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?” 

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.  :)

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?

After watching it, I had to agree. I know this dad scared most of the kids on the bus, but he was defending his daughter, who has cerebral palsy. Maybe now the culprits will leave her alone, and the others will be too scared to ever pick on her.

I am so glad we homeschool our son…..I can’t imagine how hard this kind of situation would be for him, and how angry my husband and I would be if bullies were tormenting our son on the bus.

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.

This is why it’s good that God doesn’t give us the ability to see the future. The person I was back then would have been pretty freaked out to know that we would spend years (literally) working on the alphabet and basic counting, or that at age 17 he still wouldn’t be ready for Saxon 54, the wonderful math book all three of my older kids used.

Several years of working on simple concepts wore down my naïveté and helped me see that Josh wasn’t going to do things on his siblings’ timetable. You might be thinking that should have been obvious to me once I got his diagnosis when he was 18 hours old. But there’s a difference between knowing a fact and living the reality of it. I had to live it to really realize it. Then I had to accept it. And finally, I learned to make other plans when it came to his education.

I could have continued prepping him for traditional math, trying year after year to get him to the point of learning multiplication tables. After all, the experts say that people with Down syndrome have a learning curve that goes up almost all of their lives. Those who don’t learn math by age 10 may learn at 15 or 20 or later. That would seem to make a case for keeping at those multiplication tables until he finally caught on.

But what kind of life would that be for him, forcing him to do the same work over and over, making him miserable? There are so many other things he needs to learn, things he will need to know in his life. Our time is better spent working on useful subjects that he has an aptitude for, making the learning much more pleasurable. So I taught him to use a calculator. Why waste precious time trying to learn those darn times tables?

Instead, my husband and I both make time to teach Josh to work with his hands, which he loves. He’s very creative and enjoys working with color, so my husband has been teaching him how to paint with watercolors. They make craft projects together. Josh also helps his dad mow the lawn and trim its edges. He’s very proud that he’s allowed to use the weed whacker.

In addition to working with Josh on basic reading and math skills, I teach Josh about cooking. He loves to make meals for our family, and especially enjoys the praise he receives at the table when we eat his creations. He also makes his own breakfast and uses the microwave to make his lunch.

One of his sisters got him a cookbook that he loves because it’s got plenty of pictures of ingredients. He’d use it every day if we let him, but the recipes aren’t the healthiest. So most of the time, I try to include him in what I’ve planned for dinner instead of using his cookbook. But he does love that thing, and brings it to me if he sees me making out the grocery list.

His sister who still lives at home also cooks with him. As a culinary student, her homework assignments are often made in our kitchen. A few weeks ago she asked him to help her make a strawberry cheesecake from scratch. It was delicious 

These activities teach Josh a variety of skills while letting him enjoy the relationships he has with all of us. He’s a people person, so relationships are really important to him. We enjoy our activities with him, too. But it took us a while to get to the point to where we could look at them as educational for Josh. It wasn’t easy to let go of the idea that he should be studying certain subjects at certain ages. Once we accepted that he was different, we could embrace and enjoy who he is at each age and what he’s capable of doing, or not. Facing facts is certainly not easy, but it does make life easier once you do it.

Of course, we were fortunate that we had a diagnosis for him shortly after his birth. It hit us hard at first, but at least we knew what we were dealing with. I think it must be harder if a child has delays or difficulties that are not obvious or even present at birth, such as autism or delays of unknown origin. The slow dawning that something is wrong is very painful for those who love the child. But it is what it is. All you can do is pray for help in accepting your child’s situation and diagnosis, because once you accept those things, you’re in a position to look at your child and his future as an open slate, unencumbered by the expectations you have of your ‘typical’ children, and instead full of possibilities that will educate your child and bring him joy.

I recently read about a homeschooling mom whose son was dealing with multiple developmental issues including Asperger’s. He struggled with traditional high school subjects because they were so hard for him, and as a result, had come to hate homeschooling. I wondered if his mom had actually accepted his disabilities yet. It occurred to me that if she had, she could get rid of the world history and grammar textbooks that cause her child so much frustration and replace them with musical instrument lessons or art classes, subjects that allow for creativity and self-expression. And she would not feel guilty about it, either, if she had faced the facts of his situation. I pray that she was able to find a solution to her son’s painful difficulties, because I know how hard this road must be for her. When it comes to disabilities, acceptance is key.

Josh’s Cookbook:

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.

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!

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…

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.

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.