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This is day 6 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, Jeff Emanuel is sharing his story of being a special needs dad.
If I were ever to become a father, I knew I wanted a son.
I’d grown up as one of four boys (the only females in our family were my mother and the cat), and that, combined with years of organized sports and outdoor activities, as well as a stint in the military working in an area open only to males, made it a literal no–brainer for me –– an assumption that not only didn’t require any thought, but that never really even considered the idea that anything different could ever be the case. When our son Jack was born in 2009, it seemed like a natural thing that he would grow up to enjoy many of the same things that I had as a boy and young man, which I thought to be synonymous with being a growing boy: throwing the baseball and football; swimming; trying various sports and activities; hiking, camping, climbing, rappelling, and enjoying the great outdoors; and so much more.
In other words, I was expecting what I grew up thinking was a typical male child. As it turned out, I was wrong.
At three years old, Jack was diagnosed with autism. This diagnosis explained a great deal about his physical, mental, social, and emotional challenges, as well as his amazing, unique talents. In short, Jack was like most other two, three, and four year olds…but more extreme in almost every way. By his third year, Jack had the vocabulary and reading skills of a child much older; he had a memory like a steel trap; he knew every color you could think of, from “red” and “blue” to “silver” and “maroon”; and he could name every dinosaur in each of his books by their full names (not just staples like “T–Rex,” but “Ankylosaurus,” “Parasaurolophus,” and “Carnatosaurus,” just to name a few). However, he also had difficulty with fine motor skills; he would randomly fall off chairs and run into walls; he would rock constantly, especially when suffering from perpetual insomnia; he would scale the highest ladder and the playground, then jump from the highest platform he could find, embracing the rush while completely oblivious to the physcial consequences of such and act; he would have meltdowns so loud and so long that bystanders would become convinced that he’d suffered some horrible injury; and he would perseverate on words, events, or tiny details and refuse to let them go for days, weeks, or months, often experiencing great anxiety as a result.
We were both dismayed and relieved to get Jack’s diagnosis, and immediately began to do whatever we could to ensure he would get the care, therapies, and other things that he needed to live as healthy, successful, and well–adjusted a life as possible. As with most husbands, I assume, I use the term “we” here fairly loosely. My wife was the one who really jumped in with both feet, researching both autism and therapies, fighting with preschools and insurance companies, making phone call after phone call to get Jack into the practices he needed to get into, and then carting him all over first Atlanta and then Boston to five or more appointments every week.
I tried my best to both support and participate, but for quite a while – too long, in fact, in spite of myself – I somehow held on to a combination of hope and assumption that Jack would still be the same boy that he would be had he been neurotypical: the baseball throwing, the ability to go places and do things without elaborate visuals or other care being taken to cater to his need for routine, etc. It took a lot longer for me to realize that wasn’t the case than it did for my wife, to her eternal credit, because – as I finally realized at some point in the last year – I was, despite the best of intentions, thinking of Jack in the same way as anybody else who either didn’t recognize or believe in the effects of autism, or who expected a neurological condition to somehow be a passing phase. Not only was this unfair to me and to my wife, as it led to a great deal of anziety as his condition failed to “improve” and as childhood staples like T-ball and other activities proved to be nigh impossible to successfully partake in, but it above all was not fair to Jack. I was placing expectations on all of us, but especially Jack, that were simply unrealistic, in the purest sense of the word.
Ever since Jack’s diagnosis, I’ve known that he has autism, but I let my assumptions and his amazingly high level of function trick me into thinking of autism as almost a part-time condition, which only really came out during periods of intense perserveration or the epic meltdowns we’ve seen far too often (and certainly haven’t seen the last of!). However, it’s only in the last year that I’ve really learned to embrace his autism, as simply being the natural state of Jack’s brain – something that will always be there, as that’s the way he was made by his Creator. Really understanding and embracing this has allowed me to appreciate the good times even more: the calms between the storms, his amazing mental achievements, and so much more. However, beyond that, it’s allowed me to appreciate the littlest things even more than that: a sentence properly constructed, eye contact during a conversation, and a calm explanation of a problem that could otherwise have provoked hours-long paroxysms of rage. It has also helped me to recognize that the bad times are a manifestation of the way Jack was made, and to really invest – not just try to help out where possible, but to really, fully invest – in being the parent that Jack needs, and in working within the boundaries of what is possible with him both physcially and neurologically to help him succeed (rather that doing what we all hate seeing in parents, which is demanding that he not fail).
Fully embracing Jack’s condition has also helped me in two other ways. First, it has reinforced to me the importance of a rock–solid marriage. You think it takes true teamwork to raise a kid or three? Try it with a special needs child! Not only do we need to be on the same page with regard to handling Jack’s endless questions, repeat behaviors, and other needs, but the simple fact that one of us is around much more than the other during waking hours means both that communication is a must for parenting success, and that overt love and affection are even more critical both for each other and for the sake of our children, who must learn that, while we both love them more than words can describe, our own relationship comes first.
Second, embracing Jack’s autism has helped me to better understand myself. From social awkwardness at times, to a brain that moves too quickly for its own good more often than not, to a tendency to repeat activities and behaviors, to a physical, mental, and neurological need for exhaustion-inducing and adrenaline-pumping physical activities (triathlon, hiking, climbing, sky- and SCUBA diving, etc.), I see in myself some of the roots of Jack’s issues and needs alike. The benefit goes both ways: I can use my own experience to inform my support of him, while also observing behaviors and stimulus-responses that let me see both how I have handled things in the past, and what I can focus on for my own well-being in the present and future.
The exercising-to-the-point-of-exhaustion bit definitely applies to Jack as much as it does to me: more than anything else, it’s a mental and physical need that seems to help re-order the neurons, re-align the synapses, and more or less put our neurological affairs in order. While organized sports (or anything requiring precise motor skills and the ability to mentally focus) are challenging to say the least, there’s plenty of physical activity to be had – more, probably, than almost any neurotypical child his age. In one day, we can hike and climb for hours (he climbs like a mountain goat), play in the ocean, chase each other in circles around the yard (pretending to be either race cars or trains), and run back and forth and back and forth along the quarter–mile sea wall just in front of our house, taking time to hop up and down the half–dozen flights of stairs that lead over the wall and down to the ocean…and he’ll still have the energy and stamina to count out a few hundred jumps on the trampoline and “rough house” on the bed before finally falling into a sound, prescription–aided sleep.
Amidst all that activity, though, and before sleep sets in, I can see in Jack’s eyes both a light and a peace – a calmness amidst a lifelong storm – that is more rewarding that I could ever describe. That alone is worth tenfold the price we pay on a daily basis as special needs parents.
Jeff Emanuel is a husband, father, and veteran. He loves spending time with his family and anything that involves the outdoors. His wife, Katie, writes about his family’s journey at www.wonderfully-made.net.