Community Spirits

As you might know my little fella has recently started at a new school, at the age of 10.
Part of his initial curriculum is to recognise his classmates and to greet all of the people in the new environment. I love this. In his previous placement I worked for years to get him to acknowledge his classmates; most of whom were in the same class as him for 5 years. I would draw circles around their heads in the daily photo's to prompt his recognition, I made PECS cards to point at when asking him "who is in your class". No dice. Every girl he ever met was Laura, and every boy; Conor. He was like one of those middle managers that deliberately get your name wrong to put you off guard.
Adults were less of a problem. As long as they could do something for him; he would focus on their features to recall if needed. I imagine him seeing a blurred outline of a face with a hand coming into focus holding a black marker; then sharpening focus to see the person who does the drawing with him. The better the skills the sharper the focus.
He would remembers these people forever. We might not see them for 6 months at a time but when we visit he goes straight for the pens and paper and settles in beside them to start directing what to draw. And they do.
Everyone else has that blurred kind of outline for him I guess.

So it is great that he is being taught, very quickly I might add, to stop and return greetings with names. And EVERYone in his school stops him.
That is the difference in his new school environment. Everyone expects him to do this; so he does. Kids quickly judge what is the lowest common denominator of behaviour required for an environment and drop to it. If the bar is higher all round, then they reach for it. And it becomes a self fulfilling prophecy as the people he greets get a buzz out of it; so they do it again.

So my Boo's community just got a little bit bigger; and as my G.B.F says "that is just Dandy!"

It might sound strange to be talking about autism in terms of a community. Surely the salient feature of this disability is the fact that the child is isolated and unwilling to interact with peers or others.
Buzzzz; NO! Sorry, thankyou for playing.

Just because the kids do not gravitate naturally towards others to begin with; does not mean that they cannot find value in other beings. We just have to teach them that value in a structured way.
As you can see from my Boo, kids will quickly learn the value of relationships with someone who can do something for you. Just like typical kids who swarm on their Grandparents, Uncles and Aunties; due to the odds of gaining a sweet or gift or even some hard cash; our kids can learn to find the significant carers and teachers in their environment worthwhile.
We call this pairing; getting the person they need to work with to engage or share in a rewarding activity and by association, make themselves rewarding. They can also be the one to deliver a highly reinforcing item; which will get them in the door, but will not have the same lasting currency as the shared activity.
This is something that the Grandparents and Aunties seem to miss, you have to sing from the child's own songbook, in order to be rated as worthwhile.
And no amount of clothes wrapped up in pretty paper are going to win their friendship.

Whereas a good game of "nigh nigh" (pretending to go to sleep then wake up) or "Hello Hello Hello , Goodbye " (self explanatory) or just good old tickles will win their hearts.
And Bratty offers her heart to anyone; all they have to do is respond to her cues; and they will be her friend for ever. Your reward will be to see her face light up when she sees you, then that little hand in yours as she drags you off to play "her" games.

But I digress. Boo now has a wider community; and understands that to be part of that he is expected to "do greetings" which in less than 2 weeks he has taken to really well.

My community is a little wider too. And now I am the Mum of the genius who can type at 150 words a minute.
When I pass the staff in the corridors I hear "Oh, you're Boo's Mum, he is amazing"
And community is really important for us. The new IAA advertising campaign says "Children with autism like to spend time alone; their parents shouldn't have to."
But in the early days; you do.
Firstly because whatever community you had before you had a kid with special needs; is almost certainly not going to be enough when you do find out that things will never be the same.
And that applies whether you community is made up of friends and acquaintances; the people "on your road" or the Mums at the gates ( if you already have kids) or even; your extended family.
Because suddenly everything that isn't happening for your kid is going to be held up to scrutiny.
People will wonder why your child cannot just go and play while you have your coffee and conversation. Why they still have a nappy sticking out of the back of their 4 year old trousers, why they cannot answer when asked "how are you?".
And everyone from the guy at the deli counter to your own mother is going to suspect it is because you are not doing something right.

So you end up pulling away from all those people (except for the guy in the deli, who cares what he thinks?) and find yourself ALONE.

