I’ve spent the last two years not writing this post. The first year it was because I felt that if I said my son had a disability(ies), it would be true (and I really really really did not want it to be true). Later it was that I thought I should keep this part of my/our life private. But I’ve realized over the last few months that if you know us, if you ever get to know my son, then what I write here will not be a great surprise. And after being truthful and open with other families recently, I’ve seen that we are not alone. I’ve met some kindred parents in the last few weeks and had wonderful wholehearted conversations with people who ‘get it’. The kind of conversations that I’ve been craving for years. So maybe I can find a few more of us from writing this post.
Also, our son’s disabilities have been a big part of our life the last two years. It has taken up a lot of my mental and emotional capacity. It’s one of the reasons I haven’t been writing on the blog as much. I’m hoping that by sharing here I’ll feel more comfortable writing in this space about our continued quest to live a bit smaller and simpler – without feeling that I have to censor myself. The ‘secret’, a very common one that shouldn’t need to be hidden, is out.
One of my children has several disabilities that make our life complicated, often stressful and far from simple. Some days it really sucks. Some days I feel very isolated. Luckily I don’t have a lot of those days and when I do I try to remind myself that everyone faces challenges, some we see, some we don’t. And I also remind myself that I’m learning a lot about myself, becoming a bit more resilient and a lot more patient, parenting a child that faces a lot of challenges in his day to day life.
My son’s disabilities have also forced us to be minimalist-ish in a lot of areas of our life. I think my son’s disabilities, the challenges they present to our family, is one of the reasons I continue to be so attracted to minimalism. When things I cannot control are complicated, I feel the need to make the things I can control as simple as possible My son’s disabilities have taught me a lot about minimalism, why we need it and why he specifically needs it to make his life a bit easier.
Keep Simple Routines & Easy Schedules
Over-scheduling for our family looks different than for most. We can only have one half day ‘big’ event at a time. That day needs to be followed by a quiet day of rest and routine. So going to a model train exhibition in the morning and a birthday party in the afternoon, with a full day event the next day, is a recipe for a lot of tears and meltdowns and leaving early. All that ‘fun’ quickly becomes unfun for us. Our two other children can handle more taxing events and when it’s possible for them to do that, we try to make it happen. But the overall schedule for the family is mostly dictated by what works for our child with the greatest needs. So we do a lot of the same easy and local activities that we can easily adjust/drop out of if need be.
Stop Comparing Yourself to Others
After a few years of your child not having a typical development pattern you FINALLY learn to stop comparing your kid (and yourself) to others. A few years of leaving parent teacher conferences with red rimmed eyes, have got me to a place of only comparing my son to himself. His progress is on a graph with… his progress. It’s been very hard to get here but I feel that I’ve stopped comparing him to other kids and in turn, I’ve let go of another layer of comparing my life to others. One of the ways we get in the buy more/want more cycle is watching our neighbours, counting what they have and comparing it to our own pile of stuff. Having a child with disabilities really pushes you to stop comparing yourself/your kids with others.
Boil it Down to the Essential
We simply can’t do ‘everything’ for all three of our children. We don’t have enough time and energy and money to run our own part-time forest school, teach them a second language and do whatever else is on the ‘must do to achieve any success in life’ checklist these days. We do the basics: brush teeth, read as many books as we can and get time outdoors. The ‘essentials’ for our son with disabilities include therapies, tutoring, doctor’s appointments, medications that have to be adjusted and notes taken on and lots more. We don’t have the bandwidth to find extra, nonessential ways to complicate our life even more. The basics are good enough!
Own Less Stuff
If you have a child that is highly distracted and gets overwhelmed, it’s best to not have a lot of stuff for them to get distracted and overwhelmed by. So yes, we do have toys, but we try to keep them in one place and not have too many of them. We cull their stuff regularly and remove what isn’t being used. We give modest and few gifts at birthdays and at Christmas. We are slow to introduce new things. The kids are 2, 4 and 7 and are just learning to ride bikes for the first time now. For many years they all just had kick scooters to get around on and have fun with and that was enough. Introducing another option for them complicates things, can overwhelm them and gives us three more things to maintain, store and worry about.
Try to Live in the Present
I’ve spent a lot of time worrying about the past (what did I do wrong that caused this? how could I have gotten him help earlier?) and the future (how will he learn to ____? what will life look like for him at ____? how will we get ____ help?) for my son with special needs. But as we have gone further down the diagnosis route and finally into the therapy/management phase of his disabilities, I’ve learned to live in today a bit more. I cannot change the past, I do not know the future, I can only do the work of today. I’m not perfect at living in the present (nor will I likely ever be) but I feel myself living more in the day right now than I ever have before. Credit to my quirky beautiful son that keeps me here.
Having a child with disabilities has made me lean into minimalism. It’s not a pretty Instagram-able kind of minimalism of nicely folded clothing and spartan rooms with white walls. Some days it’s an exhausting, tearful frustrated kind of minimalism that leads you to make sandwiches for dinner so you can simply sit with that kid that really needs you, needs to be hugged and seen, needs a level of patience that is hard for anyone other than his family to give him, in the time you would usually prepare dinner. It’s a kind of minimalism that has you putting the spring community center programming guide into the recycle bin as soon as it arrives because your child is not in a season of being able to follow instructions, participate or enjoy after school soccer. It’s the kind of minimalism that has nothing to do with what your home looks like but rather what your home feels like: a safe and easy place for your child to just be his or her self.