When Severely Disabled Kids Go to School

While our son’s disabilities make it unlikely that he’ll be able to live on his own when he becomes an adult, he’s fortunate that he’s quite functional, unlike other young people who have more severe disabilities than he has.

I really feel for the families of those with severe disabilities, and I understand why many cannot homeschool their children. But sometimes I wonder what’s going through the heads of those who plan public school curriculum for these kids. Some of these educrats have many years of teacher training classes behind them, yet they seem to think something like this is a revelation:

Without knowing it, Mr. Adams’s efforts had touched on recent research in educating severely disabled children that focuses on using emotion and human connection to reach them. As higher functioning areas of their brains are underdeveloped, emotion moves them at a deeper level, lighting up the same part of their brain, the limbic system, as meaningful music, and possibly creating a bridge to greater intellectual cognition.

“We are so focused on teaching them skills, we don’t focus on the emotional part of the child,” said Rosanne K. Silberman, who coordinates graduate teacher preparation programs in severe disabilities and blindness at Hunter College.

Wow. You get results when you reach these young people on an emotional level. Who’d have thought? (sarcasm off)

PS Mr. Adams was the longtime teacher of the disabled young man in the article; after many years of working with the young man and developing a close friendship with him, he was reassigned to other students and now the young man has regressed. How sad. Way to go, educrats.

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!

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


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…

Once in a While, Some Good News is Reported

My blood pressure has surely gone up lately from reading about all the ridiculous things going on in our government. My husband even threatened to take away the Internet because I was getting so irritable reading about how our taxes are going up bailing out all sorts of stupid behavior while our freedoms are being eroded.

But then I read this story, about the smart trick a caring fireman used to rescue a frightened autistic boy who escaped his first day of school by climbing out of a third-story window and refusing to come in off the ledge. Best thing I’ve read in weeks! And the photo of the boy and his rescuer is awesome.

Criticizing the Travoltas

Over the weekend I got caught up in reading about the tragic story of actor John Travolta’s 16-year-old son Jett, who died suddenly on Friday after a seizure-related injury.

The comments sections of articles about this issue posted on the Internet were packed with diatribes related to Jett’s possibly having been autistic, and speculation about whether he was being treated properly (the Travoltas belong to the cult of Scientology, which opposes psychotropic meds). The Travoltas have long-denied that Jett was autistic, although some who knew Jett did not believe them.

What really got my attention was the large number of comments from readers who said they themselves were parents of special needs children. I’m sure a few were lying in a misguided effort to boost their credibility (after all, you can say anything on the Internet). But most rang true, because they fell into the two general categories of special needs parents I’ve come to recognize:

1) The Fighters. They cope with their child’s diagnosis by putting their energies into fighting/curing the malady. They join rallies (“Walk for Autism”) and cite studies and statistics. They’re the cheerleaders in the fight against the disability and for funding in related matters.

2) The Accepters. They’ve come to terms with their child’s disability for the most part, often after many years of struggle. They appear more concerned about incorporating their child into normal daily life than focusing on the disability.

Commenters from the first group were more accusatory against the Travoltas. The second group tended to be more sympathetic, with many also suggesting that people who are not parents of special needs children had no right to criticize the Travoltas because they had not “walked in their shoes.”

My thoughts are closer to those of the second group. The lives of special needs parents can be quite challenging and lonely. No one who hasn’t been there should criticize them.

I feel sorry for the Travoltas. They must be in so much pain over the loss of their son. As Scientologists, they themselves are disabled in that they must face their grief without the knowledge and comfort of the one true God. That is the biggest tragedy of all.