Supporting families with special needs
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.
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.
A few weeks ago I did something silly. I was attempting to play basketball with a group of men in a park. It did not go so well. I tried to take the ball and dribble to the basket but my feet tangled up with someone else's and I quickly fell to the ground. I did not have a chance to put my hands up to protect my head, so it was the first thing that connected with the pavement. Luckily someone had a first aid kit, and there was an Urgent Care nearby, so I was able to get taken care of without much more than a nasty gash on the side of my head. They cleaned it up and put a large bandage over it and told me to go home and heal.
Over the next week, I walked around with a significant bandage on my head right above my eye, and I noticed something about those who I encountered. I didn't notice at first, but I started to see a pattern in my interactions, and most seemed to fall into three categories.
First was the avoider. Having a conversation about work, talking directly to the person and they said nothing about the large white gauges with tape on my head. Is it that they don't want to embarrass me or they fear it is going to be something they don't want to talk about? What if my response is that it is cancer or something which will make them feel sorry for me? Not sure but I noticed that some conversations were awkward because they wanted to ask but just couldn't.
The second was "the concerned." They usually started with the words "Oh, my goodness." Followed by something like "are you ok" or "what happened." They want to hear the whole story and usually follow up with several questions. This encounter will be followed up by a story about themselves or someone else who had something similar happen to them. They are very empathetic and make sure you know they are glad you are ok before they walk away.
The third kinds are the Smart Aleck or the direct. Maybe these people knew me better, but it wasn't always that they were close friends. The conversation starter was something like "what did you do now" or "Did you wife hit you with the frying pan again." Generally, it was a direct question or comment to find out what happened. They usually want a quick explanation maybe they had a follow-up question and then on to whatever other business we had to discuss.
Over the last 27 years, my son has been in a wheelchair, walker or crutches due to his disability. There were times he was in casts or leg braces due to surgeries, and I don't think I noticed this pattern, but as I think back, I can see that many encounters went one of these ways. Some people talked to us never looking at our son and never engaging him. Others came across overly sympathetic, so sorry for our situation telling us how wonderful we were for doing what all parents do, raise our children.
If anyone took the time to talk directly to my son, they would have found out just how smart and articulate he is. As a parent, it hurts to know people are making assumptions about him based on his physical abilities, not knowing that he is currently in his second year of his Ph.D. in ancient history at an Ivy league school. It seems even worse to know that they could find out just how smart he is only by saying hello.
The official end of summer just passed, and I feel like it just started. I had an extensive list of things I wanted to accomplish, and I haven't made it very far down that list. It is so hard to gauge just how much we can achieve, but that doesn't stop us from making a list and then being upset with ourselves for not getting it all done.
We do the same thing with our kids. There is always another therapy or doctor or program. There is still one more thing we could be doing to make sure our child succeeds.
I am not sure why we think this is true? Even thou my son is an adult, there are still moments when I think, if only we had done that one more thing. It isn't as if there was something we didn't do. He had therapies, there were always people coming and going from our house. He was involved in Therapeutic horseback riding. He saw specialist after specialist. He had the surgeries that they recommended and other procedures that helped him make progress. We even paid for a summer program that brought specialist from a former communist block country.
We did all of these things for our son, and yet I still feel there is more we could have done.
The reality is, we had three children, not one. We had other obligations, work, family, among other things.
We did what we could to make the most difference for our son while maintaining some sanity. Which I can't say always worked, but we gave our best. We need to remember that years from now it won't be the one more therapy or doctor visit that will matter.
It will be the time spent as a family, the trips, the moments you will share fondly, and all the inside jokes that only another person who was there when it happened would think is funny.
Therapies, doctors, and procedures are essential. Figuring out how to be a family and how to do life together is more important, and those memories are more important than all the other things we could provide.
When my wife and I were having our children, not much went as planned. Both of our boys came two months early. The first was a surprise, but the second we had a high-risk doctor, and he still arrived early. Our last, our daughter, required my wife be on bed rest for most of the pregnancy and it was still a fight to keep her cooking till she reached full term. All of these times were tough, with the first we didn't have anyone at home but the dog, but it still meant going back and forth from the hospital for the month he was in the ICU. After he came home, it continued with monitors and appointments. With the rest of our children, it meant needing help. I am incredibly grateful for our families especially both my wife's and my mother. Both of them took shifts taking care of my wife or our children while we watched and prayed in the hospital. There is also no way we could have made the six months of bed rest without them.
For those of you who have family or even friends which are that close and will be there for you, you know how important that support is. It is a big part of why we are where we are today.
I have heard stories of families whose parents live in the same city and yet they are unavailable. I interviewed a father and his parents separately for a book I was helping on. It was amazing to me to hear the parents say that they felt that they were not welcome in the home of there medically fragile grandchild. While at the same time the parents of this child felt the grandparents didn't want to be a part of their lives.
How sad, both sides miss the blessing they can be to each other. The parents miss out on the support and love they need to be a thriving family. The grandparents miss out on knowing their grandchild and miss out on the opportunity to show love and support to parents desperately in need of help. Both sides lose in this family, but the most significant loss goes to the child. I know for our family the successes our children have had, has as much to do with our supportive families as it does with us. We could not have done it alone, and I pray you don't have to. If you are a family with children who need extra care, it can be hard to let others in, but it is so worth it. If you are the family or friends of someone with a child with special needs, keep asking if they need help. Show up and offer support. Do it in a way that they know you will not go away until they let you help. In the end, everyone will be better because you did.
