My Son’s Impossible Dreams

Posted on January 31, 2013 by Barb

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.

Book List for Homeschooling a Child with Down syndrome

Posted on November 12, 2012 by Barb

As I mentioned in my recent post on homeschooling a child with Down syndrome, there were many books that helped me as I homeschooled my son with Down syndrome. Not all of them were “school” books.

There’s a certain amount of acceptance that parents of kids with disabilities must gain, and it takes a while to get there. Sitting down to work with your child makes you realize just how hard it is for him to learn things, and that can really get you down.

Some books have helped me understand that homeschooling him is a process that will go on in one form or another for his entire life. It’s not like it was with my older kids, where we worked together for a certain number of years and then sent them out into the world. This guy has a lot of hurdles in front of him, and while I try not to be negative, it was plain to me pretty early on that he would not attain anywhere near the level of education his siblings would. That was a pretty depressing realization for me, and I had to find encouragement from a multitude of sources, including books, in order to keep homeschooling him.

(Sometimes, when I got discouraged, I thought about what it would have been like for him in school, and that usually got me back on track. After all, who had time to sit patiently with him each day and work and play if not me? No teacher or aide would have had time to work with him one-on-one, which is what a distractible guy like him needed, and no teacher or aide could know him as well as I do, anyway.)

Keep in mind that while these books helped my son and me, that doesn’t mean they’ll work for all parents homeschooling kids with Down syndrome or other developmental disabilities. Children differ in temperament and ability, and so do parents. There’s a wide range of abilities among children with Down syndrome, and they develop at different rates, although most do develop more slowly than your “typical” child.

In my son’s case, there are other issues. Due to central apnea during his infancy, he may have sustained minor brain damage. His doctor said we could run a lot of expensive tests to find out for certain if and where such damage occurred, but he felt that we’d be spending a whole lot of money without being able to change things. We agreed. But what our son went through makes it harder for him to learn certain things. Even his long-time speech therapist said some of his speech patterns are not typical of Down syndrome.

So he is a unique individual, and so am I, thus don’t rely on this booklist to cure what ails you and your child. On the other hand, I’ve always felt that if I learned one useful thing from a book, it was worth reading. So hopefully, you will find at least some tidbits in these books that will make them worth your time.

(Do keep in mind that the curricular-type books here are not the only things I used to homeschool my son. We also did a lot of hands-on work. But the purpose of this post is to share books we’ve found helpful.)

Christian Homes and Special Kids by Sherry Bushnell and Diane Ryckman
This book is a great resource and encouragement for all parents homeschooling their child with special needs, and I’m not just saying that because there’s a chapter about our family in the book. It’s just a book written by parents who want to share their experiences and their favorite resources. ISBN-10 09744332-0-9
Available at http://www.nathhan.com

Helps for Special Education Teachers by Eileen Shaum
I bought this book from Rod and Staff, one of my favorite sources for homeschooling books. It helped me establish a well-rounded foundation for my work with Josh. It helps you set goals and gives you activities for reaching those goals.
Available at http://www.rodandstaffbooks.com/item/19031

Rod and Staff’s Preschool Series of Workbooks
We bought and worked through the entire series twice, that’s how much we liked these workbooks. Lots of cut-and-paste educational activities. Pages are nicely illustrated (farm animals, not licensed characters!) without being too busy and cluttered as many workbooks are. I used this series with dd17 when she was little and wanted to do school with the big kids, so that’s how I knew about them when dsds15 reached that developmental level. I can’t say enough about these workbooks!
Available at http://www.rodandstaffbooks.com/item/10020
NOTE: You can usually find Rod and Staff products at homeschool conference vendor halls. I highly recommend their products for all children.

Teaching Reading to Children With Down Syndrome: A Guide for Parents and Teachers (Topics in Down Syndrome) by Patricia Logan Oelwein
Excellent resource! This book offers complete instructions for building a reading program for your child. By the way, I have been to two of Ms. Oelwein’s seminars and learned so much. If you get the chance to attend one, go! You won’t be sorry.

Teaching Math to People With Down Syndrome and Other Hands-On Learners: Basic Survival Skills (Topics in Down Syndrome) Book 1 by DeAnna Horstmeier, Ph.D.
Personally I didn’t find this book as useful as Patricia Oelwein’s book, but your mileage may vary. I do like the fact that this book is intended for people of all ages with Down syndrome, not just children. I attended Dr. Horstmeier’s seminar and enjoyed her stories about her adult son with Down syndrome.

Communication Skills in Children With Down Syndrome: A Guide for Parents (Topics in Down Syndrome) by Libby Kumin, Ph.D., CCC-SLP
Filled with ideas for encouraging proper speech development in your child.

When Slow Is Fast Enough: Educating the Delayed Preschool Child by Dr. Joan Goodman
An eye-opening book that helped me understand exactly what early intervention is all about.

Teacher Created Resources

My son is a workbook guy: he gets great joy from finishing a page and getting a star on it. We have had success with some of TCR’s math workbooks. I love how they have several workbook pages for each step in the learning process. I photocopied the pages over and over and over until he got the concepts (it can take a long time).

