Teapots And Chocolate

I’m quite a fan of tea. And a huge fan of chocolate. But we all know what happens when you try to make a teapot out of chocolate, right?

This was pretty much the scenario at our ‘Team Around the Child’ (TAC) meeting today. The official line is that these meetings are to bring together all of Orange’s professionals at regular intervals to ensure he (and we as his family) are getting all the help and support that’s needed. Sounds great…

But after two meetings in a row, where I have been given the Spanish Inquisition over how we care for Orange, surrounded by a room full of professional faces who are no help at all in assisting us with Orange’s most pressing needs, I’m beginning to wonder just what they are for, beyond a tracking and auditing service for the local authority?

The two most urgent needs we as a family have had in the last year have been a) getting Orange his place at the right special school and b) finding adequate, specialist childcare. And yet not one of the professionals involved in our TAC meeting process has contributed anything positive at all to help us get there.

In fact, none of the local authority people in the room today – including the regional senior SENCO (Special Educational Needs Co-ordinator), our ‘Lead Professional’ and the ‘Link Person’ between Cornwall Council and the special school Orange will be attending in our neighbouring local authority, knew anything about the fact he’d been offered a place at the special school we’ve been pushing for.

Nothing. I had to tell them. And, get this. They didn’t believe me. If I’d heard IF Orange starts at that school any more times I think I’d have had to ask them all to leave mid-sentence. I don’t know how many more times I’d have had to say ‘his transition meeting is on Friday’ to get one particular person to drop the ‘ifs’.

I like to keep this blog positive. To put out into the world a view of life with a disabled child that is full of happiness, purpose and fulfilment, and to show the world that we are just a common-or-garden family, trying to get on in life and do what everybody else does too.

But right now I’m feeling trapped and angry. Surrounded and cornered by local authority busy bodies who sit in my living room and tell me nothing more than what I can’t do, and provide no positive solutions, help or guidance other than to repeat constantly that they are here ‘to support us’.

Well perhaps the local authority would like to consult with the Chambers Thesaurus that tells me in black and white that ‘to support’ is ‘to advocate for’, ‘to encourage, endorse and assist’.

I had, naively, assumed that our Team Around the Child, and the Lead Professional of that team, would be our first line for any help we might need. Our first port of call for informed assistance, signposting to services that we might not know about, and actually providing practical help to work towards addressing our needs.

Instead, at each meeting I have to answer a steady stream of jargon-filled questions so the local authority can tick boxes on a document. A document that contains deeply personal information about our family circumstances that I can’t even see before it is circulated to all and sundry because the local authority will not email anything to anyone outside of their own four walls.

And after the Spanish Inquisition I am told all sorts of marvellous gems like ‘you choose to make your life more difficult by working’ and blatantly unhelpful untruths such as ‘well, the school is full, you know’ (repeat x 100, and we’re IN now so neeeeeerrr…).

After being surrounded by a sea of blank, pointless faces for the second time in as many months, when asking basic things like ‘how can you help us find trained people to provide childcare and babysitting for Orange, when you are telling us we cannot leave him with a regular babysitter and I’m going INSANE here trapped in my own house…’, and being told nothing more than we should ‘ring the Family Information Service’ (which we’ve done, and they were similarly chocolatey in nature), I think it is time to Sack The TAC.

Individually, I’m sure they are all perfectly pleasant people. Likeable and kind, I’m sure. But I was probably stupid to trust them. Naive to believe that they can actually provide any help.

And what has crystallised it for me is this.

After today’s TAC meeting I was absolutely beyond the end of my wit. In desperation, I poured my heart out to Facebook and asked if anyone could help us find some specialist childcare.

Within an hour, I had messages and phone calls coming out of my ears from people (some of them professionals with access to the same information as those in our TAC), giving us details of local charities that provide specialist childcare, organisations that provide nursing care in the home that we can use some of our Direct Payments to fund, websites we can use to search for babysitters with special needs experience, and local support groups that might be a good source of contacts.

I’d like to know why my sofa full of professionals couldn’t, or chose not to, share any of this information with us when asked. I’m pretty sure I know. It’s either incompetence, or money, or both.

I’ve had an extremely large gin and tonic. And an entire box of Maltesers. For now, I’m off to bed to read about Buddhist Monks, and calm my seething heart.

But tomorrow? Tomorrow, it’s firing squad time.

Wibble.

