Susan Senator
All happy families are not alike...
All happy families are not alike...
Jenny: A New Form of McCarthyism?
I only saw a few of the clips from Larry King’s Jenny McCarthy/autism show. My thoughts and responses were popping and bubbling like a freshly opened can of Sprite.
I understand that Jenny’s child improved in terms of his measurable skills. I am happy for her, and for the other children who finally do well in school and with peers. It makes your heart fill with joy to imagine that breathtaking moment when you realize that this is not going to be as bad as you thought.
I know, because I have felt that swell of happiness for my own children. Just yesterday Ned came upon the shower curtain, completely twisted, wet, and mostly detached from the rod. Nat had been the last to take a shower. Something irritating clearly had happened during Nat’s shower, and there was evidence of some struggle. But there had been no screaming, no biting, no jumping. No outburst at all. All Ned found was the curtain hooks jumbled but put back in some attempt to fix it. Ned was touched by this fumbling effort, and by Nat’s self-control and independence. He asked Nat, “what happened in your shower?” And Nat answered, “Shower curtain is tangled.” Ned and I both felt our hearts jump up to our throats at this beautiful, complicated sentence.
Oh, how Nat has grown and improved over the years! I have so many to thank: teachers who tirelessly teach him how to communicate his feelings, his thoughts. ABA for teaching us how to isolate occurrences and behaviors so that we can stay neutral and effective; Floortime for teaching us how to unite occurrences and behaviors so that we can stay connected to Nat; our families who love us and Nat and want only our happiness; a public school system that has paid top dollar for Nat’s education and never forced us to sue them; doctors for keeping track and titrating his meds to get them just right; Father Time, who has healed me in so many ways and answered so many questions I’ve had.
Not that it’s a competition, but I would go head-to-head with Ms. McCarthy any day to illustrate the growth and wonder that is Nat’s life of eighteen years. I would not measure his success with standardized tests, academic grades, number of vocabulary words, or reading level, however. I would, instead, go by the goals and dreams I have developed over the years for Nat, and see which have come to fruition. You see, that is one of the big differences between Ms. McCarthy and me: Nat is almost all grown, and we have come to understand so much about him and autism in this time. Her child is young. There is so much more life to life, God willing. Children grow and develop so much, in a matter of days, or years. We never really know what causes a burst in development. Was it the food he ate or didn’t eat? Was it a new medication or removal of that medication? Was it your new attitude of hope? Was it winter turning to spring, a shift in the light? Was it joining a team for the first time and understanding what friendship is all about? How do any of us really know? Take it from an old mother: we don’t, and it doesn’t even matter what it was, only what it is.
I and perhaps many other parents in the autism community do not think it is at all productive to fault, even by implication, parents who do not subscribe to the vaccine/mercury theories. Or whose autistic children have not “recovered.” If that is what Ms. McCarthy is doing, then that feels to me like a new form of McCarthyism, a la Senator Joe, or a new way of blaming parents, which is actually nothing new. (Thanks to Stacey Levin for pointing out this irony.)
It does not give me hope to read a book about such things; it makes my heart sink. Some kids do not “de-auticize,” NancyBea Miller’s wonderful word. Perhaps some original diagnoses were too mild, or too intense. My theory is that many of the kids who appear more typical as they get older may not have been as complicated as the docs originally thought. And vice-versa. As Nat grew older, the doctors kept adjusting his diagnosis to more and more autistic.
Ned and I have learned that growth is subjective, individual. That looking at your child as a sick person when what he has is a neurological disability was not helpful in our family. In fact, the moment that I let go of my sadness and fears about what was wrong with Nat, many things came right. Things were tangled. And now they’re not as much.
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I’ve never understood how Bettelheim could be so right about fairy tales, and so wrong about refrigerator mothers. Oh well!
Lovely Nat story Sue! My heart swelled a little too, just reading it.
This post is of particular interest to me. I have been working on a cut-out animation of Jenny McCarthy vs. Joseph McCarthy.
I find it especially interesting that you mention the irony of blaming parents. I have been in the last few months writing a screenplay called “The Train Waits for Bettelheim” and it follows the life of an autistic woman who later herself becomes a mother of an autistic child, but is then blamed for her child’s being autistic.
I wish Jenny and her son well, but I’m not interested in being tangled in her web. You get tired of the guilt being placed in your head that just because one child is doing well your child is not because you are not doing enough. A bunch of hooey.
Maybe if you were a D grade Hollywood celebrity you’d be taken seriously 🙂
Thanks, all. Geosaru, I am bookmarking your blog, “Autism All the Time;” it is beautifully written and very poignant and informative.
Thank you for this Susan. It brought tears. You have no idea how I needed to read this today.
I’m still entangled (is that a word?), but working I’m on it …
Well put. 🙂
Susan, this really resonates with me —especially today as we’ve been going through some bumpy patches with Nik. And I’ve been stewing over whether I am doing “enough” or “the right things.” I know that, ultimately, loving and respecting my child and giving him the time and room and guidance to grow are what he needs. But on those tought days…well, it’s especially disheartening to read/hear the parent-guilt rap laid on by Jenny and her posse.
Congrats to Nat on Making Peace with a tangled shower curtain.
I have a soon to be 6 year old son who is autistic. He was home birthed, and never vaccinated. He was diagnosed with a speech delay at age 2. I was bullied by a family member at that time to launch into the full scope of biomed treatments. We did GFCF, vitamins, minerals, chelation, b12 shots, DAN Dr. The whole lot of it, really.
