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New Parent Outreach
A Future and A Hope
By Carlene Mattson
 Last night my son donned a tuxedo, slipped roses onto his date’s wrist, posed for photos and danced the night away at his high school’s Winter Formal. All of this sounds pretty typical to other mothers of senior boys, but Jeff isn’t typical. Jeff has Down syndrome. The day he was born, I made a mental list of all of the things he would never do: go to the prom, be invited to parties, hold down a job, and fall in love. Happily, I can report that there is nothing on that list that he hasn’t done, done well, done with gusto, or done repeatedly. Last night was his third big formal dance.
He asked a “real babe” (Jeff’s words) to last spring’s prom (he may have Down syndrome, but he isn’t blind). He also received an invitation to attend the homecoming dance this fall from a regular education (typical) student. It made the newspapers --- an unenlightened newspaper columnist thought this was highly unusual that it was worthy. Although I know it may not be commonplace it isn’t hard to understand why charming people with Down syndrome have a number of typical friends involved in many activities in which they participate. The morning following his most recent big night out at the Winter Formal (also at the invitation of a typical student) I asked Jeff if he had an okay time, a good time, or a great time? He responded that he had a better than great time, he had a wonderful time! Once again Jeff’s experiences had gone far beyond what I had allowed myself to dream for him nineteen years ago.
Last week I met with six other parents, each of whom has a child with Down syndrome. Many of these parents, some of whose children are only months old, voiced their concerns and fears. I tried to simply listen. When you are feeling raw you certainly don’t want a cheerleader cartwheeling across your emotions telling you how lucky or special you are to be raising child with special needs. A pep talk in those circumstances can feel like abuse. But their perspective was so different than my own. They are looking forward into the unknown, somewhat anxious about the uncertainty of the journey that is before them. I have the luxury of having been on the road a while, and I can rest in the fact that the trip thus far has been a most enriching experience. It was tough to sit still and not tell them what an incredible blessing it has been for our family to simply know and live with Jeff, a freckle faced kid with a killer smile, a tender heart and a great sense of humor.
As I listened to this group of young parents I was reminded of a particular night Jeff was a baby. After he had gone to sleep, I reflected over the day I couldn’t think of one thing that had been difficult because of his extra chromosome. Jeff had eaten, napped, played and smiled at me. I had enjoyed being his mother. I wondered if the cause of my sadness was related to the future, because the day we had just lived had been extremely pleasant, and the forecast for tomorrow looked promising too. I have been waiting Jeff’s whole life for the “bad” part of his disability to show up. So far it just hasn’t, and it occurs to me that the future I have been fearing might just be as good as the last two decades have been.
Now I am not saying that there are not parts of parenting a child with Down syndrome that are tough. I grow weary with the length of time it takes for Jeff to learn a task or grasp a difficult concept, but the reward in seeing him finally “get it” is so rejuvenating it far exceeds the fatigue of getting him there. I have felt loss over the skills that may always remain beyond his reach. He will never be a mathematics whiz, but then again neither is his mother. We artistic types bring gifts to this world that don’t involve numbers. And I regret that we occasionally encounter people blind to his value, but they don’t know him.
For me, the hardest part of having a child with a disability is not dealing with the special needs of my child, but dealing with those whose jobs it is to provide for these special needs. I have shed tears of frustration just trying to get the right classroom setting for my son. And I have felt fatigued by medical and educational systems that seem to have lost sight of whom they serve and why. But then I have also been restored by the dedication of exceptional teachers who are the lighthouse of our children’s schools, beacons for our children with special challenges, lighting their way with acceptance and love, enabling them to be their best selves. These are the instructors along with fellow parents who have helped me to fight my desire to over protect Jeff, making me accountable to hold him a little more loosely and to nurture his independence.
I used to wonder how I would cope if my precious little one ever came home crying, crushed by a bully’s wounding words. This, like most other fears I have ever had regarding Jeff, has never been realized. The son who came home crying from an epithet thrown his way on the bus was his big brother, teaching me that, whether you have an extra chromosome or big ears, life has its many injustices, and all of them aren’t aimed at our developmentally delayed children. I have to remind myself that most often it is adversity not prosperity that creates maturity, character and growth in us. To shield any child from every hardship would be a handicap in itself. Should the day come when he is hurt by a malicious word we will survive and, by learning to deal with it, we will be better for it, even if it only makes us more compassionate for the experience.
I am learning our disabled children deserve to experience “all” of life just like our typical children. Not too long ago I listened to a parent of a child who was frail, but not fragile, as she watched her young son happily wheel around the bases at our Challenger Little League game. She recalled her son’s grandmother had urged her not to allow him to play baseball because he might fall from his wheelchair. Her response was so healthy: “Don’t typical children fall down? Can I deny him the joy of one of life’s most enjoyable experiences simply because he might skin his knees?” My prayer is that Jeff will truly taste life and that he will never allow himself to be defined by his disability.
Last Sunday Jeff noticed the scripture reference on the church bulletin. He said “Look Mom, there is my verse!” Jeremiah 29:11 “For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future.” Unfamiliar with this Bible passage before Jeff’s birth, it took on great meaning for me when I first came across it at a time when I was still thinking that Jeff’s future might not be so hopeful. As I looked at this finer run under the verse and watched him mouth the words to himself I realized the truth of the promise was already ours. Jeff and other young people with Down syndrome have futures that will hold a special kind of prosperity, one of daily joy and contentment.
Adulthood in the world of disability isn’t the place I once had imagined it to be. Working alongside young people with Down syndrome who help plan and present their part of the National Down Syndrome Congress annual convention, I have seen that people with Down syndrome are leading satisfying lives. They are graduating from post secondary education and enjoying meaningful work. There are a few highly visible young people with Down syndrome who have done extraordinarily well, acting in films and television, authoring books, serving as editors for national publications on disability, helping with research, and serving on governmental task forces. But there are even more who have equally fulfilling employment, right in their own communities. Jeff can’t wait to go to school on the days his school transition program involves working at our local music store or the school district’s kitchen. He feels great about himself and his job and he likes taking that paycheck to the bank. Disgruntled will never be a word used to describe Jeff as an employee.
Jeff seems to take real pleasure from the things in life that some of his “typical” peers are either too busy or too sophisticated to enjoy. He plays soccer, baseball, basketball, sings, plays the guitar, listens to the radio, collects videos, tells jokes, e-mails his brother who is away at college, likes photography, reads his Bible, hangs out with friends, and possesses dance moves that would amaze you. When was the last time you heard a high school student announce that he has had a great day as he climbs into the car after school? Observing the difference in contentment between the able bodied and disabled teenagers in my community often makes me wonder just who the “handicapped” ones are.
Like most other parents of young adults with Down syndrome, I have had an extraordinary parenting experience. Those outside our circle may never fully understand how much richer our lives are because we parent children who are so openly honest, take such pride in their accomplishments, model a real satisfaction with life and love those around them so unconditionally. There are hundreds of small magical moments where my husband and I have been privileged to see life through Jeff’s eyes, and our hearts are enlarged by witnessing his view. It is something you just have to experience to fully appreciate. We know that, though we would have never have asked for our child to have Down syndrome, our child with Down syndrome just may be the very best thing that has happened to us.
Last night as Jeff admired himself in his tuxedo, he turned to me and said that he had shined up just like a new penny. I thought to myself “Young man you have shined brighter than I ever could have imagined and you have exceeded my every expectation.” My son has a happy life, he simply exudes joy. He is content, satisfied, and stretching toward independence. He will be twenty-one in the new millennium. He has a future and a hope!
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