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.
Diana Romeo is a proud stay-at-home mother of two children and a newly published author. For 19 years she has been mothering a young boy who falls on the moderate to severe side of the autism spectrum. She also is mother to a 17-year-old neurotypical daughter.
Diana recently published her first book From an Autism Mom with Love. She has previously published articles describing her family’s adventures in Autism Parenting Magazine and other publications. She has a degree in Business Management and has worked in human resources.
A is for Awareness – When and how did you first become aware that something was different?
In 2001, my sister, cousin, and I all had babies at the same time. I had a boy and they had girls. I began to see that their girls were developing speech much faster. I asked my pediatrician about it when my son was about two years old. He said not to worry, girls develop faster than boys.
My son has always used words. He could recite his ABCs, count to 20, and name his colors. What he couldn’t do was use his words to communicate. He couldn’t express his wants and needs. He couldn’t say “I want milk.” I asked again around two years and eight months and the doctor said he would give me a referral for an evaluation if I wanted. I felt it was needed and asked for the referral.
U is for Unique – How has this experience been Unique for you and your child?
There are aspects of autism that are challenging and there are aspects that I marvel at. My son loves to do jigsaw puzzles. When I do a puzzle I build the borders first and then match by color. My boy can start anywhere. He sometimes does puzzles upside down or sideways. He does them by shape. He seems to memorize them as he goes because he gets faster and faster each time he does it. He has an incredible memory. He never forgets anyone.
Recently we were looking at old photo albums of when he was in preschool. When we got to the teacher’s picture he shouted: “Miss Joanna!”, a name I’d long forgotten.
We’ve met a lot of children on the autism spectrum over the years. Some were from school and some from extracurricular activities, like special needs karate and gymnastics. We’ve met children who are all over the spectrum. A lot of the time, I feel like the kids we meet are less affected than my son.
My son has self-injurious and sometimes aggressive behaviors that make life incredibly challenging. I know there are other kids like him, but we don’t encounter them too often. I don’t let these challenges prevent us from going out in public. Our plans are always fluid. If he’s having a calm day we go ahead with our plans, if it doesn’t turn out so well, we turn around and head home knowing tomorrow is another day.
T is for Tools – What tools exist now that didn’t in the beginning that could help other parents?
Autism is being diagnosed at an early age so that is helpful. Early intervention really is key. There are also many more therapies available. We just started something called I-ASC (International Association for Spelling as Communication) which teaches spelling as a way of communicating, something that wasn’t available back in the day.
There are more medications available and many of the ones we used early on are now generic and less expensive. It’s also tremendously helpful that there’s been so much education about autism in the last two decades and people are more familiar with the condition. I often wear a pin that says “I love someone with autism” when we are out. I find that people are more understanding when they know that a person has special needs.
I is for Inspire – As a parent, when you look at your child or children what inspires you?
My child is strong-willed and independent. He doesn’t want help (a blessing and a curse). He will do something repeatedly rather than have me intervene. It doesn’t matter if he needs to do it 10, 20, or 30 times. Eventually, he will do it on his own. I’m inspired by how hard he works. He never gives up and you can see he’s proud of himself when he “gets it”. I’m proud of him too.
S is for Support – Are there things you struggle with or have struggled with, and what types of support do you still need?
I struggle with watching him struggle. I struggle with my expectations. I want so much for him and I want it all now. I need to be patient. He makes improvements all the time. It is one step forward, two steps back and that’s hard to watch. I need to chill out and realize he needs to go at his own pace and no one else’s.
I’ve had help from so many people over the years. The mom who watched him for me while I went to the appointment. The ABA therapist who made a chore and activity chart to organize his days. The respite workers have been a blessing for us. They give me time to rest and recharge, to get errands done (that are more difficult to do with my boy,) and to spend one on one time with my daughter.
It’s okay to lean on others. The support of other special needs mothers has meant everything to me. They’ve taught me that I’m not alone. Even if our struggles are different and our kids are at different levels, they understand what I’m going through. We can all get through this together if we share, and are there for each other.
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M is for Manage – What keys to success can you leave with parents so that they can better manage their day-to-day efforts?
I think managing expectations is key. Not only for your child but for yourself. We are all human and face a lot of challenges. Take it day by day. Sometimes you will handle things better than other times. That’s okay. It’s essential to take care of yourself. The calmer a place you are in, the better you can cope with what the day brings.
Communicate with your child. When I’ve been irritable or less patient than I should, I tell my boy “I’m sorry babe, Mom’s having a hard day.” When he is aggressive towards me, he says “sorry Mommy” and we move on. Don’t take yesterday’s troubles into today. It’s a new day, start over. Remember not to put the focus on autism but on your child. Goof around, have fun, and keep the focus on love
This article was featured in Issue 123 – Autism In Girls