Encouragement Speaker Derrick Hayes gives an AUTISM Interview by asking six questions through each letter in the word AUTISM to give readers an insightful perspective from parents, experts, entrepreneurs, and other leaders in the field.
Jennifer Block lives in Greenville, South Carolina with David, her husband of 13 years. They have two children, Brayden (eight) and Jacksen (three). Brayden is on the autism spectrum.
A is for Awareness
When and how did you first become aware something was different?
Brayden was our first son. We were new parents. I’m not sure we saw definitive differences when we were “in it”. Looking back…he had every indicator. Brayden was developing so quickly but just after a year old he no longer tried
to speak. He wouldn’t look us in the face and would not respond when his name was called.
I couldn’t take him to the store without a complete and utter meltdown, and I never understood it. He was super picky about his foods and wouldn’t try anything. I was told over and over by the pediatrician that he was so advanced physically (as in running at nine months!) that his verbal and emotional abilities would catch up and that he was just “all boy”.
U is for Unique
How has this experience been Unique for you and your child?
Every relationship a parent has with a child is unique. Each has quirks and sweet idiosyncrasies. Brayden is our son…he is sweet, simple, kind, loving, funny, and smart; he loves water slides and trains and hates haircuts and waiting for anything! He also needs routine, safety, his comfort foods, and grace.
It’s a unique experience because we’ve been blessed with a child who doesn’t have a care about what the world thinks of him and sees the world through an unbiased, nonjudgmental point of view. I’ve learned far more valuable lessons from him in eight years than he will ever learn from me!
T is for Tools
What tools do you have now that were not there in the beginning that could help other
Honestly, we surrounded ourselves with the best people. Despite the mountains of paperwork and working our way through the “system,” we were able to navigate pretty seamlessly through those early days with the guidance of some amazing early interventionalists. There will forever be the frustration of waitlists and money struggles.
At this point, I’ve come to understand that it is your rite of passage, as if the million appointments, exams, forms, and the final diagnosis aren’t enough already! My biggest advice is to keep calling, keep advocating, and make sure everyone knows your name and what you want. Once you are satisfied with where you are, keep challenging and keep your eyes open for new opportunities.
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I is for Inspire
As a parent, when you look at your child, what inspires you?
The tenacity and patience Brayden possesses inspire me beyond all else. He has been in therapy since he was two and a half years old. He works every day, five days a week, year-round with little understanding of how far he has come or how bright his future burns. He puts in hours longer than most adults’ workday and does so with joy and laughter and never questions it.
He has no filters and wears big dark circles under his eyes at the end of the day. He takes it all in all at once twenty-four seven. He struggles with sleep issues and sleeps very little some nights but gets up each morning and is ready to go…He is strong and resilient and redundancy is a strength for him. He fights each day for his future.
S is for Support
Are there things you struggle with or have struggled with and what types of support do you still need?
The thing about autism is that you don’t see it coming. You don’t get to prepare for it and you can’t “recover” from it. It comes out of nowhere and strips away a future you’d imagined for both your child and for yourself as a parent. The diagnosis is dropped on you without any advice or direction. A big black checkmark in a checkbox on a piece of paper and an “It’s too bad,” from the psychologist. I felt helpless and lost.
We jumped into “super parent” mode and spent so much time trying to research autism, find funding, set up therapies, and rearrange our lives…no one tended to us. No one ever asked if we were okay or how we felt or what support we needed. We didn’t know we needed support—just that we could no longer find common ground with our friends with typical children and that no one understood what was happening in our hearts and minds. It is a very lonely and isolating island.
M is for Manage
What keys to success can you leave with parents so they can better manage their day to day efforts?
Day to day is just that…one day at a time. One bad day isn’t an indicator or going to break a future. Sometimes it is one minute or one second at a time. With a child with autism, you learn to live in the moment. Take the moment to feel the wind, slow down, and stomp a puddle…turn the car around to follow the train for a bit! Schedules, matching clothes, eating the right foods…discover what is essential and important in your world.
We suddenly discovered what was once deemed important can become completely irrelevant for a few moments. It’s important to make sure my son feels heard, loved, and that he can navigate a world that isn’t made for him…if that means we are a few minutes late with wet feet…so be it! In time the rest will come.
It’s a blessing to watch your children and to learn from them. They have their own unique ways of doing things, learning things, and expressing themselves. We have learned to stop and celebrate every success no matter how small…because in our world it is all a BIG DEAL!!! See the beauty in your child’s naivety and try to see things through his/her eyes. Find your child’s strengths and joys and play into those.
This article was featured in Issue 109 – Attaining Good Health.