Now that Miss Z is four, I think some realities are starting to set in for me. I am having to come to terms with the fact that a lot of what I had wanted Miss Z to achieve in her ‘early years’ has not happened. In fact, almost none of it has.
My hopes and aspirations to get her sitting independently, interacting more with the world around her, using sign language consistently, beginning to use a walker to move around, bonding with her puppy Ben – none of that has happened.
If anything, we’ve gone backwards. Where once she ate purees (and even a whole pancake on that fateful Shrove Tuesday), she now rarely swallows food that is put in her mouth. Where once she could prop on her elbows and roll all the way over (in fact, she would roll from one end of the room to the other like a little log), she now is no longer to prop or roll over, and struggles to even roll from her back to her side.
Much of the lack of progress can be blamed on the constant need to deal with medical issues. We’ve lurched from one crisis to the next for the past four years: 2012 was the year of feeding problems, 2013 was urinary tract infections, 2014 was fractures and 2015 has been chest infections (and now another fracture).
Every time we have a new health crisis, everything else screams to a halt. Therapy sessions are cancelled, she doesn’t attend school, we don’t push her at home…
Her medical needs always supercede her developmental needs, and prevent progess.
And the problem is that I have no control over her medical issues. We do the best we can. I do a lot of research into potential therapies and procedures to improve her health. She has a mic-key button for feeding and meds. She has bisphosphonate treatments to strengthen her bones. We are on the waiting list for a fundoplication to better prevent aspiration which makes her vulnerable to chest infections. She wears her scoliosis brace 23 hours a day (on most days) to prevent compression of her lungs. She is on a range of medications and supplements to combat reflux, improve gut motility and strengthen her bones. We give her nebulisers and chest physio and suctioning to clear her secretions.
And none of this is enough to keep her healthy.
When we were last in the hospital, one of the doctors was doing a case history and asked me “what can Miss Z do?” in order to judge her level of development. I was at a loss for what to say – which is unusual because I can talk forever about Miss Z. There is a long list of things she can’t do, but the things she can do, by herself, fully independently, is very limited. I ended up telling the doctor about the one clear accomplishment that Miss Z has made over the past few years: her ability to better cope with new environments. I use the example of school to illustrate her progress: when she first started at playgroup (which meant 2 hours once a week, with me), she screamed the entire session until she fell asleep. She has gradually improved and now she attends one full day per week, without me, and copes quite well. See, she has made some progress…
Special needs parents talk about ‘inchstones” rather than “milestones” to reflect the fact that their children develop at a much slower pace. But even an inch feels like too big a leap for Miss Z most of the time.
I know I’m being negative and ignorning a lot of the tiny progress that Miss Z has made over the years – it does exist. In fact, before her latest fracture, she was doing some (very minor) weight shifting in her walker, suggesting that she is learning she has to put weight on one foot in order to lift the other. However, this is the third time we’ve tried to get her started using a walker, only to have to scrap plans because of a fracture. And there is always the fear that even tiny steps, like shifting her weight, will be lost in the interim.
So, as the opportunity for all that early years intervention gradually slips away, I wonder if I should have tried harder, spent more time working on skills, pushed her carers to do even more. Or if it wouldn’t have made any difference. It is easier to blame myself than it is to accept Miss Z’s limitations. Or to contemplate what the future holds for a little girl with such chronic and complex medical issues.