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.