Open Wide and Say, "ARGH!"
In Ants We Trust!

Life After Jenny McCarthy

By Lisa Ackerman

A funny thing happened to me in 2005. A friend of mine Lisa Menne introduced me to Jenny McCarthy. As with many families introductions are made parent to parent needing to provide help and hope.  Lisa is a dear friend of Moira Giammatteo who runs the TACA Valley chapter and Jenny met Lisa at the UCLA program.  This story of moms helping moms happens every day – but it does not always include some one who is famous.

There is no punch line – unfortunately it’s like a lot of new moms I meet out there – her kid was just diagnosed with autism.  But this is the same kid from the NY Times best selling books “Belly Laughs”,“Baby Laughs”, and “Life Laughs” by his famous mom. I have those books. I loved them. I watched Jenny on Singled Out and a few of her movies. Her sense of humor was always right up my alley.

Things with Jenny were no different than any other mom looking for answers. She asked questions and I made suggestions. I did not profess to have all the answers, still don’t. 

Back in 2005, Jenny was like a lot of moms looking for answers and finding support while her child received out patient services at UCLA.  Support happened in the waiting room while their beloved children received much needed behavioral and speech therapy services behind a two way mirror. This support built a community of parents ready to make a difference for their children and change the prognosis of “no hope.”

Later that year, Jenny decided to meet up with us mommies at the DAN Conference in 2005. I suggested that she may get recognized. Jenny mentioned “Don’t worry, I will dress down. No worries.”

The next day when she came to the DAN conference I thought to myself “Even in my best day 20 years ago I did not look that good! If that is dress down, I got some serious work to do in multiple areas.” Jenny looked fabulous – in fact despite she & Evan was going through she looked like Jenny McCarthy! Beautiful. People recognize her and took pictures. Almost all of the attendees were wondering “What is Jenny McCarthy doing here?”

Jenny was funny. She made us all laugh. But when it came to her son things got serious. My heart broke with her story for the serious problem called seizures. Evan had them and bad.  Her 4th book “Louder than Words” chronological describes these scary events. Even though I heard about these events first or second hand I still cried reading the book and praying for Evan.  A young baby should not have to be going through so much. My heart broke for Jenny and her family.

At the end of the day of the DAN Conference Jenny looked at me and my friend Lisa and said “I am going to help Evan heal and will tell the story on Oprah!” I did not want to crush her feelings to let her know that we (the autism community) have been calling, faxing and emailing Oprah for YEARS with no response back. It is a good thing I didn’t say anything.

So as time passed and a couple of doctors later – including one DAN doctor Dr Jerry Kartzinel - Evan started doing something amazing… he got better. A lot better. So much so my calls or emails with Jenny dwindled down. I considered that most excellent news because she did not need me anymore. Things got better for her son. Thank God. It is something we all pray for.

Fast forward to early 2007, Jenny called to let me know she was almost done with her book about Evans journey. She wanted me to review the parent pamphlet in the back for ideas. I was thrilled she was going to educated families and most importantly providing much needed hope. She also promised to use her voice and get loud on this issue. I was happy but looking back I am certain I did not appreciate the magnitude of her statement about getting loud.

Jenny also mentioned she wanted to be the TACA spokes person. I was thrilled. We would help her communicate to families what she did to help Evan in hopes to providing them information to research and consider for their children.

Years back we always wished autism would touch a family that could change the world for everyone in our community. It was something we joked about picking which politician, musician or celebrity would get such an honor and join the “autism club.” I had no idea when this would happen. It was just a matter of time for to hit someone just big enough to make a difference.

In July, Lisa Menne called to let me know about Jenny’s media tour schedule: Oprah, 20/20, Good Morning America, the View and Larry King. I could not believe my ears – this was huge. But what would she say?  I started getting nervous about how to help architect the words so the message would be heard. Words became enemies in trying to find the right combination. It had to be enough words just to describe how this journey evolves and what it does to our children and families and also point to cause and hope. After 8 years, I still don’t know how to consolidate my message to under 2 hours. I have no elevator pitch on autism. It is too complex.

But I digress… and thought some more. Oprah just “did” a show on autism in April 2007. I never thought she would do it again. It sounded to me like Jenny’s book was a home run by the looks of this media schedule. I proceeded to start begging for a copy. Much to my surprise a pre-release copy came upon my door step in August. About 4 hours straight through and several Kleenexes later I was done. I was floored. She did a most excellent job that Jenny.

Just a little over a month later Jenny completed the media tour. Oprah was amazing. Outside my family, sitting in the audience was one of the best moments to date in my 8 years on this autism journey. Then the unthinkable happened – her Larry King appearance topped Oprah just a little over one week later.

I was intrigued by 20/20, the View and Good Morning America on what they covered and what they DID NOT cover.  Without Oprah or Larry King, these three shows by themselves would have been great segments on autism. But having the Oprah and Larry King Shows which demonstrated TV’s two best hours on autism made the other shows look so much smaller as a success in comparison. This was NOT due to Jenny’s amazing efforts. This was due to what producers would and would not say on TV.

