Whenever I get sick, I start wondering what would happen to my children if I were to get really, really sick. I can get myself so worked up over those thoughts that soon I am wondering what color urn they will pick out for my ashes and who will care for Ashley. Even though I say this in a lighthearted manner, my thoughts are anything but lighthearted.
I’ve been to seminars proclaiming the value of special need trust funds. I’ve seen the dire warnings about children with severe disabilities not having enough money (translation – only SSI money) to live out their lives. While those things are very real concerns of mine, the things I obsess over are smaller.
For instance, who will know that the best way to get Ashley to brush her teeth is to count to 2, ask her what comes next, and then she will sign 3 and open her mouth. Who will know that she loves the smell of Japanese Cherry Blossom hand lotion from Bath and Body Works? Who will know that whispering in her ear is a sure fire way of getting her attention when she is close to a meltdown?
Will anyone be able to figure out that when she turns over one of her battery operated toys she is indicating she believes the batteries need changing? When she throws her jeans across her bedroom in anger, will her new caregiver figure out that she hates the feel of denim and only wants her velour pants instead? Will they know that even though she loves macaroni and cheese and peas that she will absolutely not eat either one if they are mixed together? And, that she will only eat LeSeur Baby Peas and Yoplait Vanilla yogurt?
Who will tell her new caregiver which plant leaves are ok for her to chew on and which ones are poisonous? Will they know when she signs bird when she is outside that she is actually hearing the birds sing? Since her signs for “swing” and “swim” look very similar, how will they know which she means? Will her new caregiver know to give her the light up stuffed bear at bedtime and pull the covers over her head so she can see the light better? Will they know that she loves to be told “Up and Attem, Ashley Ant” every morning when she is woken up? And who will know that her favorite color is red except when it is pink or when it is orange?
Perhaps all these thoughts are just the musings of a fevered mother, or perhaps I need to start writing down everything just in case. Wait – maybe that is what I am already doing in this blog!
Are you familiar with a group called PLAN(Planned Lifetime Advocacy Network)?
ReplyDeleteAlthough it's Canadian I am sure there must be smilar groups with different names in the US. Among other things, they are big into creating personal networks for your child now for the very reasons that are haunting you. Check out the site.
I know exactly what you mean. I worry about these things too. Before my last surgery I thought about writing out detailed lists of how to help my daughter. I wrote out her medications and doctors in detail but other than that I tried not to be too worried that I may die during surgery. Ugh. The stress!
ReplyDeleteI am in total understanding. It takes more to raise our kids than just what time they get their meds, or which therapies they go to.
ReplyDeleteI'm trying to come to terms that nobody will be able to raise Jaysen the way I can, but I can only hope that he will be able to develop skills to adapt to different ways of doing things- new favorites, new routines, etc.
Perhaps another caregiver will find that he loves something that I had not exposed him to. Maybe he would like fruit flavored toothpaste instead of the bubblegum flavor I've had luck with. It's the only thing I can do to keep from breaking down.
It's such a scary thing to think about.
I was turned on to your blog by Michele's interview of you on 3/11. Reading this particular post touched on some of my own fears about life for my daughter after I'm gone. It's one of the reasons I've put together a life plan for her. I try to include all this type of information as well as all critical information about doctors, medications, schooling, bank accounts, insurance and so on. I wrote about it making a life plan on my blog, The Special Parent and there is another really great site about life plans/letter of intent at betterwaypress.com/lifeplanners/
ReplyDeleteHopefully this will be useful to you and others.
Thank Kryon, I will check out your blog and the information you mentioned. I need all the help I can get, and I really appreciate yours!
ReplyDelete