From Parent to Advocate
Emily Kreifels is the mother/blogger (http://em5il2y7.com/just-for-jackson/)
of a 7-year-old boy on the Autism Spectrum.
Having a child with Autism is never easy; they require much more attention and care than “typical” child. As a parent, you need to watchful, understanding, and above all have the patience of Saint. It’s important to remember that many of behaviors that are exhibited are uncontrollable and every success needs more praise than a winning super bowl team.
My husband and I were just 17 years old when our beautiful son, Jackson, was born in 2005. Parenting was not the easiest job to take on when you have to finish High School and still start college… but it was a chance for us to rise to the challenge. We had dreams of our son becoming a big hockey star since my husband’s family has had their children on skates since they could all walk. We loved being able to take him places like the zoo, we were the fun parents that let our toddler play in the water fountains when it was too hot and all the other kids watched him jealously. Unfortunately, we also spent most of the time still in school and working, so our son was left with my mom who raised 3 girls and was under the impression that sons develop slower than daughters (which is many cases is true). Because of this, I feel like we missed a lot of “warning signs (http://www.autismspeaks.org/what-autism/learn-signs)” of Autism.
For Jackson, it took years of unexplained tantrums that lead to countless ER trips for CT scans and MRIs for our young son, thousands of hours online researching, and appointments with every type of specialist throughout New Jersey to rule out any problems other than Autism. When our son was diagnosed on December 17th, 2009, we knew that we could no longer just be the fun parents; we had to grow up and be the responsible ones first.
When you are a very young parent and approach specialists with your concerns and goals for your child, they often do not take you seriously. I experienced a lot of belittling from a certain doctor who pretty much told me that I had no idea what I was taking about. That is when we reached out to Autism Speaks of Southern New Jersey, they taught us how to go from being just parents, to autism advocates (http://em5il2y7.com/2012/12/20/seeking-donations/) and I now handle PR for South Jersey’s Chapter. We now have the knowledge to treat Jackson’s “Autism” to help him grow up to be a successful child, teenager, and adult. Having Autism does not mean he is limited, it means he needs to learn different skills to help achieve success.
We learned that when he started “stemming” with his hands flapping or his eyes blinking receptively every 30 seconds it meant that he was bored and we needed to think of new things to entertain him… he is very advanced for his age so we now have an iPad with us at all times along with books that range in subject from the Titanic to Hurricanes. When he had a tantrum, we had to immediately remove anything from his bedroom that he could potentially hurt himself with like his dresser, any hard plastic toy, even his Thomas train tracks would need to be removed the moment we heard his crying start.
We also had to put together something like a “Jackson Manual” for when we needed someone to watch him for us (it also comes in handy when you are running out the door with an emergency responder), a detailed list of his behaviors and what each one meant and how to avoid meltdowns. We went from being fun carefree parents to fun within limits parents… something that to this day, my family mocks me for. Both my husband and I now carry a list of Jackson’s medications and various specialists in our iPhones and have showed Jackson how to access this information. The “manual” is also a document that we can access from our phones as well, Thank You Apple! We made it a point to make sure he learned his phone number, how to spell his name, and his address by making them into songs which were easier for him to remember… we are very fortunate to have a verbal child with Autism.
We have a long road ahead of us, but fortunately we are well on our way… and looking forward to the future, but love living our lives one day at a time.