Jenny continues to talk to families through her TACA “Ask Jenny” and video blog. Her message continues to be of hope and recovery. Something no person in the media spotlight has spoken about. We are thrilled she is out there and saying these words. These words are already helping thousands and thousands of kids. She is not going away anytime soon with much more in the works.

After some years from now, we will all remember the time “Before Jenny” and “After Jenny”. She has made a huge impact that will have ripple effects for years. Thank you are not big words enough for me to say to Jenny. Thank you Jenny – your efforts and words are appreciated.

Lisa Ackerman is Executive Director and founder of TACA. Jenny McCarthy is TACA's National Spokesperson.

Comments

Lisa A Jeffs mom

Mark, I adore you. I have to comment on Autism Dads. I have met some of the most amazing men on this journey. You are one of them.

But I have to just share some thoughts after talking to some of the dads - that many dads are looking at their sons as a mirror into their souls. I have had several dads tell me they felt like a failure because their son, that looked EXACTLY like them, had autism. Dads who have daughters seem to handle it differently and some dads no matter what the kids sex just check out. So do some moms. (TACA has five single dads that blow my mind on how amazing they are.)

Nothing makes me more sad. Nothing can crush your heart that having someone get the blame for something they had nothing they can do to change the outcome (only if they had a crystal ball.)

Some dads have the warrior instinct with their kids. Or it is acquired over time. Or some dads just are crushed because it is just too hard to "go there" emotionally.

I think Jenny's husband was just so freaked out and so damn scared he checked out. I have no way to verify this. He is a really nice man and cares about his kid. Something happened along the way. A marriage crumbled...

The story IS heart breaking. If parents can work together - divide tasks up and conquer as a team they can move mountains. I am so saddened and tired of "we are getting a divorce" emails I receive monthly. Mind you - I was almost that statistic 15 times - but thankful I got out of my own pity me party and made my husband part of the team. I could not imagine being with a different guy. He is fantastic.

The issue is all about your pain threshold and how you deal with it. Some folks can't deal. Some folks deal great. And some folks deal over time... I wish I could understand the formula to help families better. Besides my wish for autism and recovery, my other wish is for families are to stay together. Our kids need us to be strong. That includes dads and moms.

Nonie Snyder

I to want to say thank you to Lisa but not for only posting this but for being there for me at the Dan conference. I needed some help and Lisa gave me her e-mail and offered help. Even though she was so extremely buisy. So thank you so much Lisa. Lisa treated me just as wonderful as she did a star like Jenny. Now about Jenny WOW! She is a wonderful person. She took the time to talk to everyone she could at the conference. She is so down to earth and funny. I am so happy she is helping us all by getting the word out that there is hope. The day I found out my son had autism I found autism speaks on the net and was devistated after watching there video. Thinking there was no hope. Now thanks to Jenny and others I found out there is hope and am so excited to be apart of a community of people who really care about changing lives. So again I say a big thank you to Lisa and Jenny.

Holly Riley

I had the opportunity to thank Jenny in person at the DAN! conference on Sunday, and, like Lisa, I felt that the two words "thank you" could never be enough. In the moment though, after she signed my book, I said them: "Thank you!" and then I added, "...for everything." She looked me in the eye and gently nodded.

She knows how much she means to us. She is one of us.

nhokkanen

Thanks, Lisa, for your years of hard work and for chronicling Jenny's path to autism TV history. Many of us have charged up the media mountain but come tumbling back down. Jenny has the total personality package, and her willingness to be a lightning rod takes sheer bravery.

Across the country more people than ever are accepting the message that countless kids have been and are being injured by vaccines and need medical testing and treatment. As in advertising, the key now is to repeat, repeat, repeat.

I hope Jenny has the strength to continue, and to persuade others to come out of the shadows and speak up.

Mark Blaxill

Great post Lisa. I didn't get to see the Oprah show but I did watch Larry King and found myself amazed at how far we've come and how well Jenny did at channeling the "warrior mom" mojo. Elise watched it and was cheering Jenny on. It all just seemed natural and on target.

I just hope that two things happen as a result of this. First that Jenny gets the support she deserves from our community for speaking out. And second that we can keep up the "AJ" momentum. We tend to find ourselves in a "one step forward, two steps back" mode more often than not.

One other reaction I have to share was in reading Jenny's book. I read it two weeks ago in all of about two hours. It felt like reading a mystery novel, even though I knew the ending. But the overwhelming reaction I had was feeling sorry for Jenny in how her husband reacted. And even sadder at the sense of how many moms shared that experience. I found myself wondering why so few dads really do step up to the plate in this journey and what we can do to help them out. I've gotten to know a number of dads who have really been great leaders in our community, but perhaps they are the exception rather than the rule.

Don't know what to do about that, but it's clear our kids will do a lot better when both mom and dad are pulling hard for their recovery, and doing it together.

Alison Davis

Lisa, thanks for recounting your experiences B.J. and A.J. As Kim Stagliano (our own Erma Bombeck of Autism/Biomed) has written somewhere we all need to don blonde bob wigs. But it's NOT because this epidemic finally hit somebody "big enough". We figuratively don our blonde bobs because this woman knew exactly what she had to do "for such a time as this". And she did it.

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