Friday, 12 December 2014

A Week of Contrasts

This week has been one of contrasts and, as I wrote on Monday, Adam's first Nativity performance was incredibly touching and beautiful to watch.  It was delightful to see that Adam was among his peers and included for who he is, not what he can do.  I am so glad we had that experience as his second nativity performance was completely different.

This one was with his mainstream nursery, where Adam spends his afternoons, and here the differences between Adam and other children were just huge.  Just to be clear, the staff tried to include Adam in the performance; he was cast as a star and given a lovely costume to wear.  He was included in some of the rehearsals, but for others, had to return to nursery when he became upset.  The staff also talked to me on three separate occasions as they tried to work out what they needed to do in order to help Adam to be a part of the show and to seek my permission to allow him leave the hall if he became too distressed.  They made certain that Adam's support worker from The Bridge would be there to help him and they were keen to take on her ideas as they wanted to include Adam.

But, as I discovered, the simple reality is that expectations of a performance in a mainstream nursery are completely different to a special needs nursery.  The abilities of the children are completely different and so, while Adam was entirely among his peers at The Bridge, here he stood out as the child who struggled.

As we gathered in the hall, waiting with other parents for the show to start, one mother sitting in front of me was saying to the man next to her (a grandparent maybe?) that her child was so excited about this performance, that she had been asking over and over again whether or not Mummy was going to be at the play.  Her mum had assured her she would be there and was clearly sharing the excitement and joy with her companion.  But as I listened, I was struck by the difference between her child and mine because Adam has no comprehension that he might be practicing for something special and even if he did, he cannot convey that to me.  

So I waited and watched as the children were led in and I immediately noticed a key difference. At The Bridge, each of the children were led in one by one with a member of staff helping them on an individual basis, where at this performance, all twenty or so of the children were led in by three members of staff.  The children were then encouraged to sit on the benches in front of all the parents and to wait for the show to begin.  While there was of course some squirming and bobbing up and down, for the most part, the children could manage this.  But as I looked around and smiled at the adorable angels, shepherds, Father Christmas's and other miscellaneous characters, I noticed Adam on the far end of the bench.  He was staring around, completely disoriented having been woken early from his nap and while immensely cute in his little star outfit, it was clear to me at least that here, Adam was different.  His support worker quietly sat by his side with her arm around him and helping him to stay on the bench but where that small element was normal at The Bridge, here, Adam was the only one to need such assistance.

Then came a very poignant and really rather upsetting moment because one of the little angels noticed her mother and called out in a piping little voice, "Mummy, I want a cuddle!" The parents looked on indulgently and smiled at her cuteness, but unfortunately her mother refused her a cuddle and motioned her to stay seated on the bench with the others.  The little girl burst into broken-hearted sobs and I felt so sad for her.  Of course, this mother was just doing her best and thought it was right to encourage her child to remain part of the group, but I really was struck by the difference between nurseries in that at Monday's performance, the children who needed their parents were encouraged to seek comfort.  On this basis, there ended up being multiple parents seated at the front among the cast, cuddling their angels, shepherds and kings but actually, I am convinced this just created a rich sense of belonging and participation for everyone.  Sadly, that small gesture of the mother refusing to comfort her little girl created a real feeling of discomfort, particularly because the child continued to sob through most of the performance.  Her mother looked around at the other parents more than once, clearly feeling embarrassed by her daughter's reaction but I just wished she would simply go and offer the cuddle and help to calm her child.  I felt genuinely upset for the girl and whispered under my breath, "Oh please go cuddle your angel!"  I was two rows back so I know she wouldn't have heard me but it just seemed so sad to me that her mum was more worried about what others might think than that her child was in distress.  

