This week I asked several moms to help me write. Why? To help all readers understand the true spectrum of Autism Spectrum Disorders – not only between children, but between children in the same family. Every day this week you will get to meet a new child (or children)…they are very different from Tucker, and yet, so much the same.
Keep reading – on Saturday I will post a ‘wrap-up’ with some final thoughts about the spectrum itself.
Garrett is the amazing leading little man in my life who happens to be both blessed and burdened with a dual diagnosis of Epilepsy & Autism. Thus, he’s “epitistic” and he is a wonder. The definition of wonder, from our dearest friends Merriam & Webster, is a feeling of surprise mingled with admiration, caused by something beautiful, unexpected, unfamiliar, or inexplicable. If that doesn’t define my beloved, I don’t know what does!
When he came into the world after months of trying to conceive, a full-term uneventful pregnancy, nine days of labor contractions but only minutes of pushing after induction, he was quiet. One snip of the chord, a quick unravel, and he was screaming with the best of them. I had no concerns. I was hopelessly in love and felt certain that unrealistic popular love songs had to have been written about people’s children. This was UNCONDITIONAL love. I didn’t realize how much that description of my love for Garrett would be tested.
I had a strong feeling I had a son with Autism when he was an infant. Months of “resting assured” by experts brought no real rest. After several missed milestones, obvious quirks but lots of questions as a first-time mommy, I couldn’t kick the concern. After finally getting in-home early intervention started at almost a year, they confirmed my concern; not autism, but definite delays.
Why not autism? Garrett was “too social” to be autistic. He was attached, even-tempered, easy with transitions, quick to take to newcomers, and showed some limited awareness of others’ emotions when overtly expressed. At that age, that was social. [Today, I am ever-so-grateful to describe Garrett this way knowing how atypical this description is for others on the spectrum.] However, his peer interactions were nil. Garrett’s affectionate nature, in my humble opinion, was misunderstood as social behavior. His affection and interaction was pretty exclusive: I was the center of his world, his father a close second, his daycare provider closely followed, a few family members and then his in-home providers and then. . . yep-all adults!
The in-home early intervention showed huge strides in PT. Our barely moving one-year old crawled by 14 months and we were thrilled. He added consonant noises and was signing “more” through lots of hard work. Progress! It was a good time for progress. We discovered we were expecting (quite intentionally) another nugget who would arrive well before his second birthday. Then, my goal (I thought jokingly) became to have him walking before I was facing carrying a toddler and an infant carrier.
Before gaining more sounds or walking, a new test came our way: a seizure. One that sent us on a whirlwind adventure with helicopters, needles, lab coats, questions, best guesses, medications, and not much else. At that point, most of the professionals in our life guessed that the seizures could be the explanation for all the delays. I was certain they played a part but I couldn’t kick the other concern that had existed long before.
Early on in exploring Garrett’s epilepsy, we went for an evaluation for Autism. They easily gave us the title of Intellectually Disabled but left Autism off for now with high hopes of getting his epilepsy well-controlled in the next year before considering further evaluation. The next year proved unsuccessful in doing so and his Epileptologist agreed the Autism concern was now within her as well.
At 2 ½, we got the Autism Spectrum Disorder diagnosis added to his short list. Perhaps, knowing some of the back story still doesn’t explain to you why it wasn’t the nastiest thing I’d ever heard. ASD came with some answers, options, and reading material. Autism explained the quirky boy wonder we were raising in a way that epilepsy just hadn’t. In an almost-can’t-believe-I’m-actually-admitting-this way, it also confirmed I knew Garrett. More than anyone else on earth, I knew my son; the one who couldn’t speak a word, was challenged in ways I couldn’t fix and faced relational gaps I couldn’t bridge. It was a strange affirmation of the bond I felt so strongly and had to defiantly defend so many times prior while being dismissed for the intense level of concern I carried.
Life goes on.
Here’s the truth. I stopped dead in my tracks for maybe an hour of the drive back from each diagnosis. Epilepsy and Autism. I knew both were going to change my life. However, neither was going to bring it to a screeching halt. Life would keep moving and we would too. He would too! He walked at 18 months but, still hasn’t even regained the handful of consonant noises he had before his first seizure. He makes little bits of progress that become big freaking deals at our house. The other day, he scooped applesauce from a spoon. Yeah. . . at 3 ½, I posted it on Facebook, sent a note to his preschool, texted his grandparents, and darn near shed a tear. No screeching halt.
The ASD diagnosis brought joy and purpose to my new life. My new life is the one where we sold our home for a value-sized version, traded the leather-lined heated seats for a mini-van that would nickel-and-dime us instead of hold a monthly payment over our heads, and ditched the dual-income household so that my master’s degree could collect dust while I took up para-professionalism in every form of therapy, nursing, and special education while being an at-home Mommy! I geeked out on Autism and made it my new field of study.
I began to know Garrett even more deeply. I could see his oral fixation that was often pleased by having an oversized mega block in his mouth as a means of sensory input. I could understand his early morning high-pitched household-awakening screeches as a way he comforted himself. His rocking, humming, spinning, and obsession over the vacuum all had newly-perceived value by educating myself with the official addition of ASD.
This education and understanding was both tiresome and energizing as I exhausted myself in research and networking to keep reaching for a new level of understanding. From understanding came even more awareness and appreciation. Once that was in full swing, I could stretch myself to help others see him the same way.
Now, Autism has made my life more explicable. It’s in my friendships and my family; it’s all over my Facebook and my CaringBridge. I know I don’t owe everyone an explanation, but I actually offer it far more than I ever thought I would. I tell people at the library I have a son with Autism. I invite the conversation. The conversation is important.
I know. I come off as a total newbie. I’m not naïve to the trials we will face and I’m only as prepared for the throes of puberty as any mom of a toddler. However, I am eager to share so that others in my community may grow in understanding, care, and concern. Sharing so that ignorance might become a diminishing excuse for the limitations others impose upon my child.
I have the same hope for him that I suspect most parents hold; that he will grow to value himself, his family, his faith, and develop friendships and a fulfilling purpose in life.
The Autism diagnosis empowered me as a parent. In advocating for my epitistic boy wonder I want to keep the empowerment spreading to others and to him.