A divorce in an AS family

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Strained marriages are not often spoken of among AS families, but given the prevalance of severe sleep disorder alone among our children, it seems only to be expected that the intimate relations between husband and wife should suffer. The difficulty of finding time and energy to maintain intimacy of all sorts between partners is a crucially important topic but one few people are willing to discuss. The father of a child with AS recently saw his own marriage come to an end and has written a raw, honest account of what happened to him and his family. He has allowed his story to be made public so that others might read it and perhaps benefit from the mistakes he and his wife made in failing to maintain their relationship with each other. To protect his ex-wife and his children, he has chosen to remain anonymous. You, too, can comment anonymously on what he has written, or add your own story, in the guestbook.

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The story of my family is perhaps familiar. In our country, as in most of the industrialized countries of the world, approximately 50% of marriages end in divorce, and the rate of divorce must surely be higher for families with children who have special needs. In the past year, my family joined the ranks of those who experienced divorce and the questions of custody of our children. I want to tell my story in hope that it will help other families facing the same problems, and in hope of helping myself understand what happened to us.

I have often wondered why there seem to be so few divorces reported on the AS list. Perhaps having a child with AS forges a bond between parents that cannot be broken by the stresses that would otherwise break up a marriage. It's possible that in some countries, the financial burden of creating two households is too great to allow even the thought of divorce to occur. In some families, lingering guilt over whose "fault" the child's disability is may prevent a parent from feeling free to leave. And it's possible, of course, that people do get divorced and do not choose to talk about it on the list.

My story has its own peculiarities, and it should be read as just one example of how things may go wrong, yet many AS parents may relate to it one way or another. It is provided here as a starting point for what I hope will become a fruitful discussion. If at least one family can avoid the same mistakes my ex-wife and I made, it has served its purpose.

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In our case, the court decided that I, the father, would be the better custodial parent for our child with AS. I believe that this was without question the correct decision. People have asked whether it was appropriate to congratulate me for "winning" the case, and I have replied that it would be better to congratulate my child. This is most important.

Whether it is also good for our other daughter to live with her mother remains to be seen. I have some serious doubts about my wife's ability at this time to be a good parent, but my older child is not disabled and can tell me if things are not right. I will have to trust her judgement now, and I think she is mature enough to be trusted.

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My wife and I met in 1979 and got married two years later. Our marriage lasted almost 20 years. Why did it come to an end ? Let me try to explain.

I am a person who says what he thinks, and I am most comfortable with other people who also are open and direct, not relying on hints or innuendoes to communicate. My wife, on the other hand, was extremely sensitive to body language, facial expressions and all kinds of true or imaginary nuances in what other people were saying, but this difference between us did not interfere with our happiness for more than ten years. I felt she was the sweetest and kindest woman I had ever met, and she expressed her great appreciation for what she called my good character.

I have always felt that my wife's childhood and upbringing caused her to be so sensitive to non-spoken cues. She and her sisters had had a strict, old German-type upbringing. Their mother became increasingly tired over the last years of her life and died when my wife was 15. The youngest sister was only 5 then. Their father was grieving a lot, and my wife and her older sister had to take care of everything. This was a tremendous, and unfair, burden for a young girl.

Their father was a very practical man who expected his daughters to do many things without explicit command. They got nasty reprimands if they didn't. The daughters grew up having to rely on intuition to try to please their father, seldom daring to ask plainly about what he wanted from them. Because he was the only parent, his influence was greater than it might normally have been, and my wife grew quite adept at interpreting body language and other unspoken cues.

I told my wife early on that it was useless to try to detect any hidden meanings in my behavior or talk_I'm not subtle, rather straightforward. Yet after it became evident that our child was disabled, and especially after her father's death, her sensitivity became worse, to the point that I found it almost impossible to discuss any matters with her. Her excess sensitivity was something I could understand -- to a degree at least -- but didn't have to tolerate forever. And she was evidently very annoyed by my silence.

This was the most important breakdown in communication with us so far, and it was the single most important factor that led to the divorce. Her increasingly fragile feelings, combined with the normal mourning over the death of a parent, made it very difficult for me to talk to her about anything important. She interpreted my most innocent remarks as criticism of her and was unable to tell me what I should do. Other people told me that they had also noticed the same increase in sensitivity, but my wife had managed to act polite so as not to upset them. She felt no need to protect my feelings in the same way, and I was very unhappy and alone. My own way to cope with such a situation was to shut down.

We both felt misunderstood and hurt by the other's seeming insensitivity, yet we were unable to let the other know how we felt. One might assume that we had never had good, open communication about difficult matters, but that is not the the case. During the first years of our marriage, we were able to talk about anything and everything_in fact, our ease in communicating with each other was an important part of our union.