 

Educating Orange

Yesterday we had some extremely good news. Even better news than the safe return of Bert (thank you Selfridges…).

Orange has a school place. Not just any old school place, but a place in the very best school in the region for children with physical disabilities. Naturally, we are over the moon. His future education is secure. Orange can learn in the very best environment for children with his particular type of needs. Supported by the most wonderful, skilled, caring staff. He will be safe, loved and helped to fulfil his potential by experts who understand him. I cannot fully explain the relief that this news brings.

But there is more to it than that. And hopefully this might go some way to explain why I have perhaps been a little strange, and distracted, for what feels like the longest time.

Getting Orange into school has been anything but simple. It’s pretty much consumed me for the best part of eighteen months. I’ve wanted so much to write about it along the way as I’ve struggled to think about much else but there is a very good reason I haven’t been able to. Politics.

The politics of trying to secure a special school place in another local authority, for a child under statutory school age, with no diagnosis, at a school that is already full could fill an entire book.

It should be simple. Child with complex needs. Nearest school that specialises in said needs. And you’re in, right? In a word, no.

I can’t think of another process that has involved quite as much smoke and mirrors. It is labyrinthine. Awash with riddles, rhymes, booby traps and games. Super Mario had nothing on this.

The daftest thing about it, in our case, is that there isn’t a person involved with Orange who would say this school is wrong for him. And yet the system that Orange’s professional team works within has become so bureaucratic that not one of them was able to say publicly ‘yes, I agree that’s the right school for Orange, let’s talk about how we help you get him in.’ Not one.

Even the school itself had its hands tied. Orange has been attending playgroups and swimming sessions at the school for eighteen months. The staff knows him well. His photographs are up on the notice board in the corridor. And yet, the system has meant even the school did not have the freedom to talk openly with us about securing a place for Orange.

For eighteen months we have had to blindly but doggedly follow a process, knowing with 100% certainty that this school is the right, and only, option for Orange, all the while being told repeatedly that we were trying to achieve the impossible. Worse, knowing that the final decision lay with office staff in two local authorities who have never met our child, and for whom funding and finance is the primary concern.

Many a time, I have sat in my living room surrounded by professional faces telling us nothing other than ‘the school is full’. Individuals who I like and respect, and who are enormously helpful to us, but who are so trapped in a local authority system beset with politics that leaves them powerless.

Throughout this entire process we have often felt utterly alone. Unable to talk honestly and openly about what constitutes the right school for Orange because the very people who are experts and know what he needs (his educational psychologist, physio, occupational therapist, Portage worker, paediatrician, early years senior SENCO), are all employed by a local authority that forbids them from making open recommendations to parents.

We have had to trust in our own belief that this school is the right one for Orange, and push against bolted doors with unwavering faith, surrounded by nothing but negativity about what we were doing. Driven by our own instinct about our child, but unable to ask for advice from any of the experts that surround us, knowing that they couldn’t give us any straight answers. Or any answers at all.

Eighteen months of bureaucracy. Months of statutory assessment for Orange, reports and draft statements, wondering what to do with a statement of special educational needs that specified no school, three months of preparing for a tribunal hearing that we could afford no legal representation for, seeking out advice where we could from charities on how to make our legal case, and still not knowing if any of this work would result in getting Orange his school place.

Nights that should have been spent sleeping, sat instead with hundreds of pages of the SEN Code of Practice, highlighting bits relevant to our case. Daytimes when I should have been working, with the phone on redial to IPSEA to seek out legal advice. Countless meetings and correspondence where we have been told in riddles that ‘you can’t do this’, while persistently and single-mindedly carrying on.

For us, the story has a happy ending. Instead of spending Christmas preparing case files for the tribunal hearing, we will now be celebrating. There have been so many times when we could have given up, and indeed the system frequently encouraged us to do so. Our hard work and determination has paid off, although I am sure not without a huge dose of luck, too.

But our story is far from unique. Hundreds if not thousands of other parents and children around the country are also facing the same, and worse. I wish I was exaggerating when I say that, at its very worst, this process bankrupts families with legal fees into the tens of thousands. It breaks marriages. It leaves mothers, and fathers, at the deepest depths of depression and seriously mentally unwell. We are extremely lucky that we have come out the other side relatively intact and with the right result for our child.

The truth is, there simply aren’t enough special school places. There isn’t enough money. And there aren’t enough people within the system who are willing or able to stand up and change that. They are silenced, and afraid, or just not that interested. Leaving parents to continue battling their way through a system that does very little to work in the favour of the child.

