ONCE UPON A GENE - EPISODE 005 - It’s Your Party and I’ll Cry If I Want To
Synthiea and I are discussing holiday parties and tips for how to support your friends and family with kids with disabilities around the holidays, how to be inclusive and make events comfortable.
EPISODE HIGHLIGHTS
Why getting to an event isn't easy.
Starting with wheelchairs, they're a big deal. We have to think about how accessible a home is, how to get the kids in, can the wheelchair be used in the house? Most houses have stairs to get in. It's helpful to know when we're invited to an event what the accessibility is so we don't have to ask about the wheelchair and feel uncomfortable. Details like this makes us feel normal and approaching us takes it off our to-do list and it's one less thing we have to do to make it work and manage our kid's life.
Why we will have to leave early.
Chances are, we'll have to leave an event early because we don't have the stamina, our kid doesn't have the stamina, we forgot to charge equipment or we've run out of medical supplies. We stay longer if we can get help, so we're not physically helping them the whole time. The job is physical and taking over for a little while will definitely be helpful. We love if you want to learn how to help feed our kids or use the pump and allow us to relax a little bit. Please ask if you're interested in learning.
Why we're going to be late.
You get you kid dressed and ready, they're in the car and ready to go and they puke out of nowhere.
Why gifts are complicated.
It's best to ask what gifts our kids can use of need. Ask about sizes for sure because our kids aren't necessarily the same size as their peers or they have special sizing considerations you may not be aware of that makes dressing easier. Our kids also aren't using the same age-range of toys as their peers. There are toys that may be more advanced, but they're able to use it as part of their therapy. There's almost always a toy or game we can use that will be fun and double as a therapy toy. When you wrap them, don't use a lot of tape. The minimum amount of tape makes it easier for them to open. Tissue is a good wrapping paper for them to make gifts more easily accessible.
What to consider for the food menu.
Some of our kids can eat and can taste things. It's best to ask what kids can and cannot eat. For some, there are highly restrictive diets and foods that have to be avoided due to medications. Include the child as much as possible. Kids like to be included at the table, even if they don't or can't eat.
Why mommy sessions are difficult.
It's really hard to listen to mommy sessions where complaints are exchanged around how your kid is doing something annoying when moms like us would go to the ends of the Earth for our kids to do it. Please don't complain about milestones that we're striving so hard to hit. We're going to be late and leave early, so save those conversations for when we're not around.
Why some things just won't work for us.
Despite careful planning, there are instances where we simply can't subject our kids to certain environments, such as large crowds or loud venues.
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