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.
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