Advice From A (Disability) Mom In The Middle

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If you were to divide your parenting life into stages, they might be arranged from the beginning—the day your child is diagnosed with a disease or disability, to adulthood and independence, or the equivalent based on their abilities. Some parenting timelines might end before that. It’s unbearable to think about. I know parents whose child left this earth too soon. It’s painful to imagine.

Their stories about grief, strength, compassion and courage have encouraged me to find gratitude in the difficult days. I have learned so much from them.

I’m a mom somewhere just north of the middle.

“One day you will tell your story of how you overcame what you went through and it will be someone else’s survival guide.”

Brene Brown

Sharing our unique family’s story helps me process, celebrate, and make peace with whatever we’re going through at every stage. And if sharing helps or comforts or even guides others who are following behind us, that’s gravy. Mmmmm….gravy.

Here are a few things we’ve learned along the way; from the beginning and right on into the middle. 

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• It helps not to look too far ahead (or Google all the things that may never happen).
• Remember to look back and marvel at how far your family has come.
• Make friends with other parents who “get it.” Parents and caregivers on the front lines will be your number one source of information, support, and parenting hacks greater than anything you’ll find on a Buzzfeed list.
• Embrace your new tribe, but don’t shut out friends who have typical kids. Let them in. 
• Explain what you’re experiencing or working through. People might not understand, but they want to.
• Ask for help.
• Actually accept help. 
• You know your child best. Don’t expect specialists to know everything. They can’t possibly keep up with the ever changing world of medicine and genetics.
• You’re not a bad person if you feel jealous or envious of typical families. That feeling is normal and it will come and go.
• Find a doctor who you trust and who listens to you. If they tell you to “just relax” or make you feel like a burden, find a new doctor. Also, find a medical professional who will take care of YOU. My doctor was a life preserver in the early days when I felt like I could drown at any moment.
• When you’re feeling lost, remind yourself to take one day at a time. Tomorrow (at the very least, next week) will be better.
• Try not to compare your family to anybody else’s. Your child is unique. Your family is one-of-a-kind.
• People will stare or say really insensitive things. This will make you angry. But before you let it ruin your day, ask yourself, “Do they matter? Does what they think affect how you feel about your child?” The answer is no. Their behaviour says everything about them and nothing about you or your child. 
• Seek help filling out complicated forms (these can be overwhelming!). Same goes for navigating legal processes like setting up trust funds/your will, etc., and applying for special funds and financial assistance or grants. You could probably figure it out, but it’s just easier if you have help from somebody who knows how it all works. 
• Write things down. Start a blog (even if you never publish it) or a journal. Keeping track of the milestones and challenges will become a valuable resource to you later on. 
• Reach out to parents who are few years ahead of you in “the journey.” I can’t believe I just used “the journey” but there it is. But seriously, reach out and ask them questions about areas they just experienced that might be coming up soon for you. They are the most valuable experts who have a wealth of useful, helpful knowledge. Plus, they’ll give it to you straight.
• Once your brain is full (medical details, appointment schedules, all the daily incidentals take up space), tackle what’s already in there before you add more. If you don’t need it, let it go and make room for happy thoughts. 
• Keep documents—medical results, therapist’s notes, assessments, a list of all doctors/therapists names and phone numbers, etc.—in one spot. I use a binder and my extended family knows where to find it. But there are also apps that can be useful in this way.
• Social media is good until it’s not. If it’s making you feel sad or envious or guilty or lacking, shut it off.
• At some point, your child will be excluded, teased and possibly bullied. Hopefully not often, but this will happen and it hurts. But take comfort in knowing that this happens to pretty much every child, special needs or not. You may not be able to stop it, but you will be able to give your child the tools and support to get through it. 
• Learn to meditate. And teach your kids this skill. Or at the very least, learn a few deep breathing exercises. These will come in handy on the stressful days.
• Read as much as you can, but remember to be critical. Not everything you read (especially on the internet) is necessarily true or even set in stone. Check the date on everything you read too. Things change and becoe outdated rather quickly.
• Remember that every family has challenges—some even more difficult than our own.
• Neurotypical doesn’t mean perfect or without challenges.
• Try finding the humour in even the darkest corners. It’s there. And as they say, “laughter is the best medicine.”

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