I’ve been irrationally angry lately. The special needs playgroup (which is a prelude to pre-school) that Lil Z has attended for the past two years has suddenly decided to change the day it meets from Tuesday to Wednesday. End of discussion.
Why does this make me irrationally angry? Well, because two years ago, when we joined the playgroup, I changed my work schedule to be able to attend on Tuesdays. And I changed her therapy appointments so that we could attend playgroup in the morning and therapy in the afternoon, all on my day off. And to make matters worse, we can’t change therapy from Tuesday to Wednesday because Lil Z’s therapist doesn’t work on Wednesdays. Not to mention that now is not a good time to raise the topic of changing working days with my company.
So, what do I do?
In the special needs world, there seems to be an assumption that one parent (usually the mother) is staying home to care for the child full-time and is more or less available on demand. Which is crazy because if there are families who need a double income, it is families of children with special needs.
But being the mother of a child with special needs doesn’t seem to be compatible with normal employment. Remember my previous post where I calculated that in 2013, Lil Z had an average of 1.7 appointments per week (excluding playgroup)? What that figure fails to mention is that very few of those appointments are scheduled at my leisure. All hospital appointments are scheduled based on when Lil Z’s doctors hold clinic and what appointment is available at the time. Woe betide anyone who can’t make it to the appointment you’re given, as that means you go to the end of the queue and usually have to wait another 3 months to see the doctor.
Therapists are slightly more accomodating, but not much. With FECS, I’m allowed to suggest a day that is convenient, but have little control over the time – or the number of appointments we’re given in a term. Our private physio is in such great demand that it is nearly impossible to get a set appointment on the same day and time – I’ve actually got Lil Z booked in through 2014 with the physio, just to make sure we get appointments.
I should stop at this point and say that I know I’m lucky. I’ve always had good carers for Lil Z and our current au pair is no exception. In fact, I’ve decided to leave the private therapy sessions to the au pair for the most part. So, although Lil Z is likely to have an even higher average appointments per week score this year, it won’t be just on me…
But that said, I can’t outsource it all. In fact, I can’t outsource a lot of it. And it isn’t because I’m a control freak. It is because I am the one that holds Lil Z’s institutional knowledge.
Allow me to explain my idea of institutional knowledge. I’m stealing it from business terminology, which means the knowledge that long-serving employees have of how a company works, how to get things done, what has succeeded and failed in the past, and relationships with clients and colleagues. For Lil Z, I use the term to mean her narrative, the details of her care combined with her abilities, her progress (and regress) and the vision QB and I have for her future. It is everything from her Keppra dosage to our expectation that she will walk one day (and how best to get her to that point, what will motivate her and how that Keppra dosage will help or hinder).
QB and I spend time discussing our vision for her future. A lot of that has been helped by our membership in a great organisation called Mamre that really is committed to (amongst other things) imagining and striving for a better future for people with special needs. In fact, in one of our Mamre workshops, QB and I made a “vision board” for Lil Z and it remains on display in our home office (and has also featured in a number of discussions). Although we still don’t have a clear vision of the future for Lil Z (but who could have a clear vision of the future for someone who is only 2 1/2?) we know what we want for her and are working towards those objectives. We really do give it thought.
Big picture aside, however, there is a lot of groundwork to be done. And it needs to be done by Lil Z’s parents – not a carer. And since we can’t both spend our days taking time off to attend appointments, do research and make phone calls, and since QB earns considerably more than I do and since I’m the one who works part time in order to spend more time with Lil Z, I’m the one who does it. So, I hold Lil Z’s institutional knowledge.
In the business world, it is a problem with long-serving employees leave because they take institutional knowledge with them – knowledge that can’t be replaced simply by replacing the person. In the Lil Z sense, this means that I can’t entrust all of the care and appointments and discussions to Lil Z’s carer, because the carer isn’t going to be there forever.
Add to this the complexity that the information about how to get Lil Z to her desired objectives is not readily available. I never would have heard about special school playgroups if another mother (that I met at a sleep clinic) hadn’t told me about it. We might never had been referred to FECS if Lil Z hadn’t spent a week in hospital after her first seizure, during which time I met the RCH OT and physio, who initially saw Lil Z and later referred her to them. Nor would I have known to ask for an assessment with the cerebral palsy clinic (if only to rule out CP) if they hadn’t suggested it.
What I’m trying to show is that there is no “one stop shop” for information. No one gives you a definitive guide – or even steers you in the right direction – when you have a child diagnosed with a disability. You’re left to find it all out for yourself.
At the moment, my two best sources of information are Lil Z’s FECS therapists and the other mums at playgroup. That is closely followed by a small handful of support groups that I’ve found on Facebook and also met in “real life”. But if I don’t attend playgroup or FECS therapy or do my online research, then my knowledge will be limited and that, ultimately, will limit Lil Z.
So, here I am, stuck in the working mother paradox. Unable to dedicate myself to either caring for Lil Z or building my career. The best I can do is to schedule my life as carefully as I can. So, changing that playgroup day, it really messed up my schedule.
What will I do?
I’ll cope. I’ll figure out a way. But that doesn’t mean I have to be happy about it.