“In the past I was so worried that I didn’t know what the future would look like, but now I believe that my son is capable of anything.” – Wendy G.
Autism Spectrum Disorder (ASD) affects 1 in 44 children and is reported to occur in all racial, ethnic, and socioeconomic groups (Center of Disease Control and Prevention [CDC] , 2022). ASD is a developmental disability caused by differences in the brain and those living with ASD may behave, communicate, interact, and learn in ways that are different from most other people. Researchers have yet to identify a single cause for ASD; however, there are several signs and symptoms such as trouble with social communication and restricted or repetitive behaviors, that help medical professionals make a diagnosis. While there is still so much to learn about the causes of ASD and how it impacts an Individual, we look towards the stories of those caring for children living with autism spectrum disorder to provide deeper insight.
The following interview showcases a mother-son duo learning to navigate their way through life after receiving an ASD diagnosis. The Norooz Clinic Foundation gives a special thanks to Wendy G. (La Habra, CA) for sharing her story about what it is like parenting a child who is living with Autism and for shining a light onto autism awareness, inclusion, and self-determination.
Tell me about yourself and your family.
This year was my 40th birthday. I have two adult kids and a three-and-a-half-year-old. I work in insurance, and it can be a pretty high stress job sometimes. I have been married to my second husband for nearly four years. He really is my best friend. I love being active, despite that I haven’t really been active lately. This morning, I got the chance to visit a local wilderness park and it made me miss my hiking days. I love my family. I am the oldest of four and so I have always felt like I have to be in charge of everybody, which can be very draining at times. I kind of envy the younger ones, I feel like they were able to make decisions that I was never able to. I love to read! Especially when it’s Audible. I recently became a Game of Thrones enthusiast, so right now I’m listening to the whole series being read to you. I love sports and spending time with my family.
I noticed when you introduced your son you didn’t mention his diagnosis. Is that something you do purposefully?
Yeah, I don’t start introductions by saying “I have a three-year old child living with autism” because I don’t think that identifies him. AJ [her son] is such a force that later if anyone were to meet him, I will mention how he does have autism, so that I can better explain the behavior he is doing and I don’t want people to think he is rude for not responding back when spoken to. I don’t necessarily identify him as “AJ the child with autism”, just like how I wouldn’t mention my other children as JG the psych student or EG the musician. I identify my children by their names and their ages first. I don’t believe I am in any way trying to deny his diagnosis. I just believe that people should know him before they know of his condition.
Tell me a little bit about how you discovered your child’s disability, what was your reaction?
The time frame is a little meshed in, but ever since AJ was about 6-7 months old I knew there was something different. AJ would stand up in his crib and I would notice that sometimes when I called him, he wouldn’t look at me. Also, there were times when he would laugh and other times where he was stone cold. He would often hit his head on the frame of his crib at night, so to avoid this my husband and I would sleep in the living room. Which was one of the key things that made me think “this is different”.
So, I would write notes and start to do some research, but I noticed there was not a lot of information on how to identify autism in children who are less than a year old. Also, I would notice that in the middle of the night he would be asleep, but then stand straight up, like he was sleepwalking! I remembered when my oldest child was sleepwalking the doctors had mentioned that it was because her brain just couldn’t shut off, so I found it odd that my 6-month-old was practically sleepwalking. So, I made it a point to communicate with my son’s doctor, so we could start keeping track of all the things I was seeing.
My son’s doctor is amazing, he encouraged me to keep my notes going and would tell me that I had the right to perform any testing if I wanted. Little did I know at the time that he suspected. Around my son’s first birthday my family had experienced the death of a loved one. There were moments where I couldn’t help but cry and I realized that my son wasn’t reactive to my crying. You know sometimes when you cry, and a child sees it and shows some kind of concern? My son didn’t. I noticed that he would show emotions like joy when Sesame Street came on the TV, but then he would go back to stone cold stares. So, this was definitely another big sign.
As he started to get older, and I know you shouldn’t compare, I started to see the development of his two closest cousins, and I started to think “yes. My son is different”. I remember my husband’s initial reaction was “No.”, but at the eighteenth month checkup I told my doctor that I truly believe something was different.
