I was so fortunate to have the opportunity to talk to Abbey Romeo and her mother Christine, both of whom were featured on the Netflix show Love on the Spectrum U.S. On this special episode, Abbey shares her journey of growing up autistic, discussing the challenges she has faced and how she has learned to navigate them. Christine offers her perspective as Abbey’s mother, detailing the support she has provided and the unique experiences they have encountered together. They explore the process of receiving Abbey's diagnosis, emphasizing what strategies have been beneficial and what have not. After you read this, you are going to want to head over to YouTube and watch the interview!
Early Signs and Challenges
Tara: Hi, Christine and Abbey! Thank you so much for being here. Christine, let’s start with you. When did you first notice that Abbey was developing differently?
Christine: The first sign was her sleep patterns. When Abbey was around 14-16 months old, she would wake up at 2 AM and be up for the day. It was incredibly draining. I remember thinking, “Her brain won't shut off.” Another sign was her tactile input-seeking behavior. At around 19 months, she started putting everything in her mouth—leaves, rocks, dirt. It was concerning.
When she started preschool at about two years and four months, they called and said she couldn’t stay because it was dangerous. I had already consulted the pediatrician, who dismissed it as typical development. But there were many other signs. For instance, at two months old, she would scream the entire time during our morning walks, unlike other babies who would nap peacefully. Looking back, I realize these were sensory issues.
Tara: That’s a common concern among parents. Many parents I work with mention sleep issues as a significant challenge.
Christine: Yes, I often thought it was a neurological difference. Even before I knew much, I felt that her brain was wired differently.
The Importance of Parental Involvement
Tara: It’s essential to trust parental instincts. What advice do you have for other parents?
Christine: Parents must be part of the team. You can’t just drop your child off for therapy and expect them to be “fixed.” I co-created every goal with her providers, from speech to adaptive life skills. Only I am with her the most, so my involvement was crucial.
Tara: That’s a great point. Parents know their children best and are invaluable in creating effective strategies.
Christine: Absolutely. It’s about observation, being a detective, and instinct.
Navigating Early Childhood Services
Tara: When Abbey started early childhood services, what was helpful and what wasn’t?
Christine: My heart goes out to parents with children moderately impacted by autism. Today, there are many types of autism, but 24 years ago, it wasn’t as understood. Social media shows many people with perfect language discussing their autism, but that’s not everyone’s experience. Abbey went to an autism school with classes based on skillset, which helped. But it was initially hard to find where she fit in.
When she was diagnosed, I was in denial for years, calling it developmental delay instead of autism. Today, young people embrace their diagnosis, but back then, it was shocking. Understanding the type of autism your child has is crucial for finding the right treatment.
Tara: It’s a broad spectrum, and strategies must be individualized.
Christine: Exactly. Knowing your child’s specific needs is vital for effective intervention.
The Role of Speech Therapy
Tara: Abbey, what helped you the most in your journey?
Abbey: Speech therapy, for sure. I had 20 years of speech therapy.
Christine: Pragmatic language was a significant challenge. Organizing language and telling stories were difficult for Abbey. Individual speech therapy was essential, and later, small group therapy with no more than three children was incredibly beneficial.
Tara: That’s important. Ensuring the right group size and matching skill levels can make a huge difference.
Christine: Yes, and it’s crucial to specify these details in the IEP.
Insights From Filming “Love On The Spectrum”
Tara: Abbey, can you share your experience from filming “Love on the Spectrum”?
Abbey: During the interview, I had trouble focusing because I needed to move around. Sitting still was hard for me.
Christine: When Abbey was allowed to move and be herself, she was a different person. This experience made me realize that many kids are forced into compliance in settings that don’t accommodate their needs. We need to recognize and support different learning styles.
Tara: Absolutely. Creating a move-and-learn environment can be very helpful.
Abbey: I always loved mermaids because they wanted to be human, like how I wanted to be neurotypical. When they became human, they couldn’t talk, which is how I felt.
Nurturing Social Skills and Confidence in Children With Autism
Tara: Over the last decade, I've co-taught with a phenomenal special education teacher who introduced turn-taking activities using simple toys for three-year-olds. These activities were not just for fun but were essential in laying the groundwork for conversation skills. We emphasize that conversation doesn't have to start with words; it can begin with simple actions that children find engaging. Christine, how do you break down tasks for Abbey?
Christine: I used visual templates, which helped her memorize and practice social interactions. For instance, Abbey, who faces challenges with social moments, finds clarity in creating do's and don'ts lists for various environments. These lists guide her behavior, ensuring she can confidently navigate social situations.
Tara: Abbey, do you feel like templates help you?
Abbey: Yes
Tara: Christine, can you give an example of how these templates are used?
