Why We Struggle to Put Ourselves First
I love the water. The ocean waves and quiet fishing on the bay. My wife and I moved our family from a larger city to a smaller beach town when our two boys were still in elementary school. We wanted a place where everyone is a neighbor, where people lend a helping hand.
Both our boys, now teenagers, have been diagnosed with Autism Spectrum Disorder. They have sound sensitivities and food selectivity. Our oldest has language but struggles to use it socially. Our youngest is quieter but can request what he needs.
My wife, Crissie, and I hear often about the high divorce rate among parents who care for children with special needs. We’re doing well, but it’s not easy. The demands—physical and emotional—are relentless. Finding time for ourselves or our marriage sometimes feels impossible.
What Crissie and I slowly realized was something I know resonates with many families in our situation: we rarely put ourselves first.
The Fishing Story
I would love to take my boys fishing. They don’t like it—too slow, too many stops. They get frustrated. So what do I do? No fishing for dad.
Their diagnosis creeps into my mind. All their struggles. All their defeats. And I cave: “Just give them this. They go through so much.” What we didn’t realize was that we were no longer in charge at all.
We always put our boys first. Before friends, hobbies, or each other. It was an unspoken agreement. And slowly, it began to chip away at us—physically and emotionally.
Until one day, Crissie and I had to ask ourselves an important question: “Who is driving this boat, anyway?”
The Airplane Safety Drill
We all know the airplane safety rule: put your own oxygen mask on first. Why? Because if you pass out, you can’t help anyone. It makes perfect sense. Yet parents often struggle to live by it.
The bottom line is simple: you can’t take care of your children if you don’t take care of yourself.
Meet Sean and Alaina
Enough about my story. Let me tell you about another family.
Sean, 33, and Alaina, 30, are the kind of couple you want to hang out with. They love to talk about art and culture and always have an interesting story. They met in their twenties, married, and had Patrick, now five years old.
Both worked demanding jobs—Sean in pharmaceuticals, Alaina as a paralegal. They planned to work after Patrick was born, but Patrick needed extra care. He was diagnosed with Autism Spectrum Disorder and Sensory Processing Disorder at age two (though Alaina’s gut told her earlier).
Sean’s income allowed Alaina to stay home. But their days were consumed with therapy appointments, medication refills, research, and household management. They moved to a larger home in the suburbs, closer to Patrick’s therapies.
The Worry That Keeps You Awake
They were getting by but flustered. Most of all, they worried about Patrick—constantly. Like so many families in the early days of a diagnosis, they were on autopilot. Numb. Just surviving.
Sean and Alaina didn’t think they had time or energy to plan beyond tomorrow. Their own plans—enjoying life now, planning for retirement—had been put on hold. Patrick came first. Everything else could wait.
They were not driving the boat. They were simply existing day by day, hoping for the best. This was when they decided to call me.
Budgeting: Finding Control and Balance
Like many families with special needs, Sean and Alaina didn’t know where to start. They knew they needed a plan, but the path from A to B was unclear.
We began by identifying their most immediate stress: their finances. Alaina felt she’d lost control. Working part-time at home, she feared overspending. Sean, meanwhile, was spending without restraint—new golf clubs, eating out—using purchases to manage stress.
Both agreed they needed a budget. Alaina wanted relief from her self-imposed shoestring. Sean wanted awareness of his spending. We looked at what was coming in and going out.
I wanted to make sure necessities were covered—and they should also have a quality life. What were their values? What mattered to them?
Patrick qualified for a Medicaid waiver, which covered most of his health expenses. His therapies were tougher to cover and needed budgeting consideration. We also set up 401(k) contributions for Sean and a Roth IRA for them both.
Reclaiming Joy
After the numbers, they were happy. There was money left over for leisure.
For Alaina, this was a relief. She hadn’t assessed what they could spend on extras, so she simply didn’t. With the leftover budget, she signed up for a bi-weekly massage and hired a babysitter once a week for lunch or exercise.
Sean could still play golf and enjoy good food. We set them up with a budgeting app that made it a game between them—easy, fun, and sustainable.
Insurance and Trust Planning
Sean and Alaina didn’t have enough life insurance. Sean had only a bare-minimum work policy. Being young and healthy, they assumed life insurance was unnecessary. But we needed to discuss what would happen to Patrick if they passed.
This is where the conversation got emotional. They both agreed: this is what kept them awake at night.
Many parents of children with special needs use a Special Needs Trust (SNT) to plan for their child’s future. For Sean and Alaina, the SNT was perfect. It allowed them to leave money for Patrick’s care without disqualifying him from government benefits. Trust funds don’t count toward the asset limits for SSI/SSDI. Understanding how trusts and ABLE accounts work together also gave them additional options for managing his long-term expenses.
Since they had limited funds to place in the trust initially, we discussed using life insurance to fund it. Upon their passing, the insurance proceeds would flow directly to Patrick’s SNT for his care.
Retirement Planning With Patrick in Mind
Retirement was another source of worry. Both had 401(k)s, though not always maxed out. They felt they didn’t have enough for the retirement they wanted—especially when factoring in Patrick’s ongoing care.
They assumed Patrick would live with them as an adult. Maintaining his care after their earned income stopped would require additional savings. What they didn’t know was that Patrick could use SNT funds for his own care during their lifetime.
Also, Patrick could receive SSDI child benefits upon their retirement, since he was diagnosed before age 22.
We ran the numbers. They could save enough for retirement and maintain their current quality of life. Relief.
The Life Plan: More Than Money
When working with families who have a member with special needs, a financial plan alone isn’t enough. You need a life plan.
When Sean and Alaina drafted their will, they had to decide who would care for Patrick if something happened to them. They had a loose verbal agreement with Alaina’s sister, Karen. But Karen wasn’t comfortable managing Patrick’s finances.
We needed someone willing and able to handle both the finances and logistics of Patrick’s care. They’re inseparable.
The Letter of Intent and the Age 18 Transition
We discussed creating a Letter of Intent (LOI), a comprehensive guide to Patrick’s daily needs—the foods he eats, his hobbies, his routines. We also began preparing for what happens when your special needs child turns 18, when legal decision-making authority shifts and new planning decisions emerge. When something happens to either parent, the LOI becomes the roadmap for his care.
We used SpecialVest, an online tool for organizing and sharing the LOI. This gave Sean and Alaina enormous relief. They realized how much information someone would need to care for Patrick properly. The LOI became the anchor for all important documents—insurance policies, trust documents, everything.
Finding Peace and Control
Sean and Alaina wanted what many parents of children with special needs want: peace and a sense of control.
They are wonderful, loving parents to Patrick. But they were tired of feeling like they weren’t steering their own lives. Patrick was driving the boat. Every bit of energy and focus revolved around him, and they’d lost control of their own future.
Creating a comprehensive plan changed that. It allowed them to build a full, enjoyable life for themselves and Patrick. Now they’re thinking about their quality of life and their retirement. In turn, that calm and focus lets them plan better for Patrick’s needs.
The Takeaway
As for my boys and I, I’ve learned that my happiness is their happiness. We can’t take care of those we love if we don’t take care of ourselves. When I’m taking care of myself, I keep my tank full—ready for my boys and my wife.
So we go fast. And we fish. We take care of each other. That’s where the magic happens.
For a deeper dive into special needs planning frameworks, see our comprehensive special needs financial planning guide.
If you’d like to talk about planning for your family, start a conversation with us.
Names were changed for anonymity.
