Busting Myths or Overgeneralizing?

My m-i-l gave me a copy of this Chicago Tribune article about raising a child with Down syndrome.

I'm kind of torn here, because I agree with both the moms who say their children are a joy and those who say making Down syndrome look like butterflies and sunshine could mislead people. The bottom line is that while having a child with Ds is both good and difficult, it's not up to us to decide whether a fetus with Down syndrome should live. God has already given that child life. He made the decision...it's not ours.

I hope all parents of unborn children with Ds are being told that there are parents who will adopt their child if they can't handle him or her. One agency that does that is CHASK.

A Down Syndrome Pregnancy in the Spotlight

What Sarah Palin went through in her pregnancy with her son Trig was not easy. Being in the spotlight as the governor of Alaska, she had to work hard to keep her pregnancy and the baby's subsequent diagnosis out of the news until she and her family were ready for what might happen once the situation became public.

Whether or not we know about our baby's diagnosis before birth (I didn't know until my son was a day old), parents of babies with birth defects have to make a lot of hard decisions about how and when to tell people, how to accept the changes in their lives and how to move on. This article goes into detail about how Sarah Palin and her family dealt with her pregnancy and Trig's birth. Many of us can relate to it, I think.

A True Story of God's Provision

An American playwright, known not only for his highly acclaimed works ("Death of a Salesman," "The Crucible") but also for his marriage to the world's most famous screen siren, dies without admitting to the big secret in his life...the son with Down syndrome whom he institutionalized soon after birth. But after the playwright's death, it's discovered that he left his son a portion of his enormous wealth equal to that of his siblings, and now his son is set for life financially.

You know what struck me after reading this true story? How God looked out for the young man with Down syndrome....how his life turned out to be full of the love of others, even though his earthly father rejected him.

A friend of mine and I (we both have children with Ds) recently discussed wills and special needs trusts. She reminded me that God loves our boys and will look out for them. This article told me the same thing.

As a writer, I also found the ramifications of this father's act to be especially interesting:

It would be easy to judge Arthur Miller harshly, and some do. For them, he was a hypocrite, a weak and narcissistic man who used the press and the power of his celebrity to perpetuate a cruel lie. But Miller's behavior also raises more complicated questions about the relationship between his life and his art. A writer, used to being in control of narratives, Miller excised a central character who didn't fit the plot of his life as he wanted it to be. Whether he was motivated by shame, selfishness, or fear—or, more likely, all three—Miller's failure to tackle the truth created a hole in the heart of his story. What that cost him as a writer is hard to say now, but he never wrote anything approaching greatness after Daniel's birth. One wonders if, in his relationship with Daniel, Miller was sitting on his greatest unwritten play.

Who knows if he could have gotten his greatest play out of it? What matters is that he missed out on knowing his son, which was an enormous price to pay:

He had a bank account and a job, first at a local gym and then at a supermarket. He went to parties and concerts, and he loved to go out dancing. He was also a "natural athlete," says one social worker. He learned to ski, and competed in the Special Olympics, in that sport as well as in cycling, track, and bowling. "Everyone loved Danny," says Rich Godbout, who ran the supported living program. "His greatest joy was helping people. He would insist. If someone needed help moving, Danny was always the first guy to volunteer to help."....

Some wonder why Arthur Miller, with all his wealth, waited until death to share it with his son. Had he done so sooner, Daniel could have afforded private care and a good education. But those who know Daniel say that this is not how he would feel. "He doesn't have a bitter bone in his body," says Bowen. The important part of the story, she says, is that Danny transcended his father's failures: "He's made a life for himself; he is deeply valued and very, very loved. What a loss for Arthur Miller that he couldn't see how extraordinary his son is."

Lookin' Good, Little Brother

A lot has happened politically and culturally since I posted last week about Sarah Palin's baby boy. Let's not go there. Instead, I want to share this cute moment at the convention last night. Dd17 and I loved this! We just about fell off the sofa laughing. Anyone who's ever had or been a sister can understand :)

The Help I Wish I'd Had...

