Friday, 19 July 2013

The Bridge


Yesterday morning, we visited the Bridge nursery to meet with the Head, Gill, and to look around.  I absolutely couldn't fault it, it's an amazing place...and I was also in tears in her office at least thirty seconds after saying hello, and again as we drove away from it.

Honestly, I really don't normally spend quite this much in puddles - and I certainly don't start crying shortly after meeting someone!  But all it took was her kindly saying hello, introducing herself and (the key part) asking how we felt about being there.  How do I feel about being here?  How much time do you have?!

Thankfully, Gill is clearly very used to prospective parents bursting into tears in her office and quite calmly offered me the tissues, reassuring me even as I tried to apologise that I wasn't being critical of her nursery or disrespectful to her, considering she went out of her way to fit us in on an already jam-packed day at the end of term.

It's just that you don't visit that particular nursery because you're in awe of the amazing facilities.

You don't visit because of the high adult/child ratios.

You don't visit because you've heard about the impressive staff qualifications.

You visit that particularly nursery because your child is different to other children.

You visit because your child needs more help than other children do.

You visit because your child is struggling simply to be able to learn and develop.

You visit that particular nursery because you are sent.  By doctors.  By therapists.  By psychologists.

It's not a nursery you choose - no matter how spectacular it may be.

It's a nursery that you need.

It's a nursery that your child needs.

That hurts and I don't think it's going to stop hurting just yet.

But I don't want to make you think it was a bad visit.  It wasn't.  In fact, it was the furthest thing from bad that it is possible to be.  Because the nursery is amazing.  And the nursery is the perfect place for Adam.

The staff ratios are much higher than commercial nurseries and average one adult per two children, but when the situation merits it, the ratio is one to one.  Each "class" has a maximum of ten children in it so there is both time and physical space to meet each child's needs - whether that's space for a wheelchair or space for children who need to wander.

The curriculum follows the standard Early Years Framework so it meets national guidelines, however every single individual child has a specific learning plan, designed to accommodate their particular disabilities and to meet and help them learn and grow no matter what level they are starting from and no matter what upper ceiling may exist for them.  Each child's way of learning is taken into account and the methods used for teaching and learning are geared specifically to them - not to a small group or to a presumption of "the way people with this disability should learn" but to them.  How Adam learns and what he needs in order to learn will be specifically catered to.

The day follows a set routine with specific tasks at precise times in order to help those children for whom routine is all encompassingly important.  Learning happens through play - as in all nurseries I suppose, but the play is intentional and interactive - so time in the sandbox includes learning to fill and pour, learning what objects are by being asked to pass a bucket or spade...etc.

The children go outside in all weathers precisely to help them understand that all experiences are worth investigating and learning about - even the ones where they might get wet if it's raining or cold if it's snowing (and of course suitable protective gear is provided).  

There are multiple playgrounds separated by theme - so there's the area with climbing frames, a whole separate area with cars and a driving track, another area with soft toys...etc. 


Indoors there is a 'soft play' room which is effectively a huge ball pit and squidgy climbing area.  There's a 'dark room' designed to stimulate senses in relation to light - so there are glow sticks, child controlled coloured light boards, neon string lights and every other type of light you can imagine - all in a darkened room meaning it's actually like a beautiful display you might see at Christmas time.  

Then there's the 'light room' which is precisely the opposite - exploring how lights look against a white background and, among other things, this one includes disco balls and child controlled spotlights to shine on different areas of the wall.  

There's one whole corridor designed to be the play corridor so this means there are toys embedded into the walls all the way along it (as in things that spin or rotate or make sounds) and children are free to run up and down or stop and play with any of the toys that they wish.  

There is a gymnasium for sports and large motor activities, which includes an indoor climbing frame with a small slide.

And because, once you're inside the 'complex' all of the doors are locked and only open with security passes, it means that children - like Adam - who are prone to taking off without warning or awareness of their own safety, can run freely and play without needing an adult to hover over them or hold a limb all the time.  (Of course, adults are always in attendance and watching for safety, but the point is that children can be free to move and explore.)

All of the staff routinely use a huge variety of communication styles which include Makaton, Picture Exchange Cards and any other form of communication that is needed to maximise a child's ability to communicate.  

I could keep going, but I think you get the point.  The nursery is amazing.  What they can offer is amazing.  

