Advice From A Special Needs Mom In The Middle

If you were to divide your special needs parenting life into stages, they might be arranged from the day your child is diagnosed with differences, to the period when they reach adulthood and possibly independence, or the equivalent based on their abilities. Some parenting timelines might end before that. I can’t bear to think about that. I know parents who had a child leave this earth too soon, and though it’s painful to imagine, I have learned so much from them.

Their stories about grief, and strength, and compassion, and courage have encouraged me to find gratitude through the difficult days. 

I’m a mom currently somewhere in the middle.  

I read this quote recently. I don’t know who wrote it originally, but I thank them for these words. 

One day you will tell your story of what you’re going through now, and it will become part of someone else’s survival guide. 

 

Sharing our unique family’s story helps me to process, celebrate, and make peace with what whatever we’re going through. And if it happens to help or comfort or even guide others who are following behind us, that’s even better.

Here a few things that we’ve learned along the way; from the beginning, into the middle. 

  • 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 you’ve come.
  • Make friends with other parents who “get it.” Special needs parents on the front lines will be your number one source of information, support, and parenting hacks better than any you’ll find on a Buzzfeed list.
  • Embrace your new tribe, but don’t shut out friend who have typical kids. Let them in. 
  • Explain what you’re going 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 pass.
  • 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. This is separate from the medical care you need for your child. Find a doctor 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 family is unique. 
  • People 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 will be no. They’re immature behaviour says everything about them and nothing about you or your child. 
  • Seek help filling out complicated forms (these can be SO overwhelming!). Same goes for navigating legal processes like setting up trust funds/your will etc., applying for special funds and financial assistance or grants. You could probably figure it out, but it’s much 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.
  • Social media is good until it’s not. If it’s making you feel sad or envious or guilty or lacking, shut it off.
  • 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. 
  • Read as much as you can BUT be critical. Not everything you read (especially on the internet) is true or set in stone. 
  • Remember that every family has challenges—some even more difficult than our own.
  • 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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