I am a glass half full person, always the eternal optimist. You can tell from the name of the organization I founded – Talk About Curing Autism. But my optimism was put to the test back in 2006 when I handled a series of help calls that rattled my soul.
That morning I spoke to three parents who were at the end of their rope. Each parent wanted advice on how to give their child over to the state or even as extreme as an institution. Each call was a stressed out and broken parent. Their children’s issues were severe and each parent talked about having Child Protective Services called after their child wandered away. Each parent chronicled the self-injurious and accelerated aggressive behavior towards family members. All feared for their families’ safety, but never worried about their own. I had never been confronted with questions like these before. By the end of the last call, I could hardly stand up, I was crying for these families and especially their children.
One of the parent stories weighed heavy on my mind. The parent uttered, “Sometimes others make me feel like I am the enemy. How dare I produce this child into our society.” These words shocked me – my own personal experience with my son at his lowest functioning level where he screamed, threw tantrums, didn’t sleep more than 2 hours at a time, and couldn’t communicate his basic needs was enough to send me over the edge. He was four and just under two years into the diagnosis – I was exhausted! Basic needs like going to the store for much needed supplies were never easy. Often I had to clean up knocked over shelves or chase him in a parking lot while magically catching him before an oncoming car would hit him. Dirty looks and stern words addressing my parenting skills were the norm. “Why can’t you control your son? What’s wrong with you!?!” I am not proud of the answers or comeback remarks I often delivered. One time in a store I replied to a person standing in line next to me, who complained loudly about parents who couldn’t control their kid. My response “my name is Lisa Ackerman, that is my son in a full tantrum, he has autism. Clearly you are an expert in autism. Please show me what to do. I need help.” Needless to say, the person quickly disappeared and my son and I cried together all the way home. We experienced similar comments on a regular basis.
Children with autism don’t have any physical symptoms or a wheel chair that gives an outward sign to proceed with compassion to the outside world. They look and act in ways where the previous generation would recommend a good spanking. I only wish a good spanking would solve autism. After these experiences those calls and the regular communication with the over 24,000 families, which my organization serves, I wondered when did parents and their disabled children become the enemy? Many families, mine included, deal with severe judgment and justification for our existence. Much needed help often was and still is met with a closed door. Nothing about autism is easy.
I founded TACA over 10 years ago with the goal to build community for a fractured group of parents so we didn’t have to feel alone. TACA grew beyond any expectations. We keep moving forward because of the calls and e-mails from the many families seeking help and those whom benefited from our services. Amazing stories of recovery… a child that loses their diagnosis and no longer has autism or need for any services. A child in regular education and indistinguishable from their peers. It’s just like a unicorn sighting. These unicorns really do exist!
My goal is to change the perception that autism is hopeless. To change paradigms that our kids are worth fighting for and need our compassion. Families need to feel support so they accomplish daunting hurdles. Parents will lead us to new answers to help the children we hold dear and share what they have learned with others with a “pay it forward” attitude. Isn’t that what a parent is supposed to do?
So great of you to share your message and insight, you speak for so many! Looking forward to future blogs.
Hi Lisa — you were one of the first people to guide my son into recovery and for that I will be forever grateful. Can’t wait to read more of your blog posts! -BJ
I am a grandmother with newly diagnosed 2 and 6 month old child I
need guidence and immediate resourses .I anderstand I am in a . .thanks Anarace for time Please help me
Please call the TACA office 949-640-4401 so we can connect you to local help. We can help.
You ROCK!!! Thank you for TACA. Thank you for being glass half full – ain’t easy.
Oh, and thank you.
Thank you for all that you do. We are only a few months into our diagnosis, and my son goes through at least one super-meltdown per day. It is very difficult. Your organization gives us hope that this is temporary.
I just finished reading your story and think of myself as quite strong, but while reading it I too began to cry, it was like reliving many situations very similar to the ones you have endured and experienced. The only thing got us through these times, is remembering the funny moments. We are very blessed to also be in a situation similar to one noted above, our son is now part of the general education population and if you were to look or speak with him, you would never know that he has ASD.
I also now am an advocate for children who cannot speak for themselves, I have been with a local Childrens community Council, which gather monthly to share ideas and work with the public services providers, inculding the DOE, to get these children the services they need and deserve.
Mahalo and Aloha!
K – please read out to TACA. We can provide mentorship and support. Where do you live?
I can promise you it does get a lot better -the kid in this story is now 14 years old, attends a regular ed school, doing 7th grade work and has friends. It is a far cry from his original prognosis, daily tantrums, non verbal, sickly and no sleeping self. He is a walking miracle named Jeff.
Amen to that! Don’t ever regret antiyhng you do to help your son. If no one ever rocked the boat nothing would ever happen in this world. Forget about it and move forward. Kudos on the no more anonymous comments. If anyone has antiyhng to say I think they should have the courage to put there name on it anyway! It’s not like we all sit next to each other at church on Sunday anyway!
Lisa, I so remember the early days of TACA. Hanging out in your living room in Huntington Beach. I loved reading this. It’s always helpful to remember where we’ve been.Thank God there is hope. We received our diagnosis 13 years 4 month’s ago. I’m in awe of my son today. Thank you my dear.
thank you 🙂
Thanks for putting words to what we feel.
Thanks all for the kind comments. This is a great opportunity to share my heart and concerns. If you have any feedback or future blog topics please share. I am grateful to be part of such an amazing community with love for their kids. We are on this journey together.
Lisa, You inspire me. Thank you for being such a great role model.
Could you talk about the up’s and down’s in Autism. I find when my daughter is doing great I’m doing great but when she is having a difficult time so am I. It’s the roller coaster that never ends. I get one behavior under control and then another behavior develops. How do you manage it? Thanks for all your hard work!