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.

 

A year in the life of a swan

This morning I was re-reading an old blog post by a friend of mine about the passing of time when you have a child who is developmentally delayed. This passage, in particular, caught my eye:

My time may have been speeding quickly, but things for Rufus were and are a little more glacial. Not only is his experience of time far slower and longer than mine, it was becoming apparent that his development was taking a similar attitude. And why for me his second birthday is approaching at break neck speed, and yet I don’t have time to help him catch up. At two, I have to accept that despite the tiny, and may I say monumental, strides in his development for a child that had such a poor outlook, they will not make him a toddler be. He won’t be blowing out candles on his birthday cake, he’ll most likely be attempting to smash it with some toy or other.”

“I don’t have time to help him catch up.”
There are days when I wish I could slow down the passage of time, just for Orange. I’ve spent a good deal of 2012 trying to figure out how to help Orange catch up but as I see him slipping further and further behind what typical nearly-two-year-olds are doing I realise that instead I just need to move into a different realm. I know now that I can help him achieve but I can’t help him catch up.
It has taken Orange the best part of a year to learn how to sit. A year of weekly sessions with his wonderful physio and daily ‘sitting practice’ at home with me. In January, aged ten months, the only way it was possible for Orange to sit was in a Bumbo seat, wedged in with rolls of towelling behind him and all around his wobbly little body. Day by day, he gathered strength. By August he could sit on the floor without support for just long enough for me to be able to take this little snapshot.
It has taken him another four months of hard work and practice, that he has protested about daily, to be able to sit like this, and play, without wobbling over. He isn’t able to transition yet between movements, so he’s either sitting or not and the in-between lacks anything recognisable as grace, meaning it will be a while before he can be left sitting without close supervision, but we are getting there.
All in all, it’s been a year of wedging, holding, propping, distracting with rattling toys and endless verses of ‘The Grand Old Duke of Orange’, kissing bumped heads, cheering, clapping and occasionally crying (him and me). A year. In that time, I know babies that have been born who are now sitting, crawling, chatting, pulling to stand and feeding themselves. And this is how I know I have to move into a different realm, because the comparison with normality has become so distant I can’t even really imagine what normal looks or feels like. If I try and anchor myself in the normal, the everyday achievements of typical children become too painful to watch. First words, first steps, handfuls of biscuit being shovelled in enthusiastically by sweet, soggy little baby fists.
Acknowledging that we are in a completely different, and unknown, place frees up the soul a little, to celebrate life and all its achievements, both big and small, without comparison. I can enjoy Orange’s milestones if and when he reaches them, without dread or fear of their pace, while also still having room in my heart to celebrate all the little firsts of the other children in our lives, of friends and family. In learning to sit, Orange has worked immensely hard and has achieved something that I didn’t really know would be possible for him. Rather than mourn the fact it has taken him a year to achieve, or dwell on how tired I am from trying to help him, I just want to celebrate.
Before having Orange, I was a perfectionist to a fault and so terrified of failure that trying to do something I wasn’t absolutely sure I could achieve was out of the question. As a result, I have missed out on too many of life’s experiences and have wasted unexplored talents and desires through paralysing procrastination. Orange has brought a new perspective. Every day brings with it a complete unknown. This year he has taught me to try. Try, try and try again, even if you’re not sure you can achieve what you’re trying to do. Because you just might. And when you do, it will be totally brilliant.
In typical swan style, we have no idea what 2013 holds for Orange. As he grows and develops, I already have one long-eye on some of the challenges that will lie ahead but for now I want to stay focused on the positive. He is here. He is happy. We got him to Cornwall. Today, that’s what matters.
And just for fun, in case you thought all we’ve done this year is learn to sit ;), here’s a very brief run down of what’s been keeping us so busy in 2012… I haven’t written it all down before and although I need to point out that, for a swan, this is a pretty short list, it goes a very long way to explaining why my paperwork is such a mess and I haven’t ever quite  found the time to file my nails or prepare a healthy meal:

– Ambulance rides x 1
– A&E visits x 2
– Hospital admissions x 2
– Surgery x 1
– Paediatrician’s appointments x 4

