>> AUTISM AWARENESS MONTH: This special cookie is available for one week only, and all proceeds will go to Dayton Children’s
Today is World Autism Awareness Day and April is Autism Awareness Month, and there is no better time to pause and reflect on my personal journey with this complicated, widely misunderstood disorder.
My son, Max, was diagnosed with an autism spectrum disorder more than nine years ago. Pervasive Developmental Disorder Not Otherwise Specified is the clinical diagnosis. Whatever that means, right?
I will never forget that moment sitting in the exam room at Dayton Children’s when the doctor re-entered the room after a lengthy, grueling exam.
That doctor didn’t even have to say a word.
I burst into tears the second she looked at me. The truth is, she was just confirming what I already knew.
But to hear those words a few seconds later…
“Your son has autism.”
My life was forever changed in that single moment.
Since that moment, life’s been quite a journey with many highs and lows, joys and frustrations, hopes and fears, laughter and tears.
Here are some of the many life lessons autism has taught me so far. I hope to share these lessons with others who share this journey or are just beginning this journey.
Lesson 1: Know that life isn’t always fair
After Max's diagnosis, I went through the typical stages of grief. Why my sweet child? Why me? How could this possibly happen? Where did I go wrong? Is this my fault? How will I ever get through this? How will I juggle it all?
It’s heartbreaking to watch your child struggle. If you’ve never had to experience this feeling, count your blessings! When my husband and I began our journey as autism parents, every single little thing felt like a battle, from making simple everyday choices without meltdowns to navigating large, overwhelming family functions to sensory overload just about everywhere we went.
Max was overwhelmed. I was overwhelmed. I was lost.
The girl who always had all of the answers didn’t have the answer to this problem.
There was no one-size-fits all solution. Every autism diagnosis is different. If you’ve met one kid with autism, well, you’ve met one kid with autism. You have to discover the right solution for your child, and that’s way easier said than done.
The truth is I had no idea what was best for my child. Should I be giving him B12 injections? What the heck is this alphabet soup of therapy options — ABA, VB, PRT, DTT, ESDM — and which one is right for Max? Do I really need to completely change his diet to eliminate gluten, casein and artificial flavors? Where should we send him to school? What do you mean insurance doesn't cover this stuff? How in the world are we going to afford all of this?
Yes, life isn’t always fair. But we have no choice but to rise to the challenge.
Lesson 2: Update those life plans
Raising a special-needs child certainly wasn’t part of my life plan. I had practically everything mapped out, from career, to motherhood, to what I had hoped and dreamed my children would accomplish.
I had mapped out my career ladder and was working hard at the time to make the climb. I had mapped out our plan from moving from cozy starter home to dream home complete with wrap-around porch, huge backyard and luxury basement fit for entertaining dozens. I had mapped out our plan to have three children all three years apart. I had mapped out my plans for them to work hard, be kind, set ambitious goals, achieve said goals and serve as examples for others.
I very quickly learned that life plans are meant to evolve. Cozy starter home that we have long outgrown just might be a keeper. Two children are way better than three. I may not be in the position at work I once dreamed of, but I couldn’t be happier with where I’ve landed.
But my plans for my children still hold true. I've just had to adjust my expectations and definition of success in order to help my gifted daughter and my autistic son reach their individual fullest potential. My two children have very different but equally important needs from their mom, and I have had to figure out how to be the best mom I could possibly be for both of my children.
Lesson 3: Realize everything happens for a reason
Autism happened to Max for a reason. Autism happened to me for a reason.
After a few weeks of crying, feeling sorry for myself and isolating myself from the world, I snapped in. I had no other choice.
I needed to recognize my purpose, which was to help this amazing little boy accomplish everything the world says he probably can’t.
At the time of diagnosis at age 2, he had no voice or way to communicate with us. I had to be his voice. I made it my life mission to very quickly find out all of the answers to all of the questions and build a support team and a plan.
Lesson 4: Know when to ask for help
When there’s a problem you simply can’t solve, you have to find the people who can help you solve it.
I’m so glad I learned this lesson early in our journey. I can be a little stubborn and try to do everything on my own sometimes (OK a lot of the time), so this was/is a valuable lesson for me.
To me, asking for help was a sign of weakness.
But I’ve learned, it’s the opposite.
Over the last nine years, we have assembled a support team of family, friends, teachers and autism professionals who have helped Max accomplish things quite honestly his biggest cheerleader never knew for certain that he could accomplish.
This team of wonderful, amazing people has made all of the difference for our little boy. He attended autism treatment centers and was
We still face struggles every day, but Max’s progress has been nothing short of a miracle and has exceeded all of my expectations.
But it took hard work and sacrifice by so many to get there.
Lesson 5: Celebrate all of the small victories
The thing with autism I have found the most challenging is the great unknown.
Will he ever talk? Will he ever be able to go to a traditional school? Will he ever be able to make friends? Will he ever be able to go to college? Will he ever be able to live on his own?
When you are faced with big questions and uncertainty every day, you really learn to appreciate the little moments and the small victories. The truth is, you may not ever have the big victories you once dreamed of. There’s no crystal ball …
So yes, we have clapped and cheered and cried some happy tears for just about everything from first request by sign language, to first day at preschool without mom and dad by his side, to first words at age 4, to the first day of kindergarten in a traditional classroom in a public school, to making it to first base with an ear-to-ear grin even though he didn’t really hit the ball, to competing in the school spelling bee, to reading an award-winning D.A.R.E. essay about life with autism in front of the entire fifth grade.
Small victories can be big victories.
Lesson 6: Love unconditionally, hope infinitely
I’ve always been a very patient person. But I had to become more patient. With autism, patience is crucial.
I’ve always been an optimistic person. But I had to become more optimistic. With autism, a positive outlook is essential.
I’ve always had a big heart and lots of love to give. With autism, there’s no better therapy than unconditional love.
It’s easy to get tangled in the web of uncertainty. It’s easy to feel overwhelmed and to sometimes shut down because of it.
But somehow, you have to keep fighting through the rough spots and never lose hope.
Lesson 7: Autism can be a blessing
Max challenges me every single day to be a better mom, a better person.
He’s taught me to spot that teeny tiny ray of light in times of gloom. He’s taught me how to truly appreciate life’s little moments and simple joys. His smile can light up a room. His belly laugh is contagious. His heart is pure.
When life knocks me down again and again, my children are my inspiration to get back up.
Motherhood has been life’s greatest gift. And in a strange way, the autism journey has been an unexpected blessing.
Michelle Fong is the lifestyles editor for the Dayton Daily News. Contact her at Michelle.Fong@Coxinc.com or @michellefong76 on Twitter.
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