Supporting families with special needs
I read through a few parent blogs the other day and came across a post entitled "When Your Child With a Disability Isn't a Superstar." I love this post by Ellen Stumbo for her honesty about how we as parents can sometimes make our children and their achievements all about us. It reminds me of the joke about wearing clean underwear if you get into an accident because it would reflect poorly on your mother. As parents of children with special needs, we learn some things that other parents might not ever grasp. It isn't about us!
In response to Ellen, I want to say, I am the parent of an over-achieving child, and I have had to learn the very same lesson, but in a different way.
In 1992 our son Kyle was born two months premature. After a month in the NICU, we took him home, and over the next few years of doctors and therapy came the diagnosis of cerebral palsy. Over the first eighteen years would be countless therapy sessions, over a dozen surgeries, botox injections, and other procedures to ensure the best possible outcome for him physically.
Very early, it became clear that despite his many issues, his speech was not one of them. Because his life revolved around therapy and doctors instead of his peers, he developed a very adult speaking manner. This fascinated adults who met him and resulted in him interviewed for local news stories. He had a knack for getting in front of a camera. At seven, he was interviewed by Dr. James Dobson on the Focus on the Family nationally syndicated radio program. At thirteen, Kyle was featured in The Truth Project video series with Dr. Del Tackett. These resulted in other follow-up interviews and recordings.
Through all, Kyle maintained a 4.0+ grade average in high school, which lead to a scholarship to do his undergrad, then his masters, and now is in the fourth year of his Ph.D. at an ivy league school.
Maybe unlike Ellen, people want to say to my wife and me that we did a great job, but I want to tell you it has nothing to do with us. Our son has been his own driving force since he was very young, and most of the time, I have felt like I am holding on to the tail of a fast-running horse, barely able to keep hold.
Our son wanted to be involved in speech and debate, so we figured out how to get him there and stayed to make sure he could compete. When he asked to go to church camps, we volunteered to be leaders or made sure someone was watching out for him.
When he went off to college on the east coast, all we could do was worry and pray. I have woken scared that I had made a mistake, thinking I should have kept my son at home. I had thoughts of having to drive or fly across the country to save him from some catastrophe. When he has called and told us of trips to Turkey or Greece, I have felt my heart in my throat.
How many of us can make our children what we want them to be? Or can we protect them from everything? We have had to let go of what we want, or even the safety that makes us comfortable. What we have had to realize is that our son is becoming who God wants him to be. The best thing we have done is to get out of the way. We can only do our best to set him up for success and trust God for the rest.
Last night my family watched "It's a wonderful life" like we do every Christmas. Most of our pre-movie discussion was about the fact that the copy online was the restored colorized version. Some of us are traditionalists and don't like it when they colorize old black and white movies. It made some of the scenes better, and some I could have done without the color. The much better thing was that they cleaned up the audio so you could hear what everyone said.
While all the pre-movie discussion was about the film's aesthetics, the after-movie conversation was different, and it was about a life well-lived.
Most of the movie is the setup for the last 30 minutes. You see the life of George Bailey, and like many of us, he has big dreams. He plans to do everything but stay in his town, run the business his dad created, or even to live a somewhat "normal" life with his wife and kids.
I found his story to be a lot like a special needs parent. How many of us chose the life we have? How many of us had a plan and dream of how our life would go only to have it turned upside down! We spend our lives getting surprised by new circumstances and challenges. Like George, parents continue to make the best decisions they can base not on what is most comfortable but on what is best for their child and family.
Unlike George, parents rarely get to see the effects of what they do or their decisions. Most of the time, parents continue to the next day, week, year, or season, hoping to have made the right choices. I know from time to time, we get to see small victories, and those victories sustain us.
Like George thou, I would suspect that if all that was precious to you were magically gone, you would be frantic. And like Clarance's statement to George at his worst moment, the moment where he realizes everyone he loves has never been in his life, I want you to know what George finally realizes. Despite all the trials and tribulations, It has been a wonderful life!
Keep up the fight. We are here for you!
Merry Christmas and have a Happy New Year!
When I was young, I remember hearing stories about those who were part of the generation that lived through the depression, stashing money, and other valuables in their mattresses. As a young man who had not had much experience, this seemed unnecessary, but I had never seen a bank close, I had never had a time where food was not in my refrigerator. I had spent my life sheltered by my parents in very safe and stable times. The most I went through was the gas shortages in the seventies, and even that seemed more like an inconvenience than a real crisis. I was young and didn't have a job, so my memories are of waiting in line to get gas in my parent's car, which was more of a nuisance for a young boy.