None of his teachers, therapists nor I and Dad believed the biomed treatments were helping. I joined a yahoo group looking for more treatments and one day it occurred to me, none of these people are talking about their love for their children. Only this symptom that fix, and an extreme distrust of mainstream Drs.
At this time, the admin at his school voiced a concern about absence seizures. She sent us to the right Dr and after the EEG and the MRI, it turns out she was right. So at age 4, after seeing DAN Drs for 2 years, we finally get to the place that can see where he needs help.
So for 2 years we have been treating seizures, and we have seen so much more from him. He was having seizures about every 15 minutes. 45 in a 14 hour EEG. He could not motor plan his way through a room. How many other kids are seeing DAN Drs and getting the wrong treatments?
I want to see every kid move forward with the tools that they need. Being polarized in one direction does not serve anyone’s needs.
Lastly, I know my feeling about his progress or lack of progress, hinges on my inner state of being. If I’m having an off day, I don’t see it and second guess myself. On good days, we are the best family and thing can be so smooth. But that is just parenting, it has nothing to do with special needs.
Thank you for this. Sometimes, when I’m feeling really scared of the future, your posts help ground me. This was one of those. Also, just love the way that Nat’s shower curtain may have been tangled, but that life on whole, is not so much anymore.
I think it all kind of goes back to what does this word autism mean to you. It means something different for Jenny McCarthy. Her son was neurologically damaged by vaccines and had seizures. What constitutes or even caused one child’s collection of traits that is labeled autism is not what is so for the next. My son was not vaccine injured or anything like that. However, I won’t deny that this does happen to other kids- and it does happen at an alarming rate.
Jenny’s experience is not similar to my own- we have tried biomed with little success. Perhaps this is just the neurology that my son was born with? I can accept him for his beautiful little self while at the same time hoping and trying for recovery from his “symptoms” of autism. I refuse to allow anyone else to make me feel guilty- I have bigger things to worry about.
oh dear, does it have to be jenny mccarthy against the rest of us who have autistic children who won’t recover or lose their diagnosis? Jenny’s son is very young, i also thought my son would “recover” after intensive treatment. Not so, although he has progressed into an amazing young man who can express himself and be very independent despite his disability.
i have never felt “blamed” for my son’s autism by my family, friends or community. In fact he has had a positive effect on most people he comes into contact with.
I have so much more to say about having a child with autism, my son has just celebrated his 16th birthday and we are very proud of him . It has not been an easy road but we are doing our best.
Good luck to all contestants.
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I don’t why anyone would make he assumption that Jenny’s son got epilepsy from a vaccine. Just because she says that’s what happened does not mean that is indeed what happened.
This is what makes her dangerous because she feels she can forgo scientific evidence, research and documentation over a mother’s “hunch”.
People seem to forget that in her original Oprah interview she implied her son was showing autistic traits before he was vaccinated. She talks out of two sides of her mouth constantly.
The fact is at this point we don’t know why her son has seizures, we don’t know why he has done so well. If I was going to venture a guess as to his recovery I would imagine that anti convulsive medication allowed his brain to calm long enough so that he could process language and interact socially. However that is just a hunch as well.
Whether Jenny is right or wrong her cause does nothing for any mother or child because she refuses to use science as a tool to discovery.
I believe she is hateful in what she says because she has self appointed herself the messiah of “hope” for parents. Her definition of hope is that the child will recover fully as she claims hers has. She feels living with autism is a fate worst than death and therefore better to risk getting the measles.
As stated by the blogger she is young, she lacks perspective, she lacks the wisdom that comes with living with this. What makes her different than you and I at this stage in her development, is that she is being given a platform in the media due to her celebrity when she is not in a place where she can be reflective enough on this to guide others.
She may very well kill children by advising parents to stay away from the vaccine.
There are a million cases that can be made for what might be causing the increase. Pitocin is one. How many women had pitocin? I had tons with my son. I had 3 more boys after him and none of them got pitocin, only my eldest did. And my eldest is the only one who has autism. I don’t believe pitocin did it , but there are people out there that do.
How about this, peanut allergies are exploding in children and no one knows why either, is that do to vaccines?
We are an evolving species, things are not always the result of something that was “done” to our kids.
What the media is missing time and again is that the original statistic of 1 and 10,000 was always incorrect. They used to base diagnostic criteria on eye contact and lack of affection. If the child made eye contact and hugged you they said he was MR. There is even one study out there that suggests the rate of MR diagnosis had dropped to the identical rate the autism diagnosis has risen. In addition to this kids are now getting the Asperger’s label which is also driving the numbers up. Do I believe that there is an increase? “Yes”. What I am trying to say is it’s not quite the epidemic the media and Jenny are trying to make it seem. There are many factors involved with this and if we are going to get to the bottom of this issue we need to know what the hell we are talking about. Jenny McCarthy is a train wreck.
Amen to your lovely, lovely post! How is it that you are always able to read what’s in my heart and head?
My son is autistic, and as he grows older, continues to be more and more autistic too. Not one thing has singularly helped, and I am up at arms at people who demand that I follow a prescribed path to my son’s “redemption” from what they perceive to be a terrible affliction.
Yes, autism is sometimes terrible, and becomes even more when it pits mothers against other mothers, instead of uniting us in acceptance and tolerance. To say that some of us love our children less because we do not necessarily buy into the hype of vaccine-induced autism is irresponsible and malicious.
Thank you for saying it as it is. It’s often difficult to go against the tide of public opinion, and these days, I feel like a bobblehead amid the throng of “believers.”
~?Kittymama