Tuesday, April 12, 2011

interview with a cool mama

In honor of April being Autism Awareness Month, I have interviewed a very special friend of mine. We met when our oldest boys were in occupational therapy together. Both of our oldest boys have Asperger's Syndrome. Her youngest son received an autism diagnosis not too long ago. She is an amazing mom and has gone the true distance to do everything possible to help her boys. Here's Lexi:


What are your children's names and ages? Dylan-7, Taylor-3

At what age were your children diagnosed?Dylan-4 (Aspergers), Taylor-2 (Autism)

What were each child's symptoms? We first knew something was different with Dylan from a sensory standpoint. He had extreme tactile issues: wouldn't touch sand or grass, unexpected touch elicited a fight response, haircuts were dreadful and so was nail cutting. We also noticed that he had an EXTREMELY difficult time in social situations. Although he is very bright he simply could not navigate social situations succesfully. He had poor play skills, couldn't identify how others felt, and would seek out contact by bumping, pushing and hitting other kids. As he got to be preschool age, he had no friends, poor fine and gross motor skills, was becoming increasingly rigid, lined up toys, and became more difficult to manage at home.

Having Taylor after Dylan's Aspergers diagnosis, we were more aware of the signs and symptoms of autism the second time around. That being said, it wasn't until his 18 month checkup that our pediatrician suggested an evaluation with For OC Kids and getting in contact with Regional Center. By 12 months, Taylor had much better gross motor skills than Dylan had at that age. However, he wasn't babbling and didn't seek either Pat or I out for interaction. I figured it was stilll early so we waited to see what happened over the next 6 months. My 18 months, he wasn't babbling, had only 3 words which he rarely used, wasn't playing with anything, and didn't seek interaction and enjoyment from those around him. He wandered a TON and never seemed to take interest in his surroundings.

What was the evaluation process like? We had Dylan evaluated with Dr. Iverson right after he turned 4. It was a thorough, 8 session evaluation that involved meeting with Pat and I alone, meeting Dylan with us there, seeing Dylan alone in her office and watching him out in the community. At the end, she told us she was absolutely certain that he had Aspergers Syndrome and gave us suggestions of what we should do from there.

Taylor was evaluated at 19 months at For OC Kids Neurodevelopmental Center by a developemtal pediatrician. She observed him, spoke with me, and had me complete several tests. She informed me that he had a failed an autism screening called the M-CHAT which screens for autism in toddlers. At that time I was told that they don't diagnose autism before age 2 and she asked us to come back to have an ADOS test at age 2. The ADOS (autism diagnostic observation scale) is considered the gold standard for autism testing and is administered by a physician over a period of an hour. The doctor sets up multiple different play and social scenarios and observes for autistic traits. I left that test knowing Taylor had not done well and went back to follow up with the developmental pediatrician several weeks after. She informed me that Taylor had met the scoring criteria for a diagnosis of autism and suggested we start a structured autism preschool program immediately.

What therapies do you have in place? Both boys have services both privately and through the school district. Pat and I pay for social skills programs twice weekly for both boys as well as occupational therapy to address sensory and motor issues. Dylan still receives alot through the district.....he currently gets OT once a week, speech twice a week to address pragmatics and articulation, social skills training, and he has a 1:1 aide for all unstructured times of the day like lunch and recesses. Taylor is in a special day class preschool funded through the district that is for children with higher functioning autism and other disabilities.

Has there been one particular therapy/intervention or combination of interventions which have been most beneficial for them? For Dylan, the social skills training he receives twice weekly has been a crucial part of his success. He has blossomed under their guidance! They are helping him learn to navigate a constantly changing social world...

For Taylor, I think that early intervention was key. By 19 months he had speech, OT and an in-home ABA program going 10 hours a week to work on his areas of delay. From ages 2-3, he attended a structured autism preschool 20 hours a week funded through the regional center which helped work on the social and play components. In the past couple of weeks we have really seen the light start to turn on for him. He's starting to play with toys, is actively aware of those around him, and is as curious and mischevious as ever!

What do you think is the biggest misconception about autism? Despite the prevalence of autism and the fact that it is on the rise, so many people in my community have such poor understandings of what autism really is. While it would never be admitted to, they treat autism as if it were the flu, as if their children will catch it by playing with mine. Some people literally back up from my kids if they get close, I'm sure it's an unconcious response, but that's still a problem.We aren't invited to birthday parties and most playdates are with other kids who are on the spectrum. Autism doesn't have to mean a child is non-verbal, handflapping, and unable to form any close connections with others. That's certainly a portion of those diagnosed. There is also a large portion of children diagnosed with forms of autism who are brilliant. There are autistic children like mine who want friends, want to play and engage with others, they just don't know how. People think my kids make a choice, as if they have control over their behaviors and compulsions and choose to be difficult. "Why can't he just stop?" they ask. Trust me, it's as frustrating for my boys as it is for those around them. They don't want to have compulsions and behaviors that make it difficult to fit in, but autism doesn't turn off just because you want it to.

What has been your biggest struggle as a parent with children on the autism spectrum? By far, the biggest struggle as their mom has been watching the struggle they have across most social situations. More specifically, Dylan wants so badly to have friends. While he's still unsure what exactly a friend is and he has many troubles identifying whether a child is or is not acting friendly he craves that acceptance and sense of belonging. Watching him sit by himself, not welcomed by the boys in his class and unsure about who else he could approach is painful. Knowing that he is smart enough to understand that he doesn't quite fit in and watching him struggle with understanding why is something I wish upon no one.

What are your biggest hopes for you boys? Really, most of my hopes are no different for my children then most parents have for theirs. I want them to have a friend, to feel loved and secure in who they are, to know that they can do anything they put their minds to if they are willing to work for it. I do have a few hopes that many parents may not have to worry about as much....I hope that my sons are able to find their nitch when they are grown, that they are able to live on their own one day, balance their checkbooks, remember that they need to eat and pay their bills, find a partner who loves them for who they are (quirks and all). And if parts of that don't happen, I hope my boys know that they will ALWAYS, always have a place in our home. No questions asked, no matter what the world throws at them we will always love them for exactly who they are.

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