The Down Syndrome Family

By Barbara Frank

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 eclair 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.

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.

I couldn’t imagine the kind of life they were describing. We were already very busy with our three other children. How could we possibly find the time for all these therapies? I pictured our lives turned upside down as we dropped everything we had been doing in order to cart our little baby to therapists and classes and group meetings. We were told he would also need to be seen by several other professionals, including a cardiologist and a pediatric ophthalmologist. It sounded as though we would have to spend every waking hour doing what needed to be done for him. There wouldn’t be time for anything or anyone else.

One night on the way home from the hospital, I turned to my husband and cried, “I don’t want us to be the Down Syndrome Family!”

He felt the same way, and reassured me that we would not allow that to happen. That was the beginning of our determination to provide a normal life for Joshua, and for his siblings. Even though the professionals were telling us that these therapies were his only chance for making progress despite his disabilities, we felt that there had to be another way to help him without hurting his brother and sisters.

We started by calling HSLDA (Home School Legal Defense Association). We had been members for several years, but never called them for help until we had Joshua. The Special Needs Coordinator told me she would have to call me back with the information, but in the meantime, to be careful not to sign anything that had to do with therapies or early intervention. That startled us. Why did we have to be so cautious?

The next day she called back, and we spent over an hour talking. I learned so much from her that day. She told me that in the state of Illinois, if we signed paperwork putting our son into early intervention, we were actually hooking him up into the public school system. Depending on the documents used, we could be signing away our right to make decisions about his education until he was 21. No wonder she said not to sign anything.

She then explained that early intervention was a catch-all term for putting a new baby with disabilities into state-supported programs featuring recommended therapies and other stimulation. The babies were assessed regularly, and then at age three, funneled into a special ed. preschool, run by our local school district.

As homeschoolers, we had avoided any contact with the public schools, and had no intention of starting up with them just because we now had a child with disabilities. To my relief, she assured me that many people were homeschooling disabled kids, and they were thriving. This was the first encouraging word I’d heard since Joshua had been diagnosed.

She recommended a book to read that would provide a good idea of what was involved in early intervention. When Slow is Fast Enough ,by Dr. Joan Goodman, is a detailed description of Dr. Goodman’s study of early intervention for small children with disabilities. Reading that book helped me realize that we would want to homeschool Joshua for all the same reasons we homeschooled his siblings. And so we did. Homeschooling him has been a team effort. We have all worked with him, played with him, and sometimes, civilized him.

Over the years, we have had Joshua in some therapy. He was in private speech and physical therapy when he was a baby, but we stopped both by the time he was two. The therapists were very young and by-the-book, and we felt it wasn’t worth the time and money involved. But we still wanted some form of speech therapy for him, as his greatest delay is in speech. While he is very aware of what is going on, he cannot express himself clearly. Of course, he still manages to make his desires known, and we can generally tell what he is saying, but he needs to be able to communicate with others outside the family, too.

Fortunately, a fellow homeschooler recommended a wonderful speech therapist to us several years ago, and Josh has been seeing her weekly for the past few years. She is friendly to the idea of homeschooling, and during his sessions, I sit in and she shows me what to do with him at home. I have learned a lot by watching her. She is patient yet persistent, and that is what he needs.

Josh likes to “do school” because he sees his brother and sisters doing their schoolwork, and he wants to be like them. As the youngest sibling, that is his prime motivation. In fact, I often say he has Youngest Child Syndrome. He wants to do whatever he sees them doing, and that is so good for him. He has learned to play games on the computer, hit a ball pitched to him, make a basket with the basketball and draw elaborate pictures, all because he started out imitating one of his siblings doing those things. When he sees them involved in something interesting, he’ll call out “Me do it!” And then he does.

His siblings are on the phone a lot, and he wants to talk, too. We have found that handing the phone to him when a telemarketer calls makes him very happy. He jabbers away in his own language, then scowls and says “Hey!” when he hears the inevitable dial tone.

Occasionally, his desire to do what the others do gets him in trouble. His teenage siblings have computers in their rooms, bought with their own hard-earned money. Joshua has been known to go on one of their computers and “work”. After he opened some windows and deleted a few things, they learned to put passwords on important functions.

We feel that his natural inclination toward mimicry would not be good for him if he were in special education. He has enough difficulties without adopting the idiosyncrasies of children with other disabilities. If he’s going to mimic others, we’d rather he mimic normal kids. Education experts call that mainstreaming: putting kids with disabilities into classrooms with normal kids. But we don’t want him to mimic schoolchildren- we didn’t want our other kids to do that either. We’d prefer that he learn from watching his siblings.

Now Josh is eight, and we’ve gotten to the point that he can sit working with me one-on-one for an hour at a time. Although a psychologist we hired once told us that he relies too much on his visual strengths, we find that he learns better visually. So we do lots of puzzles and games. He likes sequencing cards and number puzzles. He can read about thirty words now, and writes several of them. He loves books; right now he’s on a “Where’s Waldo” kick. I buy curriculum for him the same way I did for his brother and sisters. If it looks like it will work well for that specific child, I buy it. If it doesn’t work, I try something else. In Josh’s case, one of my best purchases for him has been Rod and Staff’s series of preschool workbooks.

I have found the grocery to be a good learning experience for him. I let him push the cart, but he has to follow my directions or I’ll take it back, which he can’t bear. We count everything: cans, loaves of bread, bags of chips, you name it. We work on listening skills; I tell him where to turn, and ask him to get certain things within his reach (“We need three of those green cans, Josh- put them in the cart gently, please.”) It takes us a while to go through, and sometimes people stare at us. But repetition is so important for him that I have gotten used to shopping that way. When I shop alone, I get done so much faster. But I try to enjoy the process when I am with him. It has taught me patience.

His teenage siblings became crackerjack baby-sitters, in much demand in our neighborhood, and I think he was part of the reason. They were used to baby-sitting their brother, who had to be watched every minute, because he would break out of the house and run away if you weren’t keeping an eye on him. After watching him, the neighbor kids were a breeze.

Josh’s big brother taught him to play Sega (a video arcade game), which has given him great pleasure. Josh and his dad also play golf on the computer together. My husband works at home, so they get to spend a lot of time together. In fact, all of my children have benefited from having their dad at home, and Josh gets the credit for that. By the time Josh was almost 2, I was having a hard time keeping up with the kids and the house and the homeschooling. Josh was still on an apnea monitor, and the alarms during the night (mostly false alarms) left us exhausted. My husband started his own business so he could be at home and help me out. That decision has benefited our family in countless ways since then, and it was all because of Josh.

So I guess in a way we are the Down Syndrome Family. Josh’s disabilities impact us daily. We keep locks at the tops of all exterior doors so he doesn’t break out. We have to keep one eye on him at all times, so that he doesn’t pick up a phone and dial China, or microwave his brother’s watch (don’t worry, we caught him in time). Everything we want to do requires that somebody stays home with Josh, or brings him with and keeps an eye on him. When he was small, he was so hard to share a room with that my husband had to add a bedroom to our house, specially equipped with grounded outlets and a built-in bed with a gate, to keep him from roaming the house or falling down the stairs when everyone else is asleep at night.

But we aren’t the Down Syndrome Family I envisioned that night on the way home from the hospital. We have not devoted our lives to carting Josh between experts. We have tried to keep our efforts to help Josh to a manageable level, and have balanced them with the other kids’ activities. His big brother and sisters have been scouts and camp counselors and sports participants. They have been active in homeschool group activities and church activities. We marvel at their accomplishments as much as Josh’s.