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The Down Syndrome Family

Barbara Frank

Until 1993, we were your average homeschool family. We had been happily homeschooling our older two children for five years, and had an adorable little toddler who kept us busy and made sure we weren’t getting too set in our ways. In addition, we were expecting baby number four.

Joshua was born shortly after midnight one rainy March night. He was a little woozy, but as cute as a bug. I spent his first day cuddling him. He wasn’t too interested in eating, and while the nurses seemed concerned, I wasn’t. I figured he was just worn out from the birthing process, and would probably be more energetic the next day. Such is the confidence of a fourth-time mom.

He was about 18 hours old when he started having trouble breathing. We had just sent him to the nursery so that we could eat the fancy dinner the hospital provided each couple. I was biting into a chocolate éclair when a man I’d never seen before came into the room and told us that he was Dr. So-and-so, and that our son was having trouble breathing, and his heart wasn’t working right. He said they’d put him on oxygen, but he really needed more help than they could give, and they wanted to transport him to a bigger hospital. Then he added a little p.s.: "We think he might have Down Syndrome."

And that’s how our adventure with Joshua began. As it turned out, he did have Down Syndrome, and he did have to go to the larger hospital, where he was admitted to the Neonatal Intensive Care Unit. Over the course of the next month, the staff would find scary things that were wrong with him, try to fix them, succeed, and say he was ready to go home. But before we could pack up the baby seat and the snowsuit, we’d get a call telling us they’d found something else and he could not yet be released. After going through this process twice in order to find he had reflux and jaundice, we were pretty discouraged. We wanted our baby home.

But we had to go through it one more time. That’s when we found out that he had central apnea: basically, he had a tendency to stop breathing. If he hadn’t already been in the NICU for the other things, the apnea might not have been discovered, and he could have been a crib death. So God worked the whole thing out for good.

But during the time Josh was in the NICU, there was a strange dichotomy going on. There were so many good medical professionals working to solve our son’s serious problems and keep him alive, and none of them could promise us he would make it through his first month. And yet, after doing procedures on him, puzzling over him and looking very serious, they would turn to us and ask the same question:

"Have you signed him up for early intervention yet?"

We were perplexed. We knew early intervention was some kind of special education. But was it so special that their concern about it rivaled their concern for saving his life? Yet it seemed to be the question on everyone’s mind. At least once a day, a nurse or a doctor or a therapist or all three would ask us that question. We were new to the world of special education, and their incessant questioning made us nervous. Why were they so concerned about this, when they weren’t even sure he was going to live?

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Most Recent User Comments
ltt
3/28/2007 10:46 PM
I'm afraid that I too have to agree that this family may have missed out on some wonderful blessings due to the "fear factor" or possibly misinformation. I homeschooled my 5 children and now as they are in college and high school have returned to the working world as a Speech Therapist. I work for an Early Intervention Agency. I can say that in our state being enrolled in or EI does not "require" any further obligations for services. As a therapist I go into the family's home according to their schedule and seek to help, teach and train everyone in the family according to the goals that they have set for communication for their child. I know from experience that EI has been a tremendous blessing for many families and their children. I agree from this article that God has met this families needs, but wouldn't want others to be misinformed that EI is somehow something "evil" that should be neglected, but from my experience includes many caring, christian, and gifted professionals.
LTWV
Tri21Dad
3/27/2007 4:57 PM
Perhaps things have changed since this family was introduced to the public early intervention programs. Now, accepting these therapies does not "lock you in" to going to public preschool. Many families choose to have their child attend a church-based preschool, stay in daycare, or continue to stay in the home. Still, therapies are offered at the public preschools which the parents can access, usually at least speech therapy.

The lesson I take away from this article is how to convert daily tasks into educational opportunities, as demonstrated by the loving way this mother uses grocery shopping to teach concepts. The lesson should not be to avoid early intervention programs, as studies have proven that these therapies improve the quality of life for individuals with Down syndrome. Still, though, the ultimate factor is having a devoted and loving family, which this son clearly also has.
kelstad
3/26/2007 1:59 PM
I found this fascinating and sorrowful. We are a proud family of 3 children. Our last child, only son, who is now 2, is Down Syndrome. I don't know what I would have done withough Early Intervention. They have been a blessing an life line. Two of my son's therapists are strong christian women who I can openly discuss our family's faith and values. I feel so good with these women and the therapy we receive. My heart goes out to this family for all the trials they have faced, but I pray God would soften their hearts to be open to some of the services that their son could have that might strengthen his skills.

Kristy
Ft.Leavenworth, KS
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