I've tried several times to express to the two or three people that read this blog regularly what it is like to find out you have a "different" child.
I happened across something written on CNN.com today by former "Singled-Out" hottie Jenny McCarthy re: finding out her son has autism. You can read the whole piece here, but below is an excerpt which cuts to the quick:
I almost felt betrayed, like I didn't know this child standing in front of me. Everything I thought was cute was a sign of autism and I felt tricked. I guess the doctor sensed this from me because he turned my head back toward him and said, "He is still the same boy you came in here with."
No, in my eyes he wasn't. This was not Evan. Evan was locked inside this label, and I didn't know if I would ever get to know who Evan really was. All the behaviors I had thought were personality traits were autism characteristics, and that's all I had. Where was my son, and how the hell do I get him back?
Who woulda thought a former object of my desire would be able to encapsulate such a hard thing in beautiful words. Good work Jenny!
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Unfortunately, she needed to get a second opinion of someone qualified. A neurologist can't tell squat by observation of behavior--that's a psychiatrist's job. Neurologists specialize in brain function, not behavioral patterns. In this day and age there is a ridiculous rush to give everyone a label, whether it's ADHD, autistic, schizophrenic, etc. because there is money in those labels--expecially since the so-called austistic disorder spectrum was recently expanded to include behaviors that are clearly not autistic! Evan McCarthy's behavior of arranging the cones in a row is not autistic by a long shot. It does show linear thinking and advanced spatial relationships, which at his age is a sign of great intelligence. It shows aptitude in areas of logic, mathematics, organizing things, and relating things to each other--budding traits of any engineer. Jenny McCarthy should take her son to see the world's experts on pediatric behavior and disorders, the Drs. Camarata at UT-Knoxville. They know a helluva lot about this type of thing, not only because of their professional experiences with accurately diagnosing and treating thousands of these kids, but also because they went through it themselves with their own kids being inaccurately labeled as autistic. There are tons of yahoo groups and other discussion forums on this topic that Jenny should check out as well.
I am the mother of a 20 year old daughter with High Functioning Austim. I cried when I read Jenny's comments. My husband and I knew that our daughter was "different" from a _very_ young age but she was not diagnosed with High Functioning Autism until she was 12.5 years old. We went through hell and back... Our daughter is now attending a local community college. : D She has a boyfriend... She is still living at home, but working towards being more independent. She _knows_ she is autistic and works so hard to understand and live in our world... If only she had had intervention earlier. My husband and I did all we could for her - and continue to do so - to help her in this world that is so foreign to her in so many ways.
Some have asked me if I could - would I change our daughter and make her "normal." My response is NO! I only know her as she is - and she is a wonderful, empathetic, loving, beautiful, bright young woman. I love and like her just the way she is.
Chaiah,
That's great to hear about your daughter.
I wouldn't change my son for the world. I just think that Jenny McCarthy did a great job of describing the almost undescribable feelings of hearing your child isn't "normal."
For those that don't know, my son C. has hydrocephalus which has caused several developmental delays.
Thanks for stopping by!
-Chris
When the doctors recommended my daughter find an institutional placement for her screaming, head banging son, I knew they were wrong. Like Jenny, I turned to the internet. Like Jenny, we found DAN!. If we had just "accepted who he was" we would never have known the "who he is" is bright, loving, interested in music, science, and nature. We would never have known who he "is" at all.
But now, after almost 3 years, he is verbal, plays normally with toys, potty trained, uses the computer, is attending school full time with part time inclusion in a "regular" classroom and astounding all the school staff that have never seen someone with autism recovering.
His food allergies are extensive. His metal tests are outrageous, his immune system is not functioning properly. He still gets frustrated when he can't make the words he wants to say come out, but we are addressing and healing what he faces, one day at a time. We don't know yet "who he is", we only have glimpses.
I'm glad we DIDN'T accept who he "was", which at his diagnosis would have been the permanent resident of an institutional care faility.
This is in response to the first comment.
