Barbara Frank

Josh was in a silly mood today, which led to the following conversation:

Me: You’re a goofball.

Josh: I’m not a cheese ball! You’re a cheese ball!

Me: I said ‘goofball,’ not ‘cheese ball.’

(Brief pause.)

Josh: Mmmm, cheese ball!

Crazy kid 

One of the things I promised myself I would do after I finished homeschooling is to start reading more fiction again.

I once was an avid fiction reader. In fact, I used to read Gone with the Wind annually. But over the years of homeschooling, time for myself dwindled to the point where I rarely had time to read fiction. (I shouldn’t just blame homeschooling; my discovery of the Internet is equally responsible, I must admit!) When I did make time to read a book, it was usually Earlene Fowler’s latest Benni Harper mystery.

Now that I have the time to read fiction, I’m doing just that. Last night I finished the newest entry in the Benni Harper series, Spider Web, and really enjoyed it. The character of Benni is a woman who is intrigued by mystery and who happens to be married to a handsome police chief. Each book’s theme is related to the name of a quilt pattern; being a quilter, I appreciate that. I especially love that Ms. Fowler includes Benni’s Christian faith in every book.

And now I have yet another reason to love these books. In Spider Web, Ms. Fowler introduces a new character who will apparently turn up in the next book, and she has Down syndrome. How cool is that? I can’t wait for the next book!

One of the exciting things about our new house is that we have a laundry chute.

Maybe that doesn’t sound so exciting to you, but this is my first-ever laundry chute and I love not having to lug everything down to the basement laundry room.

I’m not the only one who thinks it’s cool. Since Josh got over his initial fear of it (I think he was blown away at first by the idea that things could fall down it), laundry day hasn’t been the same.

He likes to summon me to the base of the chute so I can watch the entire process. Then he drops a week’s worth of collected dirty clothes down, one piece at a time, while shouting things like “Look out below!” and “Here it comes!” So it takes a while until everything makes it down the chute.

But he gets such joy out of doing this that I just wait patiently in the basement until all his laundry arrives. That’s the thing about Josh: he can take the simplest thing and turn it into fun. No wonder 99% of adults with Down syndrome say they’re happy. It’s their gift, and in that respect they’re far ahead of many other adults who don’t have the spare chromosome. They can find joy in the simplest pleasures; that’s why they’re such a joy to have around 

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!)

Today was my first day back to homeschooling after a 2.5 month vacation.

Ok, so it was a working vacation, as I spent the time finishing my new book. My husband took over my teaching duties, and I have to say that he did a great job. Josh got to make a life-size human skeleton (complete with organs and muscles) out of paper. (My husband is very artistic.) They also made several different animal and car models and did a study of bird anatomy that included making several lovely paintings.

Unfortunately for Josh, I’m not that creative. Over the weekend, he was actually pretty excited about doing school with me again today. But after a morning spent doing math, practicing sight words and writing thank-you notes for his birthday gifts, he must have decided that he hadn’t missed much. His first comment at lunch was “When are we taking a break again?” 

I was flipping through a quilting magazine the other day while waiting in line at the grocery store when I happened to see an article about a young lady with Down syndrome whose mother taught her to sew.

The article mentioned this young lady’s blog. Since I refuse to pay $6 for a magazine, I memorized the blog address and actually kept it in my brain until I could get home and type it into my browser. (If you know anything about menopausal brain fog, you know that was an accomplishment!)

I was rewarded with a peek into Sarah’s world. It’s a lot of fun. Whether or not you know and love someone with Down syndrome as I do, I think you’ll like this blog.

For the last year or so, my husband has taken on the responsibility for homeschooling our son once a week. What a blessing that is! Since we do school in the mornings and I work in the afternoons, having that free morning is wonderful for running errands, doing chores or just playing catch-up around here.

But I’m not the only one who benefits. Josh loves doing school with his dad. They work on fun art projects while playing Tom Chapin cd’s. My husband is artistic and patient, so he’s very good at teaching Josh. They’re used to working with each other in the workshop, so they’ve already established a pattern of doing projects together. (I’m sure the fact that they’re creating things, instead of working on math or reading, only adds to Josh’s enjoyment.

Their most recent project was a nativity scene (figures and stable) that my husband found online. It’s now sitting in our dining room, awaiting the arrival of the rest of our family this weekend.

