I missed some news while we were out hiking around the history of New Mexico…
- Lindsey Lohan went to jail- and got out
- The oil is still in the Gulf
- Memos were leaked from Afghanistan
- We might be on the edge of a second recession
- A mother in Irving, TX killed her two children with autism,
- And a mother in Bronx, NY killed herself and her son who had autism.
It’s these last two that has me knocked sideways.
Amidst the escapism and voyeurism of Lindsey, the ecological nightmare of the Gulf, and the national tensions of Afghanistan and Iraq, this story hits close- too close- to so many, many mothers of children with autism. I listened to the 911 call- and I hear echoes of our own despair, our own fear, and the harsh judgement of the outside world.
Please understand this- I would never, have never, and could never hurt my children. But I have stared into that abyss of fear and anger and frustration and known what it is for errant thoughts of freedom, escape, and ending all of this to drift across my mind. I have placed that screaming, tantrumming baby carefully, oh so carefully in her crib and walked away so that I would not hurt her. I have placed my son in his room and locked the door so that I would not lash out at him. I have locked myself into my closet and cried hysterically. I have fantasized about silence, about peace, about not having to deal with…. this. That. All of it.
What Saiqa Akhter wanted were “normal” children.
And therein is the fantasy- that there is a “normal” out there. “Normal” is a concept that has been sold to us by television, by faulty memories of parents and grandparents, and by a society that is so focused on the overwhelming bliss of motherhood that we don’t dare complain about the challenges of it. When celebrities lose that baby weight in four weeks, and go on and on about how their lives are so complete now or we see cute pictures of parents and children laughing together in the magazines… or we have the neighbor down the street who makes perfect afterschool treats or the child downstairs who says “Please” and “Thank you” without prompting, or the child in the grocery store who is chattering away to his mother. Or you see the group of girls your daughter’s age hanging out in a group at a park with a doting mother reading off to the side. Reading!
With this tyranny of “normality”, we figure there must be something wrong with US if we don’t have the level of bliss, the time to read, the well-behaved child, or the well-orchestrated grocery store trips. And the list of things mothers of children with autism deal with is HUGE- sensory issues, communication issues, toileting issues, and on and on. You can hear the tiredness and the exhaustion of Michaela Jackson in her blog. And we fantasize about those glimpses into other people’s lives… that expectation of “normal”.
Of course there is a problem with glimpses- they do not show the whole truth, or the whole experience. Even my happy trip to New Mexico- I focused on the good. I focused on what was pleasing. I did not tell you about the fights with Ray to get him to eat, or the meltdowns when they were tired, or Elizabeth’s fixations on climbing that shut out much of the rest of the experiences, or… because I am in a strong place right now where I can shut those things out and I can focus on what was good, what was fun. I had support, I had my mother and my husband and my life-long friends and I had something new and interesting to do every day. Other days, I don’t have that strength. Other days, I don’t have that support system. Other days, I’m tired. Other days… You cannot judge my life by our bad days, but neither can you judge me solely by our good days. Our “real” life is a crazy, mixed-up sum of all of it.
Labels help here- they give a name to the difference, the disorder, the chaos. Labels helps provide a community. A feeling that if there is a label for it, then I am not alone. Labels provide access- not just to services for children, but for connection among adults. Jess, over on Diary of a Mom has a wonderful post about the need to talk. But labels also serve to distance. Labels serve to name differences. Labels provide evidence that you are not “normal”. If the problem is “autism” or “anxiety”, then it ISN’T us, and there is a tendency to wonder why God/ Allah/Higher Power punished us by putting this difference in our lives. You can hear the mother’s rejection of the labels in her 911 tape- she did not want “autism”. She wanted “normal”.
I also heard other pressures in Saiqa Akhter’s life in her phone call. I heard a woman who had English as a second language. There could be unknown pressures that culture and language placed on her. According to the news article, she and her husband had been in touch with professionals over the last few years, but who knows how much she understood or how much she accepted because of cultural differences. I do not know the Pakistani community’s perspective of or support for autism. I do not know how much her extended family knew or could help. I know that all of these things impact someone’s ability to cope.
And what I am most horrified of all, even beyond the actions of these mothers who had reached the end of their ropes, are the responses of some of the people who have commented on the news story. I read a number of them, and on every board, there were people- limited numbers of them, but still a number- who made degrading comments about the children, about how they were defective, about how their deaths are less than a loss. And it is these people- these people- who are truly at fault here. For they are the ones who think they can determine “normal” by their hurtful words, their judgments and their arrogance- and their rejection of the mother’s pain. It is this rejection of difference that leads to anger, to violence… to mothers killing their children.
It’s important to understand that no one owns “normal”. Look inside any family’s life, and you will find tragedies, stresses, anxieties. You will also find joy and accomplishments. On any given day/week/month, they will be absorbed with one set and have no clear memory of the existance of the other. Mine has a set of labels to it that tend to dominate our actions and our reactions. Other mothers have bigger labels, more significant issues. Some mothers have no labels and still have stresses that are difficult to cope with. Some days we can cope. Others, not as well. I pray that if Saiqa Akhter or Michaela Jackson had been able to find support, find understanding, find their balance- they could have found hope.
We are returning back to our real lives and our “normal” way of being. But “normal” is relative- based on comparisons against others- and is an illusion. Hope is sustaining. Hope is real.
And Hope depends on community with others. Please share this, for while we read about Saiqa and Michaela, we do not hear of the ones that are helped.