God is Looking Out for Edgar

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!

Threatened While Homeschooling

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……)

A Mother’s Search for Meaning: The Dance Goes On….

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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…

Summer Learning….It’s All Been Arranged

One of the best things about summer is that it reminds us that educating our children is not just up to us.

You’ll see this when you watch your child at the beach. I get to do this a lot because we’re blessed to have a beach a few blocks from our house. We can spend a lot of time there during the two warm months that comprise summer in northeast Wisconsin.

At the beach, my son takes his shovel and bucket and creates mountains, castles, roads, levees….he just lets his imagination loose and he has a ball. I don’t have to participate at all. In fact, now that he’s older, he prefers that I butt out! He has his own ideas.

When I watch him problem-solve after the tide takes down part of a wall of his castle, or when stray toddlers march through his masterpiece, leaving destruction in their wake, I’m reminded yet again that he’s capable of learning all on his own. He not only fixes the problem, but makes the project even better in the process.

Now, this particular son is 16 and developmentally delayed, but I saw the same thing in my older children when they were young, and I’m sure you see it in yours. God enables everyone to learn. While we homeschooling parents work hard to make a good learning environment for our children, it’s not up to us to make things happen. God has already taken care of that part.

This knowledge can be very freeing, if you’re a conscientious mom who wants to make sure her children learn what they need to know. This summer, give your children a bucket and a magnifying glass and take them to a pond so they can inspect the pond water for living creatures. Hand them a package of colored chalk and let them loose on the driveway or sidewalk. Don’t get involved in what they’re doing. Just watch, and you’ll see what I mean.

Worth the Wait

It’s exciting when you teach your children how to read or do math and then watch them do so successfully as part of their schoolwork. But to me, the really thrilling part is seeing them sprawled out on the floor with a stack of library books, reading for pleasure, or calculating on a piece of paper how many weeks’ worth of allowance it takes to buy a certain much-wanted toy. Using what they’ve learned in “school” to help them in their daily lives is what counts, as far as I’m concerned.

With my older kids, those “thrilling parts” came fairly early, probably when they were six or seven at the latest. But with our youngest, I found that he could learn to parrot back to me what I taught him, but he just didn’t seem to take the initiative to use those skills in real life…..until the past few years.

I first noticed it with video games. He began to figure out in his head how many more levels he needed to get to, or how many more of something he needed to catch. We know this because he mumbles these things (or shouts them if the game is going really well) as he plays.

Then he began pausing his favorite movies as the credits ran in order to write down the names of his favorite characters and the actors who played them. This only works when there are photos or footage with the credits, of course, but he knows just which movies have those and enjoys making long lists of the characters in them….with carefully printed letters.

This past year he began writing items down on the grocery list as we ran low on them. Now, I’m not sure how old my other kids were when I finally got them to do that with any kind of regularity. But at 16, Josh is a growing young man, and he’s hungry a lot of the time. Food has become pretty important to him. So I now find “orange pop” and “applesauce” and “Swiss rolls” neatly printed on the grocery list we keep on the refrigerator door.

And just in case I don’t buy enough of those things, he makes sure to put a quantity after the items (one day I saw “Cheetos-7”) on there. Every time I pass the fridge and see his careful printing on the list, I just have to chuckle. I’ve waited a long time to see him putting his learning into use, and I get a big kick out of it.