Reflections on the First Three Years of Having a Child with a Disability
by Alison Rickerl, Houston, Texas
Our daughter Madison has recently joined the ranks of ECI graduates. She turned three years old on July 16th and we celebrated with a huge birthday party. We invited everyone we love and everyone who has helped Madison, including her teachers and therapists and their families. It was a wonderful way to celebrate Madison's life and her accomplishments and show our appreciation.
As Madison enters a new phase in her education, I find myself reflecting on the past three years of our lives. They have been full of countless hours in physical therapy, occupational therapy, speech therapy and vision training. There have been consultations with orientation & mobility specialists, nutritionists, a music therapist and family counselor. Add to that scores of visits with pediatricians, ophthalmologists, low vision optometrists, orthopedists, orthotists, neurologists, geneticists, and ENTs. And the paperwork! We've applied to about a dozen agencies, had scores of meetings with social workers, eight IFSP meetings and four ARD meetings. We've even had to use the ECI complaint process.
Money that used to be spent on nice clothes and vacations now is used for conferences, AFO's (ankle foot orthotics), ear tube surgeries, glasses, and a therapy swing. I spend so much more money on toys than I would have if we only had "typical" kids - we have almost everything that a therapist has brought over that Madison responded well to. Our insurance deductible is met by February every year, and we pay more in copayments for doctor's visits than some people pay in insurance premiums. We've traded away a significant amount of time in the Shriner's waiting room in order to get help for Madison's "cruiser" (special needs stroller). Time on the job is scheduled around therapies. We spend more time on the phone with agencies, social workers, teachers, therapists, and the insurance company than we do with people we love.
No family outing is just for fun - it's stimulation of some sort. Climbing the stairs is not only to get to the "therapy room", but also physical therapy in itself. Playing with play-dough has two purposes - developing fine motor skills and working on sensory integration issues. Engaging one child with another is not just-for-fun play dates, but also to model appropriate social interactions and to work on conversation skills. Looking for toys to play with is a good way to work on visual skills like scanning.
Some people, even teachers, actually tell me that it doesn't really matter how hard we work with our kids - some are programmed to do things differently and at different times during their development. I don't believe that, and, if I did, I couldn't have made myself do the therapy. I'll always ask myself lots of "if only" questions (if only I didn't go to that one movie with my husband that month, then we could have made her climb the stairs one more time, and maybe by now she could.....). All I know is that I do as much as I can in a given time period and hope it is enough to encourage Madison to want to try to do more.
I spend significant time working with parent groups because I find a lot of comfort and companionship, as well as, education in them. Other parents who've "been there" have given me the knowledge and confidence to do what I feel is best for my child.
I've put in tons of extra effort and volunteer time at the kids' day care including serving as the room captain, cleaning the room, painting furniture, and starting a PTO to get more parents involved. I've given the caregivers written material to read and had meetings to help them understand Madison's strengths and needs. I play with the other kids so the caregivers could meet with the therapists. I spend extra time before and after therapies with Madison to ease the transitions. I give gifts at every occasion and write letters of appreciation regularly. Nevertheless, people have suggested to me that maybe I ask the caregivers to do too much for Madison. Another parent once chided me for asking the teachers to pick Madison up and move her to where other kids were listening to a book being read. All I really want them to do is make sure Madison is doing what the other kids are doing - and getting what I pay for in child care. The question, of whether day care is better or worse for my disabled child than being home alone with a baby sitter, will always be foremost in my mind.
My husband and I talk about our jobs, but don't really think of them as careers anymore, since we can't invest the extra time it takes to "get ahead". I've had to change jobs twice, trying to find supervisors who could be flexible with my schedule. I still haven't found a great situation.
Vacations that have nothing to do with a disability-related conference are dim memories. The cost of occasionally going out with the spouse has to be weighed against the stack of medical and other bills. The tiny bit of time spent away from the kids sometimes feels like wasted therapy time, always accompanied by the pang of guilt.
People always say to us, "Take care of yourself", "You do so much", and "You are so amazing". Sometimes, I think I'll throw up if I hear it one more time. I don't think I do any more than anyone else should do if they have children with disabilities.
Even so, I often don't feel I have enough time to do anything really well. I've gone to most of Madison's therapies, and we've really bought into the ECI concept that the parents are the child's primary teachers. We do the therapies as prescribed, but I can't say I've done every little exercise every day over the past three years. I attend all of the parent group meetings and board meetings, but I have to admit that I'm not always fully prepared.
Often I find myself at the end of the day having not done something important. I forget to return phone calls and take immunization records to the next doctor's appointment. I lose newsletter inputs and bark at people when I'm really tired. I let the car run out of gas. I never lay the kids' clothes out or pack their lunches the night before. I've even come back from the grocery store with only sodas, chips and nutty bars and no real food when I'm really stressed out and too tired to think about preparing meals. No, I don't let my kids eat that junk - but I do!
So I really do screw up a lot. And people let me know it, too. The newsletter was not quite perfect. The birthday party invitations didn't arrive in time for people to RSVP. The cordless telephone and the remote control are not where they should be. I get frustrated with the kids a little too easily. And - heaven forbid! - I'm 1 1/2 minutes late to pick my older child up at day care after I've run my tail off all day back and forth between work and therapies. They charge me an extra $5 for that 1 1/2 minutes!
Most nights I go to bed totally exhausted, too tired to move, even though there's always something else that could be done - paying bills, balancing the checkbook, filling out medical paperwork, making priority lists, making lunches, setting out clothes for the next day, washing laundry, writing thank you notes, etc.
In looking back over the past three years, I have much to reflect on. There have been sad times and happy times. We have learned how to truly appreciate life and all of its small joys.
Have I done enough therapy with Madison in her first three years? Maybe, maybe not. I won't ever really know, but I know I've done MY best in fitting in her therapies with my other responsibilities.
Have I fought hard enough to get her the services that I think she'll benefit from? You better believe it. I've even found that without regular services, I have a much harder time making time for therapies. In other words, having lots of support on a regular basis from teachers and therapists has helped me feel confident in my ability to do therapy properly and regularly.
Have I sought as much knowledge about Madison's disability and her needs and about disability issues in general so that I can be effective in helping her develop and grow? Yes I have, and I have tried to share what I have learned with other parents as well.
Have I applied for every service and support I possibly can in an effort to ensure my family is not overburdened financially by having a child with disabilities? Yes, I have. And I have not let my pride stand in the way of trying to access social services. Even though we qualify for very little help of any kind, I can honestly tell my children that I did my best even though they have no college funds.
Have I given enough attention to my "typical" child? No, not anywhere near what she deserves. And I've yelled at her a little too much and given her a little too much responsibility for her age, too. I'm not the perfect parent, and I tell her that. I also tell her that I love her enormously and try to spend some special time with her to let her know how important she is to me.
Have I given my husband enough attention? No, and I don't get enough from him, either. But we talk about our common goals for our family and that one day there will be time for us.
Have I put in my "40" at work? No, and it hasn't been easy making employers happy and still fulfilling my obligations at home. But I've become incredibly adept at managing priorities, which is a very big asset at home and on the job.
In short, even though I've not done very much perfectly, I've tried to do as much as I can, given the situation. I can honestly look back on the past three years and know that I've done the best I can to help my children grow and develop to their potential - because I am trying so hard to reach mine.