Encouragement Speaker Derrick Hayes gives an AUTISM Interview by asking six questions through each letter in the word AUTISM to give readers an insightful perspective from parents, experts, entrepreneurs, and other leaders in the field.
Today’s AUTISM Interview is with Lola Dada-Olley, who is a mother of two children on the autism spectrum and also the big sister of a non-verbal man living with autism and an intellectual disability. He is her greatest teacher and aided her in detecting autism in her children decades after his diagnosis. Along with being an advocate for autism, Lola Dada-Olley is an attorney and journalist.
A is for Awareness
When and how did you first become aware that something was different?
Having a brother on the spectrum allowed me to have a front-row seat to autism-related behaviors in an intimate way growing up. It was those same types of behaviors, such as the lack of eye contact and stimming, that allowed me to detect and receive a medical diagnosis of autism in my son and daughter at two and a half years and at 18 months old, respectively.
U is for Unique
How has this experience been unique for you and your child?
It’s unique to me because I have more than one child on the spectrum, and they are on varying ends of that continuum. Plus, one is a boy and one is a girl. I grew up with my brother living with severe autism; he is also non-verbal, so that was really the only form of autism I was accustomed to.
But as the saying goes, “When you meet one person with autism, you’ve met one person with autism.” Although some of the behaviors I’ve witnessed firsthand in my children I’ve also seen in my little bro, it is still its own distinct and unique experience.
My older child can speak quite eloquently, and people often ask me if he really is on the spectrum, as though it is something the doctors and I have made up. But, if you observe him long enough, you can see where his challenges lie. His sister’s challenges are far more apparent; she is still mostly non-verbal and is learning to use her iPad to communicate better.
Raising a girl living with autism is not as common as a boy. They are not diagnosed as often. Many times, when I attend autism-related events, my daughter may be the only or one of very few girls in the room. So, those are just some of the ways in which this journey feels unique to my family and me.
T is for Tools
What tools are there now that were not there in the beginning that could help other parents?
My children are relatively young, so they have been beneficiaries of years’ worth of awareness campaigns. My son would be considered a modern-day early intervention story. He is in the gifted and talented program at his school; there was once a time when I dreamed of him being able to utter a full
sentence spontaneously. He underwent 50 plus hours of ABA, speech, OT, and PT for nearly two years. In addition to that team, he had a developmental pediatrician and child psychologist. We have hope he will be self-sufficient as an adult and attend college.
I am very fortunate to be raising children at a time when autism was not something to be hidden. My brother, on the other hand, is in his thirties; he was raised at a time when ABA was first being talked about. He didn’t have one-quarter of the resources my children enjoy.
My son and daughter are the direct beneficiaries of their uncle’s struggles and the advocacy efforts that came about as a result of parents and medical professionals making positive strides in areas like social acceptance and treatment.
I is for Inspire
As a parent, when you look at your child or children, what inspires you?
For my son, it’s his understanding of his diagnosis. He understands it is a part of him. In second grade, he explained to a classmate that all disabilities are not always visible and why. He was in second grade when he said that! I was in awe. He inspires me every day; he is showing incremental progress in recognizing and working through his autism related challenges with a mix of grace and innocence.
My daughter inspires me every time she makes incremental progress also. It is not always as bold and pronounced as her brother’s. She not only has autism, but an intellectual disability, apraxia, and allergies that can sometimes all work together in a way that can make some days tough.
For years, she didn’t smile. Then one day she did, and it felt like the heavens opened up. She shows love in all the ways it counts. One day, I was crying and she simply walked over and put her hand on my shoulder. She, too, is an old soul in her own way.
The road at times may feel long and winding, but I truly thank God that He trusted me enough to make me the mother of these two children. They are my assignments from God and I will do my best, within my own human limitations, to do right by them as much I am humanly able to. One day at a time.
S is for Support
Are there things you struggle with or have struggled with and what types of support do you still need?
Of course! I am definitely human (as cited above)! I sometimes struggle with my inability to fully communicate with my daughter at times. Her recent improvement in receptive communication has helped to mitigate that a bit, but it is an area I do struggle in.
Sometimes, given her other challenges, like her allergies, she is unable to tell me where and how she is hurting, which, in turn, of course breaks my heart. My challenges with my son lie in the social skills category. He can be a highly logical and linear thinker, so sometimes, things like nuance or even just asking him to do non-favorable tasks can lead to parental frustration for sure.
But, in both cases, we have a community of medical professionals we regularly consult with and seek guidance from in order to help our kids be the best version of themselves they can. For my daughter, that has been ABA and OT this season. For my son, it has been mostly OT. We are starting to look at cognitive behavioral therapy options on the horizon as well to aid him in regulating emotions and situations that may frustrate him. Again, one day at a time.
M is for Manage
What keys to success can you leave with parents so they can better manage their day to day efforts?
It is a mix of mindfulness in the moment while remembering what you are putting into practice in that moment is a step closer to creating a more improved version of your child’s older self. Our kiddos need more repetition/practice than other children in certain areas of life, so the more you expose them to, the better they can cope later on. Did I mention one day at a time?
Also, the village is important. Getting a group of medical professionals and community partners/friends that can share in your vision for your children is huge. Whether it be the neighborhood barber to the special education teacher to the development pediatrician, put together a team who all have the same goal of working on making your children the best versions of themselves.
This article was featured in Issue 104 –Transition Strategies For Kids With Autism