– Opthalmic assessments x 2
– Hearing tests x 2

– Neurologist appointments x 3
– Geneticist appointments x 2
– Dietician appointments x 3
– Physio appointments x 27
– Portage play therapy x 5
– Occupational therapy visits x 3
– Speech and language therapy visits x 2
– Hydrotherapy sessions x 2
– Orthotist appointment x 1
– Team Around The Child meeting x 1
– ECG heart scan x 1
– EEG brain wave scan x 1
– Chest x-ray x 1
– Blood tests x 7
– Urine tests x 1
– Saliva sampling x 1 (oh yes, this was the most fun, digging around in a 1 year old’s mouth to send off samples for his DDD study)
– Social care assessment x 1
– Direct Payments assessment x 1
– Specialist health visitor appointments x 3

2012 has also been a year of discovery and forming new friendships. I cannot tell you what a support our new friends at SWAN UK have been. As you can see from the list above, having an undiagnosed child means a lot of therapy, invasive testing, questioning, assessing, occasional surgery and (hopefully not too many) hospital admissions. It can be exhausting, physically, mentally and emotionally to manage it all and not let it take over your entire life or bore everybody silly with medical terminology and test results. Having a group of friends, and I really do feel like I can call them friends now, who are all riding a similar path has changed what has been at times a bewildering and terrifying experience into a manageable one. One we can even make jokes about along the way as our children present us with an ever growing list of mystery. Here’s to a happy and healthy 2013, little swans.
“The swan, like the soul of the poet,
By the dull world is ill understood.”
Heinrich Heine, Early Poems- Evening Songs 
 
 

 

Learning to speak up

This week I learned a valuable lesson. It’s one I thought I already knew, but events made me realise I wasn’t practising what I preach. Parents, especially of children with special needs, will know that if your child is in need of something that you are reliant on others to provide, you often need to shout louder than you ever knew possible to make it happen.

You will have seen from my last post about our visit from the Occupational Therapist that I was expecting we might get some help with equipment for Orange, now that he is rapidly approaching toddlerhood, in size, if not in capability. But no help was offered. A long, sighing story unfolded about how difficult it is to get equipment provided for small children with special needs. Apparently if you are under the age of two you don’t count. It is a political minefield of labyrinthine scale and it seemed like The Professionals just couldn’t really be bothered.

But a welcome fresh breath of air was blown into the midst when we met Orange’s new community paediatrician, Dr L, on Tuesday. I realised, as she asked questions and probed into Orange’s history, that I was on stilted repeat like a scratched record as I found myself continually responding “well we were hoping for help with this, but it didn’t really happen” as politely as I could, while quietly seething inside at the realisation that, actually, we have been getting very little support for Orange.

Dr L soon stopped me. “You must ask if you feel you aren’t getting what you need. Don’t be afraid to question, to request, to ask again if you think you need more support. You have a right to do so”. And as soon as those words left her mouth, I realised I have been too reticent to question the status quo, even with my flurry of kick-assing a few weeks ago. So, we don’t fit neatly into many tick-boxes…but that sure as hell doesn’t mean we don’t deserve support.

Within 24 hours of our appointment with Dr L, I had the Occupational Therapist back on the phone. An honest and frank twenty minutes later, and we are on our way to being provided with a bath seat for Orange. She also helped me to figure out what kind of car seat we need next, and where to go to get it. And on Monday we are off to see the Orthotist at the White Lodge Centre to get Orange fitted for a set of leg gaiters to help him with his standing.

I also learned, from Dr L, that whenever Orange has an appointment, we have a right to request to see the lead consultant. There have been too many times when we have been fobbed off with a less than competent registrar, namely his last opthalmic appointment, which involved a stressful three hours in the car for nothing much at all. So with the next round of Orange appointments, I shall be speaking up in my bravest voice and requesting to see the consultant. No doubt we will pay for it with interminable waiting times and weary sighs from behind reception desks, but I am armed now with a new sense of direction and confidence to say “my child has complex needs, please arrange for us to see the lead consultant”.

Gradually I am learning the lingo, and the means to negotiate the NHS system to provide Orange with what he needs. Really, it requires the entirety of my brain capacity to manage it at times, the tenacity of a bulldog (which I certainly am not) and the patience of a saint (yes, this one’s a struggle too). One day, I may write a book 😉

So that’s OT then

I can’t decide if I’m cross or just a little disappointed. I suspect I just had rather high expectations of what an NHS Occupational Therapist could actually offer us. Particularly in Surrey, where it seems that unless you are ‘known to Social Services’ (their language, not mine) then you receive nothing in the form of any specialist equipment at all.

