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!