So, I mentioned that one of my grandchildren has Autism. Eric is 11 years old. He is non-verbal, severe to moderate on the spectrum. This little guy has taught me more about love, compassion and acceptance than I could ever learn without him. He has taught me to look at people with my heart, and has made me a better person.
I still remember the day the diagnosis was official. I remember my “avoid feelings at all cost” mode kicked in. I comforted my daughter as she sobbed in my arms, and put on my brave “mom” attitude. I’ve defeated bigger things than this – I could handle it. Well, I didn’t even have a small clue as to how much our world would change with that one single diagnosis. I didn’t realize that she needed me to feel – to cry with her. If I could do it over, I would leave off the “avoid feelings” shield.
Looking back on that day brings so many mixed emotions. My shield was in place. Feelings were still hard for me to process. What was behind that shield? I can tell you now it was loss, pain, helplessness, despair. I was looking at a double-edged sword. I could not make it all better for my daughter. Her life was changing beyond anyone’s control. I could not take away the panic she felt, the despair for her family’s future. And I could not hold my little guy and take away his struggles and his confusion.
What could I do? What was I fighting this time?
There are tears in my eyes when I write the above paragraphs. I still remember that day like it was yesterday, but I am remembering it without my shield in place. The healing didn’t begin until I acknowledged the feelings. Another lesson from the Universe – acknowledge feelings – check!
The Autism Journey for each family is unique. Though we are all on the same road, we must all choose a different path to best suit our precious children: Blog: Walk Down Autism Lane
I read this on a Facebook page – and I couldn’t have said it better. My daughter and I visit many pages – it’s so great to find others sharing our journey. When I found out Eric had been diagnosed with Autism, I got on my computer and started to search for everything I could get my hands on regarding Autism. There was not much available then. When he was diagnosed at 18 months old, the statistics were 1 in 150. Today, they are 1 in 68.
My daughter joined the search with me. We wanted to be prepared. We wanted to know everything about being on the Autism Spectrum. Hey, we didn’t even know there was a spectrum. We knew absolutely nothing. Nothing really could have prepared us much. Each journey is different, each child different. If you met one child with Autism, you’ve met one child with Autism. I’ve learned it is easy to read about Autism, but a whole different story to live it.
I never cease to be amazed at the change in the statistics. How could it be that I had never heard of Autism before my grandson’s diagnosis? Why was it so hard to find information on it.? Is it new? Has it been around for a long time and I was just oblivious?
Can I ask a question? If you have no one in your family who is on the Autism Spectrum, how much do you know about Autism? How do you view families who live with someone on the Autism Spectrum? When you see a child in a store, kicking and screaming, their parents at their wit’s end trying to get a handle on their child, what do you think? Do you automatically think- what a brat – I’d never take that from my child.
Guilty – yes, guilty on all counts. I knew nothing of Autism, knew nothing of the struggles others faced. I didn’t know that children with Autism have sensory issues and being in crowded places can literally hurt their senses. I judged the parents of that little guy. I didn’t know. I didn’t know that there was something to know. Does that make sense? I want others to know about Autism. I don’t want my grandson and others with Autism, growing up in a world that does not understand them.
I cannot begin to tell you of the hardships and sacrifices we, as his family, have made. Or of the struggles my daughter and son-in-law face on a daily basis to help our little guy thrive in his world. I can tell you that they believe it is worth it. So very worth it.
We are raising children who see the world in a different way than we do. They know frustration and anger, but don’t know judgment or hate. They see the simple things in life. My grandson teaches me to look at things differently. Not to see what may be directly in front of me, but to look beyond. See the colors in a bubble – look how the water flows so naturally as you pour it, sporadically if you spray it. See how it makes a rainbow as it falls. To smile at others because sometimes their struggles are not visible and a smile just may make the difference.
No one will ever know how thrilled I feel when my grandson takes my face in his hands and looks into my eyes. When he takes the time to “see me.” How happy I feel when I hear his genuine belly laugh filling the room, making everyone within hearing distance laugh along with him, not even knowing why. The joy I feel at a single new word, or the success of a new food that we can add to his diet. All if his little idiosyncrasies, his flapping, his spin ing are a part of our world that is uniquely him. I never stop wondering – what is he thinking.
What will he teach me today?
Debbie Potocki Provost can be reached at [email protected]