Christine: Sure! For example, when Abbey attended the premiere of “The Little Mermaid,” we created a do's and don'ts list. It included tips like, “Don't go up to people and ask them random questions,” and “Do say, ‘Hi, my name is Abby. I'm excited to be here.'” This clear organizational piece helps her start on the right foot and be successful in various environments.
Visual Supports and Memory Aids
Tara: What other visual supports have helped Abbey over the years?
Christine: We used daily fill-ins to help with short-term memory. We had a notebook where Abbey would note three things about her day and one funny thing. Inspired by Temple Grandin’s analogy of a messy desktop, we developed tools to help Abbey organize her thoughts. Initially, we used fill-in-the-blank templates, but now she can recall information without them.
Tara: How has video modeling contributed to Abbey's learning?
Abbey: I've been using video modeling with shows like “Friends” and “The Big Bang Theory.” It helps me understand and discuss narratives and characters.
Christine: Video modeling serves as both a language comprehension exercise and a way to understand narratives and characters. Abbey can now come home from a movie and discuss it in detail, enhancing her conversational skills.
Tara: What role does role-playing play in Abbey's development?
Christine: We practice social exchanges and scenarios regularly, which boosts Abbey's confidence and reduces her anxiety. We also practice handling situations that don’t go as planned, fostering resilience and adaptability.
Overcoming Anxiety
Tara: How did you manage Abbey's anxiety during her early years?
Christine: Initially, Abbey's anxiety was paralyzing, making it difficult for her to engage in therapy without me. I closely watched one of the best speech therapists for a year and a half, which allowed me to learn and apply effective strategies. This hands-on experience was so valuable in Abbey’s progress.
Tara: What was the turning point in Abbey's education?
Christine: Transitioning to vocational education at the age of 14 was pivotal. Recognizing that traditional education was not suitable, we moved Abbey to a vocational program, which proved to be the best choice. Abbey thrived in this environment, learning practical skills like knitting, which she continues to enjoy today.
Life Skills for Autistic Children
Tara: Why do you emphasize life skills for children with autism?
Christine: Life after school relies heavily on life skills, which contribute to greater independence and self-sufficiency. Abbey's vocational training has equipped her with valuable skills and confidence, allowing her to participate meaningfully in various activities and work environments.
Tara: Can you explain the concept of the visual dictionary you created for Abbey?
Christine: The visual dictionary helped Abbey translate her memories and experiences into words, fostering better communication and emotional expression. It acknowledges the significance of memories and helps in re-framing them positively. For instance, Abbey associated childhood struggles with negative experiences, which we worked on re-framing through visual aids and language.
Tara: Abbey, what do you wish people knew about autism?
Abbey: I wish people knew that those who think differently, all the different types of autism, they need to understand it.
Tara: So you wish they'd learned more.
Abbey: Like I say for example, I didn't like being a child. I didn't wanna be a kid ever. So that's why I say I wanna be an adult woman right now. ‘Cause I always wanted to be an adult because I knew I'd have more language and be accepted. That's why I associate adult women as good and little girls as bad. Those who think differently. You've gotta be nice to those who think differently.
The Impact of Relationships
Tara: How has Abbey’s relationship with David impacted her?
Christine: Abbey's relationship with David, as featured on “Love on the Spectrum,” showcases her growth in social confidence and independence. Their shared activities, like visiting the LA Zoo and Universal Studios, demonstrate how supportive relationships can enhance the quality of life for individuals with autism.
Tara: What are your hopes for Abbey’s future?
Christine: Like any parent, I think about Abbey's future, especially what will happen when I’m no longer around. We’ve been working on building her independence and confidence in various settings. Abbey now has a roommate, participates in sleepovers, and continues to develop her vocational skills.
Tara: Abbey, can you tell us about the hats you make?
Abbey: I learned how to knit in a vocational job training program, and I really enjoy it. It all started when I was in a vocational job training program at Miller CTC. Knitting has become a significant part of my life and something I’m very passionate about.
Watch the interview here:
Listen to the podcast here Episode 71
You can find Abbey here:
Website: https://madebyabbey.com/
Instagram: https://www.instagram.com/hatsbyabbey/?hl=en
TikTok: https://www.tiktok.com/@hatsbyabbey?is_from_webapp=1&sender_device=pc
YouTube: http://www.youtube.com/@AbbeyRomeo
Love On The Spectrum (Netflix): https://www.netflix.com/title/81338328
If you use visual supports in your classroom or home, you are going to want to sign up for this free Visual Supports Starter Set ASAP! Click here to have one sent to your inbox. Also, be sure to read more about visual supports and how they can help autistic children here.
0 Comments