Take Your Own Sweet Time
“There’s a timeline to fix your kid.”
So Jenny McCarthy is quoted in the November 9th Atlanta Journal-Constitution.
For those of us (myself included) who were not able to keep to that timeline—-who are living every day with an autistic child who is growing older, growing up, learning more as the years pass by, and doing well—-I can’t say that I am sorry to be marching to the beat of a different drummer.
This would be my son Charlie: He provides the best measure, he is the best judge, of his progress, of his development, of his growth.
And he keeps good time, too.
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POSTED IN: Parenting, Stereotypes, Time
27 opinions for Take Your Own Sweet Time
H Roberts
Nov 9, 2007 at 8:56 am
This is such a sad story. The parents need to be punished but they are such pathetic losers all they will get will be a slap on the wrist. They aren’t even being held in custody. I want justice for this little girl!
Caroline L.
Nov 9, 2007 at 9:43 am
I find the statement “there’s a timeline to fix your kid” appalling on so many levels.
The fact is, especially for people with epilepsy, that sometimes medications and alternative treatments work, and sometimes the side effects are too severe or the treatments do not control the epilepsy.
When all the treatments work, it is wonderful, but that can change at any time. The treatments can stop working.
I have met so many parents who feel it is too late to do anything more for their children, especially as they get older, and they give up out of exhaustion, drained resources, and fighting school districts who just want them to go away.
Many of these families have done everything that Ms. McCarthy does. If the organizations that promote Ms. McCarthy really want to help, then they should focus on empathy, acceptance, and good services and programs.
And a cure for epilepsy!
Kristina Chew, PhD
Nov 9, 2007 at 10:08 am
Of all the statements of Ms. McCarthy that the media has reported, this one struck me as the most dangerous. If there is an assumption out there that children need to be “better” by a certain time, what does this mean for children like my son who have learned more and more as they get older? We have had frustrations finding him an appropriate school placement because there seemed to be some cut-off age of 5 or 3; he was 7 at the time we were seeking a new school. If there is to be a message of hope about autism, it is that sometimes it just takes time—-even a whole lifetime.
KimJ
Nov 9, 2007 at 11:39 am
There was a bit of couched vitriol in that article. Deriding criticism and blaming it on “not hearing” her? False. Or that people are bitter because her “tried and true” methods don’t work for everyone. (except for the “thousands of families” she has helped)
Not to mention the negative light she consistently casts on autism. I find her a real pest.
mcewen
Nov 9, 2007 at 12:08 pm
I certainly think it adds fuel to the message that most parents receive when a child is first diagnosed, the dreaded ‘window’ of opportunity. Maybe it’s just me, but that certainly hit my ‘panic’ button. Pity it was the wrong button.
Cheers
Casdok
Nov 9, 2007 at 12:09 pm
My son dosnt need fixing.
ASDmomNC
Nov 9, 2007 at 12:19 pm
I really really really wish someone would put a sock in her mouth or some duct tape over that ever-flapping yap of hers. Never have I wanted to throttle someone so badly as Jenny McCarthy.
VAB
Nov 9, 2007 at 12:20 pm
This is not surprising. People who think that kids ought to be a certain way (”normal”) would naturally also think that, if a kid is autistic, they should be “fixed” on a normal timeline. They fail to grasp the big point of developmental differences — which is that people who have them develop differently. Duh.
Cliff
Nov 9, 2007 at 12:28 pm
I find it extremely offensive that I somehow was a being who was inauthentic or a waste before I was “fixed”, as if I am now a fundamentally different person. On the contrary, I remember that person vividly, and he is fundamentally who I am, with the obvious differences coming with age and experience. Deride him, and you deride me.
Cliff
Misha
Nov 9, 2007 at 1:16 pm
I’ve never been a fan of Ms McCarthy and she gives me more reasons to dislike her every time she opens her mouth. I wish she would just shut up but she won’t any time soon.
That line has to be one of the most dangerous things I’ve ever read. It concerns me how parents who are desperate to “cure” their kids are going to react if they think they’ve missed that “window of opportunity”.
One thing I look at in regards to those words is the fact J never fit into this supposed window. And I’m happy about that. Over the past several years I have watched him develop and grow at a pace that is entirely his own. Yes, he’s have the love and support from friends, family, school, speech and OT therapists but all the strides he has gained I believe have been on his own. There have been definite changes and improvements with him but it’s something that has happened naturally over a long period of time. He’s learning how to cope in a world he’s not wired for, and as we say, not wired for him. If any kind of “fixing’ is being done it’s by J himself, for himself and at his own pace. It’s not because of what some newly acquired organization mouthpiece says.
