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.



2 comments:

  1. Sorry it's such a difficult time. I always find tests and appointments so fraught; they are at once a relief to get answers with a fear of confirmation that things might not be easy. I think it is also very hard to hear a label and not initially at least, imagine the severe end of a spectrum as so many disabilities as stereotyped and it can take a while to find where your child and family fit in between each diagnosis, appropriate therapies and way of life for the future. Of course you don't love Adam a bit less, just having the beginning of some answers is such a mixed blessing. Thinking of you all as the assessments come to and end xx

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  2. Thank you Amy. I know with your own journey with Alice, you really do understand the desire to know what's going on while also not wanting another label. It's really hard to know the labels help and open doors to therapies while also wishing they weren't needed.

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