My Son’s Impossible Dreams

My son and I have a daily routine of eating breakfast together while I also try to read my Bible and a chapter of a Christian book.

I use the word try because while I’m trying to read, Josh is trying not to interrupt me. He has access to me all day long, so it’s good for him to learn not to interrupt. He just hasn’t learned it yet.

This morning he was discussing his desire to buy a black car, in which he will drive to the next state to see our old neighbors, his best friends from childhood. After a little while, he segued into his plans to get married and have a baby boy and baby girl. (We’ve heard this lecture more frequently since his first nephew was born last fall.)

We listen to him talk about his plans all the time. Without the right mindset it can be quite depressing, because he’s not ever going to be able to buy a car (most people with Down syndrome can’t drive, and he’s not able to hold down the kind of job, i.e. most jobs, that would allow him to save up for a car anyway). As for becoming a parent, even if he had the maturity to be a parent, which he doesn’t, he’ll never have the ability because men with Ds are sterile.

And yes, these facts have depressed me in the past and occasionally still do. The irony of this morning is that the book I’ve been reading after my daily devotions is Heaven by Randy Alcorn, and check out what was in today’s chapter:

Joni Eareckson Tada writes from her wheelchair, “I haven’t been cheated out of being a complete person—I’m just going through a forty-year delay, and God is with me even through that. Being ‘glorified’—I know the meaning of that now. It’s the time, after my death here, when I’ll be on my feet dancing.”….God is big enough not only to fulfill your dreams but also to expand them as you anticipate Heaven. When you experience disappointment and loss as you faithfully serve God here, remember: the loss is temporary. The gains will be eternal. Every day on the new Earth will be a new opportunity to live out the dreams that matter most.

I believe in God, not coincidences, so I know this specific passage turning up in my reading while my son was expounding on his future (impossible) plans is God reminding me that while there are many things my son will not be able to do on this earth, he will not be hampered by his disability in the next life.

I find this very comforting, and I hope other parents of kids with developmental disabilities find it comforting, too. But it also applies to parents of kids who don’t achieve their dreams: parents of the lovely young woman who dreams of the satisfaction of marriage and children but never finds a good man to share that dream with, or parents of bright young people with promising futures who suffer brain injuries in accidents and are left seemingly a shadow of their former selves.

It’s so easy to get caught up in an earthly perspective that makes you view everything in terms of now, but the book Heaven is reminding me that my perspective’s timeline is much longer than merely “now.” Great book, by the way; many thanks to my husband for recommending it to me.

Homeschooling Your Child with Down Syndrome

Momto4 left this comment on my old blog:

I had my daughter in public school, she is 6 in kindergarten and has down syndrome. They haven’t a CLUE what they are doing. I was very disappointed in their lack of teaching. I will be homeschooling her and it will be interesting as I have never done such a feat. Is there anywhere one could go to help start off in kindergarten for my little girl? Is the curriculum the same? So many many questions. I do know this, anything is better than what we have now.

Since there might be other parents with this same problem, I thought I’d post my response here, where they can find it easily.

Momto4, I admire you for taking matters into your hands once you became unhappy with your daughter’s schooling experience. Pro-active parents are the best asset a child with a disability can have.

Every child with Down syndrome has unique abilities and unique needs, and that’s why I did not use a specific curriculum with my son with Ds, who is now 15. Having homeschooled three older children, I could see that my son was not at or near grade level in scholastic subjects at age 6. I decided instead to test him (using a test I rented for a very reasonable cost from HSLDA). There weren’t any surprises in the test results because I’d been working with him since he was 3 or 4, but you might find such testing very useful for you and your daughter. It will give you an idea of where to concentrate your efforts.

Anyway, after testing him, I continued working with him as I had since he was small, using my own IEP to chart the path we’d need to follow at his speed. We read many, many books, he practiced his printing every day, and we played lots of board games that stressed the different skills he needed.

For example, he had real problems grasping numbers conceptually. He could recite numbers but did not understand what they meant. We played the game “Trouble” once or twice a day and that helped him understand what “six” meant, because that’s the best number to get in that game. BTW, I frequently found the best educational games (sold in teacher stores) discounted at TJMaxx and Marshalls. For my son, educational games where he learns by using his hands instead of just sitting and listening are a real blessing.

