Being the parent of a child with special needs brings a particular set of challenges with it. There are the numerous doctors’ appointments, and specialists’ appointments, as well as trying to work “therapy” into everyday routines at home. Often, it seems like there isn’t enough time in the day, or the week, to get everything accomplished for my children that I’d like. This can be very frustrating, and it often makes me feel like a failure as a parent. But there is another, more insidious issue that can affect parents: the undiagnosed special need.
This is my son, Isaac:
Issac
Isaac is five years old, loves Pokemon and animals, and wants to run a zoo when he is an adult. Isaac can talk to you at length about almost any topic you’d like, for as long as you’d like, but there is a problem—Isaac has an articulation disorder of speech. In fact, Isaac tics most of the checkboxes for an articulation disorder: he fronts, he stops and he drops many of his letter sounds. This makes conversation with Isaac extremely difficult, particularly because his vocabulary is so large that he can use words that most five year-olds would never attempt. And so, much of my time with Isaac is spent trying to decipher what he says.
But wait, you say, isn’t this piece called “Undiagnosed”? What’s undiagnosed about an articulation disorder?
That’s a fair point. We know that Isaac has a speech delay, which technically, is a diagnosis. However, we don’t know what is causing it. He has no structural problems with his muscles or bones, which could explain this. He doesn’t have Apraxia, which would indicate a neurological component.
Beyond that, Isaac has a fine motor delay, which means that he cannot perform functions such as writing or cutting with scissors at a level appropriate for his age. Is that tied into his speech issues, or are these delays completely unrelated?
And so, the undiagnosed special need. I know that Isaac is an incredibly smart boy, whose comprehension of the world around him is far beyond his years. But his speech delay is such that he tests at around a three year-old level for his speaking ability. But beyond speech therapy, which we have at school and privately (both on a weekly basis), and twenty minutes of OT (occupational therapy- for the motor delays), there isn’t anything that we can do to help Isaac with his burden. Both his mother and I believe that there is a root cause for his problems, and that if we were able to address the underlying cause, we would be able to help him with his functional difficulties. But after batteries of tests from a wide range of specialists, we get the same report every time: “Speech delay and generalized fine-motor delay.”
I cannot tell you how disheartening it is to watch my son struggle daily just to make himself understood. Isaac bears this with good grace and good humor, but I can see how it weighs on him, and wears him out. I can see how he often retreats from others his own age, simply because communicating with them is such a challenge. Most days, I feel like I have failed my son, because I have not found a solution to his difficulty. My brain and my heart are at war on this issue; my brain knows that when even the specialists are stumped, there isn’t much more to try, but my heart feels that there is surely a solution out there, if only I would search a little harder for it.
With my older son, Timothy, we know his diagnosis, and we know precisely all the ways in which we can help him with ACC. But with Isaac, we are forced to wait on the sidelines and watch, hoping that his therapists will finally unlock a door that will allow him to overcome his difficulties. In many ways, Isaac has a harder road than Timothy, because Timothy’s diagnosis opens many doors for us that would otherwise remain closed. Isaac is unable to benefit from many of those same aides, simply because his diagnosis does not qualify him for them.
I want so badly to take this burden from my son, and give him an easier road to walk. I want to make Isaac’s life easy and carefree, but I can’t. Every day, my brain reminds me that I need to try one more search, or have Isaac sit through one more test and an answer will be revealed. Otherwise, my brain tells me, Isaac will have a whole life filled with difficulty. My heart is telling me that as long as we keep giving Isaac love and support, he will be just fine, and will be a more compassionate, sensitive individual for the path he has tread.
My head and my heart are at war on this, but on most days, my head wins.
As the proud father of three children, as well as an MFA graduate and published author, John spends most of his time trying to balance the demands of being a writer and a parent all at once. Most of the time, it’s an uphill battle. As the parent of a child with special needs, John tries to use his talent for writing to bring inspiration and hope to his readers.
For more information about John Will you can visit his website at the Writing Dad, Here and Facebook page Here.
Cover Photo: Josh Cochran