By Lisa Ackerman
This past weekend, we had our 11th annual Real Help Now Conference in Costa Mesa, California (1.) It was a great event to educate and empower TACA families. I always love these events. My favorite part is always watching the parents as they leave; now ready to tackle their next steps to help their children.
In the question and answer period a dad, friend to my family, reminded me of the most important lesson in the autism journey: “Just because they don’t talk doesn’t mean they don’t have something to say”. This lesson deserves to be shared. It needs to be yelled from the mountain tops!
Just in case you have not heard it before, here is my story: My son Jeff was typically developing until 15 months of age. He had almost 20 words and had met all the milestones in the baby books. Then, it all literally changed overnight. He regressed, lost all his words, got very sick, and was diagnosed with autism. This was the most frightening time of my life; I could only imagine how my son felt.
My son was being sucked into the world of autism. He was self-stimulatory, had no way to communicate and everything was exasperated by a myriad of complex medical issues.
During those scary times, Jeff was absent from our world. He was lost somewhere else while sitting in the room with us. I did not know what he understood or thought. I certainly didn’t think he understood my words.
After years of therapeutic treatments and medical intervention unique to his needs, he has come back to us. He attends a typical education placement and is now a freshman in high school with a current GPA of 3.7! He still needs help in several areas, but we always raise the bar every year, and look forward to what he will be able to accomplish next. He has friends and has made enormous progress, but that is not the important lesson.
The lesson: During those tough times, Jeff was taking EVERYTHING IN. He heard what I said, he remembers the detail. He can now talk about the time “when he couldn’t talk.” He shares descriptions of, places and events that happened back then. His recall is impressive.
There are times when I have not been proud of my behavior and my words and wish I could take some things back. In my frustration, there were times I spoke about Jeff like he wasn’t in the room. He was. I now know he heard everything I said.. and understood.
This is a reminder to all parents of children with autism that lack communication skills: They do hear you and they do understand. They know what is happening, and as this dad reminded me, they are probably just are as scared as you are.
Please take this message to heart.
A few important tips:
- Talk to your kids with autism just like you would talk to any child, but keep it simple. Let them know where you are going, what you are doing and WHY you are doing it.
- Spend time with your child outside of therapy hugging them, telling them you love them and why you are fighting so hard. They will hear you.
- Please (and I am begging) do not talk about your kids while they are there in front of you. If you are at appointments (doctor or therapist) have a babysitter attend to your child in a separate room when you get to any details that may hurt their feelings. Don’t share negative emotions and thoughts with others when your child is present in the same room.
- Tell teachers and staff that work with your kids to do the same! Never talk negatively about any of the kids while they are there listening as well.
Individuals with autism can often have broken “outputs”. Their input system, in reference to what they hear, witness, and see is often intact. Usually what can be broken (and repaired) is their output system – their ability to communicate. Even with broken outputs, devices like the iPad can be hugely helpful in giving them a voice until they find their own (2.) This is one of many assistive technology solutions that can help individuals with autism find a way to communicate.
Your children are partners in the autism journey. Console them. Involve them. Share with them.
Thank you for reading this blog. Please share it with other parents. Our children are miracles. You must let them know you are working hard to help them be the best they can be. Always remind them of how much you love and believe in them. They can hear you.
1) Real Help Now Conference www.realhelpnowconference.com
2) iPads and Autism – Innovation in Communication http://www.tacanow.org/news/ipads-and-autism-communication/