The Down Syndrome Family
- Wednesday, March 21, 2007
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?
As time passed, Josh started to improve, and the questioning became more pointed. As wary homeschoolers, we wanted to keep our options open until we knew exactly what early intervention was, and what it entailed from a legal standpoint. But we also knew enough to act interested so they wouldn’t think we weren’t going to take their advice. So we started asking each one what exactly they thought Joshua would need.
They were pretty much in agreement: he would need occupational, physical and speech therapy several times each week, plus early intervention classes from birth to age three, and then special education preschool from three until he reached school age. They also advised us to get in touch with a Down Syndrome support group for his socialization needs, and a charitable group that raised funds to help out families with special needs kids.
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