Raising a child- or children with special needs is often a lonely journey.
Unless you’ve experienced parenting a child with disabilities yourself, it’s hard to understand what families like ours go through daily.
For people on the outside looking in, it’s often confusing.
They’re afraid of saying or doing the wrong things or just don’t know how best to support the family.
We don’t expect everyone to be mind readers, but there are some things that families like mine wish people knew about us.
- We’re not superhuman.
As much as we’d love to think we have it all together and are even flattered by this assumption, the truth is that we’re just regular people who have been dealt some extra parenting challenges.
We have good days and bad days. I promise we don’t have a secret stash of capes in our closet!
- We don’t want our kids to be used to make people feel better about themselves.
We love it when people acknowledge our kids and want to be around them, but we don’t love it when done for the wrong reasons.
We want people to be around our kids because they genuinely want to be around them, not because they think they’re doing them some kind of favor or want to make themselves look good.
- We’re not living in fear.
We’ve heard this one a lot this past year during the pandemic. We’re not living in fear; we’re living in reality.
Our reality is that COVID-19 could do some severe damage to our ten-year-old with chronic lung disease. It could be deadly for him.
Taking extra precautions, wearing masks in public, and laying low even more than usual isn’t us living in fear- it’s us trying to keep our son out of the hospital at all costs.
- Words matter.
We know most people are only joking when they throw the “R” word around, and they don’t mean any intentional harm, but as a parent to a child with an intellectual disability, it cuts to the core.
It’s derogatory and offensive, even when it’s used in jest.
- We still like to be included.
When you have multiple kids with special needs, you end up declining a lot of invites.
Eventually, people stop inviting you. It’s understandable, but it also hurts.
We’re still here and like to know that we haven’t been forgotten.
- We need your help teaching your kids about inclusion.
Kindness and tolerance of people who are different is a learned behavior.
We don’t mind educating people who have questions - even blunt questions from the younger kids, but when you hurry your kids away from ours and teach them that it’s ok to be afraid or poke fun at them, you're sending a really inappropriate message.
- We don’t have the time to chase you.
Relationships evolve and change, but if you've drifted away and made no effort to keep in contact after a couple of outreaches on our part-the ball is now in your court.
We don’t have time to chase people who aren’t interested in keeping in touch.
- We’re terrible at asking for help.
We don’t expect people to go out of their way to help us, but we’re so grateful when they offer.
Sometimes during a medical crisis, we don’t even know what we need until someone drops off or delivers a meal or does some everyday tasks that we’ve completely forgotten about.
- We don’t need you to fix things; just listen.
Sometimes we just need to vent. We aren’t asking for solutions or unsolicited advice- we just need someone to listen to us with a non-judgmental ear.
- Our child’s diagnosis doesn’t define them.
Our kids have many diagnoses, but we don’t want them to be known as “the girl with autism” or “ the kid with the trach.” It may be part of who they are, but it’s not all they are.
They’re just two kids who happen to have more challenges than most, and like everyone else, want to be accepted for who they are.