I highly doubt the neurologist was the only professional to see Evan. Not only that, but an autism diagnosis is entirely based on observation of behavior, and is normally NOT diagnosed by a psychiatrist. Autism is not a psychiatric disorder. A neurologist is completely qualified to make a preliminary diagnosis, with an official diagnosis made later based on a comprehensive set of behavioral and skill tests that takes hours to complete. Don't assume that a few paragraphs on CNN tells the whole story.
Arranging cones in a row doesn't make someone autistic, but it is an extremely common behavior for autistic kids. Being autistic and being intelligent are not mutually exclusive. Being autistic doesn't mean you don't have an aptitude for math, logic, or organization. In fact many autistic individuals excel in these very areas, and many engineers are on the autistic spectrum (like me). Autism introduces significant challenges into one's life, and the degree of challenge varies greatly from one individual to another, but autistic doesn't mean incompetent.
Autism can easily be detected if the child goes thru his periodic well baby checkup. And if parents are attentive, they should be able to detect some delay in development of their children as early a six months. They should be more of a Hands-on parents like me (a father). I knew that there's a developmental delay in my son at early as 4 months old. Shocking is that it took the Doctor 2 1/2 years to finally diagnos my son with autism. A child with autism is tasking both physically and mentally. At 4 yrs 3 months, my son still doesn't speak (not one syllable) but he readily communicate by leading us to what he wants or points to a picture or object.
Jenny is misguided and should not be listened to for medical advise. For an enlighteneing discussion by some experts, check out "The Skeptics Guide to The Universe."
I don't see how Jenny could be considered misguided. She took her son to one of the best neurologists. While I don't, by an means, think that she's an expert on autism, she is an expert on her child. She is to be commended for going public with a very difficult story.
We have a NATIONAL EMERGENCY, IT'S NAME IS AUTISM! If our children were missing from their beds 1 in 150 we'd be doing something more than listening to the empty words of the CDC and their flawed, bias, written by pr firm studies! It's time to wake up, help our kids. The 37 vaccines schedule is really child abuse, you should be ashamed if you are a pediatrician and doing this to our babies!
May God have mercy on your soul!
Jenny is doing a great service to the thousands of parents of childrem with autism in the US. There is a Doctor in Burbank, CA specializing in autism. She practices the "Yasko Protocol" and treats children worldwide. She really knows what makes her patients function by getting gentic testing on most of them. Then there is extensive stool and urine testing for toxic metals, parasites and so on... Each person with autism is treated as an individual because no two cases are alike. The treatment is planned by the doctor and carried out by the parents. It is a full time job for parent and child, and in some cases there are multiple children in a family with autism. the average medical practitioner hasn't begun to research and study the causes or remedies for Autism, there is no money in it. Pharmaceuticals are not the answer. Treatment requires a strict diet and supplement regime for proper detoxification and to build a healthy being. Oh and did I mention that this doctor in Burbank is an MD with a specialty in Psychiatry. She treated patients with behavior problems, etc for many, many years and is more than capable of making the proper diagnosis. I hope that Jenny and Evan have the opportunity to meet this outstanding doctor and share their notes.
I would love to speak to the first anonymous. I live in the Knoxville area but dont know alot of resources for the county I live in.
Thank goodness we finally have a spokesperson, Jenny McCarthy, who is speaking on behalf of all the parents of children with autism. Jenny, you are just the person we needed to get the word out that there is HOPE for our children.
We thank you and we hope to hear more from you. Don't give up!
If Jenny's son instead had cancer and she went on the air stating that she went to some XYZ hospital in the US and her son overcame cancer, nobody would question her. With that said, it's not her credibility that is at stake, it is the amazing ignorance and "thinking inside a BOX" of people that make such comments about what she is saying.
Why is it that we can't believe her? Has YOUR son been diagnosed with autism? If so, have you TRIED any of the things she has talked about? If the answer to either of these questions is no, then I suggest you don't talk about things you know nothing about. By the way, again, she stated these things worked for HER son...We ALL know chemotherapy doesn't cure EVERYONE...however, I can assure you that because there is a CHANCE of curing someone with cancer, a parent who does not allow their child with cancer to receive chemo will be looked upon by society, the government and people like you, as putting their child in HARMS way...Interesting...
