5 Things Parents in the Special Needs Community Need to Remember

This post may potentially bristle some feathers, but please know that none of what I’m about to say is meant to degrade anyone. There are a few things I’ve observed while meeting other parents and finding out about all the services available to special needs children. Here’s my list of five things I think we all need to remember:

1. No one wins the competition of who has the sickest child.

It’s tough when I see parents discussing how much worse their experience is than others and diminishing your child’s situation because they feel their child has it worse off. Here’s the truth: Having a life-threatening illness or developmental delay can be hard. Parenting a child who has a life-threatening illness or developmental delay can be hard. No one wins this competition. In fact, it’s not a competition. It’s a reality we have to deal with. We all have things we go through, and we just need to exercise empathy and sympathy for those going through challenging times.

2. Criticizing providers can be unproductive if it’s not constructive.

I’ve noticed how some parents who are the most unhappy with their child’s experience at a specific hospital or clinic tend to be the loudest when criticizing providers. I admit I got pretty loud initially when Von wasn’t getting the care he needed from a pediatric group. But in time, I realized my emotions were fueled by my desire to keep him safe, and I knew we weren’t a good fit for that hospital.

Calling out a doctor, care system or nurse on a Facebook page or forum can be unproductive if your criticism isn’t constructive. Plus, delete doesn’t always make your rants go away. So choose your words carefully.

3. Celebrate the things your child can do instead of what you know they can’t do.

This is something I’m also guilty of, but I’ve been making a point of really changing my whole outlook about what Von can do and what he is good at. Our kids are dealing with things other kids never will. They take meds, attend therapy and work hard for every single milestone. Remember the achievements they have made and celebrate them. High-five, fist-bump, have a beer or do whatever makes you happy to celebrate. Find a way to live in the positive.

4. Take a break and make sure you take care of yourself.

All too often I see parents running ragged. I see moms who are not sleeping, eating poorly and not finding time to really take care of themselves. Our children need us to be physically, mentally, emotionally and spiritually healthy. Find time every day to do one thing for yourself, even if it’s with your child. Take your kid for a run in the stroller, take a bath, read a book, pray, zone out or simply just sit in peace. Your child needs you at your best. Don’t forget to take care of yourself.

5. Don’t be afraid to ask for help. It’s hard to do this on our own.

Many of us are working full time, managing numerous doctors and therapists, countless appointments, medication schedules and refills and development. It’s not possible to do it all on your own. It’s OK to ask for assistance. No one expects us to be supermom. I’ve been so guilty of this and have had to really let go and start allowing other people to watch Von. I’ve had to go outside of my comfort zone to do it, and I hated having to do it. But I know it’s for his best interest and mine. I can’t be everything to Von all the time and still be good to me.

Katie Paulson the mighty

A version of this post originally appeared on Von’s Super Hero Facebook page.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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