Peace, Love and Understanding

This week has been one of form filling and rushing about from meeting to assembly to appointment to parent evening to book sale.  In my kitchen I have a To Do pile of school and children related admin of gargantuan proportions, and, right now, a week away from the end of term, I am acting on a ‘do the most urgent now, the rest can wait’ principle, otherwise known as Running On Fumes, or Flying By The Seat Of My Pants And Crossing My Fingers That I Haven’t Forgotten Anything.  I am very fortunate in my choice of friends, who regularly keep me informed of events I have momentarily misplaced into the tomorrow file.

As we charge towards the end of the academic year, I can see my younger son, A, wishing that it would just slow down a bit.  Everyone else is dragging themselves to next Friday, longing for the finish line, but he, at the end of Year Six, his final term of primary life, is a mixture of emotion.  Exctiement, apprehension, anxiety, pride and sadness that, after finally getting the hang of little school, he is leaving it behind.  Sam, in typical fashion, has either no idea that the end of term is upon him or is deliberately ignoring it.  Ever keener on his own school, it won’t be long into the holiday, I am sure, before he is up and dressed in his uniform, demanding to go.  But A, my little chatterbox thinker, with all the awareness of a dreamer, sees it a little differently.

That said, he is not as nervous now as he was at the beginning of the week.  Monday saw his first ever day at his new secondary school, a taste of what is to come.  He cycled up with a friend (handily catching up with Sam and J, and equally handily attaching themselves to J – who does not yet understand that he is a child magnet), managed all day on half a sandwich and a chocolate milkshake from a vending machine (the mummy part of me is appalled), and came home immensely reassured that All Would Be Well.

Later that day, he and I attended a meeting with his new Head of House (where, when I was eleven, I imagined that I would be attending some sort of Mallory Towers, or the kind of school that Katy Did Next, he is probably imagining some sort of Hogwarts wrapped up in 70s buildings), where he learned about fake nervous laughter and I managed not to identify myself as a teacher.

I gave myself a good talking to the night before, reminded myself that this meeting was about my still-little boy, not me; and, while his academic achievement is something I am endlessly interested in, the thing I really wanted to highlight, to hammer home, is that he has a brother like no other, and that this fact, this relationship affects him more than you might, at first glance, realise.

I wanted to make sure that this teacher, a personable young man (who made me feel a bit old) in a nice clean shirt and tie (no leather elbow patches in evidence) knew that A lives under the pressures that are peculiar to siblings of children with extra-special needs.  While they no longer share a room (as of the last three months), he is regularly woken at stupid o’clock.  He witnesses odd behaviour, challenging behaviour, behaviour that embarrasses him, and forces us, his parents, to require the younger ones to be more independent than they might, perhaps, like.  He is often randomly bopped on the head, or has his precious things stolen or hidden for no discernable reason.  His needs are often eclipsed by a sudden and unexpected event, and, I wanted his teacher to know, that while we want to give him every support possible with homework, his older brother takes up a lot of our time and energy.  And he has a little sister too.

More than that, he cares for his brother.  He often articulates his worry that someone will pick on Sam, or bully him on the way to school by declaring that he will beat anyone up who tries it (something we are at pains to persuade him not to do, being as he is a teeny tiny 11 and resorting to one’s fists is not the way we want him sorting out his problems!).  He sees himself taking his older brother to school, riding together up the cycle path.  He worries that Sam is going to do something silly in public, or step out in front of an oncoming car, invite himself around to play in someone else’s garden and then refuse to leave, and that he must be responsible for him.

We went on a group holiday last year, one organised for families like ours, and it was interesting to watch the siblings playing together.  The care they expressed for their brother or sister with Down Syndrome was palpable.  Their acceptance of difference was a joy.  Two little boys struck me in particular.  One was A, the other was a boy, taller, but not much different in age, a boy who also had an older brother much like Sam.  I saw in him, as I see in A, a tension, an acceptance and love for a brother who is a constant in his life, and a frustrated yearning for a boy in whose footsteps he can follow, an anger that he is not.

For A is a typical second child, a follower in footsteps.  He doesn’t want to blaze his own trail, not quite yet.  He wants a brother he can look up to, one whose example he can emulate.  Sam, despite being overshadowed so many times and in so many ways by his younger siblings, is well aware of his position as Top Dog, and he and his brother regularly face each other off, shaking down the pack order.  We sat there, she over a cup of tea, me a diet coke, and realised how similar our younger sons were, how unique their predicaments are, because big brother has Down Syndrome.

It’s a hard thing to explain to a teacher.  In many respects our family is just like any other.  We’re not the only ones to live under a bit of pressure.  We’re not the only ones to struggle under the weight of responsibility, to find the job of parenting hard.  There’s nothing anyone can do to get him out of his predicament.  There is no magic wand to wave the chromosomes away.   He doesn’t need allowances.  He doesn’t need excuses.  He needs a little bit of understanding.

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7 thoughts on “Peace, Love and Understanding

  1. Hi Nancy, my best friend has an eighteen year old daughter S, with Rett’s Syndrome. S cannot walk or talk and has to be cared for constantly. S has two older brothers and one younger sister. Having S in the family is not easy and they have all had to accommodate especially when S gets pneumonia at least once a year and needs to be hospitalised. My friend and her husband take it in turns to sleep at the hospital to act as S’s advocate and carer. We all rally around to help but it is a disruption that means Mum is not always there. The wonderful thing is that all the siblings show great maturity, acceptance and understanding of this situation. It is how their life is and they would all rather have S in their lives than not.

  2. A lovely piece Nancy. My youngest of 3 is autistic and the older 2 put up with a lot because of his difficulties. One of the true joys is the patience, empathy and love they show towards him. And he absolutely adores the two of them. It makes for a very special family.
    Damian

    1. Thanks for the lovely comment, Damian. I am immensely proud of my three children – and in particular the way that the two younger ones accept their brother, and, by default, others like him. Like you say, it is great to see them developing such patience and understanding.

    1. Indeed. It’s a complex relationship, full of positives, and negatives. Like all siblings – but with an added dimension that we need, for them, to acknowledge, even if there is nothing to be done about it.

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