Work life balance, swan style?

“All the art of living lies in a fine mingling of letting go and holding on”
Henry Ellis (1721-1806), 2nd Royal Governor of Georgia
I’m not a ‘tiger mum’. While I believe in fostering talents and letting desires flourish I’m just not the type to hothouse my kids. A while ago, but not before time, I learnt that genuine happiness and enjoyment in life doesn’t come from being the loudest voice, the fastest runner, the wearer of the most expensive shoes or the occupier of a coveted postcode. Too many years have been lost to unintentionally, and miserably, following the angst-fuelled path of middle class attainment and acquisition. I had an inkling for a long time that this wasn’t what life was for, but it was only with the arrival of Orange that I learnt to let go of some pretty warped ideas I had held to be true.
Orange, with his gentle defiance of our previously understood norms, has turfed out the unsightly competitive perfectionism from our lives and from underneath it has ignited a far healthier, brighter, enjoy the moment kind of outlook. Less striving, less showing off, more smiling, sharing, celebrating.
I am hugely grateful for this about turn. Without it, I am quite certain that life with Orange would not be full of joy but instead would be tarnished with enormous anxiety. A desire to fix him. Hopelessly searching for ways to make him ‘normal’. Of course, I can’t, but without the ability to keep these anxieties in check and adopt a more ‘que sera’ attitude I know I would have worn myself down to the marrow attempting to get him there.
Having a child with significant developmental delays requires a constant check and balance between acceptance of who Orange is and what his limitations might be, and maintaining a dogged determination to help him be the best that he can be. Letting go of the hardwired expectations and dreams that most parents have for their children, but also forging and holding on to new hopes and aspirations for his future.

It would be very easy indeed to completely fill the calendar with therapy appointments for Orange. On top of all the hospital appointments, which are running at the rate of between one and three a week, he now has weekly physio, Portage (play therapy), twice weekly visits from his support workers, plus regular occupational therapy and speech and language therapy assessments, reviews and therapy sessions. It’s already a fairly hefty schedule for a boy who isn’t even two.

But with a child like Orange there is always that temptation to do more. Teaching him to do new things is very, very hard work. It took a year to teach him to sit. He needs a massive amount of input and if he doesn’t get it, he doesn’t develop, simple as that. And at his age, the brain is still very ‘plastic’ so there is a looming urgency to try anything and everything that might set him on a path to a more fulfilling, independent life.

Private physio, SALT and OT, hydrotherapy, specialist therapy programmes like Bibic and Brainwave, special needs playgroups, alternative therapies, music therapy, Bobath therapy, cranial osteopathy, the Feldenkrais method… There is a vast array of private therapies on offer and many a child like Orange has benefitted from one or all of these. I know I can’t give Orange everything on that list, it would be daft to try because it’s just me managing all this stuff and there aren’t enough hours in the day or funds in the bank to do so, but I dearly wish I could do at least some of it. He gains so much from therapy, every time I hear about how wonderful Bibic is or how another child has come on leaps and bounds since seeing a private OT I am momentarily lost in guilt and the shame of failure that I can’t make these things happen for Orange without time and money that, at least right now, I don’t have.

Playing the ‘what if?’ game is dangerous but if we had bottomless resources (or, ironically, less resources – because we earn over the threshold for any kind of funding or support from charities), we’d be able to do more of the things that Orange benefits from but that aren’t covered by NHS or council funding. If there were more hours in the day, or more pairs of hands, Orange could have more of what he needs.

Are we letting him down by not pushing ourselves and those around us harder to make these things happen? Private therapies rivalling most families monthly food bill, pieces of equipment that cost more than the average engagement ring, the list is endless as to what we could pursue on Orange’s behalf. I know we need to do some of it but I have seen parents push themselves to beyond breaking point with multiple private therapies for their child and, given that we don’t know how long we have Orange with us, the one thing I am sure of is that I don’t want his experience of life to be solely about working towards the next developmental milestone that he may or may not reach. He is a happy, delightful, joyous little boy who, really, is having a pretty damn good time enjoying being alive and, while I don’t doubt the impact that therapy can have on his ability to access his world, I want to keep things that way. Happy, relaxed, free.

Even while getting all chewed up inside about what might or might not be the magic therapy that could work wonders for Orange, life is also about balance, and Orange also needs to have the common or garden experience of just being a kid. More than that, we as a family also need to have a normal, everyday life. More days on the beach than in the hospital. As many days spent in pyjamas, singing silly songs and watching nonsense on the telly as spent working our way through Orange’s development programmes. I am also pretty clear now about my own abilities to manage being his permanent home therapist. It’s exhausting and emotionally draining doing the same things every day with your own child, over and over, and not knowing how much of it they will ever learn. I just want to be his mum too. Mum first, therapist/nurse/doctor second.

There is a definite limit on how much we, as a family, can dedicate our lives to therapy for Orange. We haven’t got it right yet, I know that much, we are still chasing the elusive work/life balance in many ways. Trying to maintain focus on Orange’s needs while remembering that we’re a normal family, too.

 

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3 Comments

  1. Patti February 5, 2013 / 11:07 pm

    As a special needs mom who has “been there” and, years ago, tried everything we could afford or could cram into the schedule, I can tell you that the things that helped our daughter most were the things that were FUN… for all of us. Those were the things we stuck to, that worked with our lives and maybe that't the key to it all anyway. Who knows? You have a very healthy, balanced perspective… and O will benefit from the happy hearts of those near and dear. Love your blog!

  2. Jo May 21, 2017 / 9:02 am

    Hi Katherine
    I came across your Blog this weekend and I just wanted to say THANK YOU.
    I can identify with everything you write about, it has been refreshing to read such an honest and beautifully written Blog.
    My son is 17 and has a diagnosis of Ohdo Syndrome.

    • KatherineKowalski May 21, 2017 / 7:28 pm

      Thank you so much for the lovely comment. I absolutely love it when the blog connects me with other parents who have children with similar challenges. I’m sure you would have many words of wisdom to share now that your son is almost an adult. Sometimes I think about stopping blogging but then a comment like yours comes through and I think ‘yes, it’s so worth it!’ xx

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