Ten years ago, my husband and I discovered that our six-month-old son had serious neurological problems and was at risk for autism. He couldn't look at me, but he stared obsessively, incessantly out of windows, as if beguiled by light that flooded into the room each morning rather than by his own mother's face. The realization of his neurological problems was the beginning of a life-changing road for my family, a life of intensive research, and working as hard as we could every day of our lives to help our son overcome the disability that he was born with.
I resisted at first the identity of mom with a sick kid, yet I am still in awe of the ways that adversity has of dragging us back into life, into new ways of seeing. Researching, I learned that a baby's brain does not come into the world like a clock ready to start running; it comes in more like a computer ready to be programmed, ready to make itself fit into whatever world it enters.
In the first few months of life, the brain increases neural connections by as much as fifty trillion. These same connections will begin to be pruned away by the very brain that made them if the baby does not have the right kinds of "experiences" and stimuli. Understanding that time was critical, I knew I could not afford to think about my career. It was time to buckle down and get to work to make a future for my son.
I spent every free minute of the day on the floor with him working to stimulate his brain. Sometimes I had to do it in a darkened room, because my son's nervous system was fragile, shutting down in bright light.
Today at eleven years old, my son is highly social with friends calling for play dates. He is creative, intelligent, compassionate, and just finished his first season of baseball, but keeping him that way still takes hours a week, even hours some days. Sometimes I wonder what his life would be like if I hadn't spent those countless hours with him as a baby, if I hadn't brought him to nutritionists or driven him to occupational therapists and physical therapists and the parade of doctors who came not just to our lives, but through our lives.
Listening to a recent speech by Sarah Palin, I felt a strange sense of disquiet, a disquiet that continues to haunt me. As a feminist, I know I should be proud that a woman is in line for one of the greatest leadership positions a human can face in this world. Yet, Sarah Palin's presence in this campaign leaves more questions for me than answers. Most disquieting are her claims to being a "hockey mom," and to be a representative of special needs families.
I've been mulling this problem over for days. How can she do this? Pretend to know our struggles? How can any parent of a special needs child ramp up her professional life right at the moment she should be taking a leave of absence? (Or at least as her husband should, but neither is to my knowledge).
I can't figure out the mystery. Who is dragging their son to all those appointments? Who is talking to him and playing with him regularly to make sure all those neural connections develop properly? (If the brain doesn't receive the proper kind of stimulation, those neural pathways will be lost forever. Scientists now insist that the course of a child's life hangs on these important first months and years.). Who is meeting once or twice a week with early intervention staff to make sure that the family follows through with suggestions and therapeutic activities? And who is following through?
Palin can't know my struggles. If someone had asked me to so much as join the PTO when my special needs son was a baby I would have laughed, (or cried -- probably the latter).
Studies show that many fathers mysteriously become very busy when special needs children are born. The stress of the extra work at home, the dramas of discussion with doctors with its mixture of bad and good news, the new lists of twenty things parents are supposed to be doing, the endless visits to therapists, facing the stressed-out wife in tears by dinner, is too much for some to handle. Work is a safe haven from the chaos of the special needs family life.
But if there is a percentage of parents who retreat to work when they have special needs children, isn't Sarah Palin one of them? What makes the problem convoluted, like something Orwell described in his coining of the term "doublespeak" is the way that Sarah Palin pretends to be the kind of mother who is on the front lines. Instead, she stands on a podium with this child as if he is a trophy of her domesticity, without admitting that she often works 800 miles from her family home, and now will be on a campaign trail for weeks. By doing this, she mocks me and all the parents of special needs children who have given up years of our lives to protect the dignity and futures of our children.
"So are you saying that special needs children are solely the responsibility of mothers?" the feminist in me perseverates. "No! They are not," she insists. "But Palin parades her Down syndrome child at a convention, in an environment wholly hostile to a baby's delicate nervous system. She displays a teenager equally vulnerable, (and quite possibly a teenager who lacks proper guidance), while the baby lies in someone else's arms (ironically, that very teenager), a baby who lies limp-headed, ignored even while being starred at, surrounded by crowds of people who seem oblivious to the truth, that family values have skipped town in the arms of ambition.
(by Patricia Stacey, author of The Boy Who Loved Windows;
Patricia Stacey is author of The Boy Who Loved Windows
Thank you for helping affirm my own profoundly negative response to Sarah Palin's glib assurances that everything will be roses and sunshine as she raises Trig and leads the nation like some kind of Alaskan frontier Liberty marching into battle with babe on hip.
After watching my own family rocked while raising a mentally retarded child who still languishes between opportunities because she is one of the few who remain "undiagnosed"I couldn't connect at all with Palin or her family. If I can identify with anyone in that household, it's Bristol.
I think each woman and each family must determine for itself whether or not to bring a "special needs" child into the world -- but all families who embrace one needs to accept that things are gonna change. For some, this means a challenging but rewarding process of growing in love and understanding. For others, it means chaos, confusion, violence, and tragedy. For many, it means a life lived somewhere in between.