Autismville
Nov 9, 2007 at 2:36 pm
I honestly don’t think about “fixing” Jack either … I just want to help him … ease his difficulties … enable him.
Prepare him for the world..
Prepare the world for him…
Artemisia
Nov 9, 2007 at 4:53 pm
It’s a double-edged sword, though - the dreaded “window of opportunity” has scientific validity and is key to getting good services quickly when the child is young - school systems will do as little as possible and waste as much time as they can, as you know.
How can we keep the pressure on them to provid e good intensive early intervention, without creating undue pressure on parents or depriving kids over seven with continued opportunities to grow?
My son is 15 and still developing - but many of his successes as he’s been older were built on the intensive EI.
Regan
Nov 9, 2007 at 4:57 pm
(I don’t know why the Atlanta-Journal story got stuck in the groove of the “diet” as the end all and be all…since even I know that Jenny McCarthy is/was doing lots of different things–including intensive EIBI/ABA.)
That window thing is scary because our personal experience is that some people take that cue to throw in the towel or refuse services after 5 or 7 because it’s a waste of resources. My daughter just turned 11. Some of her biggest leaps took place after 7 and she is still learning and growing.
Jenny McCarthy has stated that her son is her evidence–well, I hope that she sticks to keeping her story to her son and not let acclaim swell her “expertise” to where she thinks that she can speak for everyone.
jypsy
Nov 9, 2007 at 5:57 pm
She was on Ellen earlier this week and talked about how she tries the seizure meds that were prescribed for her son so she’ll know “exactly” how he feels on them, what effect they have etc. Does she not realize that if everyone reacted the same to these meds that there would only be a need for one single seizure med? It is precisely because we all react differently, get different effects and side effects, that a single seizure med won’t work for all of us. Even if it did, it’s not likely we would all require the same dosage.
How many parents will be trying out their kid’s prescription meds now?
Kristina Chew, PhD
Nov 9, 2007 at 6:42 pm
“Fix” has some other associations that may not not have been intended, but are potentially troubling.
Bink
Nov 9, 2007 at 8:02 pm
This is sad and troubling. I used to think and feel the same way, that I was in a desperate race against time to somehow “fix” my child. I patted myself on the back for doing the “right” things so that my child was able to speak and be in a typical class by age 5. At age 7.5, though, I admit that my child is still autistic — and that this is okay.
I think that Jenny will come to grips with reality, too, after she spends a few more years with her son. At least for her son’s sake, I hope so. I would hate to think that the only things he will eventually read about himself online (this is a certainty, not a possibility) are so negative. I hope she finds a way to celebrate this gift she has been given and to convey this to the person (Evan) in question.
Markus
Nov 9, 2007 at 8:20 pm
Sometimes people say things they don’t mean or that are just misinterpreted by others. I’m pretty sure Jenny McCarthy didn’t mean what everyone wants to infer here - that “you’re child is broken, like the some plumbing pipes in your house. Better fix it now, or pay later.” I call it a poor choice of words. Everyone is guilty of inserting a foot or two. Celebrities like McCarthy almost have the patent on doing that. It’s carelessness.
The real problem is that parents of autistic children are so desperate for objective information, answers, help and hope, they’ll eat the sand if they think it contains information that might lead to a “cure” or a “miracle” for their children.
Along comes a 30 something “sexy” celebrity from the MTV generation who has an autistic child and suddenly people across the country buy her book and start to hang on her every word.
Why not just take it for what it is? Jenny tried the 41 year old (and still completely scientifically unproven) gluten free, casein free diet with he son. It yielded interesting results for her. She thinks other people should try it too. Fine. I don’t think Jenny McCarthy has every said that the diet plus ABA plus other therapy is the cure all for autism in every child. Her book certainly doesn’t say that.
My son is autistic. We have not tried the diet. We might, but he’s making good progress with ABA and speech therapy on his own with out it.
I just think the parents of autistic children (like me) need to be careful. There is a Grand Canyon sized lack of information about the ASDs - and truly objective, scientifically proven information as to a cause and effective treatment just isn’t available in 2007.
