If we can all agree that parenting is difficult, frustrating, and overwhelming mixed in with the many joys of nurturing a young person; then special needs/autism caregiving is like parenting on steroids – everything is heightened.
This means that the challenges as an autism mom and advocate often bring me to my knees, and the triumphs make me feel like I have won the Olympics.
My “miracle baby” Adam was born after three years of emotional and financial “infertility hell.”
To reveal just how naive, I was at becoming a first-time mother at age 45, soon after Adam was born the nurses handed me forms to fill out in the hospital, and where it said mother’s name, I wrote my mother’s name.
When my husband, Harry, a master mechanic, and I brought Adam home we were frantically looking for the owner’s manual to help us with colic, his rejection of nearly every formula on the market, his ear infections, allergies, and his resistance to change that persists to this day.
Shortly before his second birthday, Adam was diagnosed with autism. This is when the alphabet soup began – OT, PT, speech therapy, behaviorists, and a myriad of other therapies.
His autism was characterized by severe speech and developmental delays that prompted frequent tantrums and other toddler-like behaviors until he was in elementary school. He refused to give up his pacifier and sippy cup, nor allowed himself to be potty trained.
Whatever work and social commitments were on my plate, my days were filled with various services for Adam. Everything had to be modified to help him with his sensory issues and other fears, including dental appointments, haircuts, shopping trips to the mall, and a laundry list of other everyday outings.
This was difficult for my husband and me, but when Harry passed away on March 8, 2012, at age 57, I quickly had to learn how to navigate special needs parenting and advocacy as a loving single and often exhausted mom.
Adam did not start kindergarten until after his 6th birthday because my suburban Philadelphia school district, considered one of the best in the nation, did not have an autism support class the year Adam was eligible to start school, and I felt like I had to hold him back a year.
Being a special needs parent and advocate has had many upsides: it has opened my eyes to what it means to be a ‘Mama Lion’ willing to protect, defend, and help her cub, and also find a way to foster his independence. This is a precarious tightrope dance that we continue every single day.
I want to advise all parents of children with special needs to surround themselves with accepting and non-judgmental friends, because the first time your child isn’t invited to a birthday party because of his autism, it will cut you to the quick. And when you find those lovely people who want to spend time with you and your child, regardless of he or she acts out, it will become clear that they will be in your life forever.
When it comes to advocating for my son, I have ALWAYS refused to believe the well-meaning naysayers – medical experts, therapists, family members, and friends – who have been quick to tell me what Adam cannot do and will never be able to do. They want me to set my sights lower and decrease my expectations for him so that neither of us is disappointed.
Several doctors predicted that Adam would never be able to talk because of his severe speech delay, but for years he has been the chattiest child and teen with autism that I have ever met.
Among Adam’s accomplishments are the seven years he spent riding a horse as part of a local therapeutic equine program, learning Hebrew and performing like a Jewish rock star at his 2019 bar mitzvah, performing pivotal roles in several high school musicals, and becoming a computer whiz.
So as an involved parent, what do I want for my special needs child who recently turned 18? The same thing that parents of neurotypical children want – for him to be the best version of himself that he can be.
As I advocate for him at every step of his journey in school and the community, I want him to thrive, learn, and grow. I am focused on gently and firmly ‘stretching’ him out of his comfort zone to find a level of independence that we both can live with. He never has to worry about being a round peg in a square hole because I never want to put him in a box.
I have often said that I don’t want Adam to adapt to the world; I want the world to always accept and appreciate him; quirks and all. I want his teachers, future employers, and others in his life to recognize his gifts and talents instead of focusing on his shortcomings.
Is talking about marine life and animals an obsession or a path to working at a zoo or as a veterinary tech? Is his deep appreciation for dinosaurs a child-like passion or the start of a job at a museum or an archeological dig? Is his love for animated movies an adolescent carryover or the start of a future path as a computer animator working for Disney or Pixar?
So, as you continue to advocate for your child, regardless of his or her age or abilities, do it with a loving heart, with as few limits as possible, as well as exhaustive research. And NEVER EVER stop pushing for their dreams, goals, and desires. Because I believe with all of my heart that every mother and her child can step over those stumbling blocks and soar to new heights if the love, tenacity, and desire are there!
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Beautifully written Debra. Adam is an amazing young man with many talents to share with the world thanks to you advocating for him and never giving up. ❤️❤️