I wonder if you realize how lucky you are.

Back in the day, I’d have given my eye teeth to have somewhere to go and learn about other homeschoolers. After all, there weren’t all that many of us around yet, and the homeschoolers I knew didn’t usually have much in common with me other than the fact that we were all weird enough to enjoy being with our kids.

I recall that one used Christian Liberty Academy Satellite School, a few used Bob Jones and pretty much everyone else used A Beka, including me. But it wasn’t long before I began to see my children becoming bored, and I started reading up on different ways to homeschool.

Also, I learned about homeschool advocates like John Taylor Gatto, whom no one else seemed to have heard of, and I wished I knew others with whom I could talk about these things. And of course, at that time I was the only homeschooler I knew with a disabled child that I hoped to eventually homeschool. How I wish I’d had access to other parents homeschooling their kids with Ds back then.

I would have loved being able to visit the blogs of other homeschooling parents! The beauty of the blogosphere is that you choose whether you want to be “the fly on the wall” of someone else’s homeschooling life, become close friends with them, or end up somewhere in the middle.

That’s why I tell new and prospective homeschooling parents to visit each week’s Carnival of Homeschooling. It’s a great way to get to know others who homeschool their kids. I’ve "met" many awesome homeschooling moms because of their blogs, or because they’ve come to mine.

This week’s Labor Day edition of the Carnival of Homeschooling is hosted by Carol Topp. Last week’s edition was hosted by a terrific homeschool mom named Renae. If you have a blog, you can submit one of your posts each week just by going here.

If you ever want to know where upcoming carnivals will be held, or where a past carnival was posted, just visit the Cates. They started the Carnival of Homeschooling nearly three years ago, and we all owe them an enormous debt of gratitude. It’s because of their work that parents who homeschool today have such a wonderful source of homeschool friendship and information, right at their fingertips!

Speaking of blogs, I’ve been asked what happened to my old blog. I’m sorry to say it’s been taken down by Homeschool Blogger. Of course, it’s their right to do as they please with their bandwidth, but I wish they'd left my old blog up because recent readers found many of the posts useful. I stopped blogging at HSB in December 2006 because of all the technical difficulties I was encountering there. However, the good news is that I did save the posts, and I hope to use some of them in an upcoming book and/or ebook. :)

What You May Not Know About Sarah Palin

CNN is reporting that Republican presidential candidate John McCain has chosen Alaska Governor Sarah Palin to be his running mate for November's presidential election.

I haven't yet considered the political implications of this choice, or even the fact that McCain has chosen a female veep candidate. I'm more excited because Ms. Palin is the pro-life mama of adorable little Trig Palin, who was born four months ago and has Down syndrome. I'm picturing future photo ops and articles that will hopefully clue people in to the gifts that a child with Ds can bring to a family. What an opportunity! :)

Every Child Has Special Needs?

Got back from several days in Chicago yesterday, weary but happy. It was the first time I've ever taken a trip alone with dsds15, and it went very well. We stayed in a hotel near O'Hare with ds23, who was in town on business. This was a great help to me, as I could take a shower without worrying that my youngest was downstairs hailing a cab or something, because his big brother kept an eye on him for me.

Came home very tired, and found this in a homeschool email newsletter I receive:

Todd Wilson, Familyman Ministries

I have special needs children. In fact, ALL my children are special needs children. First, there's Ben (15) who really needs me to listen to him talk . . . because he talks a lot. Then there's Sam (13) who likes to tease but who needs me to know when it's time to stop teasing and be understanding. Katherine (11) needs me to be extra gentle during these "changing" years.

Ike (9) needs lots of one-on-one attention. Abe (7) needs snuggling and closeness. Maggie Rose (4) needs me to help her use self-control. Cal (2) needs me to read books to him and Jed (7 mos.) needs me to smile at him.