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Our second daughter was born with AS. She was first examined when she was 18 months old, but we got the diagnosis for her four years later. She was hyperactive and slept poorly. It normally took about an hour for me to get her to sleep, but when my wife was on duty, it could take three hours, and she was much more restless during the night. Because my wife seemed unable to calm her down in bed while I was able to, we made an early decision that I was responsible for putting her to bed and sleeping, and my wife took care of rehabilitation services and started to search for a diagnosis. Because both of us were working, we also decided to share household duties_I did all the shopping (which my wife hated to do), cooking (I loved it), gardening and all things outside the house. My wife did baking, most of the cleaning and the laundry. We shared the transportation of children.

In the beginning, at night I went to sit beside our daughter's bed every time she woke up, but I soon got tired of it and moved to sleep in her room. That way, I didn't always have to step out of the bed and could catch sleep again more easily. On the one hand, it was a very important (and stupid) decision for me not to continue sleeping in our own bedroom, but on the other hand we could not find any other solution whereby the rest of the family could sleep through the noise our daughter made when she was awake at night. The thought of hiring someone to look after our child at night didn't even cross our minds.

Most of the time I was quite tired, frustrated, and I sometimes hit our daughter_something that I really regretted afterwards. My wife did not approve of this, and we did argue about it, although at times she threatened to hit her, and on occasion did. She realized that I became cross because of the difficulty of putting our daughter to bed every night, and because of my chronic sleep deprivation; however, when she tried to help in that sometimes the situation only became worse. So there was no way out. A few times she suggested that I should move away for a while, but I didn't want to leave the kids and quite simply couldn't see that as a solution.

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Another damaging thing I did for several years without actually realizing that I was doing it was grief work, i.e. spending long hours at my office to bury my grief. It is always easy to find excuses in some work that needs to be done. Incidentally, I was also physically distancing myself from my wife. This became one of her biggest complaints, that I did not spend enough time at home. She did not cope well with our child when she was alone with her.

Much of this grief could have been avoided had we had adequate outside help from the beginning. There were no relatives nearby, and not even on holidays could we ask them to look after our daughter. We didn't even think of trusting her with neighbors or friends. She had a babysitter from 9 months, and she went to a kindergarten when she was three years old. A local parents' support group, which was not specific to Angelman syndrome, was not very helpful to us. What we needed was help caring for our daughter so my wife and I could take care of each other.

I really needed to have some time away from the stresses and responsibilities of my family, so when our AS daughter was two years old I began to take a few days off, alone, every year and go away. My wife complained the first time I did this and wanted me to shorten this holiday. She was not coping well with our daughter in the meantime. This was another sign that things were not going well in our marriage, but at the time I felt only annoyance that she couldn't allow me just a few days to myself. I felt I was doing more than my share keeping our household running and caring for our daughter at night, and I didn't understand why she would want to deny me a little "time off". I did not understand that this was yet another way we were distancing ourselves from each other, and because of our difficulty in communicating, it was not something we could discuss rationally.

On the other hand, I did allow my wife to stay at home alone for several days ("to clean down the house", as she put it) while I took the children for a holiday. What we didn't do, however, was to take a few days off when the two of us would go away together -- simply because there wasn't any place where we could put out AS daughter. During the last few years, my wife never wanted to join us for a holiday.

We first heard about respite care when our AS daughter was almost five, and she started on it in the summer of that year. If we had been aware of this service earlier in our daughter's life, it might have made a difference in what happened to us later. Having her in respite on a regular basis would have given my wife and me_and our older daughter_time to devote attention to our own needs. I still don't understand why no one suggested this service to us earlier; perhaps we didn't make our needs clear, and it was difficult for us to admit that we really needed some breaks. By the time we discovered respite services, however, our marriage was already seriously troubled. We didn't use those respite periods in order to get away, just the two of us, or with our older daughter.

At about that same time, we hired two students to help care for our daughter for a few hours on weekends when she did not go to respite, and to help out during the week.

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Meanwhile, we had no diagnosis for our daughter_we wondered if anything during or before the pregnancy had harmed the fetus, or if an early illness had damaged our child_and no information about what to expect. I was still hoping that she would catch up eventually. I'm not sure what my wife thought at that time, but like me, she probably became increasingly aware that something was badly wrong, and that it was extremely important to obtain a diagnosis. This proved very difficult. My wife continued to supervise our daughter's therapies.

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When our daughter was four years old, my wife collapsed for the first time. She was distressed by the fact that there was still no diagnosis, and she was facing the prospect of another week alone with the kids while I was taking my annual holiday. Her depression was profound, with suicidal thoughts, and she was unable for a long time to do her part of maintaining our household. I had no idea of how to deal with my wife's plight. She began taking anti-depressant medication and received crisis therapy, and I suppose we both assumed that these treatments would take care of the problem. In the mean time, I took over more and more of the running of the house.