My son is speech-delayed, like many children (especially boys) with Ds. I sat in on his sessions with the speech therapist and imitated what she did with him at home on a regular basis. We could not afford thrice-weekly sessions, which had been recommended, but at least this way he was getting daily speech practice. One of the most effective methods of working on speech sounds with him was something the therapist taught me: he’d say a word or sound and I’d reward him with a puzzle piece. So he had to make 100 sounds to get all the pieces of a 100-piece puzzle, and then we’d work on the puzzle together. (We still do this at least once a week, because he really enjoys it.)

In addition to working on his letters, number concepts and speech, we did lots of artwork, including working with crayons, paint, stampers and clay. He loved this, and it was a nice break from the “school” work. We also got him out in nature by going on bike rides (we used a third wheel attachment on my husband’s bike because our son loved to run off and we didn’t want to teach him to ride a bike on his own, thus helping him get away from us more quickly!) Visits to parks, zoos and the aquarium also widened his horizons.

One more thing we did as part of his “school” was to teach him how to work around the house. He’d seen the older kids doing their chores and wanted to be like them, so this wasn’t hard. In fact, he’s been a very eager helper. He also likes to work with his dad in his workshop. (I can still picture him at around age five or so driving nails into a piece of wood with great intensity.)

You’ve asked for specific materials that will tell you what to do with your daughter. There have been several books that helped me learn how to work with my son, and I will list them in a subsequent post. In the meantime, I’ve asked another blogger who homeschools a daughter with Ds to answer your question. You’ll find her post here.

The bottom line, Momto4, is that you are really doing something wonderful for your daughter. Homeschooling her will mean she will get much more one-on-one instruction, or “face time” as I like to call it. Not only is that much better for her, but it will help you learn more about how she learns. She’ll also be able to avoid the negative effects of school socialization, such as picking up bad habits and being bullied because of her disability. And, of course, the bottom line is that you know her better than any teacher can know her, so she’s getting a teacher who knows her well and wants the very best for her. I think your daughter is very fortunate to have you for a mom.

(If you enjoyed this article, you may also like Book List for Homeschooling a Child with Down syndrome.)

Video Games and the Developmentally Disabled

Recently fellow blogger and homeschool mom Amy tweeted some interesting news: a new study suggests that kids with Down syndrome can benefit from playing the Wii even more than from occupational therapy.

Now this is just one study. Also, our son Josh has been fortunate that he hasn’t needed occupational therapy. But our experience with the Wii has been that Josh is not only very good at playing video games on the Wii and enjoys it tremendously, but that it’s been good for him in other ways, too. For instance, when he doesn’t understand written directions on the screen, he’ll write them down and show them to us so we can explain them. He sometimes keeps those directions and refers back to them. So he’s practicing his printing and reading skills.

Most importantly, the Wii levels the playing field between Josh and his siblings, and between him and other teens. He may not be able to keep up with them when playing basketball or baseball, but they’re all amazed at how often he beats them at Wii games. It’s the one area where no one cuts him any slack and yet he can win. So it does wonders for his self esteem. That alone makes it a pretty valuable tool.

I know many homeschooling parents are opposed to having video game systems in the home. I was, too. In fact, we never allowed one in our home until my sister sent my kids a system when they were teens. They played it a lot for a time but none of them became addicted to it.

Josh, on the other hand, fell in love with it early on. But it’s turned out to be a great tool for him. I think homeschooling parents should consider allowing these systems as long as they keep control of them. (They may even find they like playing them; my husband plays against Josh for a little while most evenings, and while he does it for Josh, he sure looks like he’s having fun, too!)

Angry Dads

My husband sent me this video (yes, we email back and forth even though he’s in the next room) and told me he understood this dad’s frustration.

After watching it, I had to agree. I know this dad scared most of the kids on the bus, but he was defending his daughter, who has cerebral palsy. Maybe now the culprits will leave her alone, and the others will be too scared to ever pick on her.

I am so glad we homeschool our son…..I can’t imagine how hard this kind of situation would be for him, and how angry my husband and I would be if bullies were tormenting our son on the bus.