What Happens When or If? Embracing Autism and Planning for the Future

What Happens When or If?

By now, you all know that I am Anja, and I am the mother of Cortland. Cortland was diagnosed with autism at age 3, a day that changed both his life and mine forever. You never want to admit that before your child is even born, you have thoughts of "what if" or "when something happens to me, what happens to my child?" These are questions that plagued me early on in my pregnancy because it was high-risk—I was 40 when I had this beautiful little boy. I suffered a hemorrhage at 7 weeks, which I thought was a second miscarriage, having just suffered one in April of the same year. The icing on the cake was that Dad decided this was no longer for him, so I was left on this island to do it alone!

Fast forward, we defied the challenges, obstacles, and trials and tribulations early on. You would have thought life would just be smooth sailing after that, planning for those times in life where you became that soccer mom you always dreamed of. But then I heard God say, "Not so fast, that's not the plan I have for your life!" You all know the scripture Jeremiah 29:11: "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." But the plan or journey we were dealt—I couldn't quite see how it was designed to prosper and give me hope, or better yet, give my child a future. But I didn't and I will never question it.

On the day Cort was diagnosed, those same haunting thoughts resurfaced, and boy, did they come in like a wrecking ball! What happens to my child if something were to happen to me? Who is trusted enough to leave the responsibility to? Ideally, it would be my mom, but as she gets up in age, is that fair to her?

These are questions that I'm sure many parents of autistic children grapple with. The fear of leaving our special needs children behind is real and overwhelming. But instead of letting that fear paralyze us, we must use it as motivation to plan and prepare.

Facing Our Fears

The first step in planning for our autistic children's futures is acknowledging our fears. It's okay to be scared. It's okay to worry. These emotions show how deeply we care and how committed we are to our children's wellbeing. Some common fears include:

1. Who will provide daily care and support?

2. How will my child's financial needs be met?

3. Will they receive the proper medical attention and therapy?

4. Who will advocate for them when I'm no longer able to?

5. Will they be loved and understood by their caregivers?

Making Difficult Decisions

Once we've faced our fears, it's time to make some tough decisions. This process can be emotionally draining, but it's crucial for our peace of mind and our children's future security.

1. **Choosing a Guardian**

This is perhaps the most challenging decision. We must consider not only who loves our child, but who has the capacity to provide the specialized care they need. It might be a family member, a close friend, or even a professional caregiver.

2. **Financial Planning**

Setting up a special needs trust can ensure that your child's financial needs are met without jeopardizing their eligibility for government benefits. Consult with a financial advisor who specializes in special needs planning.

3. **Legal Arrangements**

Consider establishing guardianship or conservatorship for your adult autistic child if they're unable to make decisions independently.

4. **Creating a Care Plan**

Document your child's routines, preferences, medical needs, and other important information. This will be invaluable for future caregivers.

5. **Building a Support Network**

Identify and cultivate relationships with people who can be part of your child's support system in your absence.

Embracing Hope

While planning for the future can be daunting, it's also an opportunity to embrace hope. By taking these steps, we're not dwelling on worst-case scenarios – we're empowering ourselves and our children. We're ensuring that the love, care, and support we provide will continue even when we're no longer here.

Remember, our autistic children are capable of remarkable things. By planning for their futures, we're giving them the foundation they need to thrive, grow, and surprise us with their achievements.

As I watch Cortland grow and develop, I'm filled with an overwhelming sense of pride and hope. Yes, our journey is different from what I initially imagined, but it's beautiful in its own unique way. And by facing my fears and planning for his future, I'm making sure that beauty and potential will always have the chance to bloom.

To all the parents out there grappling with these same fears and questions – you're not alone. Together, we can face the future with courage, love, and unwavering support for our amazing autistic children.