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To a New Parent of a Child With a Disability, as My Eldest Goes to University

Dear new parent of a child with a disability,

Welcome to a fantastic journey — one you never asked for, signed up for or (probably) trained for. As much as it may feel like your world has come crashing down around you, or that you can’t possibly handle this, the truth is more complicated than that. The truth is there will be highs and lows to this journey that you may only be able to appreciate down the road. The truth is also that you already have the one key ingredient needed for success: you love your child. Since that seems like a pretty hand-wavy answer (and I got very frustrated when people used to give it to me), as my eldest leaves home for university today, here are some of the things I wish hadn’t taken me quite so long to learn as a parent.

Our minds thrive on reinforcement.

The stories we tell to ourselves and our children become the “software for our souls.” So tell positive stories whenever possible. Reinforce positive behavior, however carefully you have to look to find it. Sometimes success will be found in giant leaps forward in your child, and you should totally celebrate that. But sometimes success will be found in the moments when you know how to respond better than you once did, or you’re more prepared for this need than you once were, or you come up with the most incredibly creative solution to a problem you deal with every day. Celebrate these things too!

Depending who you ask, “they” say we need between five and 10 positives to counteract every one negative. The negatives will come quickly and easily throughout the day some days, so actively look out for and comment on every positive you find.

While you’re talking about all the positives, tell the story of the day ahead and recount the highs of the day you’ve just had.

Talk about the upcoming trip you’re planning, or read books about the new adventure of going to school, welcoming a new sibling, visiting Grandma’s or even going to the hospital. Reinforcing the positives and preparing in advance for change helps all of us create a sense of grounding — a sense of safety. It helps us know what to expect and where we fit in what’s to come. This in turn forms the foundation for hope and resilience, enables flexibility of thinking and helps us to connect and bond with our child even on the difficult days.

Remember that just because something isn’t easy doesn’t mean it isn’t possible.

Patience, creativity, gentleness and love create the best possible environment for humans to learn. This reality is often heightened in those with physical and intellectual disabilities, or for those who are neurodivergent (autism or ADHD). Over the years as a society we have made all sorts of assumptions about how far certain individuals could go, and we always seem to be surprised by the accomplishments of those with disabilities. But along with the inherent differences between us all, there is almost always a parent or teacher(s) who took the time to create an environment that supported the individual so uniquely that they were able to reach their full potential.

Spend as much time out in the community with your child(ren) as possible.

Go to library story times. Go to the grocery store. Take the bus. Go to the beach and the park and the splash pad. Go for walks under the trees or in the woods. Play with friends. Look for extra-curricular programs like dance and martial arts and music where the instructors understand your child’s unique abilities and challenges and are committed to supporting their growth and success. It can be easy to get so overwhelmed by our child’s “extra” needs that we forget we need to make space for their childhood as well. These outings can form the building blocks for independence years down the road. It can also be easy to forget that we — their caregivers — need fresh air, exercise and human interactions to be able to care for ourselves and our children well.

The bigger your support system, the better this is going to go.

Maybe you have a big support system right now. You’re going to need those people. Invite them to help, call them up for a chat, invite yourself over for dinner. Maybe you are entering this parenting relationship with very few supports. You’re going to need to seek them out. Look for support organizations, online parent groups, mom and tot groups or faith communities that fit your values and beliefs and then spend the time and effort and energy it takes to build deep friendships. Regardless of what your support system looks like today, it may be worth finding a coach or therapist to give you some added supports. I know it may sound like a lot to do right now while you’re eyeball deep in the newness of everything, but I honestly don’t know how we would have made it without our “crew.”

A few very practical points:

  • Learn your child’s hunger, fatigue and pain cues. While this can be relatively easy with some children, others seem to have more subtle responses that can look a lot like “behavioral issues.” Don’t assume that just because your child doesn’t tell you they’re hungry, tired or in pain doesn’t mean they don’t need to eat, rest or have support to address their pain.
  • Try not to rush your child. This is true when it comes to “simple” things like when we move from one space to another or transition from one activity to another. It’s true for ‘big’ things like how long it takes to find your child’s best form of communication, what the process of toilet training will look like or to what degree your child will walk, navigate their community successfully, read or write.
  • Try not to underestimate your child. As important as it is not to rush your child, it’s also really important not to underestimate them. Kids can surprise us — and will most days — with what they are capable of learning. Follow your child’s lead. Watch what interests them and what brings them joy. Give them lots of time and opportunity to interact with those things in ways that encourage learning. Encourage them to take risks, because it is only when we reach for the limits of our abilities that we find just how far we can go.
  • Use play wherever possible. Use it to diffuse tension. Use it to encourage learning. Use it to reward successes. Use it to deepen connection. We can get so caught up in the responsibility of raising these precious children that we forget one of the most effective tools we can use with a child — play!
  • Autonomy and agency are critical to success. Always look for ways to give your child autonomy and ask for consent when it comes to your interactions with their bodies. They may need more physical hands-on assistance than other children their age, but whatever age and stage they are at, they should have as much say over how things are done, where they are done and who does things for them as possible. Those choices can extend beyond the physical to other decisions throughout the day. Offer choices like, “do you want to wear the red t-shirt or the blue t-shirt?” “Do you want to eat your peas first or your carrots first?” Or “Do you want to do your physio first or do your wound care first?” Our kids have to do so many things, and have so many things their bodies or minds won’t let them do, that we need to take every opportunity to give them free choice in the order and details of their lives. This gives them a sense of control, helps with meltdowns and other “behavioral” issues, and instills in them the idea that they can and should expect their bodies to be treated with respect. This in turn can help protect them from being taken advantage of down the road.

Finally, in this journey of parenting a child with a disability, there is going to be fear and love.

Unfortunately, when fear and love intersect there will be tension. Tension increases anxiety, and anxiety causes stress and tantrums and meltdowns (and makes it so we can’t learn). So when you notice you are starting to feel afraid, try to take a deep breath, remind yourself that you are doing the best you possibly can, and reach out for a bit of extra support. You can only give love to your child when you yourself are seen, known, valued and loved.

You are not alone.

Getty image by JBryson.