Socializing & Parties

It often crosses my mind that many of our family and friends may see our avoidance to attend their parties or visit is because we don’t want to be around them. However, this is not the case. For us taking Kye out to visit other people particularly those with little children is hard. If you have stairs in your home our son can’t use them without one of us assisting him. If you have playground equipment that involves climbing, Kye cannot use it.

Kids parties are always hard, most of the other kids will be running around, climbing, jumping etc. Kye cannot keep up with the other kids. He cannot jump, and running is a struggle. Getting up off the floor is a struggle, even walking is now becoming a struggle (and wheelchairs open up a whole different argument, because most people’s homes are not equipped to handle a wheelchair).

On the occasions we have been to parties, Kye is alone with us not joining in with the other kids. When he does try to join in, he realizes he can’t do those things - which is upsetting and frustrating for a four-year-old boy to understand. Being in a bunch of hyper kids Kye runs the risk of being knocked over by accident due to his lack of balance and movement.

We tend to invite most people to come visit us at home, to come for a BBQ, drinks etc., not because we don’t want to come to your house or think your house is not good enough. Simply because our home is familiar for Kye, it is safe, he has things he can play with here, our home is equipped for Kye - flat ground, ramps on veranda and no stairs for Kye to climb, no hills etc. it's just easier for us to stay home and entertain. Keeping our little guy safe and happy is our goal, we have to put his needs first.

It may seem like we are just avoiding you, but that is untrue… we are trying not to burden you with our son’s issues, and avoiding our son feeling left out. It’s hard to understand when you don’t have a child with a disability. I wanted to explain a little as I often feel guilty that we don’t attend parties or visit etc., and yes often we do make excuses to not attend, because it seems easier to say hey we can’t make it we have something on, rather than try to explain something that really I think should be obvious to people who know Kye has DMD.