That’s when I heard the phrase “well…there is such a thing known as autism. It’s a little too soon to tell, but when he hits 3 years old, we can evaluate him.” We didn’t even make it to that point because around his 2nd birthday he got so incredibly sick with an ear infection, but he never displayed any emotion for it. And I’m talking like a high fever sickness and not a care in the world was shown by him. So, I told the doctor a little before his third birthday that I wanted an evaluation done.
At first, they ran some hearing tests to ensure that his hearing was intact. We had an amazing doctor who agreed to do the diagnosis not only the day after Christmas, but also for free and those evaluations can cost about $1,5000 dollars. So, it was almost like a Christmas miracle to have a doctor like that.
When the diagnosis came in, I do remember it being really hard. Every time that I would express my concerns to the doctor, I was always waiting to hear them say “you’re just being dramatic mom”, but that sentence never came. When we got that official diagnosis, I thought to myself…I am never going to hear that sentence. Sometimes you don’t want to be right, you want to be wrong. I wanted them to tell me that he couldn’t hear, or his development would soon come. So, when the diagnosis came in, I just cried. I cried and I cried because I thought this is real and my child will forever have this label.
I have to say that now I am so glad that I don’t feel that way anymore. I tell other moms going through the same thing, that it’s easier said than done, but someday you’re going to think it’s okay. I eventually stopped crying myself to sleep every night. Even now I sometimes think like oh my gosh I was so dramatic. I have a beautiful boy who has a life ahead of him. I am so fortunate that my child wasn’t given a life sentence or diagnosed with a terminal illness because that is the reality for some parents. I think I was able to snap myself out of it by telling myself “How dare you cry over something so manageable and there are so many resources to help him”. I told myself that my son is still here.
I do believe in prayer, and I often said that if God’s will and my plans don’t match, then I just ask that he give me the understanding and strength to carry on with his plan. I count the blessings and the milestones that therapy brings. My son has overcome so much, and I know that therapy works. Autism changes your life, but it doesn’t mean your life is over.
What were some programs and supports that you used to help your child grow and develop?
AJ goes through about a minimum to 12 hours and a maximum of 20 hours a week of ABA [Applied Behavior Analysis] therapy. We have the option to cancel here and there when needed. He attends TK [Transitional Kindergarten] for three hours every morning during the week. He used to do speech and occupational therapy, but unfortunately, he doesn’t do that anymore. My husband and I have been wanting to call and schedule those again, but realistically we were looking at about 40 hours a week and that’s really hard. It would mean that one of us would have to give up our job. I recently started this thing called a “Busy Book”, which is great because AJ has always loved books. We do have an iPad with some educational games that he gets to use from time to time, but it’s mainly his therapy sessions and puzzle books that help with his development.
Do you find this type of schedule hard for not only you and your husband as working parents, but also your child?
I’m typically the one to push more, my husband is the one who often tells me I need to think of AJ. I look at it like we can use all these resources, but it’s a lot. I can see my son get drained or overwhelmed. So sometimes it varies. We have a program that is so flexible that if I call saying “you know what we were up till like 3 in the morning we can’t do sessions today” I am able to reschedule sessions with no punishment. Whereas I’ve heard, in the mommy-groups I’m in, that parents can get charged for canceling sessions.
Interviewer: Wow! Almost like a punishment.
Interviewee: Yes, like a punishment! Which is unfair, in my opinion, because those types of companies don’t know how hard it can be sometimes. I understand that some people may be downright disrespectful of a therapist’s schedule and things of that nature, but I think that these kinds of punishment-like things need to be more thought out because I can advocate for the fact that it can be really hard sometimes.
What are the most challenging aspects as the parent of a special needs child?
I think the emotional aspect is really hard because it really is an up and down ride. There are days that I want to see him run around and respond to other children. I think it’s the milestones he’s not hitting and the not getting to celebrate in the same ways that a parent of a neurotypical child gets that are really emotionally challenging. I think there’s an isolation that parents like me often put on ourselves because I sometimes think certain events will be too overstimulating, or the thought of having to explain to more people why my son isn’t engaging can feel like too much sometimes that I will opt-out of events. There is even a physical limitation sometimes. My body isn’t in the best shape, so it sometimes hurts when my son gets into a fit because it is too hard to carry him, contain him, or even dodge his kick. I sometimes feel that parents with a neurotypical child can say “hey stop!” But with AJ, when we do tell him to stop, I feel so guilty because I can’t help but wonder if the word “stop” even registers.