There are, however, things I did find poignant and hard to see.  Obviously, it is a nursery for disabled children.  This means there are children in wheelchairs, some wearing helmets to protect their heads, others with their heads strapped up and supported as they are unable to do so themselves.  There were children who cannot handle wearing clothes so who wander around wearing nothing but nappies.  There are children who rock and twitch.  Children who stare into space.  Children who do not speak.  Children who clearly have very profound disabilities.

It is difficult to see so many disabled children because I know, so very personally, that behind each one of those children is a parent who has ached over the journey even as we have ached.  It is also poignant, because I know that as of January 2014, my son will join them.  He will have access to the best facilities, the most qualified staff and the greatest level of support available...and all of his teachers, therapists and doctors are lining up to say this is the right place for him.

As we drove away, Chris quietly asked me what I thought of it.  He was excited over the opportunities that will be available to Adam as a result of being offered a place at this nursery.  I replied that it was perfect....and then I burst into tears.  

Letter of Complaint

Dear Mother,

Now that I am Two Point Five Years Old, I would like to take this opportunity to register my deep and sincerely felt objections to the following:


1.  Soap

2.  Shampoo

3.  Haircuts

4.  Hairbrushes

5.  Plasters

6.  Nasty food  (as in anything that is green)

7.  Nap times

8.  Missing nap times

9.  Bed times

10.  Being told to lie down and go to sleep

11.  Being told not to throw my pillow out of the cot

12.  Being told not to crawl underneath the mattress 

13.  Being told not to heave said mattress out of my cot when I am Registering My Sincere Displeasure Over The Current Situation (see item 9)

I am quite confident we can come to an amicable agreement for the avoidance of all such things in my future, on the condition you are willing to negotiate.  By which I mean agree with me.  By which I mean that I Am Toddler and I Do Not Negotiate.

I look forward to receiving your early response at the following address:

The Toddler
Tv Lounge
Home

Sincerely,
Adam



Dear Adam,

No.

Love 
Mummy




Monday, 15 July 2013

Is Adam really "on the spectrum"?

The simple answer to that question is, I believe, yes.  Of course I don't want that to be the case and I would have much preferred it if the doctors could have genuinely said that they've already identified his disabilities and that the challenging behaviours he expresses are related to those.  My precious boy already faces a number of challenges in life so I think it's understandable if I wish for there to be no others.  On Thursday, I was only able to express my emotion and share my tears as we heard the latest "label" that is being applied to Adam, today I would like to offer my thanks for the love and support that poured out towards me in the wake of that post.

Since Thursday's blog entry, I have received many responses both in public comments on Facebook, private messages and emails offering me love, hugs, prayers and support.  Some people asked questions, others shared their own experiences with diagnoses and all of them were very much appreciated.  It was such a difficult day for me that I needed to connect with people.  So to everyone who took the time to read and respond, thank you.  I am truly very grateful.


Quite a number of people were upset on our behalf, sharing the perfectly understandable reaction that with the horrific start Adam had in life, is it really any wonder that he is developing differently or at a slower pace than other children?  Others said that considering we already know Adam is both hearing and visually impaired, it's really no surprise that he wouldn't easily fit in the somewhat narrow bands of what is considered to be "normal" development and telling us Adam is only at 16-18 months is far too narrow a designation for a child facing the challenges that have already been identified, along with the ones he has already overcome.  Some people said variations on the theme of, 'don't write him off too quickly, just give him time, give him enough love and he is sure to be alright'.  


The answer to the first two of these responses is, of course, yes - it would be utterly extraordinary if Adam had escaped such a severe GBS Meningitis illness entirely unscathed and went on to meet all of his milestones at the same time as other children.  It is perfectly acceptable to suggest that he simply needs a bit more time and that just because his development might be a bit slower, doesn't mean it isn't happening at all; his body took such a battering that it may well have needed to do some catching up and healing before worrying about typical development.  Those of you who read my blog regularly will know that I absolutely rejoice over even the smallest steps in Adam's development, because I know these are hard won.  One thing his illness has taught me is never to take him - or anything he does - for granted.


But the third element to these responses does somewhat disturb me and so I need to try to gently respond to the comments that if we just give Adam enough time, love and commitment that he will be alright.   (Here if you could see me, you would know that I am sighing rather wistfully as I type)  Wouldn't it be wonderful if that was the case, if a mother's love really could take away diagnosis, labels or illness in her child?  If, given enough love, time and care that any child would 'be alright'?