Now before I get an angry note from some well-meaning mother who insists that I'm making light of or minimizing special needs children, let me say that I am not doing that at all. I know some of you have children who demand incredible sacrifice and labor on your part. I know you lie awake at night wondering if you can make it through another day. I'm certainly NOT trying to equate my "special needs" kids with your "special needs" kids. But I am trying to point out that ALL of our children have special needs and that we've done our children and ourselves a disservice by labeling our special needs children as "special needs." They're just children like all the rest.

Yes, they have special needs, but as I've already described, all children do to some extent. Amazingly, God has given you the abilities to meet those special needs and has given your children the mom and dad just right for them. You don't have to feel inadequate or apologize for their lack of progress, or label them as a "special needs" child.

All you have to do is love, train, and prepare them for THEIR future. Oh, yeah, and one more thing . . . . . .
Be real,
Todd

Wow. That didn't sit real well with me yesterday. I pictured myself reading that back when my son was little and we were trying to adjust to homeschooling three kids while caring for a toddler on an apnea monitor who couldn't keep weight on because of severe reflux, and I think that attitude (no matter how well-meaning) would have really hurt me.

Also, having just seen family in Chicago who have a daughter (our niece) with delays of unknown origin and how they have to fight to get the right kind of education for her out of their local school district, and having some idea of the pain they have gone through with and for her, his message kind of got me going:

Hi Todd,

I read your column in TOS' THM occasionally, and usually find it amusing. But I've got to tell you that you stepped in it today. I get your drift about all of our children having special needs, but you're off track here, and I'm afraid you probably hurt some parents of children with disabililties.

We have four kids, currently 15, 17, 23 and 24. They were all homeschooled from birth. Like your children, they're all special. But our youngest has Down syndrome, and let me tell you, once you have a child with true special needs (i.e. mental retardation, not a need for extra hugs), your entire life changes, and it will never be the same.

Todd, kids with special needs aren't kids like yours (and my older three) who simply need to gab a lot or snuggle a lot. We're talking about kids with major physical and/or developmental issues. This is life-changing stuff, not "Love Language" preferences. Flip through an issue of the wonderful magazine NATHHAN puts out and you'll see what some families' daily lives are like. You might also want to read The Dance Goes on by Roberta Bandy for a true-life description of the joys, blessings and heartache of a Christian family whose oldest son was born with a chromosomal defect.

I'm certain you didn't mean to offend anyone, but some of your comments came across as a bit flippant, to say the least. Like you, we have a 15-year-old son who needs us "to listen to him talk...because he talks a lot." Of course, his speech is extremely delayed, so we have to work to understand him. He may well be telling us about what happened in one of his beloved Winnie the Pooh videos, which he's told us a hundred times before, but it's important to him, so we listen. BTW, at 15 he can't play outside by himself because he runs off and has no sense of danger. He was in diapers until he was almost eight.

We love him dearly, and are grateful that God gave him to us just as he is. But telling us or other parents that all we have to do "is love, train and prepare them for THEIR future" is incredibly naive. Newer parents of the disabled (who are still coming to terms with their child's disability) are likely to consider it insensitive, and I would agree.

Todd, be real: please consider issuing an apology.

Sincerely,
Barbara Frank

Each of my kids is unique, no question. And they are all special and very dear to their dad and me. But one of them does have special needs. We didn't give him that label. He got it when he arrived with an extra chromosome. It is what it is.

Homeschooling a 12th Grader.....Again

It’s a bittersweet fall for me, as I once again have a 12th grader.

The first time it happened, it was exciting: wow, we’ll soon have our first homeschool graduate!

The second time it happened, the very next year, it was still exciting, but it went by so fast I couldn’t believe it.

This third time is different. I now know firsthand how very quickly this year is going to pass. One of the great things about homeschooling for high school is that your teens can do it their way, which means lots of stuff going on. And we all know how time flies when you’re busy.

Reaching the end of 12th grade, no matter how gratifying, is tough on Mom. Another one ready to fly the coop. I miss the first two a lot; I can’t imagine letting go of this one. Let’s not go there right now, ok?