What is your greatest worry for your son in the future? And how do you overcome these fears?
I think my biggest fear is “will he ever be independent? And what does that look like?” Do I want him to get a driver’s license? Yes of course, but what does that mean? Is he able to follow and obey the rules of the law? But if he did get a driver’s license that obviously means he was able to adhere to a level in society that is needed to function. He can read and write. Or I ask myself “will he grow up and be in a group home?” “How will my other two children feel about him being in a group home, or what will people say when they find out we allowed him to live in a group home? Will my adult children have some sort of schedule to visit him? Will there ever come a time where they don’t visit him because they get so preoccupied with their own lives? I also get saddened by the question of whether he will ever start a family of his own. So, it feels like a lot of questions and a lot of sleepless nights. I tell myself I need to win this lottery money because I need to set everything all up! So, despite hoping and praying that I win the lotto, I overcome these fears by actively trying to think of ways that I can set up life for him. The thought of him getting older is scary, but it’s an incentive to focus on my health, so that I can be there for my son.
What would you like people to know and understand about kids with special needs? What should we teach our kids about children with special needs?
For adults, definitely understanding sensory issues, that’s big. For an individual living with autism, it’s not as simple as “oh it’s loud and it bugs/annoys me”, it’s more along the lines of noise can be physically painful. So, getting a better understanding of how sensory overload works. Another thing for adults, asking “what can I do to help you?” can truly mean the world to a parent like me. I had a family member say “I want to help you, but I just don’t know how. What can I do to help you?” and it was such a refreshing question because the answer was “I appreciate you wanting to help but the best thing you can do right now is to just keep some distance and not help me”. Because in that situation I just needed a minute to calm my son down. To me that question is worth so much more than any other thing that someone can do thinking they are helping. A question like that puts the outcome in my hands versus in the hands of what someone thinks I need.
Interviewer: I really like that perspective because it maintains an individual’s boundaries. Almost like “don’t just put your hands over someone’s ears because you think it’s blocking out the noise”. Individuals living with autism have a right to their own personal space and only you as the parent can truly know what helps and what doesn’t.
Interviewee: Yes, exactly! I am very lucky that AJ is surrounded by people who, once they found out about his diagnosis, were Googling stuff on their own and trying to educate themselves. So, I hope that adults really never underestimate kindness and how being accepting makes a difference because ultimately their kids can see that effort being made.
For children I really like how cartoons play a role in explaining things. I know Disney and other companies have created cartoons that showcase individuals with autism. Inclusion in cartoons makes a difference, and even educational videos made to inform children on different types of disabilities is something that needs to be shown.
Also, I think having more sensory friendly places would be a step in the right direction. I find myself noticing how nosy life is. Like right now we are sitting outside, having dinner and the music is kind of loud. I just can’t help but think it would be nice if they lowered it down, so people can enjoy themselves. I think noise is just a part of the lifestyle, but I wish sensory needs would be taken more into consideration.
What message would you like to share with other families who are going through similar situations?
Never stop researching, never stop advocating for your child, and trust your gut. If something doesn’t make sense, then question it. My son once had a therapist who consistently kept calling out, and it was understandable because she had a lot going on. She was a very nice person. I told the supervisor that I understood her situation, but she’s affecting my son’s development and I need someone else. It was nothing personal, but I needed someone else. That was a hard conversation to have, but it was something I had to do for my son. The therapist ended up coming back to us after a leave of absence and I never treated her any differently. It was clear that she was going through something and was able to fix it. Which is understandable, that’s a part of life. I feel like I made the right decision because if I had let it continue my son would have continued to miss sessions and who knows how his progress would have been.
Lastly, I often think about the saying “You can’t fill other glasses around you, until your pitcher is full”. You must take care of yourself before you can take care of your child. Even if it’s taking the time to play ten minutes worth of Tetris or Candy Crush, just do something for you. It’s nice sometimes to do something that requires no effort when you are constantly surrounded by so many other things in life that require high maintenance. So, taking the time to care for yourself is what is going to get you ready to take care of your child.
What is your favorite part about being AJ’s mom?