But in actual fact, even though I'm quite confident it wasn't intended, the unfortunate reality is that if this question is flipped around, it exposes something much darker which could have profound emotional consequences for us.  That darker side is this:  if Adam remains disabled - if his labels remain, if his challenges remain, if his development is always different from that of other children - does that mean we haven't given him enough love, devotion or care?  Similarly if these labels remains and Adam is always a little bit or even a lot different to other children, does that mean he is not alright?  


This question was so profoundly answered in the essay I shared written by Haydon Spenceley, "Please Stop Pretending I'm Not Human" (and if you wish, you can reread that post here)   You see, I truly know that those who wanted to say that with just enough time and love, Adam would be 'alright' really were doing their best to offer comfort and encouragement.  I believe they wanted to tell me that whatever the doctors say, we shouldn't 'give up' or pigeon-hole Adam into a box where we lose some level of hope for his development simply because of these labels.  I also believe that those caring people will very likely be horrified to see that there is another way in which their kindly meant comments could have been interpreted.  But you see, I needed to share this other side because I am beginning to know that far too many disabled people are subject to comments that are intended to help but sadly, can do the opposite.  For this reason, as the mother of a disabled child, I want - I need - to say that Adam IS alright.  Adam is disabled and he is also alright.  Time and love will always be offered to him in abundance and these will also not take away his disabilities.  Adam is Adam and he will always be utterly adored, precisely how he is, for who he is and just as he is.  One thing I have learned on this journey over the last two years is that all the love in the world cannot make a child develop in one way or another and love cannot take away disability - if anything, love should be expressed in and through disability because love does not seek to change, love simply...is.  

Some other responses, particularly from those whose children or loved ones are also "on the spectrum" in one sense or another really resonated with me.  Hearing a new name, having yet another label affixed to Adam in relation to his development is hard - I'm not going to lie, I would prefer him not to be collecting labels because this journey is hard.  But the reality is that unknowns bring with them an awful lot of uncertainty, stress, confusion and sadness.  Unknowns result in questions that cannot be answered.



On the other hand, labels do give answers.  They shape names, offer reasons and give explanations.  They open doors to new types of therapy and offer us access to therapists and skilled teachers who can help us and help Adam be all that he can be.  Unknowns bring with them an awful lot of watching and waiting.  Labels give a shape and show us how to help.  The fact that Adam has acquired yet another label does not in any way, shape or form mean that we are writing him off or putting him in some kind of developmental closet.  Another label will hopefully offer us another key, or another map to show us the way in, to show us how to connect with him and how to help him be all that he has been created to be.


We also had quite a number of questions asking us about the first week of the assessment itself.  Clearly, we all have different experiences with doctors, some of which are positive and some of which are not.  But you know, in some ways, perhaps it would have been strangely easier if the doctor had marched in and sermonized from on high with her diagnosis.  If she had done that, then I could have responded with righteous indignation and rage - Mama Bear could have jumped to defend her cub, all teeth and claws extended.  Mama Bear could have fought - and she would have done.

But the doctor didn't do that.


The doctor was gentle, kind and thorough.  She explained to us ahead of time that she would be performing a test in which she needed to use specific toys of differing sizes and shapes.  She explained that for some of the tests she could show Adam how to do it multiple times, while for other tests she was required to show him only once and see if he was capable of picking it up.  Some tests she was timing to see how quickly he would engage with them and other tests were not timed, instead she was counting how often he could complete it.


Even saying "test" makes it sound very harsh and examinatory but I assure you that it wasn't.  As far as Adam was concerned, it would have seemed that she was only playing with him.  She offered him blocks of different sizes, shapes and colours and invited him to stack them into a tower.  She offered him other blocks and suggested he might like to bang them together like drums (he liked that one!).   She offered him shape sorters to see whether or not he might like to put the wooden square shaped cutout into the square shaped space on the board and asked whether he could tell the difference between a square, circle and triangle.  She offered him a brightly coloured story book and asked if he could find the cat.  She offered him a car to drive back and forth across the table top.  As far as he was concerned, she only wanted to play with him, he had no idea that these were tests at all.


The doctor even explained to us ahead of time that it didn't even matter if he wasn't interested or even able to engage with any of her activities, but that in fact she would be watching to see how he was in the room.  The things he didn't want to do were as interesting to her as the things he did.  This was particularly helpful for us to know because Adam "flits" and struggles to settle to any one thing unless it absolutely captivates him, so it was good to know we could relax and let him do what he needed to do.


