Ten Years, 250 Families and a Lifetime of Lessons

By Mendy Minjarez, PhD, director, Applied Behavior Analysis Early Intervention Program and licensed clinical psychologist; and Jaimie Sigesmund, MAT, family advocate/case manager, Applied Behavior Analysis Early Intervention Program

The Applied Behavior Analysis (ABA) Early Intervention Program at Seattle Children’s Autism Center is unique for many reasons. Not only is it one of the first treatment programs of this type in Washington state but it sets the standard for providing multiple layers of support to families with children who have autism spectrum disorder — particularly those who may have limited access to care or who face long wait times for therapeutic services.

After 10 years, we’ve created countless memories, shared heartwarming stories and learned invaluable lessons from the nearly 250 patients and families who have walked through our doors.

The ABA Early Intervention Program is a short-term, intensive day treatment program that offers behavior therapy to children with autism under 6 years old who are covered by Medicaid. Children attend the program three hours per day, four days per week for 12 weeks — providing our staff with ample opportunities to connect with families and learn about their unique journeys. To this day, we stay in touch with some of our first families who continue to reach out with photos, updates and successes, as well as for guidance.

Our program is composed of a multidisciplinary team with expertise in various areas, including:

• A clinical psychologist
• Board-certified behavior analysts
• Behavior technicians
• A speech and language pathologist
• A family advocate/case manager

Mendy developed the program at Seattle Children's and played a key role in replicating it across the state. Since the program opened in 2015, it has been replicated over 50 times statewide. In addition to her leadership role, Mendy continues to provide direct clinical care in the program, such as patient intakes; clinical supervision of behavior therapists; direct work with patients; and family education meetings to help them better understand autism. Once families discharge from the program, Mendy often follows them clinically.

Jaimie has a master’s degree in teaching, focusing on early childhood education and emotional and behavioral disorders. She has been part of the program since its inception. In her role, Jaimie meets with families regularly to help them navigate clinical recommendations; manage school-related issues; coordinate outside therapies; address family support needs; and connect them with community resources.

There are so many key moments and stories that we look back on with a smile, especially when thinking of the families who have been a part of our program. It’s an honor to have been part of their journey, even if only for a moment in time.

For many families, we are often one of the first therapeutic interventions their child receives. Receiving an autism diagnosis can be overwhelming, and many children are newly diagnosed when they start our program. Families have much to navigate in learning about autism, accessing services and following recommendations, so it’s important for us to meet them where they are in their journey.

By regularly meeting with families, learning about their hopes and dreams for their child and offering support, we foster a deep, trusting relationship. One thing is certain: We’ve learned many valuable lessons over the past 10 years.

Lesson 1: Hold on to Hope

We often tell families that we consider them part of our Autism Center family. It truly feels that way. We get an inside look into their lives by learning about their biggest struggles as well as their hopes and dreams. Through these conversations, we’ve come to realize just how crucial hope is. Families have told us again and again how much our consistent focus on maintaining hope means to them.

With all the unknowns that come with an autism diagnosis, holding on to hope can be the one thing that turns a negative into a positive or gives a family the strength they need to keep advocating for their child. There’s often fear about what the future holds or concerns about the challenging path their child may have in a sometimes unsupportive society, but our families are resilient.

Lesson 2: Celebrate Small Successes

Over the past ten years, we’ve heard countless stories from families about their children being excluded from activities, facing judgment in public during difficult moments or being told that their child won’t be able to do certain things. Throughout our program, parents and family members participate in training sessions where they learn alongside their child and therapist. This is a crucial opportunity to not only show families the progress being made but also to celebrate milestones that are often taken for granted, such as pointing to request something or making eye contact.

Progress can be challenging and learning to navigate new and unfamiliar tasks takes hard work. We want to help children in our program feel proud, and we want families to share in the joy of their child’s learning and achievements.

Lesson 3: Teach Families How to “Fish”

Partnering with families is essential to the work we do. While families often tell us we are the experts, we truly believe they are experts in what their child needs. Through training, treatment participation and support, we focus on instilling a sense of confidence and empowerment in families. If we can provide families with the tools and guidance they need to understand autism, navigate service systems, attend special education meetings, ask for help and more, we’ve made great strides.

Empowering families to do this on their own — rather than doing it for them — is even more powerful. Not only does this build confidence, but it also sets families up for lifelong learning, advocacy and trusting they can handle challenges on their own. This is what we call “teaching people how to fish.” While we can do it for them, learning how to do it themselves will lead to greater success and a sense of accomplishment.

Lesson 4: Community Matters

In addition to feeling like a family, our program also fosters a strong sense of community. Families form friendships while waiting in the lobby during treatment or attending classes and groups. These relationships often become a lifeline for families who may feel isolated or overwhelmed. Knowing that someone else is walking in their shoes or understands their struggles, as well as their small or unique successes, can bring comfort and a sense of hope.

Building this network of families who lean on each other has made a tremendous difference for many of our families. Hearing their stories about coffee dates, park meet-ups or attending the same therapy program is heartwarming and reassures us that families have a supportive community they can turn to.

Lesson 5: The ABA Early Intervention Program Makes a Difference

Throughout the past decade, we’ve witnessed and learned so much from the more than 250 patients and their families who have accessed our program. Through it all, we are often reminded of the benefits a short-term program can have for a family.

We've seen shy or disempowered families come into their own, eventually volunteering or working with community organizations to support other families on their autism journeys. Many families have become strong advocates for the autism community and for Seattle Children’s, while others have taken on the role of mentors for new families in our program. Friendships have formed. Bonds have been built. Children have found their voices and thrived. We are truly privileged to play a small role at the beginning of their journeys.

We feel so honored to be a part of this community of families and children who have shown us what the power of love, hope and determination can do.