He is so much fun! He really is! AJ is such a cuddler and he loves to be hugged. He is so good at telling you what he wants. It may be hard sometimes to get a word out, but when he for sure wants something he’s good at telling you. Also, he is so handsome! I look at him and think “oh my baby is so handsome.” He is such a perfect mix between my husband and me. I love the fact that he is here. My husband is such a good stepdad to my older two children, and I am so glad that he was able to experience what it is like to have a small child for the first time. I have always thought that my husband is such a good person, and that God should bless him with a child. And I can see my husband’s kind personality in my son. People just light up when they see AJ and now that he is starting to hug people more it has been so great. AJ has allowed others to see me as a different type of mom. I had my two older children at a very young age and now that I am older, I have changed a bit. Also, my parents get to see another grandchild and I love that. Sometimes I look at my son and tell my husband “He’s actually here. We did this.” I am so grateful for the things my son has given me and I get to see my two oldest kids be older siblings. I am so beyond grateful to be AJ’s mom.
Last question, and you kind of already touched up on it, but what has AJ taught you and what gifts do you see AJ bringing to this world?
I think he’s already given a different understanding. No one in my family had any direct experience with ASD. So, for my family, AJ has taught us so much. Given that we are from a Hispanic, Mexican culture, topics of mental health, or behavioral challenges typically don’t get discussed. At the beginning I would get some comments saying, “Is he slow? Why isn’t he listening? He’s a bad kid.” And I think that this experience has taught a lot of my family members that maybe they were too quick to judge. Perhaps the children they perceived as “bad kids” had something going on beneath the surface; therefore, if we just take some more time to think before we just assume then we can have a little bit more patience. I think there is a very big issue with racial minorities being under-diagnosed, so I think AJ will help bring representation to the Hispanic community and help lead the topic of ASD to conversation.
I believe people can learn from him. I truly believe all my children possess many talents and I can see that in AJ. He takes such a liking to his older brother’s piano playing, so I wonder if he will bring some musical talent into the world. He also loves to sing just like his older sister! So, I love seeing my children bond over these things. I hope that when he gets older, he will find his own way of bringing music into the world. I am so excited to see his personality develop and transcend.
Interviewer: It sounds like AJ is such a head turner and it is not due to his diagnosis, but rather his shining personality.
Interviewee: Mhm yes! I believe my son has such a light to him. The other day he and I were laying together and his uncle walked into the room. Then, without saying a word AJ got up, walked out of bed, and gave him a hug. Then walked back and continued laying down. His uncle responded by saying, “I really needed that hug”. So, I know that my son has so much compassion in him and sometimes I think maybe he’ll do some type of humanitarian work. There are so many possibilities as to what he can do. In the past I was so worried that I didn’t know what the future would look like, but now I believe that my son is capable of anything. So earlier when you asked me, why didn’t I choose to start by introducing him with his diagnosis, it’s not because I am ashamed to share, because I am very open about his diagnosis, but I just don’t label him like that. He is my son, and he is capable of anything.
Interviewer: It sounds like once people get to know your son, they become obsessed with the light he brings them. I appreciate your willingness to have conversations like these because they help bring awareness. Stories like yours help individuals learn more about how people living with ASD are people first and have their own unique personalities that transcends beyond stereotypes. I believe your son brings a light into the world and offers so much. I must say for an individual who does not say much, he is so outspoken. He has such a joyful personality to him and upon meeting him you just can’t help but want to know more.
Interviewee: Thank you. I know my son has already brought so much joy to so many people and will continue to spread love.
Interviewer: Well, thank you once again for agreeing to have this conversation. I know how hard it can be to take the time out of your life, but sharing your story makes a difference. I truly believe that you are serving as an advocate for those who cannot speak for themselves and for that I thank you. May you and your son experience all the great things that have yet to come. Take care.
Interviewee: Likewise, thank you.
Support is Available
The Norooz Clinic foundation is proud to bring stories such as Wendy’s to life. We thank her for taking the time out of her busy schedule to speak about her experience as a parent of a child living with ASD.
Caring for a child who is living with ASD can affect one’s mental health drastically. The Norooz Clinic Foundation offers free weekly support groups every Wednesday at 12:00 PM PST via Zoom. We care, we listen, we don’t judge, and we don’t try to fix you. We all work together alongside one another, so you will never feel alone. We offer mental health insight and tools that have helped us in our journey to mental health recovery.
For more information, please email info@noroozclinic.com or call 714-386-9171.
References:
Data and Statistics on Autism Spectrum Disorder | CDC. (2022, March 2). Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/autism/data.html
