My Autism Story: Ali's Son Simon Is on the Spectrum
While there are challenges in their daily life, Ali says, "We also do a lot of celebrating. We celebrate [Simon's] successes and his individuality and little things in our everyday lives that are meaningful to each person in our family."
Ali describes herself as being an "advocate for not making things more complicated than they need to be and embracing imperfection." Read on to see how this philosophy can really work in parenting too.
Please tell us a little bit about you and your family ... include your first name, ages of your kids, location, marital status, and anything else you're comfortable sharing and that will help us get to know you.
My name is Ali Edwards. My husband and I live with our two children, Simon (age 8) and Anna (1), in Oregon.
Simon was diagnosed with autism. How old was he when you first suspected he might have autism? What were those initial signs?
Simon's first official diagnosis came at age 3.
We began the early intervention process at his 2-year appointment when we expressed concerns to our pediatrician that his language didn't seem to be developing "normally." He wasn't adding any words together to form phrases. He had learned and then lost some words (they'd literally disappear from his vocabulary). He had many single words, but they were fairly difficult to understand. At that point, we suspected something along the lines of speech apraxia and asked the pediatrician for a referral to early intervention for speech therapy. Autism wasn't on our radar at his 2-year appointment.
Our doctor felt it was likely that he was just developing later as many boys do. She did listen to us and gave us the referral to early intervention to begin an evaluation process to see if he'd qualify for services.
There are many waiting periods during these initial evaluations.
During those waiting periods, waiting for one appointment or the next, there were many discussions and many Internet searches. Apraxia, speech delays, and autism kept popping up as something related. It was also during this time that Chris's mom saw something on TV about autism and mentioned it to Chris. We began doing a bit more research and could see some similarities, but many characteristics didn’t feel like they fit him.
We were initially called by an Early Intervention representative for a phone screening. Based on my answers to their questions, they decide if they should schedule an in-person evaluation.
An evaluator then came to our house and did an evaluation on him. During this same time period, we had called and got on the waiting list for an evaluation at the Child Development Research Center (CDRC). We waited approximately six months for that appointment.
Simon received both an education and a medical autism diagnosis (a full team including a developmental pediatrician, child psychologist, audiologist, speech pathologist, occupational therapist, and physical therapist). The education diagnosis, through our local Early Intervention, qualified him for services in our school district and in an Early Education Program (preschool). For us, having an official diagnosis has meant that Simon has been receiving services that have definitely helped him grow and develop. The Early Intervention diagnosis included the benefit of home visits from an Autism Specialist -- we found that to be one of the biggest helps in that we were able to ask her specific questions on how to deal with the issues we were facing at the moment. Her expertise was invaluable.
Looking back, there were other signs -- lining things up meticulously, food issues, sensitivities to light, touch, and sound, issues with transitions. We learned so much after the fact. As first-time parents, everything was new to us, and for us, it was all part of our normal. Having a second baby now and looking back (with more knowledge, understanding, and experience), it’s pretty clear to us that these issues started in the beginning for him.
Simon is now in second grade and spends most of his school day in a mainstream classroom. The elementary school he attends has a fantastic autism program for high-functioning kids that begins with more intensive services in kindergarten and progresses to more inclusion each year. He has an aide in his classroom (definitely still needed) who works with him and two other boys. He begins his day with his social group class (kids in the autism program) where they focus on developing social skills and positive behaviors.
He gets additional help weekly in speech (one of his biggest delays and challenges).
In those first moments when you found out the initial diagnosis, how did you react? And how did that reaction change over time?
I think by the time the diagnosis came, we already knew what it was. Even so, it's still hard to hear. I vividly remember walking out of the Child Development Research Center at the University of Oregon with Chris, Simon walking ahead and super-happy to be done with the day, saying, “Okay, here we go. Let’s head to the bookstore.”
I think that night Chris and I cried together and then we started moving forward.
He was the same awesome kid before the diagnosis and after.
You can read my post about Simon's first diagnosis.
These days we're continually adapting our approaches with Simon to meet his needs. Sometimes it’s social issues, sometimes it’s homework, sometimes it’s food issues, etc. We also do a lot of celebrating. We celebrate his successes and his individuality and little things in our everyday lives that are meaningful to each person in our family.
What's your son's exact diagnosis? And what does that diagnosis mean in laymen terms?
His first diagnosis was “probable autism spectrum disorder” because he wouldn’t complete all the tests. At his follow-up a few years later, it was confirmed Autism Spectrum Disorder. You can read about Simon's second evaluation.
What are three things you wish someone would've told you about autism that you had to learn on your own?
I'm not sure there’s anything. Part of the process of coping and growing for us was learning things as we went along. Every child with autism is so different.
I do think one of the biggest things to know is that you really do need to become an advocate for your child. You need to be in contact with the teachers and the aides -- communication between all the parties is such a big part of this experience.
There were lots of things we needed to try out for ourselves -- biomedical interventions, the Gluten-Free, Casein-Free (GFCF) diet, educational approaches -- before settling into our own routines that fit Simon and our family.
What or who has been your greatest resource for information and support during this time?
Our greatest local resource has been EC Cares (the local early intervention group), EEP (Early Education Program -- where Simon attended preschool), and the teachers and aides he's had in elementary school. We've been lucky to have really great support from each of these groups that have really made a difference. Everyone has approached working with Simon from a very positive place -- we've felt a part of a community tha's really supportive of him and of us as parents.
TACA, Talk About Curing Autism Now, has always been a great go-to site for information. I found it especially useful in the beginning and for help with the GFCF diet.
In the beginning, I read quite a few books, but after awhile, it really became too much information. I wanted to just focus on life with Simon ... being thankful for him and the person he is and work toward helping him be successful in whatever will be meaningful for him. I found that putting down the books lifted a weight off my shoulders.
I've also enjoyed a Special Needs Parenting message board on Mothering.com from time to time.
What’s been the most challenging part of dealing with autism?
I think any parent faces challenges with their kids. Figuring out the best ways to support your child, whether they have special needs or not is quite a challenge and takes energy, consistency, and a willingness to try different things when the “normal” way doesn’t work.
I think one of the biggest challenges for us is the emotional one of focusing on the present and not worrying about the future. We try pretty hard to keep our focus on how we can help him and work with him today.
As he gets older, the challenges are changing and becoming more social-related in terms of how he interacts (or doesn’t) with his peers.
Tell us something that makes Simon special or unique.
One teacher a few years ago described Simon as having a sparkle. That’s really a perfect description of him.
He’s an amazing kid. He loves Legos and adores his baby sister. He's sensitive and likes to be first in line. Traveling on airplanes and going on vacation or visiting his grandparents at the beach are some of his favorite things.
I can't imagine my life without him in it. He has absolutely made me a better person.
Finally ... the debate around the cause(s) of autism is very heated right now. What do you think causes autism?
I really have no idea. My best un-scientific guess is something environmental.
To be honest, I'm more interested in celebrating and embracing the person Simon is -- helping him to be the best “Simon” he can be -- rather than spending too much time questioning the how or why.
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