MELTDOWN IN CHERRY HILL
By Wendy Fournier
I’ve attended almost every Defeat Autism Now! Conference since my daughter was diagnosed with Autism. Getting together with other parents and with professionals who validate our beliefs on what happened to our kids can be quite an emotional experience. I used to find myself in tears pretty often at these events, but through the years have been able to keep the hurt and anger in check a little bit better.
But during Jenny McCarthy’s talk in Cherry Hill, NJ, I completely fell apart. Jenny brought her film crew along to get footage for the documentary that she and Jim Carrey are producing. She spoke to a huge, standing-room-only crowd and as I looked around that room, all I could think was that there were so many people there - this should have been over long ago, and none of these parents should have to be here.
Jenny asked parents to take the microphone and talk about their children. We heard the same heartbreaking story over and over again. Our baby was perfect, he met all of his developmental milestones and after receiving multiple vaccines, we lost him.
I stood in the back of the room with tears streaming down my face, shaking uncontrollably with profound sadness for these parents as I saw the pain on their faces and heard their voices crack with emotion.
At the end of her talk, Jenny asked everyone in the room to hold up a picture of their children. A thousand hands were raised high in the air, each one proudly holding a photograph of a beautiful child. There was not a sound in the room for what seemed like an eternity – complete silence – yet in my mind I heard these parents screaming, “I’m here to fight, I’m going to get my baby back!”
It was at that moment - looking through my uncontrollable tears at this sea of photographs – that I realized for every one hand in the air, there were 1,000 more kids whose parents weren’t there. The kids in those pictures were actually the lucky ones. And that’s when I really lost it.
I cried for all of the parents who have been given no hope for their children, the ones who have never been told that autism is treatable, the ones who watch their children suffer in pain and have no idea that they can help them, the ones who our federal health agencies have turned their backs on, the throw-away kids who are callously dismissed as collateral damage for the vaccine program.
As parents from all over the country march with Jenny McCarthy and Jim Carrey to our nation’s capitol on June 4th, I pray that these lost children will at last be found.
Wendy Fournier is President of the National Autism Association.
Hi, Marty, Kim Stagliano here. You're right, we all struggle financially to treat our kids. Even Bob Wright, who has more money than God, said on MSNBC, "No matter how much money you have, autism leaves you broke." Have you looked into the Helping Hand Grant from the National Autism Association? Also, there are docs who are helping families pro bono - I know this for a fact. Many parents get treatments partially covered under insurance, like tests for instance. Perhaps you could hook up with a Rescue Angel or TACA rep to help you navigate the system.
In Mass, my kids qualified for MassHealth through DMR, and they covered some of the stuff NOT covered by our regular health insurance.
We're pretty much broke because of having three kids with autism. I was on Good Morning America a couple of weeks ago talking about the financial burden on families. (You can watch the clip on my Kim Blog. Click my name on this comment and you'll go there. The clip in on my sidebar.)
Posted by: Stagmom for MARTY | April 21, 2008 at 08:58 AM
YOU ALL THAT CAN AFFORD BIOMED TREATMENTS , ARE REALLY LUCKY. I KNOW THAT WE CANNOT AFFORD IT , WE DO THE DIET AND SOME SUPPLEMENTS,WE CAN'T EVEN AFFORD TO GO TO A CONFERENCE!AUTISM SPEAKS AND THE ASA,AND OTHER BIG FUNDRAISING AUTISM "COMMUNITIES" SHOULD FOCUS SOME ON THE CHILDREN WHO'S FAMILY CANNOT AFFORD TO DO SOME OF THESE TREATMENTS, WHERE DOES ALL THT MONEY GO ? I WOULD LIKE TO KNOW. I DO NOT WANT ANY THING FOR FREE,BUT WHAT ABOUT THE PEOPLE WHO DO NOT LIVE IN CALIFORNIA. IT IS REALLY FRUSTRATING TO HAVE A CHILD THAT IS AFFECTED BY AUTISM, AND THINKING THERE IS .. SOMETHING ELSE THAT I COULD BE DOING TO TREAT HIS AUTISM.SO PLEASE IF YOU WANT TO TALK ABOUT HELPING FAMILY'S WITH AUTISM PLEASE THINK OUTSIDE THE BOX MORE.WE ALL ARE NOT JENNY MCARTHY.IT BREAKS MY HEART EVERY DAY TO THINK THERE IS HELP AND I CANNOT GET IT.
