My husband and I will celebrate 31 years of marriage in November. It was debatable for a short time between our 29 and 30th anniversaries that we would actually reach the 30th.
As in all relationships, passion is cyclical. Job stress, children’s needs, financial stressors, and caring for aging parents can and does put great strain on even the most stable of marriages. When you add a child who has an autistic spectrum disorder and who is transitioning into adulthood, strain is putting it mildly.
I know a couple with one child on the spectrum. My daughter has been his friend since they were 9 or 10 years old. She has attended every birthday party he has had since then, even though it became apparent that she was becoming more social and more adept at changes of routine than he was. At 13, when he made his Bar Mitzvah, I had to talk her into going because he needed to have the sameness of all of the people he loves at all of his personal events, even though she was feeling they did not have much in common anymore.
I watched his parents put their hearts and souls into their son and his well-being over the course of his grade school and middle school years. When that child went through the traumas and moodiness of puberty, he outweighed and was almost a foot taller than both of his parents. He is a beautiful boy; tall, handsome, athletically built, with beautiful blue eyes and the face of an angel. His mom works in education and his dad had volunteered for many years any time he could from his own career obligations to help out at many of the Special Olympics events that our kids participated in, as a coach and mentor.
These are decent, hardworking, loving people whose love and parenting of their son cannot be questioned. They have done everything to bring him up well, in spite of his diagnosis and his limited intellectual and emotional capacities. They presented a united and fiercely loving and protective unit and they still do.
When he was sixteen, his physical strength became an issue for his parents. Beginning to feel his heightened sexual urges (as all young males will) he did not know where to go with these overwhelming thoughts and with his body, which began to have a mind of it’s own. At times, he began to be quite inappropriate with his mom. After several instances where she became afraid of her own son because he was overpowering to her, and several crises where he had struck out at his father and caused him physical harm in his frustration and his lack of understanding of the proper boundaries between himself and the only woman he had ever loved, his mother, a decision needed to be made. His parents, together, made the agonizing decision to send him away to live in a residential treatment facility.
After several months of looking for a suitable placement, with the help of the school district and their case manager, a facility was finally found. It was within two and a half hours from home so that they would be able to visit him on weekends. During the search, they found that their own high expectations of finding the perfect, loving, home-like environment had to be adjusted to what was actually available. They also found themselves dealing with their own wretched feelings of guilt and the self-flagellation that they imposed on themselves contemplating whether what they were doing could constitute abandoning their only son. I was hurting for them throughout the process while feeling grateful that my own daughter did not have such issues. There but for the grace of God….you know the rest. Not so sure about the God part anymore, but the saying made sense during this time.
My daughter does not suffer classic autism. She was given the catch-all diagnosis of PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) after several years of trying to figure out just why she was exhibiting some very bizarre behaviors which began when she was a toddler.
She received various therapies for her developmental delays when her failure to sit up, crawl, walk, and talk at the appropriate ages became quite apparent to me. I finally convinced her pediatrician that I KNEW better than he that something was not quite right with my third child, no matter how often he told me that all children do things in their own time.
The screaming fits she suffered due to what I believe was her sheer frustration at not being able to do the things her brain told her body it was ready to do, became lessened after she was fitted with AFO’s (braces for her feet and ankles) and physical therapy and occupational therapy commenced. She finally began to walk at 17 months of age. Yet, she continued to have trouble with speech until after age 3, even with speech therapy 3 times per week. She had her own language, flapping her hands like a crazed Italian woman and babbling on and on for hours. All my neighbors thought it was so ‘cute’ but I did not find it so. She could finally make herself understood at age 3, but it was with difficulty.
At age 7, she got the diagnostic label and finally became qualified for special education services. I, at long last, gave up my never-ending quest to figure out what was wrong with her and FIX IT. I poured myself into helping her to achieve to her maximum capacity.
As each of her obsessive compulsive behaviors developed and took hold of our lives, they would quickly be replaced by the next. They seemed to me to become less bizarre and less embarrassing as she aged. I noticed that even with her very low tested IQ, she was highly empathic and she could pick up on and react to the slightest change of emotional energy in a room. She gravitated toward the elderly and the kids who were more affected by their disabilities than she was and was always offering help.
As her speech improved and she could finally be clearly understood, she was not able to regulate her intonation or volume levels. She has one volume, VERY LOUD. No matter how much speech and language therapy she received, this has remained a fact to this day.
She is quite empathetic with her peers in the special education sphere, and yet she is like a fish out of water with “normal” peers. She is extraordinarily sensitive. She realized herself early on that she was “different” and became quite paranoid at an young age that people were talking about her or laughing at her, at her handwriting or at her artwork as displayed on the walls of her classrooms. She noticed the difference between her output and her more academically capable peers.
She will feel excluded when she sits down at a seat in the lunchroom or at the library and a peer then moves from his or her seat to sit elsewhere. It’s as if she has made up for her academic deficits with a highly attuned emotional barometer and a very sensitive nature.
I could probably write a whole book describing the next years of her life up until she became a teenager, but I’ll spare you. I was talking about marriage. Let me get back to that.
