What Next?!? Navigating my child's autism journey

 

What Next?!? Navigating my child's autism journey

In a previous blog post, I shared our family's journey from Cortland's autism diagnosis to acceptance. Today, I want to talk about what comes next. As a mom in South Carolina with a 10-year-old son on the autism spectrum, I've learned that this journey is ongoing, full of new challenges and triumphs.

When my son Cortland was diagnosed with autism at the age of 3, my world shifted. I found myself asking, "What next?" over and over. Now, seven years into this journey, I want to share some insights that might help other parents facing a similar path, especially here in South Carolina.

The Initial Shock

That diagnosis day is etched in my memory. Autism? A word that would become a central part of our lives. As I held my little boy's hand, leaving the doctor's office, I felt a whirlwind of emotions – fear, confusion, and an overwhelming sense of "What do we do now?"

In those early days, I felt lost. But I quickly learned that there were resources available to help us navigate this new world.

Early Intervention is Key

If there's one piece of advice I can shout from the rooftops, it's this: Start early intervention as soon as possible. Here in South Carolina, we're fortunate to have programs like BabyNet for children under 3 and Child Find for school-age kids. These services were lifelines for us, providing speech therapy, occupational therapy, and behavioral support.

The Department of Disabilities and Special Needs (DDSN) in South Carolina was also instrumental in the connection to early intervention services. They helped us understand what services Cortland was eligible for and how to access them.

Educate Yourself

I quickly learned that knowledge is power. I dove into research, joined support groups, and attended workshops. Understanding autism and the various therapies available helped me become a better advocate for Cortland.

The South Carolina Autism Society became an invaluable resource. They offer a wealth of information, from understanding the diagnosis to navigating school systems. Their workshops and conferences connected us with experts in the field and other families on similar journeys.

Another organization that proved to be a goldmine of information was Family Connection of South Carolina. As our state's Parent Training and Information Center, they offer free services to families of children with disabilities or special healthcare needs. Their parent-to-parent support model was incredibly comforting – talking to other parents who've "been there" made me feel less alone. Also, their workshops and conferences connected us with experts in the field and other families on similar journeys.

Building Your Team

Finding the right professionals to support Cortland was crucial. We've been fortunate to work with dedicated therapists, understanding teachers, a pediatrician within a practice that houses a Special Needs Care Coordinator, and another pediatrician who specializes in developmental disorders. Don't be afraid to switch if someone isn't the right fit – you know your child best. Our core team is dynamic and strong and they advocate for Cortland just as hard as I do, our voices are definitely heard at all times. 

Our Educational Journey

When it came time for Cortland to start his formal education, we explored various options to find the best fit for his needs. We enrolled him in South Carolina Connections Academy, an online public school program, which began our journey through different educational support plans.

Evolving Support at SC Connections Academy

1. 504 Plan: Initially, Cortland had a 504 plan at SC Connections Academy. This plan provided accommodations to ensure he had equal access to learning opportunities within the general education curriculum.

2. IEP (Individualized Education Program): As we better understood Cortland's needs, his plan evolved into an IEP. This more comprehensive plan included specialized instruction and related services tailored to his specific learning requirements.

Transition to Option 3 Homeschooling

As Cortland grew and his needs evolved, we made the decision to transition to Option 3 homeschooling. This choice allowed us to further tailor his learning environment to his specific needs and learning style. 

3. ISP (Individualized Service Plan): When we moved to Option 3 homeschooling, SC Connections Academy helped facilitate the creation of an ISP for Cortland. Unlike an IEP used in traditional school settings, an ISP allows homeschooled students to access certain services if needed. This was a crucial step in ensuring Cortland had access to additional support while benefiting from the flexibility of homeschooling.

The process of setting up each of these plans - from 504 to IEP to ISP - was both challenging and enlightening. Each step required us to clearly articulate Cortland's needs and goals, and to understand what services were available to students with autism in different educational settings. The staff at SC Connections Academy were instrumental in guiding us through these transitions, helping us understand our options and Cortland's rights at each stage.

Embracing Homeschooling

Our current homeschooling approach has come with its unique set of challenges and rewards. It's allowed us to:

1. Tailor the learning environment to minimize sensory overload

2. Adjust the pace of learning to match Cortland's needs

3. Incorporate his special interests into lessons to increase engagement

4. Provide immediate positive reinforcement

5. Flexibly schedule therapy sessions without disrupting school

While homeschooling has been the right choice for us, I've learned that every family's journey is different. Whether you choose traditional schooling, online programs, homeschooling, or a hybrid approach, the key is to advocate for your child's needs and to stay informed about the resources and services available.

Our experience with SC Connections Academy and their support in creating and adapting Cortland's educational plans - from 504 to IEP to ISP - was invaluable. It prepared us for the journey of homeschooling and gave us a strong foundation in understanding and advocating for Cortland's educational needs.

Embracing the Journey

There have been challenges, no doubt. But there have also been incredible moments of joy and progress. Watching Cortland master a new skill, hearing him say "I love you" for the first time, seeing him make a friend at school – these moments are priceless.

I've learned to celebrate every victory, no matter how small it might seem to others. Cortland's progress is on his own timeline, and that's perfectly okay.

To Parents Just Starting Out

If you're at the beginning of this journey, take a deep breath. It's okay to feel overwhelmed. Remember:

1. You're not alone. Reach out to support groups and other parents. Organizations like Family Connection of SC can connect you with other families.

2. Take it one day at a time. Small progress is still progress.

3. Celebrate the victories, no matter how small they might seem to others.

4. Take care of yourself too. You can't pour from an empty cup.

5. Utilize the resources available in South Carolina. The SC Autism Society, DDSN, and Family Connection of SC are there to help you.

Looking Ahead

As Cortland approaches his teenage years, we face new challenges and opportunities. But I'm no longer asking "What next?" with fear. Instead, I'm excited to see what the future holds for my amazing, unique, and loving son.

We're starting to think about transition planning – considering what Cortland's life might look like after high school. The South Carolina Autism Society offers great resources on transition planning that we've found helpful. Some may say it’s  early, but I say you can never start to early! Being proactive has worked so we’ll continue preparing and planning for what’s next! 

Remember, every child with autism is different. What works for us might not work for everyone. But know this: with love, support, and the right resources, your child can thrive. The journey might not be what you expected, but it can be beautiful in its own way.

To my fellow South Carolina parents on this autism journey: we're in this together. Reach out, connect, and never be afraid to ask for help. Our community is strong, supportive, and here for you.