I guess it would make her a better mother to accept the stupidity and ignorance of thousands of doctors and people like you, who are not affected and let her son continue on the path to being an adult with autism who cannot speak/function...
Everyone has added some interesting comments so far. I know how difficult and emotional being a special needs parent is and can be. Let's make sure we keep the dialogue above the fray.
As the mother of a child with autism seeing Jenny on Larry King made me angry, she seemed so full of herself. The fact that she claimed her son "no longer has autism" is crap.
If it were as easy as a special diet dont you think all us parents would be doing it instead of dragging our butts to multiple doctors, speech staff, IBI, ABA etc...
I have tried the diet and got the opinion of the actual doctor that just discovered the genetic link (we are in a case study). Maybe whatever she did worked for Evan but I dont think that it was right for her to preach the way that she did. Many parents are going to be very disapointed when they try the "jenny method" and it doesnt work.
Jenny McCarthy's child is NOT autistic. More and more we find children with a plethora of developmental disorders otherwise not autism diagnosed with this complex disorder. Not only does this create chaos and confusion in the real world of autism, but it harms untold amounts of autistic children and their families when some parent alleges they've "found a cure." Just as Satan poses as an angel of light and is the master of confusion, so are the droves of professionals and parents claiming that autism is as simple as a thousand bucks in behaivoral therapies and a rice and rye diet. The hard reality is folks autism is one of the most complex disorders in the world, which requires constant vigilant monitoring and analysis and millions of hours of sacrifice, pain and suffering. Not that it's without hope, it's just that reducing this disorder, this lot in life handed to many parents and children, to something as simple as McCarthy will have us believe, illustrates the fast food, quick fix mentality of a world that no longer understands what it's like to take up your cross and follow the long, narrow road. Autism is an incurable disorder, but we have the cure to our suffering in the grace of our Lord and Savior Jesus Christ.
Several of the comments have been about how wrong Jenny McCarthy is with espousing what has worked for her child. I disagree with that way of thinking. What Jenny and her son's doctors have worked for her and her son. I have experience with this in regards to my son. The day c. was born, an "expert" neurosurgeon said he'd never walk or be much more than a vegetable. Nothing could be further from the truth.
The point being, you don't realize how much the medical community wants to put you in to a hole that fits their diagnosis until you're faced with some serious health issue. The individulization of health care is often left up to the parents/advocates of the sick child.
God bless you all!
Jenny McCarthy's video is giving false hope to other parents. I as a father of a severe autistic son knows that an autistic child is unique. Meaning there's not one child who have autism with exactly the same level of dissability. There are similarities but leave it at that. When she said there's a cure, she can be sued for that remark since autism is still at it's earliest stage of discovery. None one medical or scientific findings can link the direct cause of Autism. If she's that darn good. The she should give all the profit from her book to all children with autism. Promoting the book in expense of other parents with even worst condition autism in their child is simply unethical and immoral. It's great that her son recovered completely. Put please do not generalize the issue. Educate - not give people false hope.
Oh for goodness sakes will somebody please ask Jenny McCarthy how she got her "butt kicked" by autism when she only spent three years dealing with it before she wrote a book, hopped on a zillion talk shows, gave speeches, wrote opinion pieces, gave magazine interviews and is now working on a movie about autism? This woman is a complete fraud. A real actress. Her child is no more autistic than Madonna has an authentic English accent. Don't be fooled. If you want to read real stories about children with autism read "families of adults with autism: stories and advice for the next generation." There, you will find parents who have spent years dealing with this complex disorder, despite the quick fixes and high profile lies McCarthy speaks louder than life. Get wisdom. Get discernment folks! The child had a seizure and was subsequently diagnosed after presenting developmental delays that quickly resolved. Damm it, I'm tired of the lies and evolving diagnosis of this disorder. Stop the lies! What parents need is tangible comforts and supports, not some goofy celebrity and her fast talking everything's a joke boyfriend pretending they are the authorities on a subject they learn about from reading books and interviewing doctors.
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