Posted by: MARTY YATES | April 21, 2008 at 08:18 AM
I wish you all the miracle I have witnessed with my son. I wish I knew the formula that worked. I remember late nights at the computer and challenging the pediatricians until I found one who did get it. We
worked TOGETHER. I know volunteer to help parents navigate the various
avenues they need to travel. We counsel the parents and provide insight and info. We do not charge the parents for this service...and still I can go to a school meeting, and an administrator says to a parent..."He doesn't look autistic". Please keep fighting, telling everyone everything you can. We cannot let ignorance ruin our children's chances.
Posted by: fightinginFL | April 19, 2008 at 10:47 PM
Dear Craig, From "across the pond" I'll report what happened to us. In 1992 at fifteen months my boy/girl twins were given their MMR. Within a month my daughter had changed in front of our eyes (her twin brother remained unaffected). She lost eye contact with us, lost her developing speech totally, withdrew into herself and started throwing things without regard for her or anyone else's safety. Her eighteen month developmental check was reported some years later to have been "very borderline" although she had passed all her previous developmental checks without any difficulty. She was given a provisional diagnosis of autism at 2 1/2 years which was confirmed when she was five years of age. The paediatrician# arranged weekly speech therapy sessions where the speech therapist and I found that my daughter was identifying letters before she could speak them so we used a late 80s(?) Dutch speech & language therapy study carried out on Down's Syndrome children which found that teaching Down's children to read at the same time as speak somehow anchored the two abilities together better than teaching them separately. I bought packs of letter/picture flashcards from an Early Learning Centre (do you have these in the USA?) which was a very politically incorrect thing to do and we used these to teach my daughter how to read. She regained her speech at 3 1/4 years. My belief which is admittedly "anecdotal" and not supported by any medical opinion, is that my daughter had her brain "scrambled" by the MMR and had to re-learn everything she had learned up until fifteen months. My daughter's speech is now very clear although her use of language is idiosyncratic and it is also sadly clear that her view of the world is very different to that of a non-autistic child. If your son is amenable then one more thing that helped was to get my daughter to look into a hand-held mirror large enough for us to be side-by-side and for me to mouth sounds and then words for her to copy, making a game of it.
# The paediatrician told us that we were having a "cluster" and that this was a statistical thing. Fifteen years ago there was very little formal help and few teachers, even special needs ones, with any experience of autism. I find it interesting that my local education authority has just run a course to tutor twenty-five mainstream and special needs teachers to help teach the sixty-five (at least!) autistic children in our area.
Posted by: ElizaCassandra | April 17, 2008 at 11:22 AM
I have been haunted by your words all day: "He doesn't talk anymore. . .I want my son back, but I realize that it will probably never happen."
I don't know you, and I don't know how severely your son has been affected. I don't know if it would be right to give you hope that you will get your son back, not knowing, but I'm going to anyway. I don't know if you want or need advice from anyone, but it's here at AOA if you do.
I do know that I'm praying for you tonight and I'm praying for your son. And I know there are lots of parents here who will rejoice with you for every step forward and we'll grieve for your loss of him now and what might have been.
Please let us know, and in letting us know, you will almost certainly save other parents who come here and see your words.