Never mind that I can’t safely hold my son up in the bath. Never mind that he doesn’t have a single safe place to sit and play without help from an adult. Never mind that he’s outgrown his baby car seat and doesn’t have the strength to sit safely in a toddler seat. No, Orange’s needs don’t get put first. Surrey County Council has decided that since we are not ‘known to Social Services’ (i.e. a ‘problem’ family or one that is in need of support in many ways but namely financial), we don’t get any help at all with equipment. Our NHS OT cannot give us a thing.
No matter, you might think, we have savings, we have family who can help. We are lucky for sure. But specialist equipment costs thousands. For items that he will soon outgrow we simply cannot spend £700 on a car seat, £2,000 on a special chair, even more on a supportive buggy… Nor can we easily source these items since they are not always readily available direct to the man on the street. There is an unimaginably vast range of specialist equipment being manufactured, to help children just like Orange, and their parents, to live life a little more comfortably, a little more safely, but the doors have been firmly shut in our faces. ‘Buy it yourself, or struggle on, we’re not interested in helping you‘ is the message I’m receiving loud and clear from Surrey County Council.
While I could start on a tirade about how this attitude is just typical of this particular part of the country, populated largely by the status-oriented, the ladder-climbing, the ‘I’m alright Jack’ brigade, I feel my energy is better expended elsewhere. Not only did today’s OT visit prove wildly disappointing with regards to providing equipment, we also came away with very little to add to the daily therapies we already do with Orange, and no prospect of another visit. No, if I want more OT help, I have to go to the “FACTS” group that I’m not allowed to go to because I have The Beep with me on that particular day. If we are lucky, we will get a report from the OT who visited today and perhaps some more ideas down on paper of things to do with Orange to help his development. We’ll stick it on the wall, follow it to the letter, and hope, I guess.
So I have spent the last thirty minutes online, trying to find out for myself what exactly paediatric occupational therapists should be doing. And I have found what looks to be something wonderful. A clinic called Hemispheres that offers something they call ‘Movement for Learning’ therapy that, it claims, helps the natural process of neurological maturation to support physical, sensory and learning development. Their approach sounds like just what Orange needs and something we can all really learn from. A programme that is a little more bespoke, and quite a bit more intelligent, than the ‘put cubes in a cup’ games that were all the NHS OT really had to offer. NHS 0. Mummy 1.

Rock pool therapy

Clammy wet sand underfoot, blustery salty air, the roar of the ocean and a warm blanket of sunlight seeping through the early morning sea mist. Hallmarks of a North Cornish beach in Spring. Comforting and invigorating, the seaside is a wonderful tonic. All senses sated, most of us come away from a day at the beach feeling calmer, happier, centred. 

For Orange, a North Cornish beach is about as close to perfect sensory therapy as it gets. Mashing a handful of wet sand granules between his little fingers, the constant roll and rumble of the waves on the shoreline ringing in his ears, the visual spectacle of marbled rock formations and steep, dark cliffs all around. He was particularly taken with this little rock pool. We splished and splashed in the warm sea water for at least half an hour. For a boy who cannot bear the feeling of anything at all on his feet, his willingness to let his little toes dangle in the water and dig into the wet sand was a sight to behold.

Calm and happy, it was wonderful to see him so at ease with himself. Orange often struggles to identify with where bits of his body are in space. This is a very hard concept to understand if you don’t suffer from it yourself, but that grounded feeling we get from gravity just isn’t the same for Orange. He feels unsteady, unsure of where his limbs are in relation to the rest of himself. But on the beach that day, toes squirming about in the salt water, bottom firmly planted on a rock, he felt steadier, with a stillness and confidence I haven’t seen anywhere else.

There isn’t much documented about the power of ‘beach therapy’ but given that it feels so darn good to be on one, I’m going to spend as much time as I can with the kids doing just what you see us doing here in this photos. Sitting, splashing, singing, squelching, sunbathing.

Generations of my family have played on this particular beach as young children. As fate would have it, it is one of the few beaches in the South West that you can actually just drive straight onto, park on the sand and walk across miles of flat, firm sand. Unlike many places, this beach will be accessible to Orange his whole life, whether he is in a buggy, walking frame or a wheelchair, I will be able to bring him here as often as we like. This is one of Orange’s therapies that we can all benefit from. It often feels like very hard work indeed, helping Orange with his daily needs, but this? I feel lucky to have an excuse to make ‘beach therapy’ a regular part of our lives. The Beep is pretty happy about it too…