Navigating Parenthood Together: A Series of Conversations #1
This is my first interview in a series where I speak to a parent with a child on the autism spectrum. My questions will appear in bold, and Jesse’s responses will follow in the regular format.
How did you initially discover The Autism Project, and what prompted you to seek help?
I began by looking for resources and different things available for my son, Nicholas. When I signed up for Medicaid, it led to a connection with The Autism Project, and they made sure I was involved with your organization. I also kept monitoring your Facebook page to see what was available and that is what lead me to your social skills groups. I remember calling The Autism Project, and everyone was pleasant. I am so thankful that I reached out.
Since then, I have participated in the Imagine Walk, and we have done Camp WANNAGOAGAIN! When I picked him up from camp, he did not want to go home! You guys were nothing but acceptance, welcoming, and simple. It was an easy process.
Would you recommend The Autism Project to others?
Absolutely, I recommend everybody to you all for anything because you offer such diverse groups that are accessible to everyone. Not only is The Autism Project working with somebody, but the workers also take the time to get to know your child. They provide feedback on the classes and assess whether he is benefiting from them. To me, you all are like a family. They know him and me so well; I am just beyond grateful.
Are there any specific family support members or resources that truly had influence on you during the intake process here?
Yes, so not only is my son enrolled in groups, but I too myself took some virtual courses with The Autism Project. I attended parenting group classes, learned about navigating insurances, explored various therapy options, and participated in the 7-part series. Also, my parents are involved in the Grandparent Support group. There are so many different resources and the variety of them, along with the genuine support, made a significant impact on my family.
How has your perspective on parenting and family life changed since Nicholas's autism diagnosis, and what adjustments have you made to enhance family dynamics?
People always say life would not give you something you can’t handle, and that it very much true. Life has changed, and I am honestly very thankful for every milestone that I see. It has also taught me patience.
I have a son who is 6 years old with autism and a daughter who is 4 years old that is not on the spectrum. So, working to explain and help my daughter understand has been one of the best achievements. She understands that her brother’s brain just works differently and that different is not bad. For instance, sometimes if he yells, she will say, “if you yell it hurts my feelings,” and now he will follow up with, “I’m sorry that I hurt your feelings.”
So, life has changed drastically. We got the help early on and were referred to you several times as a valid resource.
What were some of Nicholas' main milestones that left a lasting impression on you?
Hearing him say "I love you" for the first time. He was 4 years old and never naturally said it to me until then.
Seeing him tolerate sensory input like hugs without discomfort. Now, I can give him a hug without him saying, “ouch, you're hurting me.” He now hugs me back and even asks for hugs where before he did not want to be touched.
Another thing that just amazes me about my son is that he is very hyper-focused on letters, shapes, and numbers. He has the alphabet memorized backwards; he can multiply and subtract; he can count to 200+ and multiply by 5’s, 10’s, 15’s; his brain is amazing.
Recently, he took part in a first-grade concert with the entire class. He tolerated the entire 30 minutes, and he was there the whole time in front of everybody. These are just some of the things that amaze me because I know how hard he must work, and a lot of people say to me “I don’t know how you do it.” But the truth is, I do not do it, Nicholas does all the work, and I am just there to support him.
Are there specific practices or recommendations from The Autism Project that you implement at home?
Yes, using visuals plays a crucial role for us. We like to use visual stories for what we are doing and for what the next steps are. What I love is that every Saturday morning when I come into The Autism Project, Mr. Bill is ready with his social story. Then I tell him, “Mommy and Savannah are going to the grocery store, we're going to get a donut, and then we will be back in the waiting room.” So, he knows we are there, but it is a lot of telling him what is happening next. We also stay flexible because he might be having an off day and what I think is next might not be next. So, we can reason with him when given that flexibility.
What advice would you give to parents who have recently received a diagnosis for their child?
It will completely change your world and challenge you as a parent, a mom, and a human being. I have never felt more emotions in my life. Truthfully, I do not think anyone steps on the ground, two feet on the floor, and says “oh, ok I am ready for this.” It takes a village and do not be scared to ask for help.
I have reconnected with people because I know that feeling of being alone like no one understands. There will be challenges, and it is ok if things do not work out the way they are meant to for the day.
I would just say to any parents going through this, during that diagnosis for the first time, I hear you, it does hurt, but these children can do more than anyone knows they can. My son is living proof; they work extremely hard to get stuff accomplished. So, I will wrap all that up by saying, you are not alone, utilize the resources, but also talk to close friends and family members because you also need to ensure that you are ok so that your family can be ok.
Any final thoughts or messages for The Autism Project?
I am grateful for The Autism Project; you have brought so many different people together. There is a group called Autism Plays, and they are heavily involved with what you do. I have formed a nice bond with them, and it is nice because we go to events where you can bring your children either neurodivergent or on the spectrum.
So, it has just opened a different world. There are a lot of people who underutilize resources out of fear or feeling judged, but I think that in a world where we are really trying to make sure no one is excluded is where we must come together. Just know that the help is there.
So, I just want to thank you for letting me share my story because I am forever grateful for The Autism Project; I always will be, and I know Nicholas and myself are lifers there, and I just appreciate every single person within your facility.
Thank you for taking the time to learn about the Berardinelli family and their experiences. I am eager to witness the growth of Nicolas and see the progress he makes in the future at The Autism Project.
Gianna Cambria
Marketing & Communication Officer