I think there needs to be more acceptance of this fact - no matter how horrible it might be, and greater encouragment for research to find answers. And yeah, all the while keep pushing off the snake oil salesmen….
Kristina Chew, PhD
Nov 10, 2007 at 12:08 am
I guess McCarthy may well not have intended everything that is implied in the statement about a “timeline,” but her celebrity does result in anything she says getting a lot of play. We heard plenty about there being a “window” or “timeline” to help and “recover” our son and, after 8 years of ABA (since he was 2 and still busily at it), I don’t think that that is the best place to put one’s energies (or was to put my mind……..)—-really good to hear that your son is making good progress with the ABA!
Marla
Nov 10, 2007 at 1:49 am
I really wish celebrities would not be quoted as if they are experts. I too have heard parents say they tried their child’s medication and took the child off of the med. as a result. A child’s brain with autism and epilepsy will react way different to medications than a normal adult’s would. If my daughter did not have medications she would not be where she is today.
Caroline L.
Nov 10, 2007 at 4:43 am
Hi Maria,
would you mind very much listing the medications that work? every child’s system is different as well. meds that help without side effects…now there’s a concept.
The only timeline now in our household is to try to give our child a happy childhood and to be a content,independent citizen upon reaching adulthood. a tall order some days, and very possible other days.
Daisy
Nov 10, 2007 at 10:30 am
A timeline? to fix a child? Kristina, I like your post title better…and I believe that time is sweet. Any time spent with my child is sweet as can be, just as he is.
KC'sMommy
Nov 10, 2007 at 10:43 am
Jenny McCarthy really ticks me off. She gives off the vibe, “hey I recovered my son, why can’t you?” I do hope she shuts her trap soon cause the more she talks the more annoying she becomes.
“Fix,” K.C. doesn’t need fixing, he’s certainly not broken. I wonder if ms. mccarthy would have ever accepted her son had he not been “fixed?” I also wonder what her son is going to think when he reads “fix’ as he gets older.
julie
Nov 11, 2007 at 2:58 pm
Shen she talks as though a child can be fixed it gives parents the idea that if their child is not in a regular classroom doing well and no melt downs that they have somehow failed. My daughter has made much progress and continues to do so at almost 8 I hope that this will not change. I do not believe that she needs to be cured just taught. I have a close famly member though who has a son who is much worse off and his progress has been much slower and dificult. sh gets overwhelmed and frustrated by the implication that if she just did this one thing it would be better. She has tried almost all of it and with the same results. Jenny needs to be careful about how she words things. She is a celebrity which means everyone is listening.
Another Voice
Nov 11, 2007 at 5:56 pm
The “timeline”, the “window of opportunity”; why is this usually quoted by those that have something to sell? A book, a treatment, a drug. It is like they want to tell you there is a “blue light” special in aisle 5.
This rhetoric from the ad agencies is doing tremendous damage.
Regan
Nov 11, 2007 at 7:18 pm
Traditionally there have been developmental windows where learning certain skills are easier than periods beyond that-example some musical skills, second languages, some math prerequisites, etc. No big news flash.
There has also been some work showing that skill acquisition/mastery may be more reliably retained when taught within a developmental window than after. Coincidentally many of the windows are before the age of 5 in typical children–ex: the explosion of language between 1-6, but others extend to adolescence and beyond.
But that doesn’t mean that once that period has passed that learning is impossible or done with. Much of what I learned in college about neurology and windows of opportunity have been shown to be not quite as definite as posited in the past and appears to be better defined as more study has been done.
I think that one confound may be environment. I was disturbed by one paper I skimmed 6 months ago that showed that students in Special Ed could lose trajectory of progress rate with every year in school, and that was correlated with lack of fit of instruction. That might be one reason to make as much progress as possible during the preschool years.
I dislike the term “Fix” because of the negative connotations in relation to a person. You fix a sink; you treat or teach a person.
Regan
Nov 12, 2007 at 4:42 pm
Just came across google news this AM in re: the “window”
An “Autism Mom’s” Open Letter to Jenny McCarthy
http://autism.about.com/b/2007/11/12/an-autism-moms-open-letter-to-jenny-mccarthy.htm
Thomas Sowell on False Diagnosis and “Genuine” Autism
Nov 14, 2007 at 5:05 pm
[…] process that requires a lot of specilized teaching and services and that takes as long as it takes. Each to his own sweet time. ASD, Aspergers, autism, autistic, children, conservative, Education, family, health, hoover […]
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