10 Lessons From Parenting Our Son With a Disability

Learning about and understanding my son’s diagnosis has changed who we are as individuals, as parents and as a family. I imagine it has for you, too. Above all, it has allowed us to strengthen our relationships with each other and with the world in ways we wouldn’t change. Here are 10 ways our family has changed for the better because of him.

1. Increase communication.

We appreciate that people communicate in different ways (pictures, words, gestures). As parents, we’ve learned to make time to communicate more with each other, not only for planning and scheduling, but for connecting. We’ve learned to make time for each other (when we aren’t exhausted!) even if only for a few minutes a day.

2. Deepen empathy.

We keep a note on our refrigerator that says, “I’m trying. When in doubt, be kind.” I look at this note every day. I wrote it for us to remember the perspective of our son, but I’ve realized it applies to all of us. Do I always react with empathy first? No. But I’m trying.

3. Recognize courage.

We appreciate the courage it takes to do things that may have come easy for us in our early days. My husband is an athlete and I love connecting with friends. These things are hard for our son, but he is determined and he is courageous. He goes out on the field, he tries to climb the structure, he tries to join groups he finds at the playground. He might be nervous but he pushes himself. I’ve pushed myself more in life because of him.

4. Shift priorities.

We are living in a culture of more. Work more, study more, make more money, buy more things. But over the years as parents, our priorities have shifted. It may seem that they’ve shifted to simpler things, but I’d argue they’re actually more complex. The reality of needing to make money for the family is very real, but we are better at knowing the value of making time for family dinner, a walk outside together, family movie night, or skipping the activity for a longer night of sleep. What do you value and how are you prioritizing it? It looks different for each family.

5. Prioritize relationships.

Relationships are everywhere, and they change our everyday experiences and our own sense of who we are in the world. Relationships begin at home with our partners, our children and ourselves, but the positive power of relationships exist in the woman who holds traffic as we cross the street, the person at the front of the school who welcomes us in, the teacher who reaches his hand out for our son to walk in, the parents who ask how we’re doing (and really care to know), the colleagues or friends who connect with you from near or far. Relationships are powerful, and as a parent of a child in need of some extra care or attention at times, I’ve never appreciated them more.

6. Practice patience.

My son is determined. We will be late for school and he will want to get his socks up on his own. Pull. The. Sock. Up. All. The. Way. But I try to be patient because I want him to know I see him trying, and I think that is more important than getting out the door (most of the time!).

7. Lead with strengths.

As parents in the disability world, we can spend a lot of time thinking about the obstacles in our children’s way. We advocate, we persevere, and we cry with frustration. Sometimes it feels like there is so much work to be done in the world and that we are fighting an uphill battle that keeps growing. We know the challenges and we see what isn’t working because we want to help our children grow and find what works for them. But if we lead with our children’s strengths, not only do we paint a fuller picture of our child, but we get clues about how to use their strength to build up weaker areas.  Wouldn’t you love for people to see your strengths first?

8. Laugh.

As a couple, we’ve always loved to laugh. But raising children can be intense, stressful and exhausting. It’s easy to let the laughter go. We’ve had to work to bring the laughter back, and it is in large part because of our son and the pure joy he gained from simple things like a silly “deep pressure hug and roll” game with his daddy. As parents, we can better appreciate when a tense interaction with children can be dissolved or re-framed using laughter and humor. As a couple, we appreciate what laughter can do for us as individuals and as a team.

9. Play.

We read about it all the time. As a developmental therapist, I preach about it all of the time. “Play is so good for kids and their developing brains!” Many of us stopped playing a while ago and it might take a few tries to get back to it, but I encourage you to try! Turn off communication with the outside world and be silly. Let go of logic, let go of “goals,” just be present and just join. Maybe you’re building Lego, maybe you’re lining up Pez containers, maybe you’re just rubbing your hands in paint. Whatever your child’s interests are, join in. It feels so good, trust me!

10. Embrace those cuddles.

Plain and simple. Always embrace the cuddles.

There are things that would be a lot harder to appreciate without the support of family, friends and community. Lean into others if you can. When we feel better as individuals, we are better as a family and we have more to give as neighbors and colleagues out in the world.