Any parent will tell you that getting a school place for their child can be a nervous time. But how wrong is it that we live and work within a system that makes this process all the more difficult for our most vulnerable? For those that are most in need. It is a system that compromises everyone within it.

For us, we’re going to take a short while to breathe a huge sigh of relief. But once I have recovered myself I will continue to advocate in any way I can for families who are going through the system. And campaign for change.

 

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 
 
 

 

Dealing with the authorities

It occurred to me this morning that Orange is almost 15 months now and clearly has quite complex needs and yet, despite living in a part of the country that is supposed to be well-served by support services, he has nothing but physio.

We have been told that he needs physiotherapy, speech and language therapy (SALT), occupational therapy and Portage (learning through play). He may also need visual and sensory support services. Yet we sit here, seven months after moving to Surrey with nothing but physio. We have done all the right things to try and get him the support he needs and yet none is forthcoming.

Instead, I am his speech and language therapist, occupational therapist and play specialist. The pressure is enormous. I am no expert. All I can do is read, research, ask others in the same situation for advice on things they have done to help their kids. I am guessing, really.

Two months ago, I got a phone call from a lady at Surrey County Council offering us a place at something they call a FACTS group. This is a family therapy session where mums and children with special needs go along, play and have a bit of time with a therapist or two, either occupational or SALT, usually. Great, I thought. Except it just doesn’t really work. Far from being a ‘family’ therapy session, it transpired I couldn’t take The Beep with me. Quite apart from the fact I can’t get childcare on the particular day the FACTS group is held, why should my other child be excluded, cast aside, yet again, in order for her brother to have access to the services that he needs. She puts up with enough hospital visits, therapist visits and general worry. I’m not about to dump her in yet another creche to sit in a room where Orange might get 5 minutes with a therapist, if he’s lucky.

The FACTS group is bogus, really. Set up to look good on paper, but from what I have heard the therapists are there perhaps once or twice a month. What value would we really get out of this?

So I said thanks, but no thanks to the lady on the phone. She seemed quite put out and almost insistent that I find a way of getting to the session. As if it was an obligation, not a choice. Perhaps I’m not the first parent to point out that the service isn’t quite what we were expecting, doesn’t work for our family circumstances and, actually, what is needed is frequent, dedicated OT and SALT for our boy. That’s what we were promised after all.

And that was that. End of conversation. I felt let down, really. And lost at sea, wondering when we might eventually get the proper support we need. But no, Surrey County Council really like to kick people when they’re down, there was a stinging follow up to this little tale. A month later I receive a letter. I open it excitedly hoping it’s news of a referral. It’s not…

‘To the parent or carer of…

This letter is to confirm that you have declined our offer of support via the FACTS group for your son and to let you know that all professionals involved will be informed accordingly’

Hang on a second. You have declined? All professionals will be informed accordingly?


Now excuse me if I’m being a little oversensitive (easily done when you’re worried and exhausted 24/7) but what exactly does this mean? Reading between the lines it sounds very much to me like I am being accused of depriving my son of the services he needs, not that, in fact, you are failing to provide them.

Parents of children with special needs can be very vulnerable, emotionally, and this kind of letter could one day just tip someone over the edge. Me? It reached me on a ‘good’ day, so instead of plunging me into a black hole I just got angry, put it to one side and am now resurrecting it to try and get Orange what he needs.

Sadly, it seems a common theme. I know many parents who have not only had to fight tooth and nail to get what their child needs but then, when offered support, it is lacking or inaccessible somehow. I don’t know why this is but there really needs to be a step change in how local authorities approach supporting vulnerable families and people with disabilities or special needs.

For now, it’s back to Amazon to see what books I can find to help morph myself into a better, all-singing-all-dancing therapist for my son. This will be fine, for a while, but there will come a point when we need proper support services to access equipment that he might need. Really, he needs a bath seat and some kind of supportive sitting and standing equipment. He will probably need a special car seat and or buggy at some point soon. But we can’t get these until he sees an Occupational Therapist. To buy these things would cost thousands and thousands of pounds that we don’t have.

So it’s back to kicking arse with Surrey County Council, requiring energy that (you guessed it), I don’t really have. I know I am not alone in this battle. For every parent out there dealing with the same, or worse, how do we get these people to listen to what we need?