Having homeschooled my kids since the mid-1980s, I’m starting to want to do other things. My husband taking on homeschooling one day a week has made it easier for me to keep doing the other four days.  :)

Years ago, we were acquainted with a boy who couldn’t speak due to birth defects. Thanks to a piece of equipment called a Dynavox, he was able to touch a screen so a computerized voice could tell us what he wanted to say.

It was a very expensive piece of equipment that many families couldn’t afford. Another young man we knew used a wooden board with pictures of faces; he’d point to the sketch of a face expressing the emotion he was feeling.

Times sure have changed. Now there are apps for the iPad that fill the same purpose as a Dynavox for youngsters with special needs. Wish we’d had something like that for our son when he was young.

The advantages of an iPad for kids with special needs go beyond supplying them with a voice. In a recent discussion here about the iPad, read Karen’s comment that explains all the ways she uses an iPad to educate her daughter with Down syndrome.

We do live in interesting times, don’t we?

The next time you buy a picture book for your small children, or for a young relative or a friend, would you consider buying Where’s Chimpy?

It’s the story of a little girl named Misty who can’t find her favorite toy, a stuffed monkey. It’s bedtime but she can’t go to sleep without him. So she and her dad retrace her steps and find an assortment of other treasures she misplaced that day before they finally find Chimpy.

I know this doesn’t sound like an unusually spectacular book, but here’s the thing: Misty has Down syndrome. She’s the main character of the story, and she’s in every photo in the book.

So little children who read this book (or have it read to them) will hopefully see Misty as a little girl, not someone with a disability. You know how little ones like to have books read to them over and over? Maybe after reading Where’s Chimpy? enough times, young children won’t think twice about Misty being any different from them.

And maybe, as they get older, instead of staring at other children with Down syndrome, they’ll smile at them, or maybe not even notice anything different about them. That would be cool….and a nice change.

BTW, we have a well-used paperback copy of Where’s Chimpy?, but I also have my own hardcover copy of this book because I like it so much. 

I just finished submitting the online form required of homeschooling parents here in Wisconsin…..for the last time.

Our youngest child turns 18 next spring. According to Wisconsin law, we can legally stop educating him after that semester, whether or not he graduates.

Of course, he’s not done learning (is anyone, really?) and we’ll continue to work with him as we always have. But it’s a strange feeling to think that we’ll no longer be officially homeschooling after this school year.

I’ve been teaching my kids for well over 20 years; 27 years this month, to be precise, if homeschooling begins at birth. It’s really hard to think of myself as anything but a homeschooling mom. I guess I’ll have to start adjusting that view.

Teaching my son math has been a long process. He finally gets the concepts of adding and subtracting, but only in a very concrete way. Taking it to the abstract is too hard for him, so he doesn’t do computations with numbers greater than 100 as his siblings did when they were learning math.

He also tends to lose what he’s learned if he doesn’t review his math facts regularly. So I occasionally pick up new books to use with him. A new book holds his interest even when the concepts it teaches are not new to him.

Recently I picked up a new book for him called “Subtraction Secrets.” It was recommended to me by a clerk in a teacher supply store. This book contains 30 map puzzles that require my son to do subtraction problems, then use the answers to determine how to find a specific point on each map.

He likes these problems because they’re entertaining. I like the fact that he reviews subtraction, he learns very basic map skills, and he enjoys doing the puzzles. This book is reproducible, so I can keep copying the puzzles for him as long as he needs them.

There’s another book in the series called “Addition Adventures.” I didn’t buy it because the addition problems in it require the student to figure out one of the addends instead of the sum. For instance:

Instead of 7 + 5 = ___

It says 7 + ___ = 12

My son’s not there yet; it’s a little too abstract for him. But we’ll work up to it.

Here are sample pages for both “Subtraction Secrets” and “Addition Adventures.” The publisher recommends these books for ages 6-10, but I think the typical 8-10 year old would find them too easy. Six-to-seven year-olds will probably enjoy them as much as my son does.

Josh is in our basement workshop, working on a project with my husband. They’re making an outdoor bean bag game to play outside this weekend when our older kids come home for the holiday weekend.  I can hear his happy banter with his dad as they work. Every so often he says, “Ha-ha! I did it!”

