Finding Me in the Mess

It's Not for Everyone

In my hopes to do some fun activities this summer for my family which is not always the easiest. I have 7 kids ranging from 6 to 21. It would seem my two oldest 21 and 20 would be living on their own and starting independent lives, but they both are Autistic and need some more time at home. Even as they get older I will want to include them them with family outings. My youngest with Down Syndrome is not walking yet and uses an adaptive stroller. Carrying him is difficult and he doesn't understand how to be carried. Even with all the challenges we have gone to a museum and a local pride event a the zoo so not bad. We haven't been to the beach, but most of the days we could go it's been raining. This summer activity used to be easier but I love the water so much I push myself to go. This year I decided not to do anything with our local festival called Spud fest. I am still disappointed it's not more potato themed.

I decided to skip the festival and the local parade. When we moved here I was excited to go and parades even though going to parades with Autistic children is not the easiest to navigate. My AuDHD actually does well with controlled chaos. The trick is not to arrive too early and the first time will be the hardest. I had taken my kids to the Anoka Halloween parade and definitely recommend if you live close enough in Minnesota.

For the first few years we lived in Big Lake I actually was in the parade and did so for a few years until I got sick of it. I wanted to attend the parade and found out why a lot of people said they skipped it. It's a small parade, just over a mile long so space can be tight and people leave chairs out the night before to mark their spots. People get early and are very territorial of where they stand or sit. Even not allowing kids to sit on the curb in front of them when they are not blocking their view which was new to me. I went late because I had twin 3 year olds and one was a runner, now I know its because he has ADHD. Waiting with multiple kids disabilities is not easy and their isn't a lot compassionate people out there. Now I would have to deal with trying to figure out parking with a wheel chair lift and having a kid who still might bolt. The idea of getting there two hours early is not easy. There is so much more involved like like trying to keep everyone calm and dealing with my youngest son who is severely developmentally. It felt like chore more than a fun moment with my family. I get activities with our kids is not easy or fun but this was above and beyond the normal level of hardship.

Parades are not for everyone and I don't mean like not everyone enjoys them. I don't know why but for a lot of people are not for helping disabled people be part of community events or public places. A few years ago we had a company plant mini sunflower fields in several cities. They were amazing and walking through them as such a cool experience. There were plenty of photo opportunities because of the different props hidden amongst the flowers. On a local forum one poor soul asked if the field was wheel chair accessible. Wow, you would have thought they threatened to kick a puppy for the backlash they received. A lot of comments were why would you think a field could be okay for wheel chair. It's not like they are human and want to experience what other people might enjoy. This question was treated like someone was demanding things be changed, because they were entitled to it. In someways shouldn't disabled people have access to beautiful or fun? I understand not everything on the planet cannot be wheelchair accessible, but a lot of things we can try to. I commented on the question that the main path around the sunflower field should be good for wheelchair and the smaller trails were not.

Parades are not welcoming for Autistic or disabled children or adults and here's why. First waiting for certain kids is hard and meltdowns are tricky to navigate. You can plan and take things to entertain or distract, but that doesn't always work. You have to keep a close eye because of elopement and or running is another issue. They're is safety concerns as well. Parking is a nightmare and I don't even know where to park now because I have a wheel chair lift and handicap parking spots are usually the first to go. I need a van accessible spot and those are the most popular spots. If I go early then I need Blaize's play yard, peidasure, bottles, diapers, baby wipes, spare clothes, water for the rest of my kids. The only way to go is if you are early and to be honest that is doable, but it's not easy. It doesn't help of for anyone with fully-abled children getting there two hours before the event and question you why you're late. If they did it and it was easy so it should just as easy for everyone. My son with DS also has a harder time regulating his body temp so being out less is also helpful.

My blog today is a mini rant about parades, but hey it's been on my mind. We will be going to other parade which is bigger and overall a better experience. Is there anything that can be done? I'm not sure, but I know one thing the next time I see someone coming to a parade late I'll welcome them and move over a bit so they have spot too. In the end aren't we all just trying to enjoy the parade and maybe get some candy?