By the end of forty minutes, Adam had completed some tests beautifully while others went entirely over his head.  Some tests he was able to do a portion of and not others.  For part of the time, he simply wasn't able to sit at her table and needed to flit around the room clicking the buttons controlling wall-mounted electricity sockets over and over again.  At other times, he needed to stand and talk to himself in the mirror for extended periods.  The doctor was fine about this, she simply watched him during these times and allowed him to come back to her when he was ready or allowed us to encourage him when we thought it was right to do so.


At the end of it all, the doctor showed us back to the nursery where the other children were playing so that Adam could stretch his legs and have some fun while she assessed the results.  She had previously spent a great deal of time examining Adam's foot-thick medical file and had read the many letters from his various consultant's and the reports written on him by his therapists and teachers who know him well (in particular, Adam's Teacher for the Deaf, Graham, has worked with him since he was around six weeks old).  She then asked us to join her in one of the consulting rooms and carefully checked out her ideas with us - she asked us what sorts of behaviours we had witnessed from Adam at home and how we felt about some of the conclusions she was coming to.  When she suggested that the test results showed Adam's development to be around 16-18 months, she asked how we felt about that and we replied that this was consistent with the assessments Graham has been doing with us at home - he has come to the same conclusion.


All of this to say, that this potential label of Adam being on the autistic spectrum hasn't come out of the blue.  Some of you will remember that I even questioned myself whether or not this might be the case in a post I wrote a number of months ago - I was reassured at the time but my questions remained.


At the end of this first week of assessment, part of me wishes I could be righteously angry over this diagnosis - feeling able to fight it might energize or inspire me in a strange way.  Instead, in my heart, I know the doctor has good reason for what she has said and I know that this label does actually make sense and goes a long way towards explaining many of Adam's more challenging or random behaviours.  It's an answer, another piece fitted into the jigsaw puzzle that is our beautiful, loved, challenging son who is wholly unique and no less adored for that fact.


Still to come this week are assessments with the physiotherapist, occupational therapist, educational psychologist, social workers, speech and language therapist and more besides.  I'll offer more updates on the process as and when I can.

In the meantime, thank you for the love, support and encouragement that all of you have offered to me. I am truly grateful to know that when I share these words on the hard days, that I know love and prayers are behind me.  Thank you.



Thursday, 11 July 2013

Autism

Today, you are twenty-seven months and sixteen days.  

Today, for assessment purposes, your age has been rounded up to twenty-eight months. 

Today, we have been told that based on your efforts and abilities during testing with one of the Child Development Centre (CDC) Paediatricians that your development is between sixteen to eighteen months.

Today, we have been told that it is very likely that the doctors will recommend you attending the special needs assessment nursery.

Today, we have been told that you are on the autistic spectrum.

Today, you are no different than you were yesterday.

Today, I love you just as much as I did yesterday.

Today, I love you just as much as I will love you tomorrow.

Today, I love you just because you are you.

And today, I am in tears.



Thursday, 4 July 2013

"Adam, DANGER!!"

I run after him, dodging picnic tables, reaching out to try to grab a collar or an arm.  I can't get close enough, quickly enough.  He's giggling as he runs but suddenly the giggles turn to tears as he runs straight off the edge of the patio.  He hasn't even noticed the stairs - I don't think he could see the difference between where the patio ended and the concrete began three steps below his running feet.  He is face down in the parking lot as I reach him, snatch him up and hold him close as he sobs.



I wanted to take him somewhere nice this morning.  I'm finally on summer holidays and despite still having essays to do, at least we're no longer commuting to Nottingham.  He loves the ball pit with its slides and climbing platforms at one of our local pubs so I thought it would be great to follow the schoolrun with some time there.  He hates the schoolrun now, because when his big brother gets out of the car and leans into the backseat to say goodbye with a tickle and a smile, he begins to laugh...but then Brother closes the door and walks away and he howls.  "I don't want brother to go!  Is he leaving forever?"  His tears convey his sadness and confusion and he screams as we pull away from school.  The fact that we also return every afternoon to pick up Brother again doesn't register.  Each day is as upsetting for him as the last.  The ballpit would be a welcome distraction.


