What will happen to your child with special needs if something happens to you?

I was about 5 months pregnant when one of my favorite cousins called me up and said he was in town, could he take me to lunch. We didn’t spend a lot of time with my dad’s side of the family when I was growing up so I hadn’t gotten to hang with Jason very much at all – but the times that we had spent together were full of laughs so I was excited to have some one on one time with him. We set a date at a popular lunch spot in Lewiston, Idaho…Zany Graze.

He arrived before me and was already sitting down at a table when I got there. We started with some small talk and delved right into family gossip and when that was out of the way, I soon learned the true reason my cousin had asked me to lunch. He wanted to sell me some life insurance.

I was 35 years old and had no husband and no children. I wasn’t counting the one on the way because he hadn’t arrived yet and to be honest, I was having a hard time connecting to the whole feeling of being a mother and having to worry about what would happen to this unborn child if something were to happen to me. Jason didn’t have any kids – but he was engaged to a woman who had one and he explained how he was very attached to her and tried to explain the feeling to me. I wasn’t buying it – and I didn’t buy any insurance that day. He probably felt like I was cold and was going to be a horrible mom to my kid. I’m sure a lot of people thought that – let’s just say I wasn’t one of those giddy pregnant women with a framed ultrasound pic in my purse.

My son was born a few months later and because he had arrived by C-section, we had to stay in the hospital for a couple nights. The nurses gave me the option of keeping him in the room with me OR leaving him in the nursery. I found out within hours of his birth that I did in fact have the mother gene. He didn’t just sleep in the room. He slept snuggled up next to me – not for his sake, but for mine. It felt weird to be that close to a person for 9 months and then have him physically removed. Don’t get me wrong – I was ready to get him out of there – as any (sane) full term mother will admit!

Phoenix was born in November. The following August, he was diagnosed with cerebral palsy. His father and I had closed on a house that same month and were starting our life together as a family. The timing was finally right to get life insurance. I placed a call to Jason. Apparently, he had burned out on selling life insurance (imagine that!) and was no longer in the business. But he did refer me to a former colleague at Northwestern Mutual and I set up an appointment to meet with him. I purchased a $100,000 Whole Life policy and a $200,000 term policy on myself. How we came up with the numbers was I figured how much it would be to pay off the house. I wanted Phoenix to be able to grow up there with me or his father if something happened to one of us.

So at the same time I bought a policy on myself, I also purchased a $300,000 term policy on his father, who I was not married to – but because we were on the deed together and because we had a child together, it was allowed. When purchasing life insurance, the “insurable interest” doctrine states that the owner of a policy must demonstrate that he or she is dependent in some way on the person whose life is being insured. Here is a little tidbit for those of you single mothers out there who might be unsure about the future of your relationship with the child’s father. Buy an insurance policy on the father while you are still together. And here is the most important part: make yourself the owner and the sole beneficiary of the policy. Did this cause friction in my household? Yes. Did my baby daddy think I was being shady? Probably. But guess what? We aren’t together anymore and I still own that policy – which means that he cannot change the beneficiaries. He can’t designate that the proceeds of the policy be split between his four children. If something happens to him, ALL of the proceeds will go to Phoenix.

My son is four now and for those of you who have a child with special needs, you know that as they grow out of the toddler stage in become a young child, the extent of their disability becomes more apparent. You can finally get a feel of whether they will walk, talk and even whether they will someday be able to live on their own. My son is going to need special accommodations all of his life. I still have hopes that he will be able to live independently and take care of himself. But I have grave concerns about what would happen to him if I were to die before he graduates from high school.

If you have similar concerns it is TIME TO PREPARE A WILL. A morbid task, yes. But I actually had fun doing it because it forced me to sit down and dream big for my child. What if your child had tons of money – what could they do with it? Where could they go? What could they buy that would bring them joy? Where would you want them to go to school? What special equipment could they get that you haven’t been able to buy because of cost? After you have brainstormed about all of this, then you will know how much more insurance you might need to buy. I now have almost $1 Million in life insurance and I bought it before I was 40 while I was still healthy so the premiums would be set. Obviously, you don’t want to buy more than you can afford. But each month when I pay the $105 premiums, I feel good about it. I’ve got a back up plan in place that doesn’t suck!

Here are a couple of things that I incorporated into my will and special needs trust:

1. My son’s father lives in Washington. If something were to happen to me before Phoenix turns 18 and he wishes to stay in Arizona to finish out school with his friends, I have language in the will providing for a family member or friend to come to Arizona to care for him and have their rent and expenses paid to allow that to happen. That includes dad. If dad wants to move to Arizona, I’ve provided for it.

2. I have language providing for the purchase of a car, adapted as necessary, for my son to own and drive when he turns 16.

3. I have named people in the will who I want to be on his “team” of caregivers and advisors – who will research new treatments and therapies to be paid for by the trust.

4. I have suggested that my son take a trip around Europe or around the world after he graduates from high school. The language directs the trustee to pay for him and 3 of his closest friends to take this dream trip.

5. College is paid for – wherever he wants to go. If that ends up being a trade school, fine. If he wants to go to film school, great. If he wants to learn how to basket weave, that’s fine too. I want him to follow his heart and I have encouraged this in writing!

6. I have set up the disbursement schedule for every 10 years or so beginning at age 30. I have peppered the will with my dreams for him, including buying a house, traveling, etc.

Despite the fact that I am a paralegal and consider myself a resourceful researcher on the internet, I still hired an attorney to prepare my will and special needs trust. It gets tricky when state resources and social security are involved and I didn’t want his benefits to be taken away from him because he inherited a bunch of money.

It doesn’t take a girl scout to know that it is better to be safe than sorry and we should all hope for the best but prepare for the worst. I am without a doubt my son’s biggest fan, his biggest advocate, his friend, his entertainer and of course his mom. No amount of money will bring me back if I were to die. But my hope is that my dreams for him can survive my death and keep his mind open to a world of possibilities and a life without limits.