My son was 3 months old when we took him on his first camping trip. He had only been out of the hospital for a month and, thank goodness, he didn’t have the medical complexities that he does today. But why did we take him on that camping trip? There were several reasons, such as a friend’s birthday, not yet knowing the extent of our son’s disability, we loved to go camping and the biggest reason was to start creating memories together as a family.
From early on, we determined that having a child with a disability wasn’t going to stop us from doing the things that we loved. How we did them might change but we were going to do them.
Accommodate, not isolate
Yes, I want to protect my child from the world but I also want him to expand his boundaries and experience something other than the 4 walls of his bedroom. I want him to not be held back by his disabilities but propelled forward by his abilities, to do anything he wants. We want the world to acknowledge his existence and recognize him for the wonderful man that he is.
In trying to expand his horizons, we have taken him to the beach many times, which he hates. The sensory input from the sunshine and wind are too much for him but we purchased a beach canopy so he could be out of the elements but still be able to participate in the outing. Accommodate, not isolate!
And camping! We have taken him camping so many times! We started off tent camping and eventually purchased a travel trailer a couple of years ago. Let me tell you, when you have a child in a wheelchair, trailer shopping is a totally different experience! For him, we needed doors wide enough for a transfer chair to get through, a bed on the floor so we wouldn’t have to worry about him falling and a center aisle wide enough that he could be on the floor and the rest of us would have room to move around him. It took about 2 years before we found the right layout but we finally did it.
Life looks different
Now that he is an ‘adult’ and on a ventilator, we may change our mind on including him on everything. Lately, I have been juggling in my mind how much he would actually get out of the experience vs. the time and energy it now takes to pack him up to go anywhere. Plus, there are the risk factors that he faces as someone on a ventilator during a pandemci.
It is disappointing that camping may not be in his future anymore, especially the kind that we like to do out in the middle of nowhere with not a hospital in sight. However, I still plan to take him on other excursions. I am always looking for other adventures we can do instead once we feel safe taking him out into the community again.
Before the pandemic hit, my big goal was to take him to the old fashioned carousel ride that is not too far from us. It is ADA accessible and I have earmarked a couple of wheelchair friendly parks near it where we could go hiking afterwards.
I am a firm believer that exposing him to his community and his community to him, is going to benefit everyone. I want people to understand that just because a person is in a wheelchair shouldn’t make them someone to be shunned or an object of pity. My son is just another person in their community and let’s say hi.
We had our kids late in life and we need to do fun things now before we become ‘too old and decrepit’ to do them. In our case, it is important to make those memories now because who knows what the future may bring. People with his genetic disorder are not known for having long lives so we will keep working on that bucket list!
Think about all the things you would like to do with your kids “some day”…some day when you are rich, some day when you aren’t so exhausted, some day when you have time off work. Tomorrow is not given so brush off that bucket list of yours and cross some items off now while you can!
In creating memories that our families will cherish forever, we celebrate their abilities, their differences and their uniqueness! Concentrate on making those families memories while you can. Our family loves to go out and enjoy life. We have always been open to trying new things and making memories together.
I believe that exposing our kids to their community is important for their development both mentally and physically. By interacting with people in their community, they will learn how to be accepting and grateful for their blessings.
We celebrate the abilities, differences, and uniqueness of our families by creating memories that will be cherished forever. Concentrate on making those memories while you can!
If you need some suggestions of things you can do to help your family create memories together, I have created the following list.
- Family gatherings/reunions
- Birthday parties
- Camping in the backyard
- Movies in the backyard
- Nerf wars
- Water balloon fights
- Rent a bouncy house or water slide
- Inflatable pool
- Family paint night
- Put on a play
- Family game night
- Snuggle up in bed or on the couch and read a book
- Hide and seek
- Make hygiene kits to donate to a shelter
- Decorate Dollar Store plastic ornaments
- Play board games
- Play games such as the ping pong twerking game (Hilarious!!) or plastic wrap ball game (look these up on Pinterest)
- Decorate sugar cookies (any holiday)
- Decorate gingerbread houses
- Play-yard games such as yard dice, bean bag toss
- Go for a drive and/or walk to look at Christmas lights
In the community:
- Music in the park
- Movies in the park
- Visit a museum or children’s museum
- Explore a fair
- Go to the library and pick out books, audiobooks, and/or movies
- Tour a petting zoo
- Go on a walking tour of a historical district
- Play at the park. Take a picnic with you
- Go to a Sunday brunch
- Volunteer at an animal shelter
- Special Olympics
- Meet up with other families similar to yours
In the great outdoors:
- Go camping – beach, mountains or somewhere in between
- Try out glamping – yurt or hotel
- Go on a boat tour
- Explore historic areas
- Play at the beach
- Go to the mountains and play in the snow
- Try snowshoeing
- Go skiing or snowboarding
- Go sledding
- Bird watching
- Paddle boats
But we can’t do that!
I can hear some of you saying, “I can’t do that! I have a kid in a wheelchair”, “I have a kid on a ventilator!” or “My kid is too medically fragile for any of that!”. I know it can be tough but there are accommodations that can be made for you and your family to do these things if that is what you want to do.
My son is 19 and in a wheelchair and occasionally, we like to go to the beach and just hang out for a couple of hours. Can we drag his wheelchair through the sand? No, but we do have a beach stroller that makes taking him across the sand much easier.
We haven’t tried it, but I have heard of beach visitor centers having beach wheelchairs that people with disabilities can rent for the day. That is a wonderful accommodation!
Places to go, things to do
If we want to go to the mountains in the winter and go cross country skiing, can our non-walking son strap on some skis? Probably not, although they do make them for wheelchair users. We would probably look at getting a sled that he could sit in and we could pull him behind us.
Same with hiking. We would have to avoid the narrow root-strew trails that we used to hike but we can find paved ones that are wheelchair friendly or take his beach stroller and put the big double tires on it so it would go over wide dirt paths fairly easily.
It’s not important what we do and how that might look different now than it did before we had kids, what is important is that we are doing an activity together, all of us. We aren’t letting our son’s disability slow us down or define us. Yes, it looks different but life is about change and adapting to that change. This is no different.
Part of our community
Now that, hopefully, the pandemic is slowing down and people are starting to come out of their fox holes, we will all need to learn how to adjust to being an in-person community again. Getting out into the public again for our children with disabilities is going to be a change that they are going to have to get used to again.
Take things slow and start small. Leaving the home and trying new things needs to be a positive experience but enjoy the process. Don’t expect things to be perfect right away.
What will your family do?
I am personally looking forward to going for a walk in the woods again and being able to go camping. We still don’t feel ready to take our son out into the world just yet, but maybe soon. In the meantime, I am going to get on Google and start planning some small outings for us to try.
We are not letting our son’s disability slow us down or define us. Yes, it looks different but life is about change and adapting to that change. This is no different.
What is your family looking forward to doing again? I hope it is something great that you will all be able to enjoy and allow you to relax into life again. Leave me a comment below on what family excursions you are planning.