Not having lived through those tough times in history like the Spanish flu or even the Great Depression, I have only accounts from those who lived through it. It made a huge lasting impression on them and created life-long habits for them of things that I would never have thought to do.
What we are experiencing is, so far, not as bad as those times, but I still wonder what will be the lasting impression the pandemic leaves us with?
So far, besides a lot of hoarding and hysteria and homemade masks, what will be the stories people tell of 2020 in one hundred years?
I hope that it is remembered more for the acts of kindness and generosity that I see from people all over the country and world.
Acts like the teacher who delivered donated computers to all of his special needs students who were at home. The church that started a food drive to deliver groceries to the families in the community who had none. Maybe even the non-profit that set up a hospital in Central Park would be a better remembrance than the silliness I see on the news every night.
It seems to me that the good far outways the bad but the bad gets all the press.
That is why I loved seeing John Krasinski doing his youtube videos called Some Good News. https://www.youtube.com/channel/UCOe_y6KKvS3PdIfb9q9pGug
And that is why I started doing Mr. Bob tells a story. https://youtu.be/JGdY7E4Pjug If we each can do just one thing for our friends, neighbors, or even strangers, it will change the world.
I know that not everyone is in a place to be able to help, but here is the good news. Those of us who are, are here for you! Share what is going on so we can do our best to do what God called us to do. That is, to love our neighbor as ourselves.
I know we had about three months before all of the lockdowns and closers, but it seems like it has been a few years since I left my home without making sure I had a mask in my pocket. I also can't remember the last time I had an in-person meeting. Do you have Zoom fatigue as I do? In a conversation with a friend the other day, I lamented that I wished for everything to go back to the way it was. His response hit me hard, Bob, it will never be the same!
My friend is right. It won't be the same. The hard part is not to look at that as a negative, I know things have changed, but it isn't that all of the changes are bad.
I understand that outdoor activities have skyrocketed in popularity. Bicycle shops can't keep bikes in stock, and camping supplies are also hot commodities. It seems since we have to be online much more than before, more people are figuring out ways to get away from it all. In my estimation, that is a great thing. If you need a reason to stop looking at your screens and devices and get outside, watch Netflix's The Social Dilemma documentary.
While I do have Zoom fatigue, that is more in the context of work. It seems that more people are keeping in contact with friends and relatives over the internet like never before. We could do all of this before lockdown, but maybe we were too busy? Being forced to slow down has allowed us to reconnect with our loved ones. I think it has made us realize we need to take life a little slower. We don't need our schedules filled every hour of every day. That is an excellent thing!
Luckily, my children are older and not in K-12 because I know that it has been quite a mixed bag for families. Some have struggled with the online, varied schedule or back to full-time school that the start of the school year has brought. While some have struggled, some have reevaluated school and found that an initial chaotic situation is working out for the better.
I know that there are still a lot of families struggling. There are too many out of work or finding the balance hard. As we move forward, we will find that what has been hard for most it going to help us take a fresh look at life, work, school, and many other things. It will help us make sure that what we spend our time and money on are the things that matter most to us, and that is something good that will come from 2020.
My wife and I recently got the opportunity to go to Disney World. For us, it was probably a once in a lifetime trip. We timed our visit to be at one of the quietest times of the year, and everyone said it was not as busy, but if that is the quiet time, I don't want to ever be there during a peak time. Everywhere we went, there were thousands of others with the same plan. At one point, the new Millennium Falcon ride had a wait of two hundred and ten minutes. I can not understand why anyone would wait over three hours to get on a ride, any ride!
While at times, it was overwhelming to see all the people in these multiple parks, there was one thing I noticed that made me smile.
Mixed in with all the children, parents, grandparents, and strollers were wheelchairs, special needs strollers, mobility scooters, and others with special needs.
The best part is not that they stuck out, but they were a normal part of the crowd. In ride lines, in the shows, those who had special needs were not separated or left out. There was no difference in how they were enjoying the attractions. I also really loved how the staff are well trained and act like they have helped people who need assistance millions of times. I never saw anybody look as if it was an imposition, and it always seemed like a normal part of the day. Dad's lifting kids out of wheelchairs and on to rides, mom's helping kids and adults getting on to some of the classic attractions, all of it happening with no fanfare.
Twenty plus years ago, when we took our children to Disneyland, I remember feeling like we stood out. I can't remember seeing many others like us. While we got to skip some of the lines, it was always an awkward situation.
This time around, I got to see many others like our family enjoying the day like everyone else, and it made me smile.
