Going Above and Beyond

A parent always wonders what their child is going to be like when he or she is born. What color hair will they have? What color will their eyes be?  Whose smile they will inherit? As a parent, you wonder for nine long months until that moment… that moment when that bundle of joy enters your world. In that split second nothing else matters. From that moment on you finally realized what love is really all about.

My son Dylan will be three this March. Since he was born, he’s always had his own agenda. It was his way or the highway. Dylan crawled early, he walked early, and he even babbled early.  I remember his grandmother always said, “He is going to be an early talker!” And that’s when the silence began.

At Dylan’s one year check up, I told his pediatrician that I was very concerned about Dylan’s speech. She referred me to Early Intervention to see if he would qualify for speech services. About a month later, Dylan was evaluated and it was determined he had speech and other delays as well as sensory needs. He was then enrolled once a week in speech and occupational therapy. Months went by and I noticed Dylan was not making that much progress. His speech was still delayed, he was still seeking sensory input and now his behavior was changing. He started screeching because he did not like to be touched.  His eye contact was growing worse, and he wouldn’t acknowledge when you called his name. So back to the doctors I went, telling his pediatrician that I wanted to get Dylan’s hearing checked just in case. Maybe it was his hearing, but deep down I knew there was more to the picture. A mother always knows.

Well, Dylan got his hearing checked and the doctor said his hearing was perfectly fine. Around that time was his re-evaluation for Early Intervention. Dylan was tested again and showed even more delays than before.  I knew I needed to take the next step, I just didn’t want to hear the outcome. I kept saying to myself, “He’s fine, it’s just a phase, he’ll grow out of it.” But in my gut I knew… I couldn’t keep lying to myself. The more I wait, the worse it will get.

I called up the children’s hospital to receive the paperwork to get the process started, and I contacted my son’s doctors office to make them aware I was getting Dylan evaluated.  The head doctor was also a child developmental specialist and he wanted to evaluate Dylan himself before taking the other steps. At the end of the evaluation, he told us he believed Dylan had anxiety. I thought to myself that it didn’t seem right.  Why the speech delay? Why the constant screeching and repetition? Still, I wanted answers.

After several months, I finally got an appointment for Dylan to be evaluated at the hospital. The appointment was long, the questions were very in depth and Dylan was all over the place.  Finally the evaluation was finished and the doctors told us to come back that following Wednesday for the results. Wednesday came and Dylan’s grandmother and I went to the hospital. Sitting in the little conference room, my heart was racing. The doctor went over the whole test, what they saw, how Dylan acted etc, etc. As the doctor read off her notes, my mind started to wander. I kept saying to myself, “I understand why you are doing these tests! I just want to know what is wrong with my son!”

But, just as both our eyes made contact, I heard the words, “your son has autism.” My stomach dropped. I started to cry.  Thinking it is one thing, but actually hearing someone say it makes it real. She then told us the different types of services she wanted Dylan to receive (such as ABA) to help with his behavior, more speech and OT. And to have him enrolled in about 15 hours a week of services.

Leaving that appointment I knew the first thing I was going to do was go on the computer and look up as much information I could about autism. I kept telling myself, “My son deserves all the services he can get.  I will go above and beyond for my son to get whatever he needs to succeed.”

Article after article, website after website, research study after research study, finally I came across an article about children with autism using iPads to communicate. As I read on, I saw that there are at least three dozen apps that are designed for children with autism, including ones for music and reading.  Even the device itself supports spoken text. I contacted my son’s speech therapist and she told me that there are some organizations that will help children with autism get an iPad. There was one in particular that I could find on the Autism Society’s website called  The Puzzling Piece.

So I went online and started reading how to win an iPad. By selling 60 puzzle pieces (i.e. necklace, keychain, etc) I would win an iPad. I realized, not only would people who bought a piece be helping an amazing cause, but my son could get this amazing tool to help him speak more and even help him when he can’t tell us what he wants or needs. I quickly wrote an email to Melissa, founder of The Puzzling Piece, and instantly got an email back explaining what I had to do, pictures of her products and different types of ways to get it out there. I was so excited! It was a brand new journey I was about to embark on.

I had to be creative. I made a Facebook event called The Puzzling Piece Challenge for Dylan and sent it out to just family and close friends. It was a huge hit. By day three, Melissa called me telling me I was a “rock star!”  She explained that Dylan already had 34 pieces bought and she couldn’t believe it!

The Puzzling Piece Challenge for Dylan on Facebook

I was in total shock. She kept saying “You’ll have this iPad in no time, I can feel it, just keep up the good work!” Well it didn’t stop there.  Friends, classmates and family members were spreading the word to co-workers, other family friends and other friends. These pieces were being bought like crazy! But by the third week we were in a rut. Finally, my close friend Ryan called me and told me to make the Facebook event into an Evite, an online invitation that sends you a link that can be shared in an email, text or even on Twitter. Well, my friend Ryan and her friend decided to go on Twitter and “tweet” all of these actors, actresses, singers, news broadcasters, journalists, and radio stations about Dylan’s event. We had Jamie Lynn Spears ( Brittany Spear’s sister) Adam Bouska (founder of the NOH8 Campaign) Randy Houska, reporter Carina Mackenzie, Meghan Nelson, and more people spreading the word! I had complete strangers telling their family and friends about Dylan’s Challenge and buying pieces. It was so unreal!

Finally, on February 16, I got a phone call from Melissa telingl me I only had four more pieces to go. She said Dylan WOULD have his iPad today, no if’s ands or buts. Those last four were bought in less than 15 minutes…finally Dylan won his iPad! I honestly could not believe it. After receiving the phone call that Dylan won, my friend Ryan then told me that TV stars Gabi and Dani Victor will be hosting a benefit in March in honor of Dylan for children with autism.

It is just remarkable how many amazing and thoughtful people that are out there, that are willing to help in any way. Dylan and I have a long journey ahead of us, but it will be an amazing one.  He is my inspiration and he has made me, as his mother, a better person than I ever was. He has made me see what life is really all about.

Melissa Winter

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