A different shade of normal.

Another re-run: from the webcafe on Ria Monica. Originally published February 08:

I was having brunch with a friend again today; and yes, I do love a good brunch (or lunch).

We were reflecting on how much progress her son had made since diagnosis and the beginning of acquiring "a service".
She was remembering a time when they couldn't go anywhere as a family as they might potentially come across any of the obsessions that her son had, and couldn't prevent him from indulging. Whereas now, with some structured intervention, huge progress in their son's development and an improved understanding of his diagnosis themselves; they had more flexibility in their life.

They were, in other words, a whole lot closer to a grade of normal that most people with typical children take for granted.

I was really happy for her. No matter how mild or severe a child's autism or other needs are, they are the worst that you have ever had to deal with and we must always make allowances for that.

I don't take this realisation for granted. I have plenty of friends and acquaintances with only one child with special needs, or a child whose needs are balanced out differently to my kids. Maybe their kids sleep all night, or toilet trained easily, or they have good communication skills. In other word comparatively speaking when they are with me; I could say that they have it "easy".
And let's be honest, I can trump most people in the "my life is harder than yours" card game; at least in Autism World.

But I don't, because that is the difference between being a parent and being a professional working in special needs. We only have to cope with our own level; whatever that is, and it can seem bad enough.

So as a fellow parent I have to keep my Full House or Straight flush to myself and be empathetic to the other parent. You see, whatever is going on in their lives; It is not the shade of normal that they anticipated, and it is therefore confronting and at times, shocking.

Now, I didn't get to this Zen like state of acceptance and understanding on my own. I have a 10 year old with Autism. Which means that 6 years ago when I arrived here I met a lot of people with older kids who had received little or no intervention to begin with and years later, were getting the slimmest of services on a drip feed.

They were calmer than me, they were WAY more accepting than me and they very quickly taught me that I was lucky. As you know my kids only have autism and ADD.

Back in the days when autism wasn't so well recognised, we spent an awful lot more time in the "mixed special needs" community. And it has to be said that meeting parents dealing with congenital disabilities resulting in both physical and intellectual challenges; who are doing it with style; really teaches you to get on with it. And so I did.

Yes, the kids with ASDs are often "the baddies" of the mixed special needs community. Our kids are aloof and do not interact easily, they may be displaying inappropriate behaviours, they won't come up and give you a hug. But it is only autism; and with structured intervention they have a good chance of overcoming a lot of their challenges. So it is important to be mindful of this.

A sideline; I have long been a little in awe of the parents of kids with Downs that I come across in special olympics and special needs swimming camps, etc. They appear to be so positive and really seem to have their shit together as parents, which is amazing when you think of all the genuine medical health issues along with educational and therapeutic needs that they have had to deal with.
I still marvel at these parents and their gorgeous kids but I have come to realise; one of the reasons they seem to be so "together"; is just that they have had a lot longer to get used to it.

They have had to face up to the different shade of normal from birth, even before birth in some cases. That doesn't lessen the pain and confusion and anger and guilt and the sharpest heart piercing grief that they have to face. It just puts it a little further into the past.

So back to Brunch.
There I am istening to what it is like to be 12 months into "the journey" and understanding quite clearly what the improvements plus the perspective can equal in today's brand of Autism at 4 years of age.

And then it strikes me; If we were on the Orient Express of normal; my friend was still on the channel ferry at Calais,and I was in Venice, heading for Istanbul.
My level of "normal" is on an entirely different setting to hers.

I love that my friend has "come on so much" as we say in the trade. I am not the slightest bit resentful or jealous. Delighted for her.
But I did have that little jarring reminder of what normal could be; IF I both or even one of my two children were typically developing.

In the world of autism a typical sibling; can be a HUGE advantage; But also, would you believe, a liability .
Having that golden example of typical development in your family can be a great help. I always say about the older brothers and sisters, that with a bit of forethought and planning I should have had that. "Here's one I made earlier" as I flourish my typical child and all their fantastic "third parent" features and benefits.
But it does not work that way. With that help comes the responsibility to ensure that the typical child does not smother under the burden of their special sibling, that they receive adequate positive attention from their parents and get to have something approaching A NORMAL life.

That's right. Having other kids means you have a bigger anchor in normal, because You Have To, for their sake.

Compare that with MY enormously freeing situation of living in The House of Autism, 1 Autism Street, Autismville.
Mum, Dad, Boo and Bratty are all in the spectrum and behind closed doors we get to rock it our way, for as long as we like, without anyone to say Don't.

Even outside the front door I have a hide like an eight and 1/2 stone Rhino and I try to only go to places that either accept us as we are, or just accept our money without caring what we are.
Sure, there are bad days when one of the kids is acting up and I get "the look". But one kung fu kick and The Look is quickly extinguished and we move on.

(okay, I am not writing this from Jail so what I tend to do is say "He/She HAS autism - so mind your own business you old binney!)
I will let you decide if I really say that last bit out loud; it depends on the day.

But sometimes I do venture outside this comfort zone of "my normal" and I am confronted and challenged and hurt.
I have to understand that I need to conform a bit more to fit in and accept the pressure that puts me under. Ouch; do not need that.

But I also feel as many adults with ASDs do; why can't you try and fit in to my world? Get a little closer to appreciating MY shade of normal yourself?

