story about Justin to reach out to those who need support, or just to provide a triumphant moment, or funny story about living with a child with Autism.
I am not a big enough person to say that I am thankful for my trials, but I can say that I am very thankful for the lessons I learn from them, and a loving Father in Heaven who has comforted me and sustained me through the darkest of times. And Autism is at the top of that list! Justin is a blessing in our family that we couldn’t live without.
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1 comment:

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