You can buy TCR books online, but I recommend going to a teacher store and flipping through them yourself to see which might work for you and your child. If that’s not convenient, you can download many of their titles as eBooks at: http://www.teachercreated.com

Here are two of their books that we really used a lot:

Take It To Your Seat Learning Centers published by Evan-Moor
These pre-made manipulative activity books called “Take It To Your Seat” are really good–clever learning projects all ready to be cut out, laminated and used regularly. Two we enjoyed: Take It to Your Seat Math Centers, Grades K-1 and Take It to Your Seat Phonics Centers, Grades K-1.

Buki Books
We love Buki Books! They’re educational but so much fun that kids don’t mind. There are dot-to-dot books up to 1-150 (painless way to learn number sequencing), Calc-U-Color books (color by number where you have to figure out the number first using addition or subtraction), maze books and more. They have several age levels for each type of book. Once again, I found these in teacher stores, but you can also find them online, like this particular favorite of my son’s: Mosaic Hidden Pictures. In teacher stores, they’re often found on freestanding kiosks. They’re very colorful and hard to miss!

Betty Lukens Felt Activity books (BettyLukens.com) Great for teaching Bible stories to kinesthetic learners. At 15 my son still liked looking at these books and arranging the felt pieces on them. I think the fact that they’re realistic-looking and not babyish helps.

50 Bible Paper Pop-Ups: 3-D Visuals for Hands-On Learning Fun by Robin S. Parimore and Lynne Marie Davis
We worked our way through this book for a year. Requires cutting skills. I combined each project with the appropriate Bible story.

The Imperfect Homeschooler’s Guide to Homeschooling by Barbara Frank
My book has a chapter in it on homeschooling your child with special needs.

The Dance Goes On by Roberta Bandy
The true story of how the birth of a child with special needs grew the faith of a young couple. We knew the Bandy family for years; their story is so encouraging!

Homeschooling Your Child with Down Syndrome

Posted on November 2, 2012 by Barb

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.)

Back from the Quilt Festival

Posted on June 26, 2012 by Barb

My friend and I are back from our vacation. Many thanks to those who sent us best wishes! We had a great time.

We went to the Shipshewana Quilt Festival in Shipshewana, IN. The show itself was wonderful, with some of the most amazing quilts I’ve ever seen. Quilting has become a sophisticated art form.

There was also a display of World War II quilts in the Hudson auto museum; we enjoyed that, too.

We hit all the best shopping spots in Shipshewana, including Yoder’s Department Store. We also visited several small Amish shops in the outlying areas and came home with some nice fabric, including several pieces for a quilt I’m making for my first grandchild, due this fall. 🙂

While in the area, we tracked down several quilt gardens, which were just beautiful despite the drought in the region. Here’s one in Elkhart, IN:

We also enjoyed the barn quilts on various buildings.

I spent a lot of money at the Amish bulk store, where I bought 25# of natural sugar (cane, not beet), several pounds of three varieties of popcorn for 60 cents a pound (my husband makes popcorn almost every night), and 5# of cocoa for $1.09 a pound, along with some other goodies that we will enjoy (for quite some time!)

But the very best part of our trip was the night we went to an Amish farm.

While there, we were served a yummy homemade dinner (salad, fried chicken, Salisbury steak, homemade bread, buttered noodles, stuffing, gravy, green beans and two kinds of homemade pie!) followed by a quilting bee.

What fun! There were nine of us quilter-tourists plus two Amish women who quilted with us. We chatted while we worked, which is how we learned that the Amish lady quilting next to us had ten children, the youngest of whom has Down syndrome. When we told her that both of our youngest sons have Down syndrome, she was clearly quite touched and it gave all three of us a lot to talk about. We had such a nice time that night.

Meanwhile, back at the ranch, the boys and their dads were doing just fine without us. I think we had the harder time adjusting to being away from them. We really missed them, plus it felt weird not to have to make meals for anyone; we just went out to eat whenever we got hungry. Between outings, we’d take a break in our room and comment on how quiet it was without our families around. And before we checked out of our hotel, we both scoured the room, looking under the beds and in the drawers out of habit from years of making sure our kids hadn’t left anything behind.

We returned home very tired, but refreshed just the same. If you get the chance, check out Shipshewana, IN. It’s a nice place to visit. And if you’d like more info on how you can quilt with the Amish, just let me know and I’ll send you the contact info.

We’ve Escaped!

Posted on June 18, 2012 by Barb

By the time you read this, I’ll be on vacation with a good friend who, like me, happens to be a retired homeschool mom. Between the two of us we’ve homeschooled nine kids; she has five, I have four, and both of our youngest sons have Down syndrome, hence we’re still very much moms on a daily basis.

So we aren’t just leaving our husbands to do the cooking. We’re leaving them with their often-rambunctious 19-year-old sons who have lots of energy, make quite a few demands, and who each have a great sense of humor as well as a spare chromosome. This should be interesting!

I’ve never done anything like this before. I’ve never even been away from my husband for more than a night (except when I had the babies). But I’m really excited about hanging out with my friend, seeing lots of quilts (we’re going to a quilt festival) and eating at any restaurant that doesn’t have golden arches (my son’s favorite).

After I get back, I’ll report on what happens when two recently retired homeschool moms escape the ties that bind, if only for four days 🙂 See ya!