Marital Stress in an Angelman Syndrome Family

By Marc Bissonnette

86%, 90%, double the national average, “significantly higher” – All those are applied often to the divorce rate amongst families of the multiply disabled. There is some debate amongst researchers about the true rate of divorce, but they often focus on a specific disability or on a generic syndrome, such as Autism (I say “generic”, because some aspects of Angelman Syndrome falls within the Autism spectrum) – Whichever you believe, there is no denying that stress levels and anxiety in a family caring for one (or more!) children with Angelman Syndrome (AS) are high.

We know, anecdotally, that the divorce rate in the AS community certainly is high: We have a large number of single mothers and fathers, as well a many blended families, where the one of the parents is not biologically related to the Angel.

This essay is not intended to look into the causes of divorce, but into the stresses within an AS family marriage and how to deal with them. The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses winning out over the reasons the couple married in the first place.

What are those stresses ? They are different for every family, with just as wide a variety as our Angels, themselves. As a partial (and I do mean partial) list, here are a few:

·         sleep deprivation

·         constant messes

·         frequent breakage of items around the house

·         seizures

·         G/GJ/NG/NJ tubes

·         multiple/frequent surgeries

·         Childrens Aid involvement

·         unhelpful/non-understanding family and/or friends

·         finances

·         lack of respite

·         worry about future for Angel

… The list goes on – If you, reading this, are an Angel parent, you know I’ve missed out on a TON of stressors in a marriage.

It is important to point something out right away: Very few of the stresses above are going to go away: They will always be with you, as long as your child lives with you – In fact, even if they move to a dedicated home, many of these stresses will not go away. What this is about is dealing with the stresses between each other, man and woman, husband and wife (or husband and husband or wife and wife) in a marriage that has an AS child in the mix.

The question, though, is how do you deal with these stresses? Not just in your own headspace, but with those around you; Your spouse, your children and your friends and family?

We all deal with stress differently: Some internalize everything, appearing as if they are unflappable and invincible. Others “fly off the handle”, yelling, throwing things or a general, foul disposition. This article is about how we deal with stress and take it out on our spouses.

More often than not, one spouse will feel like they are “doing more” in the marriage. This often leads to resentment, anger and an unpleasant atmosphere in the home. It can also lead to negative health effects, such as high blood pressure, ulcers and headaches, to name but a few. What is often surprising to the spouse that feels they are doing more is that their partner, the one they may think of as “that lazy bum” – feels the same way. No doubt, some reading this will snort in disgust, thinking that with all that happens in their day, their spouse could not possibly think they even approach their contribution, but: Your contribution to the marriage is entirely subjective. Unless your spouse is unemployed and literally sits, staring at the walls all day, the chances are good that their perception of the distribution of contribution in the marriage is very different from how you may think it is.

I am not saying that the disgruntled spouse is always wrong about their perception – but they are not always right, either.

So what does this mean? Is there some magical solution to all of this that would get rid of at least that one stressor, that would even out the perception of unequal work around the home?

Yes, there is indeed a solution, but it is anything but magical:

Communication. 

Yes, it’s a tired old cliché, but here’s the thing about clichés: They are often rooted in fact. Here’s the other thing about communication: It’s a two way dialog. It Is not a “bashing session”, it is not a lecture, scolding, ultimatum or whine fest. It is often uncomfortable, because a true dialog about what is stressing you out about your spouse means listening to what stresses them out about you and accepting it.

Here’s an interesting fact: Most marriage counselors will tell you this (in fact, many will tell you this before they hear you speak at all): No marriage exists where all the problems are caused by one individual. None. Nada. Not one. No exceptions.

For many, this is not only uncomfortable, but difficult to accept as true. I know this, because I was one of those people who thought I was “doing it all right” and all the sources of problems were not coming from me.

I. Was. Wrong.

Until you accept this, basically, that you are not perfect, the stress in your marriage will not go away. In fact, if you are thinking, right now, that this is wrong, that your spouse is the single, sole cause of all the issues in your marriage, you should stop reading right now: You have not reached the stage of personal development where you are capable of having a truly equal marriage.

So here’s the thing: There is a reason for each of your spouses annoying behaviors. To be perfectly fair, some of those reasons may be silly, some of them may be petty and some of them may be selfish. Of course, some of them may also be very, very valid, as well, but you’re not going to learn those unless you communicate with your “other half”.

Very often, that “reason” they are not doing something that you would like them to do is – surprise! The same reason you do not do things they would like you to do. Imagine that: Men and women, more equal than not ! Of course, this often leads to revealing that the couple is engaged in a very bad habit: The tally system.

The tally system is quite simple: Most of us with siblings did this as children: “Well, I did X and Y and she only did Z, therefore, I don’t have to do anything else until she does!” – What’s surprising to most is that the partner feels the identical way. Here’s the secret: There can be no tally system in a marriage. There will be days where the wife does more than the husband. There will be days where the husband does more than the wife. There will even be weeks where both of these are true. However: You can’t “add up your tally” on a weekly or even monthly basis: You have to look at it over the course of the entire marriage: Yep, I’m talking 50, 60 or even more years.

You can not, however, look at this “overall tally” with only your eyes: As mentioned above, the chances are extremely good that if you are the one feeling you do more, your spouse feels the same way. Here’s the shocker: When you actually sit down and have the conversation about what each person feels they contribute, not only might you find it surprising that they feel they contribute a lot, but that they are correct.

So, how do you go about having this “communication” thing ?

First, you have to use truth. No “beating around the bush”, no roundabout ways of getting to the point, no subtleties, just the plain, unvarnished truth. (Mind you, this is not a license to be rude or unfeeling, either!)

Often, it can be started something like this:

“Honey, we’ve been going around in circles, getting on each others’ backs and getting angry and annoyed at each other more often than we are happy with each other. We need to get back on a level playing field. Can we sit down this Friday evening, after the kids are in bed and have a frank discussion with each other ?”

How you ask is just as important as asking, itself: You don’t want to “ambush” your partner, so asking to have the discussion “right now” isn’t fair – In other words, you’ve had time to think about it, yet the idea is new to them. The tone is important, too: It is vitally important to emphasize that you feel that you both have issues that need correcting, not just that you feel they are the ones that need to change (If you really do feel they are the only ones that need to change, the chance is near 100% that you are incorrect) – Finally, set a time when you are least likely to be interrupted by kids, life, or the need to get up early the next morning. Obviously, with an Angel in the house, this is never a guarantee, but you can pick a “most likely” time.

When you do sit down with them – or even when they ask you right away what this is all about, start off with what you know has been annoying them about you. This is important, because you will be showing a willingness right up front that this isn’t about criticizing only them and that you realize that you are just as much a part of the issue – and the solution.