Inspiration Series: Running One the Largest Autism Discussion Groups
The inspirational series provides real life stories about autism parents, sibling and those on the spectrum. It is about illuminating the lives of those surrounded by autism, while proving to those newly encountering the spectrum that they are not alone. The previous inspirational story followed a sister's life in a household where one of her brothers was diagnosed on the spectrum.
Autism is a genetic disorder. May might argue that point, but the truth is that while environmental factors serve to aggravate the symptoms and the onset of behavioral problems. These can include everything from high pollution levels in cities, meaning that moving to the countryside might greatly decrease the risk of giving birth to autistic children, to the excessive weight gain during pregnancy that has been found to also alter the genetic makeup of a child.
Interview with Nunu Sanchez
Tell me about you. What are some personal details you wouldn't mind sharing?
I am a 36 stay at home mom of 3 children. I have a daughter who is 17 years old and typical, my son Tony is Autistic and my youngest is Jasmine; she is 6 years old.
When dd you learn about your son's autism?
I noticed something didn't seem right at about 18 months. He was verbal before that, made eye contact, said mama and dada, sang twinkle little star. It literally seemed as if he stopped talking overnight and I didn't think anything of it. His Aunt (my sister in law) saw some signs and shared her concerns with me. He would spin objects and flap his hands in excitement; that was what she had noticed. It hit me so hard at first because I didn't know what Autism was. I mean, I saw a brief explanation of it on the news when they had some new findings about ways to communicate with people on the spectrum, but that was about it. I had no internet at the time to do any research or anything so it was scary. Now, when my sister in law and I look back at the time she was voicing her concerns to me, she tells me that she was nervous to talk to me about Tony. As confused and a little shocked as I was, I needed to hear it and know. I knew her heart was in the right place and she wanted the best for her nephew and I will be forever grateful that she had the courage and love to tell me.
What was the diagnosis?
My story about his diagnosis is a pretty common one, unfortunately. After I finally processed it all, I did whatever I could to get any professional opinion and evaluation; but that took so many years. He was almost 5 when we finally got a diagnosis of PDD-NOS. It didn't change anything except for finally getting the therapy he needed. The neuropsychologist referred us to an ABA program and that's how we got the ball rolling.
What is it like living with an autistic child? What are the hardest moments you have had to overcome?
Living with an Autistic child can be a challenge to say the least but I would rather know "how was it like to live with a parent like me who had no idea what he was going through?" instead. I would not trade my son for the world! He is amazing and caring. He inspires me. He makes me laugh, he makes my heart burst with joy and makes me a better human being, much more than anyone I have ever met. His early years were so challenging, and as much as I would like to say that it was challenging for me, it was a thousandfold more challenging for him. I cannot imagine all the sensory issues he had and how much he had to learn to cope to get through it all. Plus, being a child who doesn't know why this is happening to him and why everything hurts [makes things even harder on him].
What are some of the most special moments you've shared with your son?
The most special moments I share with my son are countless. One of them is cooking. He loves food and loves cooking. Anytime I cook dinner at home, he is involved. He loves adding spices and he makes suggestions all the time for what I should add in my dishes. I love that time. It is definitely something we share exclusively.
Tell me about becoming moderator of one of the largest Autism groups on Facebook?
I run the largest Autism Group on Facebook. I did not create the group, however. I joined several years ago, when I first got a computer and went online. I needed support so badly. I did not know anyone that had a child with Autism like mine so I felt very isolated. I did not have anyone to guide me but joining the group made every difference in the world. I knew that I was not alone and I had these wonderful people that are the kindest people I have ever met. A lot of the people I have met on the group I still communicate with today and call them my "Autism Family."
After being in the group for a small period of time, I was chosen to be an admin by Paula Da Ponte (the creator of the group). Ever since then I felt like I had a purpose through supporting others. This meant a lot to me. Paula is still a part of the group and it is her "baby" but she left it in my hands to run. I am so grateful for that because I feel like I am helping others. Sometimes being a stay at home mom, it often feels like the work I do is unnoticed but the group make me see it otherwise.
Being a moderator on one of the largest Autism groups is amazing and rewarding. When I hear that someone has made a connection or feels that they're not alone, it makes me truly happy because that is what I got out of the group when I first joined. I have made so many wonderful friends there that I consider my "Autism Family" and the members we have are great people. It makes me feel wonderful to see so many dedicated parents and individuals on the spectrum be so caring for each other and willing to support each other.
What are some take home messages you would give to other mothers in your position?
One of the most important messages I would give to mothers or parent or caregiver in my position is give yourself some credit. It is hard sometimes when we do not see any progress or there is some regression but do not be hard on yourself. Things like this happen and happen often. Don't give up, keep going and give yourself a break, as you are doing the best you can.
Nunu Sanchez is the moderator of the group called "Autism" on Facebook, an amazing forum which allows for the sharing of stories, venting our frustrations and providing much-needed advice to those who are newly facing children with autism in their household and are lost as to how to proceed appropriately. I want to thank Nunu for her contribution to the Autism Community and her story that is so similar and yet so different from so many others'; truly inspirational.