They’ve been sawing and painting for the past day, and Josh is very excited to see the project coming together. Most 17-year-olds wouldn’t get so excited about doing this. But Josh isn’t like most 17-year-olds because he has developmental delays.

When he was a baby, I sometimes wondered what homeschooling him would be like. I’d become accustomed to the pace set by his three older siblings. I wondered how much longer it would take him to learn the things they learned by certain ages. » Read the rest of this entry «

While reading the Sunday paper I was tickled to find this article, which describes one of the oldest living men with Down syndrome and how he became part of a vibrant young family whose members now adore him.

Lately my husband and I have been discussing special needs trusts. Thinking about what could happen in the future is especially hard for those of us who have children with special needs. Stories like Edgar’s are reassuring, because they remind us that God will look out for our children even after we’re gone. I love this story!

In some ways, our teenage son with Down syndrome is very similar to his siblings when they were teens. He likes his privacy, talks about wanting a girlfriend and a car, and is very picky about what he wears. He also spends a lot of time primping in the mirror, getting his hair just right.

On the other hand, he can watch “X-Men 3″ one day and “Winnie-the-Pooh and the Honey Tree” the next, and appear to enjoy them equally. It’s the same with games. He can beat his brother and his sister’s boyfriend (both in their mid-20s) at video games, yet he insists on playing Candyland and Chutes and Ladders with me, which we’ve played since he was little.

So we’re in the middle of working on his lessons this morning, and he gets mad at me because I’m making him pronounce a word correctly (he has major speech issues), and like a typical teen he loses his temper and bellows, “Stop it, Mom, or I’m not going to play Candyland with you today!”

LOL 

(The rest of the story: he didn’t mean it. We had to play twice after he finished his school. Sigh. If I had a nickel for every time we played Candyland over the past 13 or 14 years……)

I met Bobbi Bandy nearly 15 years ago, after she and her family joined our church. We got to know each other through a weekly women’s Bible study class, where I was wowed by her knowledge of Scripture and her love of it. The fact that she daily cared for her disabled adult son as well as four younger children in their teens and preteens made her a something of a role model for me. Over the years I’ve been blessed by her example and her friendship.

Concordia Publishing House recently published Bobbi’s book A Mother’s Search for Meaning: The Dance Goes On…. It’s the amazing story of how God used Bobbi’s son Rob to spiritually grow Bobbi and her husband Phil, as well as others that Rob touched during his lifetime.

As the mother of a developmentally disabled young man, I highly recommend this book to those who have someone with special needs in their lives. Yet I also recommend it to those who have never known or loved someone who is mentally and/or physically disabled, as it clearly demonstrates that God has a purpose for everyone’s life, even those who are viewed as imperfect by the world.  

I recently interviewed Bobbi. I believe her witness will be a real blessing to you:

Rob was your first child, born when you and Phil weren’t all that old yourselves.  Was there anything in your background or Phil’s that prepared you for the birth of a child with disabilities?  If not, how did you cope?

Most of us would have a hard time describing the ways we have been equipped for the life we live in Christ; whenever we give credit, the first must be to HIM before all others. My heart was made tender through the miracles of Jesus: the healings and tenderness that He had for those born blind, mute, and lame that I learned about in Sunday school as a child. 

There were significant times in my life when I thought I was meant to see things of importance.  Phil and I both had contact with children who had contracted polio and who struggled physically. I think that was the first time that I thought about how thankful I should be to have the mobility that I had.  When I was in first grade, a class member’s teenage sister was killed in a car accident and I realized how fragile our existence is. (We both grew up accepting and appreciating differences of ability and age to the credit of our parents.)  One of my college classes took me to a residence for handicapped adults and the memory of them stays with me to this day.  I do believe God was equipping me for the gift of Rob’s life, though I wasn’t able to see it at the time. 

In your book, you wrote that when Rob was born,”…we grieved over the loss of the life we had dreamed of, the man we thought he should have become.”  This type of grieving is common in parents who have a newborn with special needs.  What can you say to these parents, given your own experience with Rob? 

If we rely on our own wisdom and our own knowledge in such circumstances we will most assuredly miss the mark.  Our dreams are not God’s plan.  His plan is greater than our dreams.  As I stated in the book, “Later, after God had revealed His better plan for us and we had seen the beauty and goodness of His ways over our dreams, we grieved the loss of the life we had come to love and value and cherish.”  To parents I would say give yourself time to determine the meaning of the struggles you now experience.  A life has to be fully lived to be fully understood.