Instead I want to talk about homeschooling for 12th grade. When I was in high school, senior year was pure torture. It seemed like such an afterthought. After all, by December I’d already been accepted to the university. Hanging around high school seemed so….anticlimactic.

But there I was, marking the time until I was released.

My kids didn’t have that experience. Each one’s 12th grade year has been different.

Our eldest made it very clear that she didn’t want to go to college. So we used that year to do projects that would give her a leg up on the independence she craved so much. (They’re the basis of Life Prep.) She worked through a math-review-for-adults book from the 1960s (my dad had used it to prepare for his military exams, and for some reason I had it on my bookshelf.) She read some good literature. She put in many hours a week watching a neighbor’s baby while she was at work (and bought a car with her earnings). She ran a fundraising table for Rock for Life. She got into local concert promoting. And then April came, and we called it graduation for the one-woman Class of 2001. She moved out on her own two years later.

Number two was a different story. He wanted to go to college. He studied some subjects at home, plus took a noncredit Chemistry course at one local college and Spanish at another. The latter was at the community college, so he got college credit for it. He was on the board of our church’s youth group, a great job for someone with an eye for ministry. He also worked at a local grocery store. He spent the year after his 2002 graduation doing much the same things, except he didn’t study at home. In fact, he was rarely home! So 12th grade and real life a year later were very similar. And then he went off to college. Shortly after college graduation, he got married and moved to his wife’s hometown, ten hours from here. Another one flies the coop.

Now we come to number three. She has neither the fierce independent spirit of her sister nor the academic desires of her brother. But she is very creative and has many interests. This year will be spent exploring them further. Sure, we’ve got some formal studies planned, and she’ll continue to work her way through Life Prep, too. She’s also taking a few for-credit college classes (one online, one in person). And if there’s time, she’s going to enroll in a Christian Writer’s Program. But she’ll also be playing her violin in the county’s youth orchestra. She hopes to keep growing her craft business and her web design business. And she just got a new job in a coffee shop, where she’ll be working a few days a week. Before we know it, the year will have flown by, and it will be graduation time again.

Looking back over the 12th grade experiences of all three of my older children, I see that they look more like real life than a school year. That satisfies me. It means my kids weren’t marking time the way I did senior year. I realize they can’t appreciate that the way I do; from birth to age 17 or 18, all they ever knew was homeschooling. But it makes me feel good to know they had it better than I did.

Number three doesn’t want to leave home yet; she says she’ll still be around for a while. That should make this third high school graduation a little easier on Mom. :)

Still, in many ways, this year marks the end of homeschooling as we knew it. After number three graduates, homeschooling will be the day job of our 15-year-old with Down syndrome and me. He won’t ever need our very useful (if not always loved) copy of Saxon Algebra, or our A Beka High School Literature series. By the time he reaches 12th grade, he’ll still have many years of study left, and he’ll be nowhere near ready to leave home. That’s ok. His senior year will consist mostly of real life, just as it did for his brother and sisters. And like the others, he’ll be just fine.

Playing Catch-Up

I've been pretty busy lately, but I didn't realize how busy until I noticed that I hadn't posted here since Friday. Seriously, it seems like I just posted a day or so ago. Time flies when you've got a long to-do list, I guess.

So I had better get caught up here. First off, you won't want to miss this week's edition of the Carnival of Homeschooling, which is being sponsored by Janice Campbell, who very kindly parked the cover of my book next to my post. Thank you, Janice! BTW, you can tell that many people are getting back to homeschooling this time of year by the great variety of posts at the carnival this week.

Next, I want to thank Melissa Markham for the lovely review of my book. We're offering a special price on the book, but only for those who visit her blog and read the review. Again, thanks, Melissa!

I don't know where the time went since Friday, but part of it was spent shopping so I could do another round of bulk cooking. The nearest Sam's Club is an hour away, and just happens to be down the road from the community college where dd17 started classes this week (more on that in an upcoming post). It just made good sense to combine those two trips. After stocking up at Sam's yesterday, I spent today making red sauce (40 cups, now frozen in bags), chicken parmagiana (five dinners) and pork ribs with sauce (two dinners).

