To All Autism Parents

This is for all autism parents who’ve once heard “your child has autism.”

This comment from my experiences has came with different emotions for different people. Sadness of the uncertainty…Happiness about finally knowing what the diagnosis was… And often a neutral look where I cannot see any expression.

To All Autism Parents

Over the years I’ve been contacted by thousands of parents asking for advice about their child’s autism diagnosis based on my experiences navigating the world growing up on the autism spectrum. During those times there have been many of these emotions I’ve seen from parent.

I was thinking about this recently when a mom reached out to me online telling me that her child was just diagnosed with autism. I asked her some preliminary questions such as “When were they diagnosed” and the follow up hit me when she said “my 2-year-old was diagnosed with autism today.”

This was one of the first times I ever talked to a parent the actual day of their child’s diagnosis. She told me more about how she was feeling right now. How her heart was breaking for her child. How she had seen signs for so long and how it had finally become confirmed.

Then she said I inspired her and I honestly didn’t know what to say. For her to contact me had left me at a loss for words. I took a few minutes to compose myself before following up. I than wrote this letter to the mom saying…

“Thank you for your kind words. Remember that you are never alone in this community and there are so many people who you can rely on. Many of them will have already walked similar roads to yours. Lean on these people. Listen to their stories and most importantly, cherish each and every single day that you have with your child. We are learning more about autism everyday to provide them with supports to see them progress.

I know today may have left you with so many different emotions. My parents had those same feelings when I was diagnosed with autism when I was 4. But my parents were able to get through that day and so will you. You will become a champion for your child and their greatest advocate they will ever have. I wish you nothing but the best for you and your child in the future.

Your friend, Kerry 

 

She followed up hours later with gratitude and saying that she would look into the Tool Kit. To this day I’ve been thankful to this mom for sharing her story with me. Stories like hers is why I’m an advocate today. For those other parents out there whose child is diagnosed I hope this message I shared will be helpful for you as well. If I can ever be a resource you can message me on my Facebook Fan Page here.

My hope by sharing my successes and challenges on the spectrum is that I can provide our community with resources that they can use to help their children. That’s one of my hopes that won’t be changing anytime soon.

Kerry Magro is an award winning national speaker and best-selling author. Kerry has become a rolemodel in the disabled community. Non-verbal at 2.5 and diagnosed with autism at 4, Kerry has overcame countless obstacles to get to where he is today. A recent Masters graduate from Seton Hall University, he currently is CEO and Founder of KFM Making a Difference, a non-profit corporation focused on disability advocacy and housing.

 Today Kerry travels the country sharing his story and telling our society to define their lives and their dreams in the best way they can. Of his highlights include publishing 2 best-selling books (Defining Autism From The Heart and Autism and Falling in Love) and working on the 2012 Motion Picture Joyful Noise. Kerry currently resides in New Jersey and works in New York as the Social Media Coordinator for Autism Speaks.

The Truth About Having A Sibling With Autism

Here’s the truth about having a sibling with autism. When we were younger, I tried so hard to reach out to my brother, but he seemed to reject me. I would try to play with him, and he would either push me away or run away. It was frustrating. I knew my brother had a disability, but I didn’t really understand the different characteristics of autism. I couldn’t understand why if I showed him how to catch a ball, he would just let it hit him or drop to the floor. He wouldn’t look at me when I called his name. He wouldn’t even stay in one place to figure out how to play the game. Whatever was going on in his own head was much more fun than his big sister, and it ticked me off.

Things are really different now. I’m much more educated about autism. I understand that individuals with ASD have communication deficits. The disability also makes it difficult for people to learn social skills. Observational learning is something that isn’t instinctive, but has to be taught. There’s also a piece to the disability where people are really rigid in their behaviors. They might engage in repetitive behaviors and that’s much more motivating for them to do than interact with others. It’s just the disability. Everyone has different manifestations of these traits, and to varying degrees with different combinations. They often say, “If you met one person with autism, you met one person with autism.” It’s so true.

The Truth About Having A Sibling With Autism

The Truth About Having A Sibling With Autism

Deborah with her brother and worship band.

In our mid and late twenties, my brother and I hang out much more. We even hang out with other people. This took over twenty years to develop. I don’t want to paint a picture that my brother and I had only painful memories in our childhood, because we didn’t. It’s just now, we have a much more interactive relationship. Not only with me, but with others. As you can see in the pictures above, my brother is just one of the gang.

This is us hanging out at a cafe after a band practice. My boyfriend and I are part of a church worship band. My brother comes to our practices and listens to us. He loves music, and live music amplifies the experience. He often paces the room, and listens to us sing. Afterwards, we often all go out to eat and hang. When we hang, my brother is just part of the gang. He’s just as much a goofball as our friends are, and fortunately, they all treat him like one of the gang. I can’t say how much it means to me that we can hang out with friends together. It’s not always picture perfect, but this night definitely was.

How did we get here?

  1. On my end, the more I understood about the disability, it made me realize he wasn’t being a jerk. There are things you have to teach him, such as looking at your eyes. Now he does that really well.
  2. It helps being a practitioner in the special education field. I’ve encountered some learners who never learn a new skill and some learn really fast. Everyone is different. It’s not lessening your expectations, but understanding that he may or may not acquire the new skill you just taught him. For example, even after 26 years, the man still does not catch a ball outside of his periphery. At this point, as long as he doesn’t let a ball hit him in the face, I’m OK with him and his hand eye coordination. That doesn’t mean I don’t play catch with him or try, but it just doesn’t discourage me or bum me out.
  3. I realized real quick that my attitude towards my brother affects how everyone else treats him. I’ve had strangers and acquaintances give weird or concerned looks towards us. Even now, I get that from time to time. Whatever. I love this man, who is my brother. Just let the love shine!

To any families out there… Be brave! Have hope! Press on!

 

We’re incredibly honored to publish this guest post by Deborah Chang, an autism blogger. Visit Deborah’s blog here. If you’re interested in submitting a guest post for our blog, please email elizabeth@difflearn.com for more info.