Marital Stress in an Angelman Syndrome Family

Originally published in Angelman Today magazine, in two parts, July & September editions

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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 syndome, such as Autism (I say “generic”, because some aspects of Angelman Syndrome fall 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 as 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:

  • 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 inequal work around the home ?

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


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.

Your goal is to achieve having a partner that is “your other half” - Someone to be strong when you need to be weak and someone you can be strong for when they need you to be strong. That cannot happen if one feels like a martyr, like they're the only “super parent” or if they feel they're being used as a babysitter and a maid (Or, heck, all three).

Now that you've planned this discussion, what is it, exactly, that you talk about ?

It is often easy to start off with a little thing. Something you know you can do and you know your partner can do. Often, it can be a tiny, but annoying little habit they have that, if only they would stop, it would be one less frown in the day. It really doesn't have to be a big thing. In my case, it turned out that my wife and I each had a habit that really bugged the other: Me, I would leave cupboard doors open all the time – It drove my wife absolutely batty. My wife, she would leave a damp towel on the bed, after a shower – It made my skin crawl. Just changing those two little annoying habits, which certainly didn't seem like a big deal to each of us, ended up making a very pleasant change in our daily lives. If this sounds simplistic, it is because it is: Human beings tend to resist change – They resist it even more when it is someone else asking the change; This is why it is important to not only start small, but be equally willing to make a similar change. You are not only showing your partner that it is possible, but you are showing yourself that it is possible – and that it has positive results.

It is also necessary to get off your chest that which weighs on you most often. Frequently, it is the feeling that one partner contributes more to the marriage. It can be hard to get this across, without sounding like an accusation or like nagging. It is both the words you choose, as well as your tone that makes the difference.

For example, saying
“I am doing all the bloody work around here. I cook, I clean, I stay up with our daughter all night, I go to all the doctors appointments and what do you do ? You sit your hind end on the chair and drink beer!”

Is very different from “I am feeling a little overwhelmed right now. From my perspective, I do an awful lot around the home: I cook and clean for our family, I stay up with our daughter at night, so you can get to work in the morning and I go to all the doctors appointments. It feels to me like your work day ends at five o'clock, when you get home, but mine seems to have no end – I'm not saying that I'm putting more into the marriage, but I have to admit, there are times, especially after a rough day, when I do sometimes feel that way”

This is when it can come to the make it or break it point; I know this, because I was on the receiving end of a similar speech to the above, and I responded with

“Look, I work all day, I bring in all the money, I pay for everything in the home, as well as your social activities and your vacations – I don't think it's unfair that I ask you to pull your own weight” Guys, (or gals, if the roles are reversed) if you're thinking that my response was perfectly reasonable – Bang your head against the wall, because it's about the worst thing you can say. How do I know this ? Because I had a very, very well respected psychologist and marriage counselor tell me so. How did she tell me ? We went to see her, many, many years ago and I will admit up front that I went in there, fully expecting to be vindicated, to have this counselor tell my wife that she was being completely unreasonable and that it was only fair for her to “make up for” the massively imbalanced financial contributions to the marriage. One of my complaints was the lack of intimacy in the marriage, amongst other things. Don't get me wrong: She did have issues that needed to be dealt with, but, read on:
The counselor responded with this:

“So, Marc, let me see if I understand, before I make a comment, okay ?

Your wife gets up in the morning, makes the children breakfast, ensures they're bathed, including your severely handicapped, wheelchair bound son, gets him dressed, gets the other two on the bus, pushes Liam to school, then comes home, cleans up the house, washes, folds and puts away the laundry, then gets the kids home, which includes pushing Liam back from school in the wheelchair, cooks and serves dinner, washes the dishes, helps the kids with their homework, gets them into bed, makes sure Liam has his medication, cleans up the house from the mess made from the kids coming home and then... You expect her to want to be intimate ? Is this an accurate summation ? “

To put it mildly, yes, I felt like an idiot.

It took a professional to teach me what should have been blindingly obvious: I could earn a million dollars a day, but if my spouse looks at the house as nothing but a never ending workplace, then the very idea of sex was just another job.

Folks: If sex and intimacy becomes a job, you are in serious trouble.

That is the key to understand: Contributing to the marriage isn't just about the money that you earn or about the housework you do: It's about feeling that you are an equal in the partnership. Even when the circumstances are difficult. That saying that “money can't buy happiness” - It's true. It may well buy you some additional options in life, but it absolutely will not buy happiness.

So how, exactly, do you get happiness ? Believe it or not, the answer is very simple: You get happiness by giving happiness.

This isn't a Kumbaya moment, or a “lets stand in a circle and hug” moment: This is about giving your partner what makes them happy. Yes, ladies, I am about to talk about sex. (Guys, don't start pumping your arms in victory: I haven't gotten to us, yet); Ladies, unless your partner has specifically and emphatically told you that they are not interested in sex, the chances are very good that they'd like to see a little more of it. The chances are even greater that they'd like to see a little more of it without always being the one to ask, initiate, bribe or beg for it, either.

Now: Some readers right now are shaking their heads and thinking “Hmph. Men. That's all they think about: Sex.”

Wrong. You are wrong.

Here is why you are wrong. “Getting” sex is easy. There are plenty of women out there who are willing to “give sex”. There are plenty of websites (and I mean a lot of them) where the only purpose is to hook up for sex. (Yes, Virginia, women enjoy no-strings sex, too). But here's the rub: According to “"Love, Sex and the Changing Landscape of Infidelity", The New York Times, October 27, 2008”, the largest, longest running and most consistent surveys done with regards to extra marital affairs, the infidelity rate for men is 12% and women, 7%. It can vary by year and by age group, but the numbers are relatively similar.

