Autism has been a hot button topic for many years now. Its cause is debated, Holly Robinson-Pete has been in the news fighting for the right of her of-age son to obtain a license to drive a car, or maybe you’ve recently heard about the autistic blue Power Ranger. It seems that we spend a lot of time on the Autism Spectrum Disorder (ASD), but never focus on the actual children and families who live with it day to day. April is Autism Awareness Month and two Indy families have been kind enough to give us a window into their lives with Autism Spectrum Disorder.
Bashiri and Uzuri Asad and Patrice Adams allow us to get to know their blooming young men. Their interview below is inspiring and insightful.
Tell me about your child. Who are they? What do they love?
Patrice: Gregory is a brilliant, extremely talented 3 year old who loves trains (Thomas the train) and dinosaurs. Gregory also enjoys watching educational videos, and playing educational games. Gregga has 4 siblings who he enjoys playing and wrestling with. He is the smartest 3 year old I know. By the age of 2, Gregory was spelling his name and recognizing the alphabet, numbers, shapes, and colors. Now, he has moved on to math, counting money, spelling, phonics and sight words. He is always singing and learning new songs and learning to play musical instruments.
Zuri: Our beautifully brilliant, super energetic, deeply feeling LoveBug is named Nature. He has an organic gift for singing, which he does ALL the time.
Bashiri: He LOVES being outside and active, puzzles and books are beloved past-times, he adores his siblings, and FRENCH FRIES.
Zuri: He LOVES french fries.
Both: A LOT.
At what point did you suspect that your child might be processing the world differently?
Patrice: I suspected Gregory processed the world differently before his first birthday. I noticed that Gregory didn’t respond to his name and would have major meltdowns when hearing loud noises. Gregory also had a difficult time following instructions. As he got older, I realized Gregory had trouble communicating efficiently and was significantly delayed developmentally. Gregory would also avoid playing with other children.
Zuri:We both noticed after a time that he wasn’t big on making eye contact with us when we talked or played, and his verbal communication seemed to have reached somewhat of a plateau.
Bashiri: He also would cover his ears when he didn’t like something on television or certain music we’d play. We talked with our pediatrician, and she made a recommendation for a specialist for us, who confirmed a diagnosis.
How did you handle the diagnosis of Autism Spectrum Disorder initially? How have you had to adjust since?
Patrice: Gregory just received an ASD diagnoses a couple of months ago. I was relieved and overwhelmed at the same time. I already knew what the diagnosis would be, so the load lifted from my shoulders was monumental. However, the reality of the diagnosis broke my heart. There was a part of me that hoped my suspicion was wrong. Since the diagnosis, we have continued our lives as usual. We all had already adjusted to Gregory’s needs, just as we would anyone else. We have began doing a lot of research on therapies and services as well as determine the gaps within those services.
Bashiri: It was actually a relief. We kind of already knew what it was, but to get in the space of someone who had the experience to identify for certain made it more tangible. The removal of the guessing and wondering made it easier to move forward and make sure he was stationed to thrive and develop like his siblings.
Is your child aware that they are Autistic? If so, have they expressed a view or feeling toward being Autistic?
Patrice: Gregory only knows he is Gregory. He is not aware of his diagnosis. With him only being 3 it is a bit difficult to understand, but as he gets older, I’m sure he will gain more understanding.
Zuri: No. His older sisters understand, we make it a point to care for him in a way that he doesn’t feel different than everyone else because of the way he is treated, even though we have to be more vigilant in monitoring his movements and such. He’s very intelligent, and we do plan to integrate a way to help him understand himself better into his life.
What are some resources you and your family utilize? In the city, online, or otherwise?
Patrice: Gregory had 3 AMAZING therapists through First Steps, which is a State funded program available to children under the age of 3. Once he turned 3, we enrolled him in the Early Development Pre-school in Pike Township where is has continued his speech and occupational therapy. We are in the process of setting up additional ABA, Occupational, and Speech therapies outside of school for Gregory.
Zuri: We have a speech pathologist who has been WONDERFUL with helping him communicate his needs and emotions to us, as well as making it easier to converse with him. We are enrolling him in a children’s center here in Indianapolis that has a phenomenal program that will integrate behavioral therapy and occupational therapy for him as well. (Applied Behavioral Center of Autism)
Are there special educational opportunities customized for the way your child learns?
Patrice: Yes… many of the therapies can be done in your home, so it is individualized and done in the child’s environment. It is also done one on one. My therapists paid very close attention the Gregory’s struggles and did a very good job of focusing on those areas
Zuri: Absolutely. Nature learns through play like every child his age, so things like turn-taking games are really fun ways for him to grasp materials we feel are important.
Bashiri: He also loves to play word puzzle games on our tablet, and responds really well to memorization activities.
What conversations have you needed to have with your loved ones concerning your child?
Patrice: Upon informing them of Gregory’s diagnosis, we helped them understand that Gregory is special just as all children are special. And that we will focus on his needs just as we focus on the special needs of ALL children. We celebrate our differences.
Zuri: We explained his diagnosis to those closest to our family, especially the chosen few we’ve selected to care for him in our absence.
Bashiri: In sharing our truth, we’ve also learned that some people close to us also have children on the spectrum, and those people have been instrumental in helping us find the resources we’ve come to utilize.
Zuri: Everyone has been amazing, very understanding and ever vigilant in loving on him a little extra. It makes my heart smile to know that the love surrounding our family and that little guy is so immense and unshakable.
What do you wish more people knew about Autism?
Patrice: I wish more people knew how situations that seem minor can affect a child with autism. Lights, sounds, crowds, smells can all cause major breakdowns. Usually in those instances, there a lots of judge mental stares and insensitive comments. I have left out of public places in tears. More support and less judgement is key. Also understand that autistic children are no different. They deserve the same respect and are capable of doing a lot of the same things as other kids. My Gregory is light years ahead of where my other children were academically by the age 3. They are smart, they are capable, they can learn.
Bashiri: I hate to repeat stereotypes, but I wish people sincerely understood that children and adults with ASD want to be loved, respected, be allowed to thrive, just like everyone else.
Zuri: Genuinely, I wish people would look beyond the labels and see the person in front of them. Everyone has a special something about them, various quirks and things that everyone else may not do or even be comfortable with. We are all uniquely created, and should celebrate those differences, not categorize and subsequently mistreat those not identical to us.
How can the public better support and serve your family and others who care for Autistic persons?
Zuri: Compassion is everything. Operating from and treating one another with compassion is the answer in EVERY context, not just in dealing with those on the spectrum.
Patrice: Educate yourself. Be aware. Be a support.
Patrice’s advice to other parents: Trust your instincts! If your guy tells you that something is going on, take heed. Do not let any doctor, pediatrician, friend, or family tell you any different. Stand your ground. YOU know your child better than anyone else. YOU are your child’s biggest and most vocal advocate. Early intervention is key. Gregory has made improvements by leaps and bounds both developmentally and behaviorally. Early intervention programs like First Steps are amazing and either free or extremely reasonable. Gregory had speech once a week, and OT (occupational therapy) and saw a psychiatrist twice a month for over a year.
Thank you Bashiri, Uzuri, and Patrice for sharing your lives with us all. If you want more information about ASD, you can find it here. Do you have a little one with ASD? Do they share common interest with Nature or Gregory? Share a photo or a little about them with us!