But throught it all, a certain sense of awe, patience, humility and appreciation for the enormous task at hand are assets that can't be under estimated. To make the process sound as simple as loving someone really gosh darn hard is to demean the difficult work, hot tears, sleepless nights, financial trials, and frequent frustrations associated with the task.
Before I can trust Sarah Palin to fairlyl represent my sister's needs, I have to know that she sees her own child as being more than a political prop to wave in front of the cameras as proof that her pudding is delicious.
by
Theresa "Darklady" Reed (6 articles, 0 quicklinks, 1 diaries, 19 comments)
on Wednesday, October 1, 2008 at 6:58:35 PM
You are intruding into Gov Palin's personal life in an effort to criticize and to denigerate her and her family in a sleazy political fashion. Her child, that you do not know and generalize about based on your own experience, is hers and her family's responsibility and not yours or mine. Everyone make their own choices about how to raise their families. From what I have seen while volunteering at Special Olympics, all special needs kids are different. Some need a huge amount of care and others can function close to normally. You cannot judge the Palin's little boy from where you are sitting and from seeing him for a few seconds on TV.
I do know Gov Palin has not abandoned Trig or locked him in a dark room somewhere. I personally talked to her secretary in Juneau and she told me that her son always accompanied her to Juneau when she came in town for state business. As you can imagine when the Govenor is tied up that there are a lot of people around who are more than willing to play with the little guy for an hour or two. Her husband is more or less a 'house husband' and has not abandoned his family as you suggested he would based on 'some studies'. The fact that Sarah Palin and her husband made the right decision about having Trig instead of killing him says a lot about them both.
Everyone who has children has problems. Some of the problems can be overwhelming but that is why we have family and friends to turn to. Those wonderful people help us get through the problems. We all have probably helped many friends over the years. From what I have read and have seen from my little corner of the world the Palins have a pretty good set of family and friends and do not need harpys who don't know them or care about them or their child self-righteously standing off on their perches needlessly criticizing them while expecting to be endlessly praised by the Palin-Haters for their political hatchet job.
by
Mad Jayhawk (1 articles, 0 quicklinks, 0 diaries, 399 comments)
on Thursday, October 2, 2008 at 1:19:07 PM
As a mother of a child who also has learning challenges and physical ones, which turned out much later to be Asperger's syndrome (possibly due to the vaccinations and mercury), I found that there needs to be a consistant person with the special needs child, one who 'gets' inside their head, who can 'tune' into what he/she needs. It was me, who had other children, who kept telling everyone, there is a problem here Houston, he is not learning, not walking, not being able to do what is 'normal development'. No one listened to me. The doctors in the local area didn't pick up on all the clues. It was only when I went to another area and was in an agency that someone else picked up on it and stopped blaming me, and said, he needs to be tested. That testing verified my 'mothers' intuition and observation that there was a problem.
Taking care of him took everything I had. I gave so much love and attention to him, more then humanly possible patience and extending myself to 'go into his world' and then bringing him out slowly, gently. It was a great learning experience for me, to understand the world of those challenged children and the struggle of the parents. I, the mother who gave birth to him and was bonded with him was the only one who cared enough to make sure he was cared for, and taught, and worked on him so he could walk. I was the one that had the patience and the inner knowledge to put him first before everything else. Other people just didn't understand, nor have the dedication to make sure he could get help.
I had to go back to collage when he was almost 3, and had to rely on others to help, and that was an awful time for him. No one else would do what I did. The resulting years afterwards were pretty awful for him, and for me. Me needing to go to school so I could get a job to support us, and yet feeling so frustrated and guilty because I knew he was upset and confused and missing my quality time with him. I know personally what that absence of the primary parent does to both of them.
What happens to these special needs children, is they get tossed here and there, and they do not get prolonged quality time and a secure environment. Anyone who reads books on these children (as I have) understand just how critical it is for them to have a safe harbor, a sane and calm place for them and consistant caregivers who understand and can stick with somekind of constant program to help them become all they can be. Trig is still young yet, but I totally question her dedication to her children. When she is obviously forcing a young girl into wedlock, who is pregnant, (and one does have to wonder where the mom and dad were in all of this), in a time when that daughter should be getting attention from her mother, not being used as a baby sitter for her. I wonder at any 'mother' going for such an office that would demand most if not all of her time, taking her away from Trig and the rest of the family.
I just question the ability of any woman or man who would inflict such a life upon a special needs child, obviously not understanding nor wanting to understand 'his needs', and in a broader sense, if she can't do that that, then how could she have any compassion or understanding for any person, living thing, country or world?
by
truthseeker (0 articles, 0 quicklinks, 0 diaries, 2 comments)
on Thursday, October 2, 2008 at 8:16:15 PM
3 comments
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