Welcome to week two of Life on the Spectrum. Last week you were introduced to the Favrier Jones family today I’m happy to share the beautiful story of the Burke family.
I’m thankful for social media. It is the place where I’ve been able to reconnect with people from so many areas of my life. I’m specifically grateful that I’m able to witness the lives of my college classmates. Liz is another one of my Purchase College peeps and thanks to Facebook I’ve had the pleasure of watching her become the amazing wife and mother she is. I knew that I wanted to profile her family on my blog during Autism Awareness Month so I reached out. I’m grateful that she responded.
Dave and Liz are the loving parents of four beautiful children. Today we will learn about John and Jordan Burke 9 and 8 years old respectively. They are Puerto Rican, Dominican, and Irish. They both enjoy playing video games, especially Fortnite and Roblox. John is exceptionally talented in Math and loves to think of new inventions. He loves listening to The Beatles and can rap every song in Hamilton word for word. Jordan loves to draw and make comic books. He has a very vivid imagination. He loves to cook and try new foods. Since both he and John have multiple food allergies, Jordan likes to create dishes that he and others with allergies can enjoy. Both boys are extremely close to their family. They love bowling and swimming.
They attend public school and are both in ICT (Integrated Co Teaching) classes. They both receive PT, OT, and Speech services as well as ABA Therapy. They have received additional support through counseling during the pandemic to help with their feelings of confusion, fear, and anxiety. Jordan has a therapy dog that helps to calm his anxiety. She is a loving and welcome addition to the household. Dave and Liz both met and graduated from SUNY Purchase. Their number one priority are their children. They stress the importance of family to their children every day and remind them how blessed they are to have one another. While Liz admits that there is a part of her that would love to keep her children in a bubble away from hurt, cruel people, and discrimination; she also knows that it’s far more important to help her children learn through trial and error. “One day we won’t be here and I don’t want my children to be helpless. I want them to know that not only do they have each other, they also have the ability to do for themselves.” Dave and Liz have four beautiful children under the age of 10. Life is busy and throws unexpected curveballs, but they have kept their love, their faith, their sense of humor, and their resolve to do whatever it takes to help their children grow up to be independent and self sufficient. “When our children grow up, I want them to remember how much their parents loved and believed in all of them. I want them to know they matter and can do anything they want even if they have to go about it differently.”
Deveter: Liz thank you so much for agreeing to chat with me today. How old were Joh and Jordan when they were diagnosed with autism?
Liz: John was 18 months old and Jordan was 2 years old.
Deveter: That’s pretty young. What made you have them tested?
Liz: I began to notice little things with my boys and at first I tried to ignore it or brush it off as just something quirky. But deep down I knew that it was more than that. Both of my sons had fleeting eye contact, repetitive behaviors, had delayed speech, would not respond to their names, preferred to play next to you but not with you, were extremely sensory seeking, I had to guess what they wanted since they were not able to communicate with me in a way I understood. They would grunt and be in the general area of something they wanted but they did not point. If we were in the kitchen, I didn’t know what they wanted to eat or drink. Sometimes it was a toy they had left in there or they wanted to walk around with their favorite cup. We couldn’t understand each other and I would start to get upset because I if I handed them the wrong thing they would drop it to the floor and rock back and forth, Eventually they would become frustrated and have a complete meltdown. They would thrash and bang their heads on the floor with these gut wrenching sobs come over them. I had to grab them and hold them close to me so they wouldn’t cause injury to themselves during a meltdown and many times I would sob right along with them feeling just as frustrated, upset, and scared as they were. I was told by many doctors that they couldn’t be evaluated until they were two. One day when John was still nonverbal, he split his lip wide open after throwing himself on the floor because I didn’t know what he wanted and he had been trying to tell me as best he could with his grunting for 30 minutes. I called my doctor and demanded an evaluation immediately. I may have used a few expletives but he was evaluated soon after. Jordan had been receiving physical therapy since he was a baby and was in and out of the hospital being treated for a skin disorder. We began to see signs of Autism from him very young as well but because he was under so much stress and pain from his skin we needed to focus on his healing from that before we could fully address his Autism. My first 5 years as a mom were a blur. Thank God for my husband because I don’t know how I would have made it through without having a nervous break down.
Deveter: I’m so glad you demanded that the Dr. have John evaluated. As parents we have to speak up and demand what we know our children need (even if we have use some choice words! What did you know about autism before the diagnosis?
Liz: I knew very little. John was the first one to be diagnosed with Autism. When I first heard my son’s diagnosis, I cried. I was scared and completely uneducated on what Autism truly was. I literally told myself, “You got one day to cry. Tomorrow morning you are going to find out who you need to call and what you need to do to help John.” As I learned more about Autism and the complexity and wide range of challenges it presents, I knew I had to keep learning in order to help my sons. My husband and I felt very alone when we started navigating all this. I decided to be vocal about our story in the hopes that it could help other families and to teach my boys that Autism is nothing to be ashamed about or hide.
Deveter: Wow. Even through fear you were able to push through and put your child first. What type of Autism does your child have?
