I'm sure other parents or caregivers of children with disabilities know what it is like, but that does little to help my mood or energy levels when things get difficult.
Earlier this week the schools had a two hour delay, but I didn't realize it until after I'd woken the girls up and got them ready for school. During the extra two hours we had, Lotus decided to become obsessed with sitting on the toilet and being naked. I could not get her to keep her clothes on. Once Celest was on her bus I tried frantically to get Lotus dressed before her bus came. I tried enticing, cajoling, then yelling, threatening, and quickly devolved into a banshee-like screaming loon. After I was unable to get her to put a single piece of clothing on I had to wave her bus away. I collapsed into a sobbing mess on the floor while Lotus happily caroused about the house in the nude.
I didn't sob just because I'd lost virtually all self-control and escalated a situation into an epic struggle, but because I knew this wouldn't be the last time it'd happen. I know that each time I lose control of a situation or can't do a "normal" thing with my children it makes me wonder how I will continue to be able to care for them into adulthood. If I can't dress an eleven year old, how can I dress a twenty year old.
To make my guilt and self-pity/hatred worse, in the middle of my tirade Lotus reached up her arms around my neck and pulled me to her to give me a kiss. Despite my mean, grouchiness she kissed me. (Or, if you want to be cynical, because of my bad mood she kissed me to get me to relent?)
I am a pessimistic, depressive person by nature. I have been as far as I can remember. It doesn't mean I don't enjoy life or love my children; it merely means I look to the negative in things first. Sometimes I am happy and look for the good in things; generally when I am this way someone else hops in to deflate my optimism.
I don't really know what will happen as time goes on. I hope to keep the girls with me. Parenting a child that will never be responsible for their own care or independent is an odd situation. I feel guilt at the thought of having to have my daughters in an adult housing situation some day, but I am sure that it will eventually happen. I don't think most parents feel guilty when their adult children move out. Worried, maybe. Relieved, possibly. But guilty? Guilty that they aren't doing all they could for their kids. That they are taking the "easy" way out. I really don't like to think about it, but the older my girls get, the closer that day gets. It is something that is difficult to talk about with other parents or professionals in the developmental disabilities field. It is so clinical or detached sounding when it comes from someone who will never be in my position.
I know others have done it before me, and others will do it after me. Still, that gives me little solace.