You Have No Idea – What these parents face

In my previous post, we looked at parenting and how difficult that task is with all the variables, tough choices, etc. But now let’s raise the bar … turn it up a notch. While we’re at it, let’s just turn the dial all the way to the right.

Parenting healthy kids is challenging, but what about parenting children with irregular-needs? (I’m not using the term “special needs” because I want this to include any and every type of ongoing physical, mental, and personality disorder—all of them.  Throw in alcohol, drug, and whatever addictions, too.

How difficult is it to parent a child with irregular-needs?

You have no idea. Trust me. You have no idea. I only have some idea, because my daughter’s cerebral palsy is considered comparatively mild. Of course, people whose children are only moderated impacted tend to minimize their situation when talking about it. Like my friend Marc, who was quick to point out his autistic son is “higher functioning” when we messaged back and forth during the Allison Chronicles series. But if your kid has any abnormality, any issue, any challenge, or any special need. Your task as a parent becomes exponentially more difficult.

Take those problematic parental decisions, for example. When dealing with an irregular-needs child, sometimes you are facing ten possible outcomes, instead of just two, and nine of those outcomes may be bad. Often, you must make these critical decisions with little information or even inaccurate information.  And then those bad decisions (again, not necessarily poor decisions, just choices that lead to adverse outcomes, often beyond your control) cause you to have to make even more decisions. Then there are choices so complicated, the best you can do is just guess. 

When things go wrong, which sometimes is a daily occurrence, you blame yourself, and you and your spouse must deal with the bad consequences. You second guess yourself. You second guess your spouse. You third guess yourself. Some days you guess yourself to an exponential power and conclude you are an idiot and a sad excuse for a parent.  

This second-guessing and repeated setbacks, which are inevitable, put incredible stress on relationships. My friend Marc states, “Nobody can imagine the strain on a marriage during these incredibly difficult times”. Many marriages do not survive the pressure of raising an irregular-needs child. In most of these cases, the husband bails due to the overwhelming stress. Even though I do not condone this action, neither can I judge any man who does this. At times, the enormous amount of stress is crushing.

Besides the typical responsibilities, parents of irregular-needs kids play many roles. You must be a doctor, a therapist, a psychologist, a psychiatrist, and a priest, all at the same time. It requires superhuman knowledge, superhuman strength, superhuman patience, and superhuman compassion. Parents of irregular-needs children are as close to a real superhero as you are ever going to get.

For example, I have a friend who adopted a baby who has cerebral palsy. Only, she didn’t know the girl’s condition at the adoption. They hid it from her. They basically stuck her with this child. I would have been extremely bitter and tried to get out of the deal. My friend’s reaction? She has made it her life’s mission to raise this kid in an exemplary manner. She has poured her life into that girl. That’s superhuman love. Another friend is raising three autistic sons. That’s right – after having two sons with autism, he had another boy who has the same condition. And now he has a great family, which he loves tremendously.  His wife runs a support group for parents of irregular-needs kids. That’s superhuman strength and more.

And these parents are everywhere. Over the past year, I have been able to share my daughter’s condition with more people, and have discovered several of my friends and associates are captaining the same boat. I have learned about the children of my good friend Dave, my long-time friend Mike, my accountant Tim, the man mentioned in the previous paragraph, and the daughter of a coworker. Yes, irregular-needs children are much more common than you realize, and I’m sure you have a friend or family member in that position.   

Having an irregular-needs child impacts every family decision you make. I was downsized from my job just after my daughter’s seventh birthday. I didn’t care that I lost that job. I didn’t care about the impact to my career. I wasn’t much concerned about not having money to pay the everyday bills. But what mattered most is that I had lost my medical insurance, which had put the welfare of my daughter at risk. I went to an important job interview in a minus 20-degree wind-chill, with a fever of over 102 degrees to get the job that would restore that insurance. You just do whatever it takes – repeatedly.

Oh, and those decisions. My wife and I decided to send my daughter away to college in Indiana. I knew there were risks involved, but I thought it  would help my daughter’s social development. Leaving the campus after dropping her off was one of the most gut-wrenching days of my entire life.

It was the correct decision, but it was almost the worst decision I have ever made. There was an incident, a dangerous incident that nearly cost my daughter her life. Of course, I wasn’t there to witness it, but it was all right there in the extensive police report. And then I had to make another decision about whether to drive to Indiana and pull her out of school. I decided to let her stay; again, the correct choice. However, if she would have died there, I would never have recovered from it. Yeah, that’s what it’s like. A bunch of difficult choices in a game you might, if lucky, be able to play well, but you can never win.

But you can’t see the stress on these parents from the outside looking in. You might think, “Becky’s daughter has Down syndrome, but she handles it so well.” The quote (I can’t find the source) applicable here is: “Just because I carry it all so well, doesn’t mean it’s not heavy.”

It’s heavy. It’s massive. It’s burdensome. And it’s persistent. You have no idea. That person you know with the irregular-needs child - please cut them some slack. Show them some compassion. Tell them they are appreciated. Because you have no idea what your friend or coworker has had to deal with parenting their irregular-needs child that morning, nor the perilous situation they know is waiting for them at home that evening. You have no idea …. 

If a person is parenting a special needs child, then they have special needs themselves. Please extend grace accordingly.