Lisa Jo Rudy of About.com on all things autism (an autism mom herself) also recollects about Adam’s dad (from the movie — not my Adam):“Adam’s dad, now estranged from his mom, is bitter because of his wife’s obsession with Adam’s autism. Mom, meanwhile, spins out of control when she thinks her son’s cello solo will be cut from the final musical production.”Adam’s dad (in the film) suggests that he believes all autism moms suffer divorce because they are scrounging every ounce of information for the benefit of the child. Adam’s mom and dad are still together during the filming and the mom discusses how dad has had a long-standing affair, and she is clearly overstressed and bitter and I understand all of that.

As I’ve said, I’m looking through different eyes now. Yes, Adam didn’t sleep and I was so grossly sleep deprived. Yes, I was obsessed with finding out every ounce of information in a world that doesn’t accept autism. As a mother who loves their child (or a father — think Robert Hughes, Ralph Savarese among hundreds of other incredibly dedicated dads), this was the obvious choice. As an educated person, I read and study…and go back to university to get a degree in Critical Disability Studies. It is my way of dealing with things. I have a need to help Adam in this world that still does not offer enough programs, services, care, respect and inclusion. And I’m choosing to accept the choice with open arms. I’m choosing to move forward and continue learning from all the lessons on this autism journey.

Truth about divorce lies somewhere between anecdote and statistics. While I have compassion and I feel that this is so real for so many families, I have to question if we are all being manipulated. I am thinking of Jenny McCarthy and her story of feeling alone in her marriage with her autistic child. I think many parents feel alone when they are researching and searching for scarce programs — indeed there is a feeling of isolation that sometimes even extended family members will never understand. I remember the Autism Everyday Video and how the number “eighty percent of all autism marriages end in divorce” was thrown out as a matter of fact, rather than what it is — speculation. I spoke out about the “wanting to drive off the George Washington bridge” with the autistic child comment because it was used in a campaign to raise money for autism by making autism look terrible, not because I don’t believe or do not have compassion for the moments when some parent may be in a moment of despair. It’s all real, you see. The divorce is real too. Some partners do not want to deal with the responsibilities of raising children — particularly disabled children. Some partners do not leave just because of autism. The problem with using these stories in autism promotion videos is that it is used to sway our feelings about autistic people in particular. It uses autistic people as a crutch for the gamut of natural human emotion. People with non-disabled children also get divorced. People with non-disabled children also do unspeakable acts to their children. It is simply not fair to blame autism or disability as the cause for despair and divorce.

There may be some truth to divorce and disability, but statistics don’t necessarily agree. Apparently divorce rates, according to Kristina Chew’s article, are down and I’m particularly concerned when disability is used as the sole reason for a divorce. Kristina also writes: “Citing autism as the reason for a marriage failing can be seen as yet another reason for saying why autism is so awful. Taking care of Charlie is a privilege but it is not always easy. Childcare arrangements are a constant juggling act for Jim and me and we tend always to think of Charlie’s needs first, and of each other’s after that. We both agree that it should be this way. Jim and I would much prefer living closer to New York City due to our jobs but Charlie’s education comes first. We left the house that we planned to live in for 30 years in order that Charlie could have the right school placement. (And until this September we were living with my in-laws, which was very, if not too, interesting at times.) Jim and I have made many of our choices based on ‘what Charlie needs’ rather than on what would be best for the two of us and I do hope that, ultimately this will be best for the three of us.”

It doesn’t matter what stressors are involved in marriage — the more there are, the more vulnerable a marriage becomes. Some couples manage to work together, some do not. Sometimes, when the marriage is done and some of the stressors are gone, parents become better at working together. Sometimes challenges bring couples closer together. There is no magic formula and there are no right or wrong answers. Is raising a child with a disability more challenging? Absolutely. Should it be blamed for divorce? No.

What we need along with the compassion is to look at our sorry weeping selves in the mirror to ask analytical questions. Who is producing the video? Is it a real story or is a fundraising video? What is it asking us to believe? Does it pull on our heart-strings to sell copies? Telling truth means that the conclusions are not necessarily clear — at least not for public consumption. I for one, will not blame autism or Adam for my marital situation, even when day-to-day life is not always easy. In her article Genie In A Bottle, Shelley Hendrix in HuffPo discusses divorce, emotion and her autistic son: “For a very simple reason over the last six years, I have clung to the hope that my son Liam was insulated from the emotional distress that can envelope a child when their parents divorce. He has autism.

For once, I had hoped that his exceptionality was a perk, protecting his innocence and preserving his heart. I was wrong. Very, very wrong. With his nonverbal days behind him and his growing conversational skills he can express himself, just like any other child that experiences divorce.

His message this summer? He desperately misses the unified family that he once had. His questions and comments mirror the conversations I have had with his younger sister throughout the years. Is it his fault? Why can’t we get back together? Why did you get a divorce? Did you love daddy? Did he love you?.”

I worry like any other parent during a time of divorce. I too want to protect Adam, as all children of divorce seem to do, from blaming himself. I am particularly aware of how he manifests anxiety and worry that it’s because of divorce — and as autistic children are not unaffected, I must assume that there are days when his head wonders what the heck has happened. One day, like Liam, he may be able to tell me so, and I don’t think anyone should underestimate the effects of divorce on the autistic child just because that child seems happy all the time, or cannot talk, or does not appear to be aware of what’s going on.

