At some point in my life I took the tedious steps to being a responsible parent, well, some of them anyway. First we got life insurance. Whenever I point out that my husband is worth way more dead than alive, I’m quick to mention that all of that money would be necessary to deal with the depths of my despair because I love him so dearly. I’d need all of my girlfriends with me for a good month on a tropical island with a spa handy, you know, in the name of grief. Then we wrote a will. Then we took the necessary step of creating a special needs trust for Aidan. This keeps his inheritance from looking like income, which would then negate the benefits he would receive from the state.
I thought we were done. Then I realized how much information I have in my head. My sister will be raising our boys in the case of Garreth and I both dying. She has certainly spent enough time with them both to know and love them well. However, there are just so many details to caring for Aidan. She’s smart enough to figure them out (after she gets back from grieving on a tropical island with both my and Garreth’s life insurance) but why reinvent the wheel? So I wrote them down in a Letter of Intent. I update it every year as Aidan is constantly changing. It starts with a very general philosophy that we would want her to implement:
Letter of Intent
It is our intent that Aidan be raised as a contributing part of your loving and fun family. While he requires additional physical and emotional energy and a greater level of advocacy, we want him to fully experience the joy of being a kid. The value of being included in family, school and life at large is worth risks that any other kid would face.
This reinforces 3 things we believe:
1.Aidan is a contributor, giver, full participant. They would be blessed to have him in their family as he’s not just a life-sucking force.
2.Sometimes he’s a life-sucking force that will drain and threaten to deplete them. He requires more, and my sister and her husband would need to learn a ton about balance and putting on their own oxygen masks first.
3.We’ve given them permission to take risks (though my sister hardly needs that as she’s an adventuresome extravert). I obviously trust them with his safety but wanted to caution them against playing it too safe. Aidan should live life fully, even if it means some bumps and bruises.
I go on to give details in the following categories because they’re pertinent to Aidan’s care:
Temperament; Communication; Eating; Clothing; Sleeping; Bathing; Toileting;
Seizures; Health; Wheelchair
I end with tons of contact information – doctors, special educators and therapists, friends in the field or who know him well.
So do you have anything like this for your child with special needs? Have I forgotten anything?
Shared at Women Living Well