Our Autism Story – a Condensed Version

Let me first start by saying that autism is NOT contagious. It won’t rub off on you. And it’s nothing to be scared of. Don’t get me wrong – it isn’t all pretty roses and I’m not sure that I would have signed my kid up for it, but woven in the term autism you can find success in many different forms. For us, it’s the success of being “functional” and most of the time “blending in”. Although it seems like most people have met or know someone with autism, I have also met a LOT of people who have not met someone with autism.

The word autism means different things to different people. For ME, I kind of cringe when I hear the word autism. Why? It’s SO generalized. My son has Asperger’s and although it shares many similarities on the autism spectrum I guess I personally prefer not to say my son it autistic. When most people hear the word autistic they immediately think things like non verbal, unmanageable, non social, etc. My son is highly gifted, highly verbal, incredibly intelligent, and completely functional in a group setting. In fact (thanks to several years of therapy) MOST people that meet my son do not peg him with Asperger’s – not at first. Below is my story of our amazing son.

Our story starts when he was a baby. Everything about him just seemed “different” – but not on an autistic scale, on a highly gifted scale. My son was up and literally running across the room by 6 months old. By 11 months he had the vocabulary and sentence structure of a 3 year old…and growing. Everything with him was just done earlier and as a brand new mom I had NO idea what to think. I don’t think it had quite hit me HOW far advanced he was. But I was thankful he was a smart little guy and just a super happy kid. When he was 18 months old I took him for a normal checkup where he got his updated immunizations. What I didn’t know is that he was allergic to the Dtap vaccine he received and after a week of high fevers of 104+ he ended up having a febrile seizure (seizure due to a spike in fever) and life has never been the same since. I’m not saying that the vaccine caused his issues – they were probably always there in some form and we didn’t realize it. But I do think they probably accelerated and/or intensified it! It was just recently we realized that he was allergic to that particular vaccine when we gave him that single vaccine at his 5 year old checkup (we had chosen to separate vaccines after that) and he started back with the same high fever / withdrawing / regression issues. His teachers at preschool couldn’t believe that this smart little boy that they just loved in class was now hiding under chairs with glassy eyes in the corner. It’s the only vaccine that he has ever had an issue with. Part of me always wonders how things would be if he hadn’t had that seizure, but I am always meeting parents that are having issues with their kids and I LOVE that I can now help them.

I feel a sense of accomplishment that we survived the hard years. Don’t get me wrong – there are still issues and battles to deal with but I can’t express to you how hard it was during the 2 years after his seizure. We cried just about every day out of helplessness….out of harsh comments and disapproval from family members that saw it as a behavior problem and didn’t really believe in or understand autism….from not being able to just hug my only son because all he would do is fight….from not being “normal” enough to take our kid to the playground……from spending 4-6 hours fighting a tantrum and then collapsing exhausted as we both slept the rest of the day. I fought and fought hard to help my son – to figure out how to best help him. We sacrificed thousands of dollars and pretty much drained all of our savings taking him to therapy. (which made a HUGE difference) Even now we still have rough patches but life is much smoother now and he blends in. Most people, even doctors, don’t even realize he has Asperger’s until they really get to know him. In fact he is now even in two different grades advancing in academics like crazy (which of course will end up presenting us with new issues as he gets older!) 🙂 We’ve been fortunate to realize VERY early on what was going on and now to find the perfect school for him with small classes and teachers that are willing to be patient and work with any kinks that come up along the way. This is OUR success story. And sadly many people are not so lucky. In fact I’d venture to say most people aren’t this lucky. Early intervention was the main key for my son. I am SO thankful for all of the therapy help that my son has received, the extremely generous loving friends and teachers we have met along the way, and for my sister who always was just there when I didn’t even know what to do.

As many tears and frustrations that we’ve had over the years we’ve also had a lot of laughs, a lot of proud moments, and a lot of amazement. We’ve learned to look at life differently and be more understanding to other special needs families. To know where my son has come in just 3-4 years has been absolutely phenomenal. It’s just unfathomable except that we lived it. If you have a child with autism or Asperger’s hold your head up high and try new things. Don’t feel guilty for taking time for yourself – even if it’s just a hot bath every night. You have to take care of yourself too. Meet new people and don’t be afraid to put yourself in a bubble from family members who just “don’t get it”. Surround yourself with friends who care and keep fighting! New research is coming up ALL the time. In my most “down” times researching is what kept me going. I KNEW there had to be something better, something to just make life manageable. I’ve learned a lot this way and I wasn’t afraid to try new things. (or maybe I was just desperate?)

So I encourage those of you with autistic children or children with Asperger’s – keep your head high and keep fighting!!

To those of you who teach students with autism – get to know your student. Don’t get to know his/her autism – get to know them as a person. You’ll start to see things differently!

Do you have a story about  your child or student with autism? I’d love to hear your story!

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