Posted by: Terri Lewis | April 16, 2008 at 11:12 PM
I wish I could have made it to the Cherry Hill conference. I wanted to go, but it was sold out before I could make the reservation (albeit last minute). My friend was able to attend, though, and she thought it was great. She was most moved by a man who thanked all the mommies in the audience for doing so much to help their children. I will be there in Washington, D.C. at the march, however, with my entire family, as I feel if I do not, then I have only myself to blame, again, if nothing happens to stop the dangerous additions to the vaccine schedule. There are many new vaccines in the pipeline, and the incidence of autism will just incrementally increase if our voices are not heard. No child left on this planet will be "typical", if we do not stand up for them, before the fact. It is ridiculous that this burden should fall upon us, the parents of the already afflicted, but that is just the way it is. There are very few parents who understand the dangers, and many who underestimate the dangers to their own children. It is incredibly sad. They are conditioned by the media, and their pediatricians to think we (the questioners of and disbelievers in vaccines) are all crazy. How I wish that were true!
Posted by: Gayle | April 16, 2008 at 07:20 PM
Well, nothing like crying like a baby right before bed. Great. Now my nose will be all stuffed up! Thanks a lot!
I kid, I kid! Wendy, great job on this post! I was just blogging about AoA and how whenever I jump on to read a post I feel so connected to my peeps (all of the other autism moms and dads out there). Then I read your piece and I am just feeling such overwhelming emotion and gratitude that you shared your experience with me - I was not able to attend the DAN! conference. I am hoping to make it to Chicago for Autism One. If not, I know some wonderful parent, such as yourself, will tell me all about it when they get back! :-)
Posted by: Jeanne | April 16, 2008 at 12:31 AM
I just realized the first DAN conf I went to was in Cherry Hill,NJ. The year was 1998. DR Wakefield was there,Bernie Rimland too. Many were talking about the GFCF diet then. I was extremely emotional, confused, and scared. How was I going to get my son back? I wished I had a good ending after 10 years of trying so many things --too many things to list here.
I am still trying - its just been an extremely rough, tough
case to figure out, with lots of bumps.
The point is; parents have more tools, more voices, DR's, support groups, the Internet, and more. So much has change in the last 10 yrs - there is so much more Hope for children to recover today.
With all the money that this country has, it should be spent helping families get their children treated and recovered. I wished the ones that have all this disposal income would look right in their own cities for those who really need a helping hand - so much could be accomplished.
Parents utilize your energy - spend it on your child, your immedidate family, and take time to nuture yourself. Do the best you can and ask God to do the rest.
Then if you have excess time and money - help other parents.
You can heal the world by healing your world first.
Bless all the children and their families.
We are having a record year with all the news on autism -- and I don't see any let up!
Posted by: Allie | April 16, 2008 at 12:01 AM
Thank you for your moving post, Wendy. I had the good fortune to attend the conference and you perfectly captured the emotion in that room. I can't imagine how anyone could have witnessed that sea of photos and not shed a tear. I had a tough time regaining my composure once the session ended. I felt overwhelmed by the heartbreaking enormity of this epidemic, the palpable pain and anger matched with the resilient determination, love, and pride of the parents assembled. I hope the footage is included in the documentary. It'll be an extremely powerful scene.
Posted by: Cindy Keenan | April 15, 2008 at 08:02 PM
Thank you for painting such a vivid picture in our minds of your evening. My anger, sadness and hope are shared with all of those parents!
Posted by: healingjack | April 15, 2008 at 05:58 PM
Wendy, beautifully written. I really wanted to go to the Cherry Hill rally, and I also really want to go to D.C. in June, but it doesn't look like I'll be able to afford it. My wife and I have scraped every bit of cash that we have in savings and everywhere else, but we won't make it. We both want to be there, we both want to be the voice for my son, who can no longer speak because Big Pharma wanted to make a few bucks.
Hearing about all of these parents, their children ripped from them so cruelly, fills me with a profound sense of sadness, followed by a terrible and smoldering anger (my wife will tell you that I am one of the most gentle people you'll ever meet, but don't piss me off!). I remember my son's last words as he got into the car to go to the Doctor; "Go Bye Bye."