Before we went to Sam's, we went to JoAnn Fabrics, where I bought three yards of a layered set of fabrics called Warm Windows. It was $27/yard but I had one of those 40% off coupons. I'm going to make window covers for our bedroom. We just signed another year's lease on the house we're living in, despite the difficulty we had last winter keeping this house affordably warm (that was the only downside to this house; it's wonderful in every other way!) Since we're staying another year, I'm ready to make a few improvements.

In the coldest month last winter, it took $300 worth of natural gas to keep the house at 65 degrees. Not good! So the landlord is going to have the boiler tuned up, and we're going to try to make the house a little tighter against the cold Wisconsin winds. After I make the window covers, I'm going to hem the thermal drapes I recently bought to go over the dining room windows. The curtains and the Warm Window fabric are a creamy white, so we can take these window treatments with us to the next house, wherever and whenever that might be.

I'm hoping to get that work done over the next few days. Next week, dsds15 and I will be heading to Chicago, where we will visit with some dear homeschooling friends. Ds23 happens to be there on business those days, so we're going to meet up with him, too. It will be great to see them all!

Get Rid of Her

Here's a headline that caught my eye this morning:

When my little girl was born with Down's, I felt like I'd given birth to an alien and just wanted to get rid of her

Yow! Of course, I had to read it. I guess I was led by that same impulse that makes you look at a car wreck even though you're afraid you might see dead bodies. And I was prepared not to like this woman, just going by the headline.

But you know, it's actually a pretty poignant story (Kleenex alert!) I can't relate to her feelings when she first saw her little girl, because I loved Josh before he was born and my feelings only intensified when I found out about his spare chromosome. But I've known other moms of kids with Ds whose feelings more closely compared to this mom's than mine. It took courage for her to admit it.

Her little girl is absolutely adorable. I do hope this mom understands that God is using little "Grace" in her life to change her. I pray that she comes to know God, if she doesn't already, and that He gives this little girl the best medical care available.

The Power of a Diagnosis

When we got the news that our day-old baby had Down syndrome, we were completely shocked and not a little bit frightened. At the time, it felt like the entire world had shifted, and it took us a while to adjust to the idea.

But there was no question of whether the diagnosis was in error. Not only were a few of his physical features clues, but the hospital staff drew some of our son's blood for a karyotype, which indicated that Josh did, definitely, have Down syndrome.

Once we knew what we were dealing with, we and a team of medical professionals were able to discuss how to proceed. After Josh got out of the hospital, and indeed, throughout his childhood, we worked with professionals who had experience helping people with Down syndrome. All this because we had a certain diagnosis.

Over the years, it's occurred to me many times how fortunate we were to have that exact diagnosis, even though it was difficult to hear when we were first told. We know of others whose children have disabilities, but they were not noticeable at birth, and were only diagnosed after a long, painful time period during which the parents suspected something was wrong but didn't know what it was. In a couple of cases, there is still no official diagnosis, just the observation that something is wrong.

One particularly difficult diagnosis is autism. Generally (though not always), the signs begin to appear at around 18 months of age. In some cases, the toddler actually seems to regress. How painful for the parents!

There is no blood test that I'm aware of for autism, no spare or funky-shaped chromosome to blame. But now that people have become aware of autism, there has been a much-discussed increase in the rise of cases of autism, and also something new: children on the "autism spectrum."

Thomas Sowell, author of Late-Talking Children and The Einstein Syndrome: Bright Children Who Talk Late, recently wrote about the possibility that a child might not be on the autism spectrum, but instead is simply a very bright child who is also a late-talker. According to his article, this is a common combination in young children, particularly among boys.

As Dr. Sowell points out, enough of these children exist that a diagnosis of autism spectrum could be wrong. His concern is that the money the government spends to help autistic kids could be going to some kids who have been misdiagnosed, thus leaving less help for those who truly do have autism.

