20 Things Parenting a Child With Disabilities Has Taught Me
Hi there, this is just a quick note to let you know that you’ve reached one of our older stories here on The Mighty, and it contains some outdated language. We’ve updated our editorial guidelines, and no longer use “special needs” to refer to children or adults with disabilities. “Disabled” is not a bad word, and children with disabilities have human needs, not special needs. You can learn more about the reasons for this change here. We’ve updated our vocabulary, and we hope you will, too.
Each day provides an opportunity to learn more about my inner self, about relationships and about life. Many of these lessons were learned when my youngest son, who has autism, was very little. His needs during the time could certainly be described as special. I love and respect my son and I want to do whatever I can to support him and help him to thrive. That’s when I slowly began to develop some guiding principles I still try to turn to whenever I find myself in difficult situations.
I may have learned these things, but it doesn’t mean I’ve mastered them. I’m still a work in progress. Here’s my list of things so far that parenting a child with special needs has taught me about life in general:
1. Beauty can be found in unexpected places.
This first one may sound trite, but it’s an essential truth I cling to. Life can present us with struggles, yet it’s in the midst of darkness we truly appreciate the light. During our journey, I’ve learned about strength, love, perseverance and forgiveness. I’ve also met some amazing people along the way.
2. Embrace what makes life unique.
The world is full of opportunities for adventure. It’s also populated by a gloriously diverse people who have a lot to teach us and deserve our respect and acceptance. Different is awesome and can provide a refreshing new perspective on things. In my house we call it “not boring.”
3. Parenting can be hard sometimes.
Special needs or not, it can be exhausting to have another human being be dependent on you for all their needs. That doesn’t mean our children are a burden, because we love them. However, full schedules, perpetual problem-solving and things like constant medical concerns can make us weary.
4. Ask for what you need.
The people in our life don’t always know how best to help us. They may also assume we don’t need anything if we don’t ask so speak up. Sometimes, we require assistance to get through things. It’s not selfish or weak to ask for help.
5. There will be periods in our life where it feels like we take more than we give.
This can be especially hard for caregivers to accept. Remember our worth isn’t defined solely by what we do for others. There will be other times in your life when you’ll be in a position to help someone else who is in need. The scales are never balanced.
6. You’re stronger than you think.
“I don’t know how you do it,” I have heard people say. We just do what we have to. I think we often underestimate our own abilities and don’t realize how strong we are until given an opportunity to flex our muscles. I’m immensely impressed by the strength and resilience displayed by my son after witnessing some of the obstacles he has had to overcome. The power of the human spirit never ceases to amaze me, and adversity can teach us and help us to grow. But it’s important to remember this next one …
7. Self-care is essential.
Exercise. Try and get enough sleep. Eat healthy. Find what helps you relieve stress and then somehow find time to do it. Clear the schedule. Unplug. And for goodness sake, pamper yourself once in a while. You deserve it! You need it!
8. Be honest about your struggles.
Allow yourself to feel even the negative emotions and talk about them. Those feelings are there to guide and teach us, and it can be damaging if you simply push them back down inside. Find people who are safe sounding boards and vent away.
9. Keep moving forward.
Let it out, but then let it go. Try not to get stuck in a negative place because it can warp your view of your situation.
10. Count your blessings.
Every day. When you constantly focus on what you don’t have, you can lose sight of what you do have. Instead, try to be positive. Gratitude will help carry you through.
11. There is danger in comparison.
Don’t look at your life through the lens of someone else’s. Their life isn’t better or worse, it’s just different. Besides, you don’t know what struggles they face behind closed doors. The soccer mom with designer clothes and seemingly perfect children may have had a really horrible, difficult day and just hides it really well.
12. Don’t begrudge someone else their difficulties because yours may be different or seem worse.
This isn’t a competition to see who endures the most pain. Everyone struggles in life. Be sensitive to one another.
13. Appearances aren’t always what they seem.
Give people the benefit of the doubt. Try not to make assumptions without knowing the whole story. That meltdown from a screaming child in the grocery store may be the result of sensory overload and not a “bratty kid and bad parenting.” If you can’t say something helpful, then it’s best to keep your opinions to yourself. Keep your mouth shut and don’t judge. If someone else says something you find hurtful, don’t be quick to take offense. Instead, try to discern their heart and intentions.
14. Remember everyone responds differently to stress.
Unexpected experiences can make some people more compassionate, but it can make others appear hard. As you go through life, you may find you switch back and forth between these responses.
15. Don’t be afraid to say no.
Establish boundaries and save your energy for events and activities that will have a positive effect on you or your family. If something would be too difficult, then decline the invitation. Don’t set your yourself up to fail by getting into a situation you know would be problematic or overly stressful. The well-being of your family is your first priority, and those who really care about you will understand that.
16. Cut out the negative people and add in the positive.
If a person is draining your emotional energy or doesn’t “get” you or your child, it’s OK to invest less time in them. Find a community of people who will encourage and care for your family. It’s also helpful to get input from multiple informed sources and experts. Build a team of individuals who you trust.
17. You are your child’s best advocate.
Trust your instincts. Don’t be afraid to fight for accommodation in the schools or ask a doctor for a second opinion. I know many parents who have circumvented problems by being persistent and questioning the experts.
18. Love and accept people for who they are, rather than who you expect them to be.
That includes acceptance of any sort of medical diagnosis your child may receive, but don’t allow the diagnosis to limit anyone’s hopes for them. If you are a parent, remember your child’s journey is their own unique adventure.
19. Celebrate every new milestone and accomplishment.
Be sure to tell your child how proud you are of them. Take time to rejoice in their growth and achievements, no matter how small they may seem to outsiders. Celebrate your own victories, too!
20. Be kind.