April 12, 2009 12:29 PM
Special needs children are a gift
A comment this morning:
I just wanted to say thank you to all of you that have a family member that has special needs.I am currently serving as councilor for a special needs group in my church in St. George, Utah.
Every Thursday night we get together and sing songs and do many different activities. I have never been happier in my life. I always look forward to Thursday night! These kids are so amazing, they love you no matter what. They are truly sent to us from Heaven Above. Some people might think that the ones with challenges made a mistake in the previous life or their parents did. But it all actuality the ones that have a special needs family member were given a gift from God. He has given you a Special Person. They are so innocent and loving and caring, and their hugs are ultimately the BEST.
I really Love these kids and i just wish everyone could see how wonderful they really are.
So again Thank You to the Parents, Siblings, the people who adopted a special needs child, anyone who knows a special needs child and cares for them.
Thank you,
Danielle Tudman
This reminds me of an article I wrote for World magazine in 1997. I've used the opening paragraph for other articles, but this one has a different twist:
My little extra
Lessons in love from an unexpected teacher | Barbara Curtis
I call Jonathan my little extra because he has an extra chromosome-you know, that extra one on the 21st pair that causes such consternation in most potential parents. Down syndrome, it's called-named after the doctor who first "discovered" it. Trisomy-21 in modern genetics-like I said: Third chromosome, 21st pair.
Before he was born in 1992, I'd prepared birth announcements with a verse from Elizabeth Barrett Browning: "God's gifts put man's best dreams to shame." That's how I had felt about each of my children. And that's how I felt when they put this new little baby in my arms and I could see he looked, well, just a little different.
Tripp said we'd name him Jonathan-"Gift of God."
Those first days were difficult: Jonathan came close to dying. His teeny organs were patched together by Michael Harrison, a humble man and eminent surgeon. After Jonathan recovered, I learned that until recently many Down syndrome children were denied lifesaving procedures, sometimes even by their parents.
I was grateful Jonathan was born at a time when the medical community-at least once he was out of the womb-respected his worth as a person as much as any of my other children.
Seeing Jonathan spend his first month of life in intensive care was hard. It was harder still to rush him to the hospital-six times in the next 14 months. But with the help of our church community, we managed to get through those times.
Throughout this period, our daily life with Jonathan was pure joy. He needed a little extra help to meet his potential. Although remarkably undemanding, these babies need stimulation to meet normal developmental milestones. Perhaps because we so rejoiced when he was home and healthy, we relished our new responsibility. We'd gather in a circle on the floor around Jonathan and wait for the slightest lifting of his wobbly head. Then we'd cheer as though he'd scored a touchdown. Knowing speech could be a problem, we learned a child's vocabulary of sign language. My older children grew more caring and compassionate every day. A stronger unity was built in our family.
That's why we all understood when my son Matthew said, "Wouldn't the world be a better place if everyone had a brother with Down syndrome?"
Wouldn't it indeed?
Jonathan was followed a year later by Madeleine. Then by Jesse and Daniel, two baby boys with Down syndrome we adopted. When people express surprise that with our large family we would take on two more with special needs, I tell them, "When we found out what a treasure we had in Jonny, we decided we wanted more."
This is not an easy concept for most people to grasp-even Christians. One of the great sorrows of being a parent to differently abled children has been the inevitable isolation. No matter how much I regard Jonathan, Jesse, and Daniel as special blessings, it remains difficult for those on the outside to share my enthusiasm.
Yes, it has been a challenge. But with adversity has come an expansion of my heart. God has helped me not just to accept, but to rejoice in his plan for Jonathan. Martin Luther once said, "For whoever believes, everything is beneficial and nothing is harmful. For those who do not believe, everything is harmful and nothing is beneficial."
Remember when cynics presented a blind man to Jesus and asked who had sinned, the man or his parents, that the man had been born blind? Jesus answered that neither had sinned, "but this happened so that the work of God might be displayed in his life" (John 9:1-3). Usually we understand this passage to mean that the work of God would be displayed when Jesus enabled the blind man to see. But maybe it means just what it says: The work of God would be displayed "in his life."
That blind man was once a baby and a growing boy. For years his needs had had an impact on his family, his friends, his teachers, his community. Surely the work of God was being revealed each day in the growing compassion and wisdom of those who might otherwise have remained stuck in their own self-centeredness.
God doesn't waste a life he has given. I know as surely as I know each dimple on Jonathan's cheeks that God has used that 21st chromosome to give me more than I would ever have asked for. He offered me a little extra. I'm thankful for that.
Photo above of Justin - our youngest son with Down syndrome - with one of the directors at Easter Seals Camp 2008.
Posted in Disabilities, Pro-Life Issues | Permalink
Comments
I have read so many of your articles about your sons with something extra, but not this one. Thank you for running it here; it is beautiful and true. I have encountered Christians recently who did not understand the gift of children, particularly special children, and I must wholeheartedly agree with Matt's assertion that the world would indeed be better if all families had a little brother (or sister) with Down Syndrome.
Posted by: Jill S | April 12, 2009 4:38 PM
Special needs children are a gift. I do wish again as I read this comment, though, that we as a society could recognize that the term "special needs" represents a huge, broad spectrum of needs and circumstances.
"Special needs children are so innocent and loving and caring," goes this very typical comment.
Some "special needs" kids are more characterized by rages, violent behavioral activations,heart-breaking struggles with unseen disorders and complex intellectual and behavioral profiles than hugs. Some "special needs" parents have never received a hug, kiss, "I love you" or expression of remorse from their child, despite many years of toil. Instead of compassion we and our children receive much judgment, misunderstanding and ignorance, from ordinary people and professionals who ought to know better alike.
Our needs are thought to be covered by "support groups" for parents of "special needs children" (in which there may be not a single other person who shares our challenges) and "special needs" programs. (Our region's Catholic school "special needs" program is well-respected and advertises offering a broad array of services for a huge spectrum of special needs, yet they prefer to take only kids with MR/ Downs diagnoses, leaving the kids with more complex academic and behavioral needs out. The public schools generally cannot meet complex needs and absolutely run kids into the ground. And you have literally nowhere to go...)
We've been horribly hurt so many times by the strict dichotomy so many folks unwittingly harbor and perpetuate: either kids are innocent victims of a disorder, or they're just bad, manipulative kids. There ends up being little middle ground for the complex reality in which some kids and families must struggle.
A related assumption is that good kids with "special needs" siblings become compassionate and understanding because of the experience. Yet sometimes, despite the very best efforts and fervent prayers of their parents, kids dealing with much more complex and aggressive issues deal with bitterness and anger over the confusing assaults that they endure.
I know that this was not the point of the post or comment, but I just had to add this. Those of us fighting for our kids' lives while enduring such daily life really could use a little more understanding and compassion for the complex reality that is ours.
Posted by: Marian | April 12, 2009 9:45 PM
Your Mother's Day Down Syndrome celebration:
"Our Little Extras" blessed me beyond measure!!
Happy Easter!
Posted by: Leslie | April 12, 2009 11:45 PM
I need to be reminded of that when the challenges get overwhelming...
Posted by: Marya | April 13, 2009 7:29 PM
This was wonderful! My little girl was born with a brain disorder known as lissencephaly. I thought I would die because we had such a "perfect" life, but little did I know how unfulfilled it was! She is a true joy, and has brought me closer to my Faith and my family. Our priorities have changed for the better, we are more "real" and sincere, and have met the most beautiful and caring people in the disability community. God has truly, truly blessed us with this angel, and I wouldn't have it any other way.
Posted by: Bridget | April 13, 2009 8:49 PM