After several deaths, my father, my husband’s mother, and a beloved aunt only 10 years older than me, my formerly non-religious husband found peace and sanctuary in religion while my own faith dwindled. My daughter began attending church with him each week and was happy to finally have something special she did with her father on a regular basis.
The two of them befriended a couple who lived in our own town, and so began a lovely friendship with this couple who were our age and who liked to be outdoors, hiking, taking nature walks, sharing meals, and who always, always included my daughter in all of our outings.
I really enjoyed finally having friends who both were fun and kind. My husband and I seemed to equally seek out their company, which was not something we had shared with any another couple in our past. You know, he had his friends and I had my friends and sometimes we would go out as couples but we only put up with the husband of the couple because we liked the wife so much and he came with the package, or vice versa. I also really enjoyed that they were not drinkers, as my husband has had his issues with alcohol.
Little did I know that in the development of this friendship, there were feelings developing between my husband and the female portion of this couple. Looking back at it from a distance now, I should have known, I should have picked up on the signals and I dropped the ball.
The truth of the matter was, I was grieving. My husband was grieving. In the cyclical nature of a marriage, the passionate part of the cycle that constituted our married life had not been in the waxing stage of the circle since the deaths of our parents. I never doubted my husband’s love for me, but we were not connecting in a spiritual nor a physical way. If I thought of it at all, I attributed it to our personal grief. I really enjoyed our outings with this couple, I enjoyed the time we spent with them, as did my daughter and even my mother. I totally trusted that this was truly a friendship to withstand time. Time, however came to a very sudden stop.
My husband and I are not yellers or screamers. We have never fought or been disrespectful to each other in front of our kids. All of our initial dealings after the truth was revealed took place quietly and sadly behind closed doors. For about a week we contemplated how to end our marriage with as little animosity toward each other and as little disruption to our special needs child’s life as possible. We cried together, we opened up to each other, we talked like we had not talked in a long, long time. And then we discovered that even after all that had transpired, the betrayal I felt, the guilt he felt, we both wanted to try to put our marriage back together.
Throughout this short period of intense emotions; sadness, fear and doubt, we thought we were putting up a very good front for our daughter. But she was picking up on all of it. The first weekend that went by without our doing something with Dick and Jane (not their real names) she insisted on knowing why. She had looked forward to our outings as much as we had. When her Daddy did not want to go to church anymore, she demanded to know why. I could not provide her with answers that made sense to me, so how could I explain to her?
Her Daddy did his best to answer her in ways that she might understand. When the second weekend came and we still did not have a plan to see Dick and Jane, a light bulb went off in her head. She started questioning things that had happened during our last hike at the Celery Farm, and putting two and two together as if she could actually do math in her head! Still reeling with hurt and anger over all that had been revealed to me over the past few weeks, I informed my husband that he must be the one to answer her questions and confirm or deny her thoughts on what was going on, as he was the one who had put us all in this position.
He finally explained to her that we could not see Dick and Jane anymore because Jane wanted to be his best friend the way that Mommy was his best friend, and he didn’t think we could be friends with Dick and Jane anymore because that was not fair to Mommy or to Dick. That placated her for awhile. Then, the constant questioning began. Did Jane actually try to “kiss” Daddy? Did Jane want to steal Daddy and leave Dick? Why, during our last walk, did Jane and Daddy walk so far ahead of us? On and on it went, making it very difficult for me to work past my anger and my feeling of stupidity and betrayal.
My daughter perseverates on the negative. Whether it is that she thinks someone is laughing at her, or she feels someone does not like her, she will not let it go for years (and I mean years!) We are now almost 2 years past this incident and with counseling and time, I have come to see this episode as just another bump in the road that has served to force both my husband and I to attend to things within our marriage that really needed attending to. I have, for the most part, let go of my hurt and anger and regained the greater portion of my trust in my husband’s love for me and respect for our marriage. It might take a lot longer for me to ever make new friends, if ever, which does sadden me.
Yesterday, almost 2 years later, my daughter got into my car after a night out with her volunteer big sister, and she began to tell me how much Jane had hurt her by what she did, and how she was really sorry to be bringing it up again but she wanted me to know she had discussed it with her big sister because it was still hurting her so much and she really needed to talk about it.
She’s done this at least every 6 weeks since the actual events and, at first, it was like ripping a scab off of a nearly healed wound on my heart, opening it up to the searing
pain once again.
I patiently tried once again to explain this to her for what seems like at least the hundredth time, yet I know this will continue to happen over and over again. This is what it is like living with a child with a spectrum disorder. I cannot forget things nor get past things, because my daughter cannot. She will reopen this wound over and over, as she reopens her own wounds because her brain cannot and will not allow her to forget and put aside past hurts.
Last weekend, we attended my daughter’s friend’s 23rd birthday party. I was somewhat shocked to hear from his mom that she and her husband had separated and obtained a divorce in the year since the last birthday party. Her son still has no idea. She and her now ex-husband continue to visit him at his residential facility as a couple and they both come together to live in the house of his childhood where she now lives in alone, when he comes home for visits at the High Holy Days, Hanukkah or Christmas. They wish to keep his life as normal as they possibly can even though the tremendous strain of having an adult child on the spectrum finally pushed their own relationship over the edge.
There but for the grace of God, ……