For a while, it looked as if things were getting better. My wife's depression was being treated, and respite care also brought some relief. Finally, my wife managed to get in touch with a neurologist who helped us to find a diagnosis. The day we received the test results changed my life and attitude completely. I felt the relief was huge and finally I knew what to do, so I became very active in several ways.

It first seemed to come as a relief to my wife as well; however when we had genetic counseling later that year, she collapsed again, upon learning that the defect was on the maternally inherited chromosome and that she, her sisters and even her father could be silent carriers. She seemed to take the information as a personal assault on her worth as a human being and as a mother. After this, she was never really interested in reading about AS, and I began to wonder if she really wanted to know about our daughter's disability.

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Several months after the diagnosis, my wife became involved in a society which held monthly meetings 300 miles from where we live. That provided her an excuse to get away from home.

Soon after that, I also became board member in a society. I have to admit that it also provided an excuse for me to separate myself from my wife. By now, I suppose we were both admitting, at least to ourselves, that we wanted to have time apart, not just from the demands of our child, but from each other as well.

It seemed to me that my wife was looking for a "magic" therapy that would "cure" our child, but without spending time researching and understanding the implications of a diagnosis of AS. I was frustrated by her inability or unwillingness to put her energy into areas I thought would be more helpful, but we never had such a discussion. I felt that if I tried to bring it up, she would see this as another personal attack rather than an attempt to work together to find solutions.

My wife basically wanted to act as a therapist for our child, while I just tried to be a good father, doing fun things with her. Except for her contribution to potty training, she was never able to teach our daughter much. I am proud that I was able to teach her to walk, swim, ski, ride a bicycle and use the computer. Behavior management became my specialty, particularly after I had attended an AS conference and learned what it was all about.

We had a major disagreement over the management of our child's behaviour. She took the 'soft line', while I kept explaining that you should be 'funny but consistent' and never to tolerate any misbehaviour. The result was that our daughter was happy and didn't misbehave for most of the time when I was present.

It probably bothered her that my techniques worked so much better than hers, but we were unable to celebrate any successes either of us had. By this time, we each felt resentment over what the other was doing and found it difficult to acknowledge any success the other might achieve with our daughter. Our resentment of each other did not help our daughter, and it certainly did nothing to strengthen our commitment to each other.

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We have all become parents of AS children against our own backgrounds. I still don't know what the decisive factors in my wife's or my own case were_our differences in upbringing, the various traumas and joys we experienced as children and young adults, our shattered dreams of what perfect family life would be, or something else?

It was not that we didn't try to get help and remedy the situation. After her first emotional collapse, she began to work hard on her own to recover, reading masses of self-help books, and she continued to receive therapy. I, too, eventually began to see a therapist for counseling, and we tried family therapy. After 18 months, my wife announced that she had nothing more to say, and therapy ended without any real resolution. Not only did I not understand what the problem was; I did not understand how serious the situation was. It seemed that I was doing everything she asked, and nothing helped.

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Meanwhile, my wife's father became very ill and passed away. After his death, it seemed like my wife's personality changed and her attitude towards me became markedly worse.

Without telling me, my wife began preparations for a divorce and sued for it in December. I wrote to the court, explaining that I was a better caretaker for our daughter. My wife refused to join me for reconciliation services. She was very upset by my statement to the court and stopped the divorce, not wanting our older child to be interviewed by social workers. However, she rented a flat for herself, moved and stayed there (visiting us often) until we all moved together again eight months later.

Well, one would have thought that this was the new beginning, but it was really like living together for the sake of the kids and until further notice. There was one big change, though: I stopped sleeping in my daughter's room. I was surprised that it took just one month for her to get used to sleeping without me in the room. I wish I had known sooner.

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It now appeared clear that our marriage was irretrievably lost. We agreed to spend a month or so thinking about various possibilities and then to discuss them before we made any final decisions. I felt that no matter what solution was proposed, she would be upset by my questioning her ability to care for our daughter. The home atmosphere became electric.

My wife became very nervous and started to drink heavily. She would sometimes come home very late, drunk, and would make so much noise that she woke our daughter. She would insist that she could put our daughter back to sleep, and we would have a row. Invariably, I would end up waiting for my wife to pass out so I could put our daughter back to sleep. This went on for months.

I finally accepted the fact that a divorce was inevitable, and my wife agreed. A week before the agreed 'deadline' for our decisive discussions, she sued for a divorce, asking for immediate separation and for single guardianship and custody of the children. I again sent a statement to the court, explaining why I was a better caretaker. I also expressed my concerns over her mental health and excessive use of alcohol. I felt that I had to use every available argument in order to prevent the wrong decision over custody of the children. She was very annoyed by this.

