Special Needs Require Special Planning: My Son’s Story

With so much of our content focused on retirement, market updates, and our current political climate, I’m throwing you a curve ball. Today, I’d like to tell you a story.

November is Epilepsy Awareness Month, and my son, Parker, has epilepsy. Which is interesting to say, because he no longer has seizures. Don’t worry, I’ll come back to that. I learned very early on that if a person has one seizure, they are not considered to be epileptic; however, as soon as that person has two seizures, the official diagnosis immediately becomes epilepsy and will be so for the rest of their lives.

Recently, I completed the required studies and testing to attain a designation called the ChSNC®, or Chartered Special Needs Consultant. The ChSNC® is the only designation that’s designed to help prepare financial advisors to help the millions of families caring for those with special needs. As a financial advisor here at Savant, I am making it my mission to help as many families as possible to better navigate the immensely complicated financial aspects of caring for those with unique needs.

Here’s why.

It’s January 2016. Parker was born normally; in fact, the entire pregnancy went without so much as a single concern. By three weeks, he was already smiling! And the next five months flew by.

But then, we started to notice something. Parker would be sitting in his highchair getting ready to eat, and out of nowhere, his arm would raise in the air; he’d look up, but his head would tilt down. And a second or two later, it’s over. Initially, we thought nothing of it. But it kept happening. We took a video and sent it to our pediatrician who quickly got us an appointment with a neurologist at Lurie Children’s Hospital’s outpatient center in Northbrook, IL, heading into the 4th of July weekend, 2016.

And that’s the day that changed our lives forever.

We were told to immediately head to the main hospital in downtown Chicago. I said to the neurologist, “But it’s 4th of July weekend. Can’t we just go on Monday?” Her answer: “No, you really should go today.”

Today. When I heard her say today, that, for me, was the exact moment where it sunk in, where I began to comprehend the significance of the situation in which we found ourselves.

The seizures Parker had were not the typical grand mal seizures most people think of when they hear “epilepsy.” His seizures were called infantile spasms. Only one in about 2,000 children experience it. The worst part is the “infantile” aspect, meaning it hits you hard at a point when your brain is at its most precious state — when you’re an infant. We were soon able to stop the spasms, but they quickly morphed into other types of seizures. No medications or treatments worked to stop them. After over a year of steroids and various medications, testing, EEGs, and sleepless nights, Parker was lucky enough to be given a window out of the nightmare that is epilepsy: He was eligible for brain surgery. That might sound odd to you, that Parker was lucky to be eligible. The truth is, many people dealing with epilepsy are not so lucky, forced to endure these debilitating seizures for the rest of their lives. When the doctor told us Parker was a candidate for surgery, our immediate answer was, “How soon can we book it?” And so, Parker had his brain surgery at a year and 10 months.

Today, Parker is six years old, completely seizure-free, off all seizure medications, and his hair completely covers the surgical scar on his head. He is, quite literally, a walking miracle. If you met him, you would have no idea that he’s endured what he has. He is the happiest kid I’ve ever met, he loves trains and marble runs, and his true obsession is those enormous buckets at water parks that dump huge amounts of water on you. He spends time every day watching YouTube videos of them over and over. Parker has autism, although very high functioning, spends a significant amount of time in various therapies, and has numerous other needs that will likely continue for many years, possibly the rest of his life.

Parker is why I do what I do.

Having a child with special needs means we, as parents, need to do more financial planning than most. Therapies and doctor visits get very expensive very quickly. I’ve reached my out-of-pocket maximum (not deductible) every year since 2016 and will continue to do so for the foreseeable future. Issues with healthcare, disability law, special education, and receiving all available tax deductions can be daunting.

Do you need a special needs trust? Which kind? What’s an ABLE account? Who will take care of your child with special needs if you pass away? Will your child go to college? Will your child be able to live independently? What is their life going to cost? How can you even know what it will cost if you have no idea what they will or will not be capable of in five, 10 or 20 years?

But then you realize that you’ve done so much planning for your child that you’ve completely forgotten about your own retirement. I see this all the time. In fact, I had a conversation just this morning with a family who said exactly that.

Here are Savant’s 10 Key Planning Areas.

I’m sure you run into issues with some of these areas yourself. When raising a child with special needs, it’s almost like you need to plan for most of these areas twice! Our financial world is complicated enough; adding in planning for someone with unique needs can make it so overwhelming that you freeze, not knowing where to begin.

If you or someone you know is trying to navigate this complex financial world while caring for a family member with special needs, know that you’re not alone. Millions of families are going through this across the country and around the world. The first step is to realize that help is available. I believe meeting with a financial advisor to discuss these topics can be a great first step. An advisor’s goal is to help you build out a checklist and prioritize what’s most important to help you stay on track. Sound financial planning is designed to help give you peace of mind, knowing that you’re thinking about the full picture of your dreams and goals. It can also help you find a balance between your own needs and the needs of your child. If Parker can go through what he went through and be the boy he is today, let that put things in perspective. As overwhelmed as you may feel, it could be worse. Begin with one planning item at a time, work your way through it, and move on to the next one. Often, little wins and checking something off your to-do list can be all it takes to feel better about the progress you’re making.

Thank you for reading my story.

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Savant Wealth Management (“Savant”) is an SEC registered investment adviser headquartered in Rockford, Illinois. You should not assume that any discussion or information contained in this document serves as the receipt of, or as a substitute for, personalized investment advice from Savant. The scope of the services to be provided depends upon the needs of the client and the terms of the engagement.

Certified Financial Planner Board of Standards Inc. (CFP Board) owns the certification marks CFP® and CERTIFIED FINANCIAL PLANNER™ in the U.S., which it authorizes use of by individuals who successfully complete CFP Board’s initial and ongoing certification requirements.