If “all men want is sex”, the infidelity rate should be higher – a lot higher – as in, closer to 90%. Yes, men do tend to want intimate relations more often than women (though, as it turns out, not by nearly as wide a margin as historically thought), BUT: They don't want sex with just any woman: They want sex with their spouse. It also isn't that men want sex for sexs' sake, for the physical release: Sex, for men, is an emotional connection with their partner. To be fair, many men do not say as much out loud, but it is indeed a lot more than just the physical sensation. Given a 12% infidelity rate, if it were just about the physical release, there is always “solo play” and there are “toys” out there that are awfully realistic. So yes, ladies, it is YOU, specifically, that your man wants to be intimate with – to feel special, to show you that he thinks you are special, to show you, in his way, that he loves you and only you.

Now, guys: Although many of you are reading the above and thinking “YES! THIS! THIS IS WHAT I'VE BEEN TRYING TO SAY!” - Hang on a sec: Sex, to us guys, is important for our emotional well being and the feeling of connection to our spouses: There's no denying that (I'm speaking in generalities, here: I am well aware there are exceptions, please don't bombard me with email about that which I already know), BUT: That is OUR emotional connection with our spouses: It is not necessarily THEIR emotional connection with US. One of the most frequent complaints I have heard from women is that they want to be physically close to their partner without the expectation of it always leading to sex. Yes, one of those women I've heard it from was my own wife, I'm not going to lie. So guys: A kiss hello and a long hug when she walks in the door, followed by “Can I make you a coffee ? “ or “Come in, I've got dinner on the table” is a really good idea. A neck massage and only a neck massage every now and then, also a good idea. Sitting side by side, holding hands, or arms around each other, watching a TV show or a movie together; +1 for that, too.

And guys, I have to point this out, because I was guilty as sin of it, myself; If your spouse spends all day in the home doing work, she actually will be tired at the end of the day. So how do you help make sure she's got the energy for a little excitement when the kids finally get to sleep ? Easy: Reduce the work that's making her tired. Do the dishes. Help with the laundry. Take over cooking a meal. Bathe the kids and get them to bed. My mother had an excellent saying: “There are no such things as 'womens jobs' or 'mens jobs' – it's all work that needs to be done. The laundry really doesn't care what your internal plumbing is – it just needs to be done”.

So here we are, with two simple solutions to showing each other how easy it is to show the other that they matter, but why isn't it done more often ?

The answer, sadly, is often “the tally system” - “He hasn't mowed the lawn in a month, it'll be a frosty Friday before he sees me without a bathrobe on!” - “She hasn't shown me any lovin' in a month – It'll be a cold day in aich-ee-double-hockey-sticks before I mow that lawn!”

See ? Vicious, self-feeding, eternal circle. Someone has to man – or woman – up and give the happiness. You can't think of your “tally” for this week or even this month. That's a lose-lose proposition. Life simply does not work that way. Guys, maybe you do go out and mow the lawn or make dinner or take the kids out during her favourite show without being asked more often in the summer. Big deal. It'll turn out that there will be a period in time where you come to bed more than a few times in a month, expecting to hit the sack just to wake up to face the grindstone the next day, only to find your lovely wife in a negligee, with candles lit in the bedroom. The point is that you have to create the conditions – and you have to be willing to do it not based on a schedule, not based on a “who's done more this week”, but to do it because by making your partner happy, you become happy.

And why do all this ? Is it to get more sex, or to have the dishes done so you can watch Greys Anatomy ? Is it to reduce stress, get rid of the ulcers or lower your chances of divorce ?

Let's be honest: The answer can be yes for all of the above, but, more importantly: At the very beginning of this article, I listed just some of the stresses of an AS family: You make your partner happy so that they make you happy so that when you face these stresses – and you will – you are not facing them alone. Waiting for your child to come out of surgery or come out of a seizure sucks – But it sucks a little less when you've got someone at your side, letting you know that you're not the only one worried.

Cleaning up puke for the fifth time in a day, scrubbing poo off walls, or picking up two loaves of bread that have been turned into confetti and mashed into the sofa is absolutely no fun at all – But it's a little less “no fun” when there's someone right there beside you, helping clean up the mess (not to mention it gets done a lot faster)

Dealing with the Childrens Aid, ignorant teachers or unfeeling family members absolutely sucks hard vacuum – But when your partner is standing right beside you, telling the morons in life that they back each and every word of yours one hundred percent, you feel invincible, undefeatable, instead of outnumbered and surrounded.

At the end of the day, both partners are facing – and dealing with – daily stresses that most people absolutely could not handle. That fact alone should be enough to make you look at your partner and think “I'm going to make him smile, today, no matter what!” - It should warm your heart and make you think “She's obviously just had a really bad day – I'm going to turn this evening into something she'll remember forever with a smile!”

Because, folks, you chose your partner: Your partner chose you: You are both raising an Angelman child together and that, even though this has so many worries, frustrations and terrible moments also has many, many moments of joy, triumph and pride.

Those stresses you feel, each and every day ? Guess what ? You're not alone. Your partner may be feeling stress for other reasons, but they are feeling it. Let them know. Let them tell you what's bugging them. Be honest with them and allow them to be honest with you, even when it's not all positive.

Be willing to admit to your mistakes and even your less-than-best behaviour, because you do make mistakes and sometimes, your behaviour might not be the most “ideal” - Just the same as theirs.

Imagine that – Men and women – Not so different, after all.

Marc Bissonnette

June 19, 2013