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The court, however, granted her temporary custody this time, and the girls went to live with their mother. I felt discriminated against, as there had been no chance for witnesses or an objective appraisal of our situation. But two days after the court's decision, my wife contracted a very severe pneumonia and had to be hospitalized for nine days. I took care of the children.

The children spent most of that summer with me. I observed that when our daughter with AS stayed with her mother over the summer, she was obviously not sleeping well at night_she fell asleep during the day, something she hadn't done since she was four years old. Her other caretakers also reported that her sleep seemed to be severely disturbed.

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At the end of the summer, the kids went back to their mother. After only ten days, my wife called me and asked me to come and get our daughter, because she was misbehaving and not sleeping. When I arrived to pick up our daughter, I observed her strange behavior as she sat at the table. I called her pediatrician, who sent us to a neurologist. My daughter had begun to have epilectic seizures for the first time in her life, and there was no doubt they had been induced by severe sleep deprivation.

After this, my wife asked me to keep our child, and I agreed. My wife also reported that she had developed a difficult bone spike at the top of her spine, which would make it even more difficult for her to care for our child.

We met with social workers to come up with a custody agreement for the court, and our older daughter said that, as a young woman, she would prefer to live with her mother. I agreed, but at this point my wife said she also wanted to share custody of our younger daughter. I resisted this suggestion, and that decision was left up to the court.

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At about this time, my wife also began to resist cooperating with me on the matter of our daughter's finances, refusing to allow me to deal directly with her funds. She even tried to keep our daughter's clothing and toys away from me..

When the social workers presented us with the revised, permanent custody agreement (giving me sole custody of our child with AS), my wife refused to sign. She now wanted custody of the younger child as well, saying that their emotional relationship was deeper and that she just couldn't give her up, especially when she now had a new disease, epilepsy. Apparently a miracle had happened in that her back was much better now. I was angered by her demands, considering that her inability to allow our daughter to sleep was probably the cause of the epileptic spells, something that would not have happened under my care. The social workers were not convinced by her arguments, and they were very disappointed.

When we got to court, on the advice of my lawyer, I did not object to shared guardianship, and this demand was reflected in the social workers' statement to the judge. In court, however, my wife went even further and lied about earlier statements she had made, asking me to take custody of our younger child. Fortunately, I had witnesses and signed statements which proved that she had changed her story. The testimony of my daughter's aide as to our child's improved behavior and sleep habits when she was with me convinced the court to rule in my favor.

In the end, the court's decision corresponded to what I had demanded, almost word for word.

Why did my wife change her mind after initially agreeing that I should have custody ? I really don't know for sure. Money may have been one factor_she may have believed that she could claim our child's benefits by not signing any agreements. She has certainly been reluctant to pay her fair share of our daughter's expenses. She may have thought that, instead of leaving the children with me voluntarily and being regarded as a bad mother, it would be better to have the court's decision_and perhaps she is now explaining to her friends and relatives that the social workers and the judge didn't really listen to her. I find it very hard to believe, however, that she ever wanted to have our daughter after the terrible episode when she began to have seizures.

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Even after the court's decision, my wife continues to send "mixed signals" about our daughter's custody. At one point, she told her attorney that she would see my daughter only at the court-ordered times. Her lawyer pointed out that this was the minimum allowed visitation, and that she might regret her decision at a later date. At the same time, she complained about how little she was "trusted" to meet our daughter.

I am still having some problems in getting my daughter's toys and reimbursements from my ex-wife. She has said that she wouldn't talk to me about anything but our daughter's health, although that has now improved a bit. In general, she somehow seems to be too concerned about our daughter's seizures returning even though they are in fact well controlled by the medication. She is very healthy, sleeps well and thrives in school.

This time has been very stressful, to say the least.

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I still don't know for sure what my wife's motives and problems have been. It seems to me that she never got over the grieving phase and really didn't want to come to terms with AS, or to learn how to deal with it. She has been in some kind of denial all the time. She has not been able to benefit from any help to a great extent because she has not been ready to receive it.

I think our daughter somehow sensed that her mother was uncomfortable with her, got confused and misbehaved and slept poorly with her because of this. On the other hand, she is specially attached to her mother. We know that this occurs in AS families, it can be the mother or the father, and it is often difficult to say what lies behind it.

For me, by contrast, the diagnosis meant a huge relief, and I have been very active since that. I don't think I have had any problem in accepting that my child has AS. This may seem to you as an excuse or explanation in my favour, but I don't mean to give the impression that I have done nothing wrong. I made many mistakes. Men are sometimes blamed for not talking enough about their feelings_instead, they just do a lot of work. Many women don't appreciate this. That "loving by working" was true for me also, yet I should have tried to discuss these things more with my wife. Whether that would have helped, we will never know. Now it's too late anyway.

The author of this essay wishes to remain anonymous.