You dealt with the pain of secondary infertility for years after Rob’s birth, but you eventually had Elisabeth, Bryan and your twins, Katherine and Christine. After that, you became immersed in the very busy family life that resulted from having five children.  What advice can you give to other mothers about juggling so many responsibilities, particularly when you’re also caring for a child with special needs? 

Because of the ten years between his birth and the births of our other children, Rob’s routines were well established.  Until our move to the Chicago area, he attended school from morning till early afternoon, which gave me time to spend with the younger members of the family; later the younger ones participated in Rob’s care.  We learned to savor the joys of each and every one of our children.  Rob added such a dimension to our family that no other child did, but each of our children added personality, ability, character, love, and life unique to who God created them to be. Rob’s life actually helped us to appreciate each child for who they are. 

My best advice would be to try to see what is really essential in each child’s life and try to let go of the trivial.  Read together, say prayers together, have family dinners together-share your life with them.  Remember that the high demand days will not last forever, but once they’re gone they cannot be recovered.  Everyday is a memory for your child and for you. Determine to make them ones to be cherished rather than ones to regret.

You were told that Rob would only live to his early teens, but God gave you and Phil 30 years with him before taking him home.  It hard to believe it’s been ten years since that day, but how well I recall Rob’s funeral, with its unmistakably clear message of celebration, of both Rob’s life and of the One who created Rob.  You once told me how much you you’ve missed caring for Rob since then.  What are the blessings of caring for a disabled adult child?

The first that comes to mind is the sense of servant mentality that completely takes over.  Next comes an awareness of the things of this world that would entice us away from the servant role: fame, fortune, beauty, power, intellectualism.  Caring for and loving Rob on a daily basis helped us to see that the greater things were peace, humility, and love.

Soon after our son was born with Down syndrome, I read that in more than half of all marriages where there is a special needs child, one spouse (usually the husband) will leave the marriage because of an inability to cope with the realities involved in having such a child. In your book, you shared that Phil comforted you after discovering the extent of Rob’s physical problems by hugging you and saying, “There has to be a reason.”  Today Phil is a highly esteemed elder in the church and a loving husband, father and grandfather.  How did God use Rob to grow Phil as a husband, father and Christian?

God brought Phil to his knees.  He brought us both to our knees.  Every parent wants to be able to provide for all the needs of their children.  When we are placed in situations where all the needs cannot be met through us, we have two choices: to give up because the task is overwhelming or to look up and accept a greater power.   

After Rob’s birth, you (a Christian since childhood) did not attend church for many years.  Yet today, you’re one of the strongest Christian women I’ve known.  Would you mind sharing a bit about how God used your circumstances to bring you to where you are today, and what He will do for others going through very tough times?

The seeds of faith were planted deep in my heart from my baptism, His gift to me.  God has always spoken to my heart and called me even when I was unfaithful.  The process He used to draw me closer wasn’t an easy one after I wandered but it was a personal one–He bent down and touched me, embraced me, and comforted me when I was the most broken and vulnerable. Brokenness became the door through which He would fully enter.  He became very real to me in my sorrow.  

I’m reminded of this as I think about so many young people who are ‘wandering’ in our families throughout our country.  I’m reminded and reassured that God is faithful even when we are not. 

I was delighted to learn recently that you’ve begun working at a job for which you’re uniquely suited, thanks to your life experience as Rob’s mom.  It’s a wonderful example of how God weaves His tapestry and uses us for His purposes.  Please tell us about your new job!

I’m privileged to be working in a contained classroom of children with special needs in a local school.  I feel like everything has come full circle since Rob’s passing.  After his death I wrote my thoughts about his life and their meaning so that my children would remember the value and importance of their brother’s life.  The writing helped me process all the years and events. 

I then worked for nine years as a preschool teacher, working with 4- and 5-year-olds.  Tracing hands, encouraging young minds, planting seeds filled my days. But it was always the child who was struggling, the child who couldn’t connect, the child who needed more who really called out to me in the classroom.  So now I’m home again, back to where God seems to have a place for me.

Thank you so much, Bobbi, for taking the time to answer these questions. I encourage everyone to read Bobbi’s wonderful book, A Mother’s Search for Meaning: The Dance Goes On…