Parenting is hard, period. And when your child is disabled, the job can seem even more daunting. Our days are filled-to-the-brim with appointments, therapies, and paperwork. (And don’t forget about the the bills.)
And when we’re not actually doing anything, we’re thinking about what we should be doing, or need to get done, or that we’re not doing enough. Stop me if I’m wrong.
I’m a mom raising four boys. My youngest two (we call them the babies), were born six weeks premature. Ever since their early arrival, they’ve continued to present with various delays and conditions, including autism.
I’ve learned so much from all of my children, and from the mistakes I’ve made with them throughout the years. Combining those lessons with the ones I learned teaching elementary school, I’ve created a list of rules.
Of course these aren’t the only rules we’ll ever need, but I’ve found that these situations have come up the most. So if you’re a parent of disabled children, here are 7 rules that I’ve learned along the way.
1. Listen to your gut.
I listed this rule first, because it’s the most important. I can’t tell you how many times I’ve sat in a doctor’s office and heard something that just didn’t sound right.
Don’t be afraid to voice your concerns. You may not wear a white coat, but you know your child better than anyone else. You are the expert.
And remember, it’s never too late to speak up. Sometimes, you may not know exactly what your gut is telling you when you’re on the spot. It’s okay to go home and think about it, or talk with someone who can help you figure it out. Just don’t forget to follow up!
2. Get rid of any doctor that says your child won’t be able to do something.
This rule goes for teachers and therapists, too. The only people who can tell us what our children can achieve is, in fact, our children. We can’t waste precious time surrounded by people who don’t believe their potential.
3. One support system just won’t cut it.
If it takes a village to raise a child, it takes an army to raise one with disabilities. Hopefully you have family and friends who you can lean on.
But it also helps to connect with people who are traveling a similar path – people who can understand your unique situation. Find a support group in your area.
My area has an active parent support group. We share information about doctors, schools, and health insurance. We also help plan events for families, and outings just for the adults.
To be honest, the autistic community, those who’ve been in my children’s shoes before, have given me the most help during this time. Seek out adults with your children’s specific disabilities and learn from them as well.
4. Erase the word should from your vocabulary.
This word has bothered me since my oldest child was born. When he was only a couple days old, the nurses told me, He should be latching by now. When he was six months old, his doctor said, he should be able to sleep through the night.
Well, he’s not!
Yes, there are milestones. Yes, there is a range of normal development. But the word should sounds negative, and it isn’t helpful. Here’s an example:
Your child is 16 months. He should be walking by now.
We expect to see children starting to walk anywhere from 12-15 months. Let’s see how we can support that.
See the difference? The language we use matters. Train your team of professionals to use milestones as a way to help guide your next steps, instead of having a state-the-obvious contest.
5. It’s okay to cry.
Parenting is a hard job, especially when you’re navigating medical waivers, IEP meetings, therapies, and appointments. You don’t have to feel guilty when you get overwhelmed.
Let it out! You’re allowed to have bad days, too. But after you’re done, pick yourself back up and keep moving forward. You’ve got this!
6. Take time to enjoy yourselves.
Don’t get so caught up with your to-do lists and your appointments that you forget to enjoy life. Take the time to be silly and let loose with your little ones. Build a fort or watch a movie. Go for a stroll without a goal.
Your children don’t have to make honor roll or score five goals in order to celebrate. Our family sang Happy Birthday three times the other night because my twins wanted to blow out my dad’s birthday candles. Hey, why not?
None of the work you do matters if you can’t enjoy yourselves.
7. Take care of yourself.
I wrote this rule last. If it was first, you probably would’ve skipped the entire article.
I know that you don’t have time. I know you feel like your needs can take the back burner until things get a little easier. But raising disabled children doesn’t always get easier with time.
To tell you the truth, no parenting gets easier with time. That phrase was invented by a group of Grandma’s around the beginning of time when their daughters had newborns, just to give the new moms a bit of hope. (It’s a lie!)
Sure, there’s a sigh of relief after potty training, and another lull around third grade. But rest assured that hormones are right around the corner. Parenting doesn’t ever get easier – it only gets different.
So yes, you have to take care of yourself in order to continue taking care of your children. Get your feet done. Go on a date. Hang out with your friends. Make the effort to enjoy being you – not as a caregiver, but as a person.
Now I realize that I’ll get a lot of comments on how this list applies to all parents. And I guess it does. But the stakes are higher when your child have disabilities. There’s less room for error. So I wrote this with those parents in mind. Because I’ve learned some of these rules the hard way, and sharing is caring.
What rules would you add? Maybe I’ll write a Volume II.