Liz: Autism Spectrum Disorder is the umbrella term for all the disorders associated with Autism such as Asperger’s syndrome, childhood disintegrative disorder and a few others. Both of my boys present with a unique set of strengths and needs. John is incredibly intelligent and insightful. Jordan is artistic and witty. Both are intuitive, very sweet, mild mannered, and friendly. Both are also sensory seeking, hyper, anxious, and can become overstimulated by noise, lights, and sounds. I tell my children to never be ashamed that they have Autism. When they asked me what it was I told them that, “Some people call it a disability, but Papi and I believe your brain works in a beautiful way. You see things in a way that many of us can’t because our minds are not open enough. Don’t let anyone, even yourself make you believe that you can’t do something. You can do anything you put your beautiful mind to, even if it means doing it in a different way. Your Autism is your super power.”
Deveter: “Your brain works in a beautiful way”, I love that!!! As the parent of an autistic children what does a day in your life look like?
Liz: For us, life is much more different than when they were babies. With age comes a new set of obstacles, but also a new set of little victories. They received such intense therapy over the years and my husband and I work tirelessly with them. I believe all of that along with God’s love and how hard the boys work have played into how far they’ve come. Now they are 8 and 9 and amaze us every day with their tenacity. A typical day begins very early in the morning with John. Jordan likes to sleep in. They usually need daily reminders to complete daily tasks like brushing their teeth and getting dressed. They fumble with buttons, zippers, and snaps so they need help with that. They both have ADHD so they can be very hyper and easily side tracked. We make sure everything is ready in the order they need it so they can practice being more independent by doing things like getting dressed on their own and combing their hair. Neither of the boys can follow multi step directions so we break down things one at a time. For example, instead of saying go get your book bag and make sure you have all your books packed up; we will say bring your book bag to the living room. Once they complete that task we then ask them to open their bags and we will name all the things that should be in there. If anything is missing they have to go and come right back and put it in. The goal is to make them as independent as we can. It’s funny when you first envision having children, you never think about your child having a disability. But when it happens and you start living a reality you never imagined, eventually you get to a place where you make peace with it all. That’s not to say you don’t wish your child didn’t have to deal with a disability, but this is our truth, this is the card we were dealt and my kids have taught me so much about unconditional love. What it truly means to love someone with every fiber of your being so much so that you will literally do anything for them. My children bring me even closer to God because I know only he could have imagined a life for us that some people would look at as a hardship but that I truly believe is a blessing.
Deveter: Children as the teacher is something I’m hearing a lot during this series. We have to be open to learning from our little people. What is the most ignorant thing someone has said about autism and how did you correct them?
Liz: I’ve heard a lot of ignorant things said to us about Autism from doctors, teachers, and other parents. The one that gets me the most is: “Wow, he doesn’t look autistic. You can’t even tell!” My answer varies depending on my mood. But it ranges from: “He doesn’t? Damn, We’ll try harder next time” to just being matter of fact and saying “That’s rude, don’t say that again. By the way he’s also smarter than everyone in this room.” If they care to discuss it, then I explain that Autism by itself is not a physical or intellectual disability – it’s a developmental disability.
Deveter: Interestingly enough Myla’s response was exactly the same! What in the world does an Autistic person look like? Foolish people. Both of your responses are perfect! What have you done to be an educational advocate for your child?
Liz: I knew that the best advocate my children could ever have would be me. I attended as many parent workshops as I could in the beginning and still attend some yearly. I bought the book by Wright’s Law on Special Education Laws and learned how to prepare for I.E.P. meetings and how to request services and ask the right questions. I also read several books on parenting children with Autism. The best thing I have done overall is to no longer worry about what anyone thinks when it comes to advocating for my children. I no longer worry about being perceived as a pushy, overprotective mom when I deal with the Special Education department. You can think whatever you want, but I will fight to make sure my children are getting everything they need to succeed in school.
Deveter: Being a fighter is also a running theme within this community. Fight on! How can we support children and adults on the spectrum?
Liz: One of the first things everyone can do is to simply be kind. Children and adults on the spectrum want what everyone wants: to feel welcome and included. Their interactions and mannerisms might be different, but everyone wants to be accepted for who they are. We need to always teach and remind our children to be kind and to not judge someone just because they may look or act different. Have patience and understanding.
Deveter: I’m definitely taking that to heart. It’s very simple to be kind, have patience and understanding. Thank you for sharing that. What is one thing you want people to know about life with autism?
Liz: Life with Autism is challenging and downright difficult sometimes, but it can also be beautiful. I love seeing life through my son’s eyes. How they perceive things, how they understand things in a different way. We see the picture but they see the details.
Deveter: what is your biggest dream for your child/ren?
Liz: For them to grow up happy, healthy, loved, and to know they matter.
Deveter: Liz, your plate is clearly full but yet you have made time to share your families story with me and for that I’m thankful. I pray that your boys will continue to grow and learn and bring so much joy into your lives. I look forward to seeing the great things they do as they get older. I’ll keep watching and sharing!
Reader I hope you enjoyed this little peek into the lives of the Burke family. Stop by next week and learn more about Living on the Spectrum.
Until next time…