I can see where this could be a controversial subject among parents of autistic kids, and medical professionals as well. And my heart goes out to those parents whose children seem to have a problem, but have no official diagnosis.

The Skydiver with Down syndrome

This is the coolest story about a young man with Down syndrome who loves to go skydiving. (Gulp!) The video, in particular, is just so good. The joy in Casey's face is just wonderful to see.

For those of us who have kids with disabilities, hearing about adults like this encourages us, even if we'd rather not see any of our kids, disabled or not, go skydiving.

(Hat tip to Ann M.)

A Young Actor with Down Syndrome

In England, a new book written by the mother of a boy with Down syndrome is due out in two weeks. The boy is 15, loves acting and currently has a role in his second movie.

I love how she describes life with him in this article. She certainly captures it well. (He's almost the exact same age as our son.) I especially appreciate her comments regarding her unwillingness to have a subsequent pregnancy tested for Ds because she would never abort a baby with Ds. I think she and I would get along just fine.

Two Wonderful Homeschooling Magazines

There is a lovely little homeschooling magazine in Australia called Otherways. How do I know this? (Considering that I live in the U.S.?) Because they just sent me a complimentary copy so that I could see how they used my article "Homeschooling a Child with Special Needs," which is excerpted from my new book.

I am thrilled to have my work in this publication. It actually reminds me a little of Growing Without Schooling, one of the first homeschooling magazines in the U.S. Last year, when we moved and were forced to whittle down 20 years' worth of belongings, I sold my beloved collection of GWS to a homeschooling mom who snapped them up as soon as I posted them online. I hope she's enjoying them as much as I did. They're a gold mine.

Fortunately, some GWS back issues have been posted online. I go there when I miss my old issues too much :(

Book List for Homeschooling a Child with Down syndrome

As I mentioned in my recent post on homeschooling a child with Down syndrome, there have been many books that have helped me as I homeschool dsds15. Not all of them have been "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 be like for him in school, and that usually got me back on track. After all, who has time to sit patiently with him each day and work and play if not me? No teacher or aide has time to work with him one-on-one, which is what a distractible guy like him needs, and no teacher or aide can 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 agree. 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 use to homeschool my son. We do a lot of hands-on work also. 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 don’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 photocopy the pages over and over and over until he gets 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’ve really used a lot:

Math Practice for Beginners

Math Picture Puzzles Grade 1 (Practice Makes Perfect (Teacher Created Materials))


Take It To Your Seat Learning Centers
published by Evan-Moor

These premade 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’ve enjoyed are:

Take It to Your Seat Math Centers, Grades K-1

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 find these in teacher stores, but you can also check out their online catalog at:

http://www.poof-slinky.com/catalog/catalog.asp?org=15

Note: They don’t show the full line on their site for some reason. In teacher stores, they’re often found on freestanding kiosks. They’re very colorful and hard to miss!

Betty Lukens Felt Activity books

Great for teaching Bible stories to kinesthetic learners. My son (15) still likes to look at these books and arrange the felt pieces on them. I think the fact that they’re realistic-looking and not babyish helps.

http://www.bettylukens.com/

50 Bible Paper Pop-Ups: 3-D Visuals for Hands-On Learning Fun by Robin S. Parimore and Lynne Marie Davis

We’ve been working our way through this book for the past year. Requires cutting skills. I combine each project with the appropriate Bible story.

The Imperfect Homeschooler’s Guide to Homeschooling by Barbara Frank

My new 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’ve known the Bandy family for years; their story is so encouraging!

The Kindergartener's Plastic Surgeries

I read this story and just felt so sorry for this little girl, who went through "radical and painful" plastic surgery three times by the time she was five because her parents felt it would help prevent people from judging her by her appearance.

Her appearance was that of a child with Down syndrome. That's why they had her tongue reduced in size, the area around her eyes changed, and her ears adjusted so they didn't stick out.

I've always felt like my son's facial appearance is a gift. Yes, he looks like he has Down syndrome, and that's good, because it gives people a visual cue that he might have some delays, helping them control any knee-jerk reactions they might have. How much harder it must be for children whose developmental disabilities offer no visual cues. They immediately see the reactions of strangers to any behaviors they might have that are different.

