Resource Article

“The only things certain in life are death and taxes.” Benjamin Franklin

This article is about death. This is not a pleasant topic for anyone. This is not something that should not be avoided and carefully planned for anyone with children – especially children with special needs.

In the past year, five local autism families have had a parent die suddenly. Any death can rock a family but an unexpected death can shatter the world of a child with autism, as even a simple change can be difficult.

In our community, we joke that parents of Autism Spectrum Disorder (ASD) kids are never allowed to die. We must live as long, or longer, than our children with autism to safeguard them. But we have to be realistic, that wish is just not going to happen.

Consider this – if you were hit by a bus tomorrow, what would people need to know about your child to care for him? What scares him? What comforts him? Whoever is going to take care of your child in your absence is going to need some information so they don’t have to guess and get it wrong.

Special Needs Trusts and Wills

Ideally, you should find a good lawyer and write a will and set up a Special Needs Trust for your child. You can learn more about those here.

Since few of us have the means to fund a Special Needs Trust, we just ignore the whole thing, hiding under the covers, as it were. I am here to tell you that you cannot keep doing that. It’s irresponsible and unsafe. I am not saying that you must build expensive legal documents today, but there is much that you can do for free to prepare your family, just in case.

Things You Can Prepare for Free

• Social stories about death and funerals. Make sure they incorporate your religious and burial preferences. For instance, if you would want to be cremated, versus an open casket service, write the social story to fit what your child would expect from the ceremonies.
  • Some samples
    • http://www.polyxo.com/socialstories/ss0014.html
    • http://www.ccsd.edu/files/filesystem/Death.pdf
• Make a list of your child’s supplements and medications with dosages. Update this annually.
• Make a list of your child’s dietary restrictions, favorite products, recipes, etc. Include a copy of your IEP’s medical section (that discusses dietary needs) and any medical documents or scripts relating to dietary needs.
• Gather recent medical files into a binder, or better yet scan them to a disc.
• Make copies of current IEPs, progress reports and therapy notes and put them all in one binder, or better yet scan them to a disc.
• Make a list of your child’s likes and dislikes, things that calm him, scare him, music and toys he loves, favorite sports or activities like swimming.
• Write up a daily schedule as you would for a babysitter, or a relative who may watch the kids for a day or two if you had to go out of town. List what time your child normally wakes up, morning routine – potty, breakfast, brush teeth, get dressed, get on school bus, therapy appointments, etc. Update this annually.
• Write up a list of Doctors, therapists, teachers, playmate’s parents, babysitters, respite care providers, etc. Include names, email, phone and address. Update this annually.
• Next of kin – In some families, who can visit your child may be just as important as who cannot. You have to name names if you want your wishes followed. Decide, and write down, who can make decisions (medical, educational, lifestyle), who gets custody, etc. And give key relatives a copy of your “wishes list”. This would easily (and cheaply) be turned into a will when you have $100 to spare.
• If you don’t know anyone who could take your child in if you were suddenly gone, prepare a list of state services and agencies that should be contacted. If you have any feedback or wishes about certain facilities, note them in writing. You can start here – http://tacanow.org/family-resources/autism-on-public-assistance/
• If you have religion-based wishes that you want followed for your child’s upbringing, make sure you write it down.
• If you know someone who dies, make sure their family applies for a grant at AutismCares. Grants are usually only $1000 but in times of crisis, that may be better than nothing. http://www.autismcares.org
• Notify all providers, especially the insurance company and Medicaid/SSI of the parent’s death so services aren’t denied.

It would be awesome if we could all live forever (or maybe not) but since that’s not going to happen, a little preparation will go a long way to keeping your child healthy and safe. I know its melancholy to prepare these documents, but the alternative is to leave your child to the unknown. And that’s just plain scary.