Life is Hard for Neurodiverse Families

Are there specific things you can point to that are harder for your family as a whole, or just for you as a parent, than you would say is typical?

This is a question I am being asked in a podcast interview tomorrow.  I wanted to blog about it because I can’t stop thinking about it.  I always am thinking about how life is more difficult for my son…but what about us as a family, or me as a parent?

Parenting is very hard; any parent will tell you that.  It is exhausting and energy-draining, time-stealing and anxiety-causing.  But being the parent of neurodivergent kids takes this to a whole new level.

How is life more difficult for us?

From the moment we wake up to the moment we go to bed, we are walking on eggshells.  Every moment is planned around and scaffolded.  My son needs to eat the same granola every morning, so we need to have that granola here, or all hell breaks loose.  He likes his green bowl with the handle, and no-one, absolutely no-one, can sit at his stool at the breakfast bar.  But these are all simple things…

How about leaving the house?  Yes, we have the regular searching for lost shoes.  But my son also needs to have the right socks on, and only one pair in seven will be right, and that is after a lot of trials and plenty of tears.  We need to take food with us everywhere we go, because of my son’s very limited diet, and need to snack at random times.  Then there comes my son’s general anxiety about leaving the house.  This manifests in a few different ways: tantrums, meltdowns, shouting, aggression, refusing and dragging feet.  This happens just about every time we go anywhere, even when it is somewhere he is looking forward to going.  This stress causes my already emotional daughter to break down into tears, so do I comfort her, or help my son find the right socks?  Is this all so bad?  Not if it is only once or twice…but five days a week, for hmmmm, a good four years now and no end in sight?  It is utterly exhausting, and frustrating.  Being verbally abused when you’re on your way to take your kids swimming with their friends when you yourself would rather be home doing your own thing leaves you feeling rather underappreciated!

How about learning?  We homeschool, so all of my kids’ learning is my husband’s and my responsibility.  Why do we homeschool?  Because my kids do not fit into the school mold.  So, we sit down to do some ‘table time’.  My son has already argued for 25 minutes about having to do it.  My daughter, always ready to acquiesce, is sitting and doing her work…for about three minutes which is about the length of her attention span when she is doing something she doesn’t love.  She also has trouble sitting upright at a table, so there’s that.  And then there is my son.  His anxiety is sky-high when faced with something new or remotely challenging.  Last night we sat down to draw t-shirt designs for Christmas presents (I do run a t-shirt company, after all).  My son wanted to do this, actually asked to do it.  But that didn’t stop him screaming at me (and himself) and using ten extra sheets of paper because his puppy’s face was wobbly. And when I say screaming, I mean screaming, and yelling, and growling, and stabbing his pencil through the paper, and berating himself.  This happens every time we put pen to paper, for any reason.  So, traditional schooling is not happening.

How about mealtimes?  Well, my son eats five meals: buttered rice (can we even consider this a meal?), pizza, bean burritos, vegetarian hotdogs and (vegetarian) ham sandwiches.  So, we either all eat from his very limited list, or we make two separate dinners, every single night.  And if our food smells funny to him, he eats alone in his bedroom.  Sometimes he comes to the dinner table late, and three out of five times he will throw a fit because we ask him to wear a shirt at the dinner table.  How about going out to dinner?  We can only go Italian so my son can eat pizza.  Liking the pizza is hit or miss, and if he smells parmesan cheese on our pasta, he needs to sit somewhere else.  We don’t go out to eat very often.

How about family trips, or vacations?  Those don’t happen.  We went camping once (meltdown).  The amount of stress that changing environments would bring on my son, and therefore on us, makes vacations out of the question.  And having to pack food for that?  That just does my head in!

You might ask, what about living in general?  What about downtime, family time, bedtimes, showering etc?  My son is happiest when he is on a screen, so that is a constant struggle.  Every Friday we have a family movie night, and we alternate who’s turn it is to choose the movie.  Every time it is not my son’s turn, there is a half-hour argument, without fail.  Bedtimes need to be completely routine: brush teeth, creams, three kisses, white noise machine, alarm clock facing the right way, water bottle with ice-cold water, overhead fan on high.  And showering?  Yes, that is a fight – I would say every day, but we don’t require daily showers, because we just don’t have the strength for that daily fight.

I’d say about 60% of days my son has at least one meltdown or major aggressive act where I am verbally (and sometimes physically) abused.  This can last anywhere from 20 minutes to 90 minutes or can be intermittent throughout the day.  This causes us always to be on edge, not knowing where or when the next episode will occur.  Add to this the stress of having to remember my son’s medication every morning, having to scaffold every aspect of his day, having to be peacekeeper and punching bag.  My daughter is ADHD and is constantly moving her body, but guess what?  My son hates to see extraneous movement.  This makes for a fun combination that causes multiple conflicts every single day.  Our house often feels like a madhouse.

I also don’t get much time to myself, because guess what else?  My son has separation anxiety.  He has told me that when I am not around, he feels very scared.  I am his rock, his support system, his person who knows what to do in a crisis in a very unpredictable world.  This is a huge weight for me to bear but bear it I will because it is my duty, and one day my time will come.

Do you want to know one thing that irks me to no end?  When other parents tell me, “Oh, my child does that too.”  This comment always makes me feel dismissed and invalidated, and is the reason I am writing this post.  They simply do not know and cannot understand.  The only people who know what we go through are other parents of neurodivergent children.  That is where we can find kinship, empathy and understanding.

In closing I want to say that while life is more difficult for us than other typical families, I wouldn’t change my kids for the world.  They are simply amazing human beings.  While I struggle with all of these challenges, I know full well my son’s struggles, as well as my daughter’s, are so much more difficult than mine.  These are their challenges, but they do affect me and our family unit, and that can’t be denied.