Our lives follow certain patterns. Everyone sets up their own families and fall into different patterns, but they are there. Some patterns are pleasant, some are unpleasant, and some are both.
This happens with our “typical” children, as well as our special one. So many life steps are bittersweet, aren’t they? You fall into a life pattern with school: first preschool, gauging their needs and how to best help them fulfill their own potential. Then you start over again in elementary school, middle school, high school, each with its own challenges and achievements. Then college, and if you’ve gone with the flow all the previous years, and they’ve reached the point of confidence and independence, off they go! It’s such a dichotomy, You want them to stay with you forever, always be close to you, and you feel sad at every new step that they are growing so quickly. Yet at the same time, you are doing everything in your power to get them to that point, and you couldn’t be happier or prouder, or sadder, on that day you drop them off and they barely even look back when you leave!
As parents, we know those bittersweet feelings, but the wonderful can outweigh the sad and make it all worth every minute. As parents of a special child (I do not call her special because she is different, I do it because she IS special!), the patterns are different within our own family. The achievements we celebrate are different, the way we teach is different, and, most of all, the patterns we fall into and have to learn to work with are different, not only from those of our other children, but from most families who will never share our experience.
Parent’s of typical children can pretty much work within well-established parameters of typical childhood development. Of course no child is the same, and a good parent takes each child as an individual to gauge what they need at any given stage of development. But you pretty much know what the next stage is going to be, and when to expect it.
Not so with our special ones. One of our “special” patterns deals with epilepsy and EEG activity. Rachel has had the same pattern since she was a year old. We see seizures, her EEG is a mess, we’re told no one has any idea when or how much she will progress developmentally, we get her on medication to control them or she “outgrows” them, her EEG clears up for a while, and we see new developmental milestones and understanding of concepts we didn’t know she would ever understand. Then we try to cram in as much enrichment as possible, until the next seizure, when it starts all over again, often with years in between.
Each one of these cycles is bittersweet. We are thrilled that she is growing, that she is grasping concepts and developing her sense of humor. We are thrilled that she is able to learn new things, because the things she learns make her life fuller and give her more to be happy about and enjoy. Like when she had her last developmental “spurt,” she learned to type and copy and look up things all by herself on the computer. What a sense of freedom she must feel, finally being able to see things she found interesting and fun! (Kidzbop, YouTube ventriloquists, living statues, and looking up bugs she sees outside lol!) And she learned how to work the digital cameras and recorders. What a wonderful way for her to express herself and for us to see a glimpse of what’s inside her!
But with a greater understanding of the world, and with growing up, there are things that make us a little sad as well. She is 20 now. Last October, we had her in the hospital for a week, hooked up to electrodes. Seizures had once again showed their ugly face, after four years of quiet. Epilepsy is insidious. We discovered where the problem was coming from, got her on the right medicine, and she’s been seizure-free since November!
With this new spurt comes new questions, new hopes, new dreams. She is older, and although she functions academically at a first grade level, she still has the attitudes and outlook of a teenager in many ways. She sees her brother, who is only one year younger, driving and working and going off to college, and wants to know why she can’t do those things. She talks to other teenagers in her school (it’s all special-needs), and they talk about having boyfriends, getting married, having jobs, having their own houses, and, yikes, having their own babies. She is a woman, and she is becoming more aware of what she doesn’t have.
That is the bittersweet part. As much as we strive to enable her to have the life choices and independence she wants, it brings with it sadness that she can’t have everything. I never waste a minute wanting anything for her that she doesn’t want herself. I don’t wish she could do all the “normal” things other people do, I wouldn’t disrespect her as her own person like that. I would never presume to tell my other kids what they want or what they are missing based on my own ideas of success!
But how do you answer those questions? Driving is a little easier. She knows you can’t drive if you have active epilepsy, and she’s never known life without it, so she just says okay. Her own house isn’t even that difficult, because she doesn’t really want to be on her own with no one to take care of her or look out for her, keep her safe and warm and fed, and besides, she knows we are happy to have her right here with us. How do you tell your daughter that she should never really have her own baby and be a mom?
When I told my friend (another special mom) about Rachel’s questions and plans, she summed it up pretty well. She said “Special needs parents – eternal dream crushers.” Of course that’s not what we are, but that’s what we feel like, always walking the tightrope over what they need to keep them safe and taken care of, and what they dream about. Always knowing that there are things they are dreaming about we will never know because they can’t express it in words.
So you are sad for a minute, and then you keep pressing on, because if there’s one thing special parents are, it’s pragmatic. You have to deal with the situation as it is, not how you wish it were, or how you want it to be. And I’ve sharpened my distraction and redirection skills immensely over the years! And I’ve accepted the responsibility of making her life the fullest and most enjoyable it can be for her, that is my job, so that hopefully she will never feel she is missing out on too much. And I tell her she doesn’t have to be like everyone else, because she is so special she is already better than most. And I truly believe it!