Thursday, April 2, 2015

Autism Awareness Day: Our Story

Today, April 2, 2015 is Autism Awareness Day, and the month of April is Autism Awareness Month. Because Autism is a daily fact of our lives, we are always working to help others understand Autism, both what it is, and what it isn't. Current statistics show that 1 in 68 children have been diagnosed with an Autism Spectrum Disorder, so chances are you know several people for whom Autism is a fact of life. Autism affects everyone differently... it is a spectrum, after all... with some people facing severe challenges, such as impaired cognitive function, inability to speak, severe anxiety, seizures and more, while others have less severe challenges, and can eventually learn the necessary skills to live independently. There are also many degrees and variations between these two extremes. No one knows for sure what causes Autism, but it is speculated that there is a genetic link, as it is common for multiple family members to have autistic traits.

Noodlebug, just a few weeks old
Today, I want to share our story of Autism. I want to share in the hopes that it may help someone else who is struggling with developmental delays and Autism in their own children, and to illustrate the importance of early intervention in positive outcomes for kids on the Spectrum.

Our story began shortly after my third child was born. Within a couple of weeks, it was evident to me that there was something "different" about him. He didn't seem to make eye contact, or to really "look" at me, the way my other babies did. And while my other two kids gave me their first smiles within a few weeks of birth, Noodlebug still wasn't smiling as he approached his third month. I remember saying to his father, "What if he's Autistic?" At the time, he dismissed my question as that of a nervous mom. "He's not Autistic... he's fine."

Three months later, at his 6 month check up, I expressed my concerns to our pediatrician. Noodlebug was clearly showing signs of developmental delay. He didn't roll over until he was five months old, and that seemed a fluke, as he didn't do it again for weeks. At six months he was no where close to being able to sit up. It was determined that he had low muscle tone, and was also showing signs of potential speech delay, as he was not vocalizing as he should have been, and he frequently sat with his mouth open and his tongue out, due to low muscle tone in his face. Our pediatrician recommended an evaluation.

Noodlebug at 22 months old
We started receiving Early Intervention services by the time he was 8 months old, and over the next couple of years he did show a lot of progress. We worked with some wonderful specialists, occupational therapists and speech therapists. He got stronger, learned to walk, and by age two he had a short list of words. While it was noted that he was experiencing developmental delays, we were also told that he couldn't be Autistic, because he was a content baby who loved to be cuddled, and at that time (10 years ago) it was still commonly believed that babies with Autism were fussy and didn't like to be held. At this point, we were just dealing with the symptoms, working on keeping him progressing toward the regular milestones of early childhood, without any kind of diagnosis of WHY he was having these issues.

When he was turning 4, we hit a roadblock. He had aged out of Early Intervention (which is for up to age 3) but still needed extra help. He still struggled with gross and fine motor delays, Sensory Processing Disorder, some learning disabilities, attention issues and more. Without a diagnosis he couldn't qualify for the services he needed, and our insurance would not cover the cost of testing which would give us a definitive diagnosis. At this point, I was a struggling single mother, and could not afford to pay for the testing out of pocket. Thus began a journey of fighting with the insurance company and looking for various loopholes and such to get him what he needed. While we were working on the medical end of things, we were able to get him some OT services through the school system, for free, which was SUCH a Blessing, as it enabled him to keep getting the help he needed while we figured out the Big Picture. We spent the next year visiting with Genetic specialists, neurologists, and the folks at Children's Hospital's Center for Developmental Medicine. Finally, at Age 5, he was officially diagnosed with Autism Spectrum Disorder.

I've read about many parents going through a period of grief after receiving their child's diagnosis, but for me, it was actually a relief. We had been through so much with him, and it seemed like a positive thing to know that there was a name and a reason for why everything was so hard for him. I did have some concerns about what Autism meant for him and his future, but mostly I felt grateful, as it seemed that having a diagnosis was the key to giving us access to as much help as possible for him, and that was the most important thing, giving him what he needed to thrive.

I'm proud to report that now, at age 10, this kiddo has met and exceeded all expectations. This child who was once speech delayed now has an incredibly large vocabulary, reads well above grade level and loves to write poems and stories. This child who, at age 4.5 had the fine motor skills of a 15 month old has "graduated" from occupational therapy, and is now an accomplished artist, spending hours each day drawing pictures of cars (his favorite thing) Although he is homeschooled, he is still on an IEP and receives services through our local school. He goes to a Social Skills Group once a week, and has made great progress there, too.

Even with all the progress, he's still Autistic. There are still things that are hard for him. It doesn't seem likely that he'll ever be able to tie his shoes.  He still sometimes has trouble regulating his emotions, and he doesn't handle changes to his routine very well. Sometimes he gets really overwhelmed with things. He has trouble following two-step directions. He sometimes gets "stuck" talking on one subject (usually cars) and has trouble switching gears. And math... hoo, boy... math is really, really hard for him. But Autism has also brought many gifts, as well. He's sensitive and intuitive and his memory is just unbelievable. He pays attention to the tiniest details, and notices things that most people don't. His Autism has given him the passion to want to know anything and everything about his favorite subject, cars. He can rattle off the stats about almost any car ever made. It's pretty impressive. Most of all, he is kind and gentle and lovable. He is who he is in spite of AND because of his Autism, and I wouldn't have him any other way. I am so lucky to get to be his mom.

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