Autism and Marriage

 One of my church leaders once said that the most important word in all the scriptures is the word "Remember."  On the surface, this seems like a fairly trivial word, but looking more closely, I am convinced he is correct.

Raising four children is difficult.  I don't know a parent out there who can claim that raising so many children, regardless of special needs, is a simple task.  The special needs Samuel has just adds to it.  On the best of days, the additional work with Samuel involves cleaning up his diaper, getting him to take his medicine twice a day (he has 24 pills he has to take twice), hooking him up to his vagal nerve stimulator twice a day for 25 minutes each time, hooking him up to his neurofeedback every other day, a process which involves cleaning his hair, putting an adhesive gel on his head, sticking a series of electrodes on his head, then having him watch a computer screen in complete silence (which, as you can imagine, is pretty tricky with three other kids, including a baby).  We also have to make sure he attends four hours of therapy every day, and manage a ketogenic diet for him.

This is on the best of days.  This ignores the days where we are also taking him to the hospital, nursing wounds caused by seizures, stopping him from choking to death in the middle of the night, searching for him as he has "eloped" from our house again, or just trying to mitigate behavioral challenges.

I often think that 80% of all our time is spent on Samuel, while 20% is spent on the other three kids.  The problem with this is it leaves no room for time spent on one another.  At the end of the day, by the time the kids are in bed, we are so exhausted, we can barely take care of ourselves, let alone turn toward one another and seek to meet one another's needs.  There have been times where we have realized that in the rare moments we get to talk to one another, we are so desperate to share our own struggles, we hardly hear what the other person is saying. 

With all this in mind, it's no wonder the divorce rate among parents of special needs children is so high.  The rate is 10% higher than the divorce rate among parents of neurotypical children (a number that is already pretty high).  In all humility, I can say I completely understand why this happens.  I am intimately aware of the grief that comes with having a special needs child.  Often it is a fight just to survive to the end of the day.  Even the best of people will think and say unkind or irrational things to the person they love the most when struggling under the crushing stress of this kind of parenting.  And I am far from the best of people.  A person's normal and human shortcomings can be amplified in the eyes of a spouse when there is so much at stake every day. 

Recently, my wife and I attended a couple's retreat.  Grandpa flew into town to watch the kids (an AMAZING sacrifice!), so that my wife and I could spend some rare alone time with one another.  This retreat was all about turning toward one another and truly seeing each other.  We weren't competing to be heard, and we were able to turn off survival mode for a couple of days.  It was an incredible time.  It reminded us of why we fell in love, and allowed us to truly renew that love for one another in a selfless way.

Then we get home and survival mode is turned back on.  It was a wonderful, but brief, respite to our otherwise chaotic lives.

This experience has better helped me understand why the word "remember" is such an important word.  Remember why you fell in love with your spouse.  Remember that their shortcomings are because they are human.  Remember that they are exhausted, and maybe it can be hard for them to be full of love and kindness when they are carrying so much weight, including some weight you may not be able to see on the surface.  Remember to see your spouse.  Truly see them.  Listen when they speak and empathize with the struggles they share.

Remember to be kind.  

There will still be challenges, but as you do this, you may find that your spouse starts listening a little more.  They might start seeing you and your struggles more.  They might start showing a little bit more kindness back, and they might just remember why they fell in love with you.

I know how hard life can be raising children, especially when one of them has special needs, so remember the person beside you, and they may begin to remember you.