This Mother of an Autistic Boy Became a Sense of Solace for Thousands
I met Nunu Sanchez several years ago through a mutual friend in the autism world. I have never regretted it. When I first spoke to Nunu I was lost, so lost. I had no idea what to do for my children who both held autism diagnoses at the time. I had no idea what to do for myself, and I had no voice. I owe everything I have become, no matter how small, to this woman. She helped me find the advocate inside of me, gave me confidence to release my first book, then my second, all the way to my soon to be sixth book, not only that, but she introduced me to a support group that ended up meaning more to me than I ever imagined it would.
Mrs. Nunu Sanchez is one of four [3 active] administrators of a large international autism support group online. Nunu is the one of the 3 active administrators that is in charge. The group is her baby. She ran the group of over 20,000 members by herself for years. Making it a large priority in her life. Nunu has dedicated the last several years of her life to helping parents with autistic children and autistic adults. She lives in Wisconsin and is the mother of 3 children. Tony is 12 and has P.D.D.N.O.S. Natalya is 17 and Jasmine is 7, both 'neurotypical.' I noticed directly after meeting Mrs. Sanchez for the first time, years ago, that she has a way about her that calms any situation she’s in.
When monitoring her support group she has this grace about her that I observed helps her members feel comfortable enough to open up with the group and get help. She has a gift for motivating people and a naivety about her that allows her not to realize how amazing what she does is or how much of an inspiration she has become for thousands of lost parents. Nunu has it all, she is definitely a role model for all parents of autistic children. I know she is for me
Brooke: Thank you so much for letting me interview you Nunu. I want to jump right in. Can you start by maybe telling me what has been the hardest part about raising Tony? How have you coped with it?
Nunu: I’d say understanding where he’s coming from and what he is going through so I can help him especially during meltdowns. When he has meltdowns it can be anything from not being able to communicate his needs, or communicate that he‘s in pain or sensory overload or any combination of those things. When he was younger he used to meltdown, severely, several times a day. They used to be very violent and self-injuring and lasted for over an hour. That’s not including the less severe ones he had during the day.
I would have never coped with it all as well as I have if it wasn’t for the connections I’ve made with other Autism parents online. I felt so supported and not alone. I’ve received priceless advice and that alone saved me.
Brooke: Meltdowns are the hardest. Zain use to have bad ones like that too. Some nights I would just cry. You know through group, just like I do, that a lot of us parents have one thing that they accredit a large amount of our child’s success too. What would your one thing be? Therapy? A certain teacher?
Nunu: ABA Therapy! That is the best thing that ever happened to Tony. I was fortunate to have ABA providers that were wonderful and never once did anything I didn’t approve of. I’ve heard of horrible ABA stories like some providers did not let the child stim, but that wasn’t the case with my providers. They were a godsend. They helped him communicate, gain important life skills, and they taught me how to help him in his everyday life.
Brooke: I remember when Tony received in home ABA Therapy. It made all the difference. A lot of parents say that. So, why don’t you go ahead and divulge what Tony’s diagnosis is? Does he have any distinguishing co-morbid disorders?
Nunu: Tony’s main axis diagnosis is PDD-NOS. He has co-morbid disorders of global developmental delay, severe speech delay, and sensory processing disorder.
Brooke: Thank you for being open with that. Did the doctor(s) diagnose it right off the bat or did he go through several misdiagnoses?
Nunu: His primary physician didn’t listen to our concerns. We didn’t know it was autism at first but we knew something had to be wrong. She told us, “It’s nothing. He’s a boy.” but that wasn’t good enough. Then my sister in law mentioned Autism and we went through other avenues to pursue a diagnosis.
Brooke: If you had to pick one defining emotion that you felt whenever you first heard that your child has autism what would you say it was? Why?
Nunu: Well, we suspected it before the diagnosis but it still was emotional. I had so many questions that couldn’t be answered, like “would he be able to have relationships and get married” Back then I didn’t have access to the internet to do any research so I didn’t know much. Plus even if I did have access to the net there wasn’t very reliable info out there.
Brooke: How true! When Zain was diagnosed years ago there was no information out there either. I remember becoming so confused because of all the misinformation. It was mind numbing. With that said, a lot of us have one thing that we accredit most of our sanity still being intact to. What would your one thing be?
Nunu: I am fortunate that my kids are all in school full time and I get to stay home and have time to myself in total silence.
Brooke: The mom’s weekend! I wait until Monday morning to do anything. So, how old is Tony now? Can you tell us how your family dynamics are?
Nunu: Sure, I’ve been with my children’s father for almost 19 years. My son has an older sister, Natalya (17), and a younger sister, Jasmine (7). We do all live together.
Brooke: You have one amazing family Nunu. I always like to ask, if anything, what has raising autism taught you the most about yourself? Do you thank the disorder for that?
Nunu: Autism has taught me tremendous patience and understanding. It has changed the way I look at people and the world. I thank my son for that.
Brooke: I think that patience and autism parenting are synonymous. Everybody says patience, including me! I don’t want to leave the impression that autism is all hard times. What has been the funniest thing about raising a child with autism?
Nunu: Many things! He is a funny child and brings us so much laughter. This is one of those many areas where I don’t envy parents of only typical children. He is not very verbal but will get obsessed with certain words. He once got obsessed with the words taco supreme. And he yelled “Taco Supreme” as loud as he could out our windows and scared the life out of people who walked passed our house.
Brooke: That is adorably funny! I would’ve been laughing. So, last one, in conclusion, if you could give only one bit of advice to a fellow parent of a child with autism what would it be?
Nunu: If your child isn’t verbal, talk to him/her as if they are! Ask them how their day was even though they don’t look at you or respond. Tell them how your day was and why you love them. Just make sure you acknowledge them and never ever talk about them as if they don’t understand!
I would like to thank Mrs. Nunu Sanchez for sharing a small part of her story. Nunu is astonishing. If you know her you love her, if you don’t, give it time and you will. This woman has taken her son from a melting down mess and helped guide him into the very tall, very handsome young man that he is becoming. She is a remarkable center of support for anybody that needs her and an over abundant center of knowledge when it comes to the disorder that affects 1 in 68 U.S. schoolchildren.
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