And he did. My sweet, smart little boy went away. He doesn't talk anymore, he doesn't say "Tant tooo!" (thank you) whenever you give him something. He doesn't say Momma and Da-eeee anymore. I want my son back, but I realize that it will probably never happen.
If, with my words and my advice, I can save even one parent from having to go through with the same heartache all of us have gone through, then I can sleep good at night, and I think that I will have a place in heaven.
Posted by: Craig Willoughby | April 15, 2008 at 05:11 PM
Maybe this might make ya'll feel a little better: I just got back from my pediatrician's office and I have finally talked him into getting DAN certified! He even hired me to coordinate the cases. I am so proud of him! So many in this area could never travel what it takes to find the closest DAN, don't have the time to wait on their waiting lists anyway, and don't have the money, but he's going to take insurance as much as possible! Yeah!
Posted by: Kim | April 15, 2008 at 01:03 PM
Wendy..I am with you! Too many kids, too much pain over these years. BUT, we are making huge changes and that is what keeps me going , for me and Meg..and all of your kids too.
Remember, never give up..and we aren't.
Posted by: Teresa Conrick | April 15, 2008 at 12:24 PM
Wendy, I was there too ... with tears streaming down my face. It never fails to make me cry when a mother says and then "he said he loved me." I cry now typing it. No parent, no child should have to suffer through this ... how about that husband that got up and gave hats off to all the moms since he goes to work? Then to see his wife waiting for him with open arms ... pick me up off the floor! Not only are our children hurt by this negligence, families are torn apart .. but not that one!
I try so hard to spread the word. I really do. I feel so defeated. People just won't believe that this could be truth. The sad part is, they may not believe until it happens to them. I do feel like I've saved a few though ... it's heartbreaking to see children with the same diagnosis as my son that we met 3 years ago in kindergarten and in 3rd grade they are still hand flapping, no eye contact, social interaction is simply robotic ... and the speech pathologist told me she just new my son would come into his own when he turned 8. I wish all kids just outgrew autism.
Posted by: Kathy | April 15, 2008 at 11:39 AM
Like you, I'm not comfortable with overt grief. I subordinate sadness by shifting anger -- first at passive parents abrogating responsibility for their child's health, looking for "somebody" to do "something," or waiting for some arbitrary authority figure to tell them how to think.
That role is filled by robotic public health administrators, whose lack of intellectual curiosity earns job security.
These people are family and friends and neighbors and co-workers with unexamined lives who need a crash course in critical thinking and moral responsibility.
Since Jenny McCarthy arrived on the scene, though, more parents have felt empowered to talk of the taboo... vaccine injury.
The only way truth will emerge is if we all become comfortable with discomfort.
Posted by: nhokkanen | April 15, 2008 at 10:39 AM
Please see the other comment I posted this morning, re: the work of Dr. Blaylock.
The AAP is not going to listen, at least not anytime soon.
We need to get MUCH bolder in telling parents how to prevent this from happening, or we'll spend the rest of our lives trying to rescue children.
In other words, we need to educate parents about vaccines, and not just say, "Oh, you may not want to vaccinate. There are some risks."
We need to learn about each shot, and to be able to give good advice regarding what shots to get and what to skip. There are more shots that parents need to skip than to get.
I want this man-made epidemic to STOP, and the push is only still coming from parents.
For the most part, our pediatricians continue to fail us miserably.
Posted by: Terri Lewis | April 15, 2008 at 10:22 AM
Way to make me cry this morning Wendy! I was not there, but we are bringing Jade back through Dr Berger. I run a support group, and every time I field a phone call from a new parent who has never heard of DAN, it makes me want to cry. I think your estimate of 1,000 is probably low. In my group, less than 2% of the parents can even afford to see a DAN. We couldn't, but my husband sold his car, and rode his bike to work for 1 1/2 yrs, so Jade could get better. I know all dads aren't that amazingly devoted.
I do hope the AAP will listen! These children so desperately need help.
Posted by: Monica | April 15, 2008 at 10:02 AM