My son with Down syndrome has been fortunate not to have had any surgeries, cosmetic or otherwise. And let me tell you, he's a good-looking fella. Don't take my word for it, though. Tell him he looks handsome, and he'll say "Yep! Thanks!" :)

Strong-Willed Children

It has been suggested that these two at left look like our eldest and our youngest when they disagree. Yes, they're my strong-willed kids, and yes, neither is very willing to give in to the other. It can actually be pretty entertaining to watch each of them try to get the other to back down because, despite their ten-year age gap, they are pretty well-matched when it comes to wills. And yet, they adore each other.

Homeschooling Your Child With Down Syndrome

Momto4 recently left a comment on a February post from this 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.

Feel free to ask any questions you might have, and I’ll try to get that book list together soon!

Disabled and Gifted

Since I have a teenage son with Down syndrome, I do know something about having a child with a disability, but I only really know about his specific issue. There are many other disabilities that I know little or nothing about.

One of those disabilities is autism. My cousin has a son who’s six weeks older than mine and he’s autistic. But I’ve only met him a few times because we live pretty far apart. I also have a homeschooling friend whose youngest son is autistic, but again, I’ve only seen him once or twice because we don’t live near them.

So I wouldn’t say I’m familiar with autism, but I have to admit that stories like this one fascinate me. To be able to recreate a scene with so much detail from memory is just completely amazing, and an incredible gift.

Road Trip

Just got back from a short trip…..well, short in terms of time (five days) but not distance (1400 miles).

We started off early Wednesday morning en route to Fort Wayne, IN, where we spent the night. The next morning we drove through Amish country to a small town where my dh’s family is from. We had a wonderful time visiting with relatives from both sides of his family. When we arrived, we found out that if we’d come a day earlier, we would have found ourselves driving in a terrible ice storm.

On Friday we headed to St. Louis. It started to snow right when we left, but the roads weren’t bad, and by the time we left Indianapolis, the snow had stopped. The area we drove through would get between 12 and 20 inches of snow over the next 24 hours. Once again, great timing. I can’t take credit for these instances of missing hazardous weather except for the fact that I did pray for good travel before we left, more than once. :)

It took most of the day to get to St. Louis, where we visited our son at work, met some of his very nice coworkers, and saw his place of business. He loves his job, and we’re very happy to see that.

Dinner was prepared by our son and his bride; it was delicious. We visited them again the next day, and went to church with them and her family. Since we haven’t found a church home yet, we really enjoyed being there. Then we all went back to the newlyweds’ apartment, where we dined on frozen pizza and birthday cake, because it was dsds15’s birthday. That’s right, my youngest is 15. This makes me feel somewhat old. But it’s always a celebration, because we weren’t sure he would make it through his first week of life because of the problems he developed soon after birth.

We left for home very early the next morning (ugh, time change Sunday made it even harder to get up early) and arrived home in time for dinner last night.

Some observations about the trip back:

1) Gas prices are ridiculously high. We even saw diesel at over $4 a gallon.
2) I finally tried using the cruise control on our car and liked it. I’d always avoided it because I thought I would be less alert if I didn’t have to concentrate on staying near the speed limit (not one of my strengths). But it didn’t work out that way. I stayed awake the whole time I drove…always a good thing.
3) In addition to all the great home-cooked food shared with us by family members, we also ate at restaurants and fast food places while on the road. I find that as I get older, I like fast food less and appreciate home cooking much more.
4) You can get really tired of the same six CDs when you drive 1400 miles in five days. Not that they weren’t great CDs (Carly Simon, WOW’s Best of Gospel, Paul McCartney, Chicago, Earth, Wind and Fire, and Count Basie), but we heard them too many times.

So that’s where I’ve been lately. And if you hung on all the way through to the end of this post, you must be avoiding the dinner dishes or something because it’s not a very exciting post. ;)