Then, as the play started I realised that all of the little three and four year olds had clearly been practicing very hard because they all acted, danced and sang the five or six songs in clear little voices, and we could understand the words of their songs.  Of course, they were each encouraged and reminded by the nursery staff when to move and one of the staff read the story aloud but I was struck by the incredible communication skills the other children had.  One little girl had the starring role as "whoopsy daisy angel" and she was just adorable, skipping around saying her lines and even singing a little solo.  I was struck by how simple communication seems to be for a majority of the children and, even though I wish I didn't, also couldn't help but be struck by how impossible such a task would have been for Adam.  It was a moment when I really noticed that things other parents may take for granted in their own children's development are just not coming as easily to my beautiful boy.

After a few moments, it came time for Adam's part.  It was a very simple moment when one of the nursery staff attempted to pull up the headpiece of his star costume over his head as his support worker led him to the front of the room with three other children.  All he had to do was to stand at the front for all of two minutes, maybe less, but that simple action of being asked to move when he wasn't ready to do so and having a very well meaning adult pull something onto his head that he didn't like triggered a complete screaming meltdown.  His lovely support worker tried so hard to help Adam but as she sat on the floor with him in her lap, he screamed and thrashed as she struggled to keep him from banging his head on the tile floor.  The other children glanced at him but didn't pay too much attention because, I suppose, they are actually quite used to Adam's struggles and expressions of distress.  

One his small little part was finished and Adam's worker led him back to the bench, he was still incredibly upset and sobbing so I got up out of my seat, walked to the front and knelt behind Adam.  I remained kneeling behind him with one arm around his waist and with the other, rubbing his upper arm for deep, comforting pressure while his support worker rested her hand on his leg.  I sat and watched as all of the other little children sang, danced and acted and they really were just so incredibly cute.  But unfortunately, Adam was unable to participate anymore so he just stared around the room and continued to quietly sob for most of the rest of the performance.  His support worker kept attempting to interest him in various toys she had brought in his little distraction bag and finally, Adam's attention was caught by a little toy train.  Now perfectly content, he lay down on the floor and retreated into his own private world, playing with his train and track as the performance continued around him.  

I scooted back towards the other parents, still visible and sitting in reach if he needed me again, but also able to watch the children perform.  It was beautiful to see the other children do so well and yet also really quite poignant to watch my beautiful boy, having retreated into his own private world, and so isolated from the events going on around him.  On Monday, it was very clear that Adam fit in.  He was with his peers and it didn't matter if he needed to play with a toy because he wasn't the only one who needed to do so.  It didn't matter that he couldn't speak or sing because no one else did - the head teacher narrated and signed the story and the parents sang the carols.  On Monday, it didn't matter that Adam needed to have his worker sit by his side because all of the children had a member of staff sitting with them.  On Monday, Adam didn't stand out in any way, he was just part of the group.

Unfortunately, on Thursday, despite all of the efforts of the staff to help him, it was just clear that they simply don't have the resources, training or skill to allow Adam to blend in or to shine in his own right.  At first, I felt very sad about this fact and the ways in which disability can isolate my son, but then, I looked at his gorgeous little face set off by his sparkling star costume and I just loved him.  Once again, I felt so incredibly grateful that even though this is not the place where Adam fits in, that there is a place where he does.  This nursery do genuinely love my son and they really do their best, so I am certainly not knocking that.  Nor am I in any way worried about what my son cannot do because this doesn't really matter to me, what's important is who my son is and how much I love him, just as he is.  

But on Monday, I was moved to tears by the beauty of an inclusive performance that celebrated every child in that setting and catered a performance so that it was beautiful and touching.  No parent or child needed to feel isolated because every child played an equal part and was equally supported.  No child stood out as anything other than beautiful.  But while there were of course many beautiful and adorable moments on Thursday's performance, and I was truly impressed with the skill and abilities of the children, it was still very poignant to me because my child could not participate on an equal level.  

Disability can bring true and deep joy at times when it does not separate my son from others, and disability can also trigger genuine sadness at moments like these.  But one fact remains wholly and entirely true - my child matters and I love him just as he is.

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