That is not okay.
Because the worst part of all those unhelpful people suggesting that you should be feeding your child better, or toilet training them, or putting them to bed earlier or not letting them watch too much television; is that you suspect as much yourself.
No one does self blame like a parent. Find me someone who is totally confident from the beginning that their child's autism had Nothing To Do With Them ; and I will show you someone who should be psychoanalysed themselves.
From blaming yourself to having a panadol or a single gin and tonic while pregnant, or not breast feeding for long enough (or too long) or not giving birth "actively" or not reading enough to them in the womb; to " I shouldn't have gone back to work" or "I should have read more, played more classical music, fed them macrobiotic food."
Parents do guilt. No one else has to do it for them.

You will also find that you cannot have non-judgemental conversations with your "normal friends".
The Poo conversation for one. Or the spraying the bathroom every time they pee, or putting the wet wipes back in the box, after active use; (yeuch!) or the time they wiped their weiner on a hand towel.
That will bring things to a halt down the tennis club.

So then, it is time to make some new friends. To find a new community. Not to replace the other. You can go back to your old life when it suits you. And your family will eventually have to come around. But you need a new comfort zone of people who understand you and can support you. People who can laugh at the poo conversation. And who can tell you what to try next time.

These people may be other parents, but don't expect to get along with all of them just because you have autism in common.
There is none so queer as folk and it never ceases to amaze me how wacky some of the folk in the "movement" can be.
However, you do meet some real gems and one of the reasons I like going to protests so much is the chance to meet up withall the folks I know and have a bit of craic. (sorry, but I can support "the cause" and have a good old natter and a laugh too, can I not?)

We also must count our helpers and people who choose to work with our kids as part of our "community".
For Bratty's communion this year, we have elected not to invite all the in-laws and outlaws as we did to Boo's. Instead we are having a party for all the carers who have worked with Bratty over the last 6 years. And I am proud to say I am still in touch with all of them. They know her and love her and I cannot wait to see the smiles on the day as she greets them. The only problem will be choosing which one she will invite up to play "Nigh Nigh"; maybe they will organise a rota?

It is these people who form my community. My comfort zone and the place I can feel comfortable being who I am with my children without judgement. I can also seek their advice and take it, as it is given with experience and understanding.
My big sister says it takes a village to raise a child. The parent needs that back up and reassurance, and when necessary guidance to steer them right. And the understanding and patience to back off when we need it.

Man is not an island. More an archipelago, with a frequent ferry service between ports.

To talk to other parents please call the National Autism Helpline in Ireland: Lo call 1890 818 518


Anonymous said…
Wow, Hammie. All so very very true, and so much to take in so late at night. I like to sleep on things, but this message is so apt I feel I have to let you know. I will comment further when I have digested it fully.
Nick McGivney said…
I'm learning from you every time I come around this way. You've got a good knack of achieving enough distance to be objective about people you care for hugely. That really helps to inform others, especially if like me the knowledge base is somewhat lacking.

I don't need t o tell you to keep it up, do I? :)
Anonymous said…
Hi Hammie
I can't agree more about community being so important to Autistic kids (and their mammies).
Ds has been going to pre school since last Sept and has graduated from being a 'cautiously watchful' Wall Hugger to engaging in proper all-singing all-dancing play with typical kids (most of the time anyway). He has learned from his peers to sit and eat together. He insists on going with them on their toilet break, even tho he's in nappies still, just for the craic.
This he learned from his big brother and sister tossing him about the place like a small caber, his several million cousins and the kids at pre school.
I believe he's taught everyone he's come into contact with that even though some of us are wired up differently, that we're all still important and lovable.
Parents have long since stopped saying "poor you" when they talk about my little fella and saying 'isn't he the business' instead.
When our friends, who are often unsure how to deal with Autism, learn to celebrate all our kids' achievements, that's real community spirit.
FrancesJ XXX
P.S did you get the book deal yet????
Lisamaree said…
Jay, I am the opposite. I tend to NEED to post late at night and then I can sleep. Nick, right back at ya! Frances, great to see you about again. And I am even gladder to hear that your son is doing so well at pre-school. I predict big things for that boy; and well done you for all your hard work.
Anonymous said…
Thank you. Thank you. Thank you. My son was just diagnosed. I needed to hear all of that.