Two adults are responsible for making it (or not) and society is also responsible for supporting marriage and families — particularly families who have more on their plates because of the lack of community supports. (And uh hum — who is going to want to provide supports when people — as the woman interviewed – discuss autism as worse than getting a root canal?!) Two divorced adults are also responsible for making transitions in life for the autistic child as smooth as possible, while respecting the child’s need to express their concerns which are manifested by anxiety (and we know as autism parents that anxiety doesn’t always look anxious, but also hyper). Adults are responsible for taking the responsibility. There is no easy answer for our lives in marriage or divorce; no predictions.

The work I must do for Adam still sits in front of me. The assistance he may require in his adult years is likely. I look at it this way: when a marriage ends there are new opportunities — to build strength and hopefully cooperation. Right now, as I myself am going through this new transition I have yet another opportunity to look at pity in the eye and step forward proudly with my autistic child.

Of course I would not be human if I did not wonder if more support, programs and information would have lessened the time I spent assisting Adam, coordinating his teams, his school requirements, his IEP, his communication devices and needs, playgroups… Would I have done things differently if there was more support out there? If I had had more sleep? This is a question I cannot yet answer. All I can say for now is that it was a choice grown from love and devotion. Choices have consequences and rewards. I don’t blame autism. I don’t blame a person. It’s what was meant to happen. The work we do today, I believe, may help others tomorrow. Adam, for one, will know that he is valued and that I valued the time I was married to his father. I value the lessons we continue to learn and the many joys and struggles on our journey.

I started the Joy of Autism blog in 2005 with the support of my then-husband who told me to “start a blog” not unlike Julia’s husband in Julia and Julia. He apparently believed that, like Julia, I “have thoughts.” :) He supported the work I did for The Autism Acceptance Project. But life, as they say, is “complicated.” Here we are. Who would believe that I think that even all of this is a gift?

I do. Now, on with the future.

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Travolta recounted in last week’s testimony how he tried to revive Jett, 16, who had fallen after a seizure in a family vacation home on Grand Bahama island.

The actor testified that his son Jett was autistic and suffered seizures every five to 10 days. He said the seizures would last 45 seconds to a minute and Jett typically slept for 12 hours after each one. “He was autistic. He suffered from a seizure disorder,” Travolta told the jury when asked about his son’s condition.

Looking at pictures of Mr. Travolta, I feel for the family deeply. Perhaps because of my own recent strain of going through divorce and watching Adam go along with us, maybe it has sparked some deeply painful feelings for me. Thinking of Adam’s future, as we must do when we go through a divorce even more so than ever, and we have to consider all the possibilities of epilepsy as well.

Going through all of this and reading stories about the Travolta family (I could not imagine having to go through this in the public eye) I have compassion for them and all the families who are not in the public eye — ABA, RDI, I really don’t care.

I care about the rights of our children. I care about not denigrating them by saying they are “less than” or “a fate worse than cancer,” because political exaggerated political sound-bites (even if there is an snippet of truth about the struggle) does not benefit anyone or any cause. We all must deal with the daily care, the worries, the strain on the family as well as on autistic people as a community. And I still believe that society does not yet have a healthy view of disability or autism and that needs real work and evolution. But I have compassion. I have compassion for those parents who are in depression because of autism. I used to be a more vocal activist (that may not change but may change it’s form), but the school of hard knocks has made me realize that my way of coping with Adam and non acceptance (of me as well as of Adam), was with activism. As I’ve reflected over the past year, activism for many people (like me) is a way of coping with crisis that might otherwise have sent me into a place where I might not have been able to function. My nature was also a part of activism — I was not about to give up on a child that, despite some hardships, is still pure joy to me. Some activism is harsh and negative, on both sides of the political spectrum. It leaves us with less energy rather than more. In real life, when we have a strong opinion, we will be met with opponents. There is a healthy way to debate and an unhealthy one. There are rules of engagement as there are in war, when the going gets really tough. Using children for the sake of angling is not okay. I prefer to read the blogs and writings of parent and autism activists who can see both sides of the experience.

I say this with the recent report on the Travolta family because I want to support what they have gone through and know the kind of love they must have had for Jett and the pain of the loss of him, in the midst of what I imagine to be an oncoming political agenda to use the family in a most difficult time, rather than a simple compassion (not pity) for them. I just do not think the time is right.

Joy Behar and others on The View talked about why John Travolta did not come out earlier about his son’s autism. About a couple of years ago, I too came out rather harshly on Mr. Travolta in my older Joy of Autism blog for not “coming out.” But Joy, I think said it right. It’s up to the family. It would be my hope (and is obviously my decision as Adam’s mother) that more parents will understand that to advocate for inclusion and acceptance means we have to “come out.” But Joy is also right by noting that the labeling aspect can limit our children to meaningless sound-bites, where popular representations and culture whittle down our children’s individuality and abilities as well as real challenges.

As far as Adam and I are concerned, we walk the fine line everyday. As his mother, it is my job and choice to advocate for him to attend any program that I believe he would enjoy, excel, or where he has a right to be with his community and to learn. He is different and it is not appropriate for people to put the onus on Adam to “be like” other children. Rather, the onus is on us to quiet our expectations, and live with everything Adam can do and offer and to pick up quietly and patiently on what he can do in order to nurture him.

So “its a fine balance,” as Joy said, between revealing and not revealing. But I’ve laid my bets on revealing for the sake of a better, more accepting world. And as I learn about autism acceptance more everyday, I also am beginning to learn how to accept myself, my evolution as an autism mom, a person with strengths and limitations, and an autism activist. More on that later.

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