The Adventure of Raising a Special Needs Child Doesn’t End at 18

Getting Real With David T. Bruce

My twenty-one-year-old son has Down syndrome.  When Kyle was born, his pediatrician told his mother (my ex-wife) and me to take him home and love him. 

As he grew, I accepted the challenges that come with raising not merely a child but a child with a disability, his pediatrician’s words sustaining me through the most difficult phases of growth.  Those challenges included the typical afflictions: viruses, chicken pox, and the like.  These were compounded, though, with the challenges associated with Down syndrome. 

Some hearing loss, while temporary, has left Kyle speech-impaired.  Compression of the spine resulting in the need for a surgery that successfully prevented his death has left him with related complications that affect his swallowing.  Poor muscle tone has led, we believe, to Kyle’s current physical condition, which makes the use of his arms and legs difficult for him.  His gait prevents him from walking great distances, and his atrophied hands mandate that he frequently has assistance getting dressed and assistance with his personal hygiene. 

Without a doubt, medical professionals would be able to expound on Kyle’s condition in greater detail, using long words and foreign terminology.  This is, however, the world that we share with Kyle.  His lot is worse than some yet better than others.  Neither he nor we complain.  Our lives are rich with adventure and filled with hope.

The dreams I have had for Kyle in the past, while not shattered, have given way to reality.  I and my wife – Kyle’s mom essentially since he was age 6 – have guided Kyle into adulthood.  My wife especially has been instrumental in Kyle’s growth, caring for him as if he were her natural son.  The love between the two of them is undeniable.  Our younger children adore Kyle, as well, seeing past his disability, accepting him as a unique individual.  We have a successful, happy blended family.

As our oldest children grow up and begin lives of their own, Kyle’s future brings new challenges.  Essentially non-verbal, Kyle cannot articulate how he feels about his home.  We can only guess his preferences: does he wish to remain with his family, or does he desire to live in a group home, sharing space with his peers, assisted by able adults?

We know Kyle is happy.  We can see that, and we know what he enjoys (to name a few activities): watching football and movies, traveling and staying at hotels, and listening to and watching the rock band,Styx, in concert.  Is there more, however?  As with all of our children, we want them to grow, to reach beyond their potential, regardless of ability.  Our current challenge is deciding at what point – if any – are we holding Kyle back?

Certainly our age will ultimately force us to find a new home for Kyle.  We are researching options, visiting homes, and playing out various scenarios in our minds.  Kyle presents us with the challenge of deciding how to raise an adult.  At one point, I imagined Kyle being with his peers in a different home.  As Kyle left school, this seemed logical.  With Kyle’s health concerns, trusting others becomes difficult.  No one knows Kyle as well as we do (other than Kyle, and he’s not talking).  As I settle into this reality, I find myself more and more okay with caring for Kyle in the long term.  I have become accustomed to the idea of Kyle remaining in our home until he can’t, until we can’t, or until circumstances change regarding his health and available care.

Kyle does get out of the house daily, volunteering in the community.  He does share in activities with his peers regularly.  At the end of the day, he comes home.  Is this what he wants for himself?  Is this what we want for him and for ourselves?  I don’t know.  I cannot reconcile what I selfishly want one way or the other, nor can I reconcile what I think is best for all of us.  I do know that today he is happy, and I am happy – our family is happy.  I do know that I want to share our future with Kyle and his with ours.  Today is enough.  Tomorrow has taken care of itself and will likely continue to do so.

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