We were ten minutes early as toddler time starts at 9:30am but he was already restless, having been cooped up in the car for forty minutes on the school run and via the fish shop to pick up some algae wafers for 'Munch', our bright orange Plec.  There was a patio outside the pub, overlooking the carpark (empty at this time of day) and full of picnic tables.  I thought it would be perfectly safe to sit at the picnic tables where he could roll his car back and forth until the ball pit opened.  Weaving our way through the tables, I chose one closest to the door and therefore furthest from the parking lot and he climbed onto a seat with a grin.  As we sat there, I held onto one of his arms while he rolled his car with the other.  It was a natural position for us as he is so prone to taking off without warning - he has absolutely no sense of danger and with minimal communication skills or understanding of language, shouts of, "Adam, stop!" or "Adam, no!" are as meaningless to him as is, "Adam, danger!"  But after a few moments, I started to feel self-conscious, like an incredibly over-protective mother, so determined to keep her child close that she will not allow him even an inch of wiggle room.  Then, his car rolled just out of reach across the table and as he strained to reach it, I let go of his arm to allow him to retrieve his car.  

"Is it a game Mummy?"  He looks up at me with shining eyes.  "Mummy, chase me!" Was this what was going through his mind when in the tiniest of instants, he glanced up at me before taking off?  Or was he just completely and utterly unaware of either safety or danger?  As he wove and dodged between the picnic tables, wobbling and bouncing from one to another, I ran after him, cursing loose flip-flops that twisted on my feet.  I tried to reach him, seeing out of the corner of my eye that the parking lot was immediately beside the patio and the busy road beyond that.  I couldn't get to him in time.  As he ran off the edge of the patio, his little legs churning in empty air, there was no awareness of stairs, visual recognition of a drop or any understanding of what was happening until he was in a scraped, bleeding and bruised puddle, facedown in the parking lot.  Thank. God. That.  Parking. Lot. Was. Empty.

Seconds later, I snatched him off the concrete and wrapped my arms around him as he flattened himself into my neck, sobbing. I soothed him as best as I could, "I've got you baby, you're safe now, Mummy's got you..."  Slowly, I walked back to the picnic table, cradling my boy in my arms as my heart stuttered in panic.  Mama-bear had reached her cub and wasn't letting go.  Bruises.  Cuts.  Grazes.  Gravel and grit in his mouth and nose.  But thankfully, nothing serious.  Thank God that parking lot was empty.  Thank God it was only three stairs.

This is just one example of life with my precious baby boy.  He doesn't comprehend danger at all.  He has no conception of keeping himself safe or of staying near me.  If I am not holding him at all times - an arm, reins, in a carrier or pram, even by the collar on occasion when I can grab nothing else in time - he's gone.  In a heartbeat, he takes off.  Shouting after him, telling him to stop or that he's in danger simply doesn't register.  I have no idea if he doesn't hear or if he doesn't understand but I know nothing other than physically reaching him and pulling him back will make him safe again.  And once the tears are mopped up or he is released into what should be a safe environment (the fence enclosed garden for example) he will do exactly the same thing again.  If going headfirst out of the window of his Wendy house results in falling on his head, he will accept a cuddle and go straight back to do it again - the only difference is that this time, I am beside that window to catch him in time.  His ability to learn from mistakes or accidents seems negligible.

And yet, life is not all gloom.  Ten minutes later, he was released into the ball pit where he "splashed" about, giggled, ran, slid down the slide, climbed and played until he was breathless with delight.  I chased him through the padded aisles as he stumbled and wobbled, trying to keep his balance (never an easy thing for him) and on reaching a wall, turned to face me wreathed in grins.  Grins quickly turn to giggles as he's lifted high into the air, turned upside down and released to run again.

After an hour, moaning with tiredness and thirst, he told me he was finished playing so we strolled back to the car in search of his (currently favourite) stacking cups, some fruit-milk and later, some lunch.  Where in addition to his cheesy toast, he grabbed and tried to stuff four slices of peeled apple into his mouth at once and began to choke.  Sitting beside him, I dropped my mobile phone and started thumping his back as I pulled as much apple from his mouth as I could while he choked, coughed and gasped for air.  

On the other end of that phone was his Dad.  I had been telling him that Adam's Disability Living Allowance has been renewed for another year - and that because of his many complex needs, he has now been granted the highest weekly rate.

It was a good day for that letter to arrive.

Thankfully, lunch concluded (offering one tiny chunk of food at a time and keeping all others out of reach) stories and snuggles proved a far safer occupation as he slowly fell asleep in my arms.  Now, I watch the camera as he sleeps and wait for it all to start again.  My precious boy, I love you so - because you are you.