I was at a meeting last year where the topic of chit chat between the health and education professionals and parents for the first 15 minutes was "sleep overs". (Where a pre-teen girl has a number of classmates over to her house to stay overnight.)
I stayed shtumm obviously, having nothing to contribute. I have two kids with autism, they do not integrate socially, and we have no possibility of play dates let alone sleep overs.
But eventually someone tried to include me in the conversation asking "what about you, how do you manage sleep overs?"

A little stab in the heart with a shard of normal in other words.

I replied with as much dignity that I could that I would gladly settle for my own children sleeping through the night and there was no question of asking anyone else to share our nightly adventures in sleep deprivation.

Luckily I had my repair shield back in the car and I was able to reapply my shell of hardness and coping after the meeting.

So what do you think? is our own reality shaped by our senses, our experience and therefore only comparative to our own expectations? Should we go outside that; or is it safer to stay within our safely shaded world of normal, as we know it?
What do you think?


P.S. as I am on holiday I am experiencing our different shade of normal in a mediterranean context. People look asw my girl splashes and sings her little perseverative songs (ah ah oh oh, ebiyadi-oh)
but I rarely explain because none of us speak the same language - which puts Bratty on a level playing field for a change!


Anonymous said…
Hammie, that was one of your best articles to date. Honest and pure brilliant! You sure have an amazing talent for describing hugely complex feelings and experiences in a touching and sensitive way. You've managed to put into words what I've been thinking about a lot of late. I tend to motor along OK until I meet up with someone who has a child the same age as my son with ASD, and that child is talking full sentences and running around playing and laughing with my typical daughter. And then this whole autism thing hits me like a ton of bricks, and I go under for a few days before resurfacing and motoring along again. At times I think it’d be better for my health not to meet up with these people or only to meet up with them in the evening when their kids are in bed. But I know that that wouldn’t make me happy either. I guess we need to keep one foot in the world of normal and the other in the world of autism normal. The trick is getting the balance right between those two worlds. Sometimes we get overexposed to one, and we need to tip the balance back into the other for a little while. Anyhow, do yourself a favour and just go and write that book because it’s begging to be written!!
Lisamaree said…
Thankyou for your kind comments, very encouraging for me!
For You: I would remind you that the hits of grief you feel are very natural and you have to allow yourself to feel it as horrible as it is at the time, you would be a weirdo if you didnt have those dips BUT! The gaps between the dips will get bigger, and there will come a time when you are almost always on top of things. But you are right, you have to keep a bit in the real world, even if it just a toe sometimes.
Anonymous said…
Hammie, as usual well done. Your words hit home but in a nice way. Our normal is not the same as the next persons normal for various reasons. When an "expert" gives me advice re my son with ASD I always go over things in my head (sometimes for a long while) and question myself as to whether I should change the way he does things and for what reason should I do it. Whose to say we "normals" are correct and my son with ASD is incorrect? This question goes round and round in my head. Your blog is fantastic and gives a great insight to a carers life.
Anonymous said…
Just wanted to say well done on another great snippet. Your eloquence and understanding is just amazing. I think comparison is inevitable and invaluable when you are between two worlds. How many parents would still be blind to one child's struggles if they didn't have a point of reference for "normality"?

You didn't have that reference, so in your case it was your instinct as a Mum which took over and told you something was out of kilter for your first born and that instinct kicked in probably even faster but with a sense of dread with number two because you knew what you could be facing. You have great strength to keep fighting the fight. I'm sure you will win the war. XX

Loved the article in the paper today. You have two really beautiful kids- not surprising considering their Mum!
Lisamaree said…
Oh Shucks! Now I am embarassed!
Dougal said…
Ah Hammy, that was a brilliant article and a deadly piccie. I am thrilled for you. Well done you & keep up the good fight! You'll never know just how much and how many of us you have inspired to keep going.
Love ya to pieces,
debbie said…
oh hammie, i wish i lived closer to you and we would be great friends and never give each other's kids those "looks". you are a truly wonderful and unique person and i am so proud to read your blog.
Anonymous said…
another crystal clear insight into the Wonderful World of Autism. I would encourage anyone who is unfamiliar with Autism to read this blog as you have an uncanny knack of putting into words what the rest of us experience as tangled feelings. Wow!
What's normal in our house would likely send many people making their excuses to leave and heading for the nearest local.
That said, I have a small handful of the most precious friends in the world who accept us as we are. What a valuable thing to have. Autism certainly sorts out the men from the boys.
As I've said before, Autism has given us tremendous freedom. We are able to see what is really important and what's not worth getting in a tizz zbout (altho I do fret about the 18 tons of ironing on the landing).
What an amazing gal you are
P.S loved the article in Saturday's Times. Get a load of you in that photo! Kids are peaches
Love FrancesJ
K.Line said…
Man - you are an awesome writer. I laughed out loud at the House of Autism line. I so appreciate what you're saying about the various tolerance levels of people dealing with children (it applies to everything I guess) and how you can't judge someone for not being as hard core (or not needing to be). I'm such a parenting wuss by the standards of others (i.e. freak about everything). Nonetheless I do try hard by my own! :-)
Anonymous said…
I am in same boat as you, excellent analysis of the acceptors and the do not be autism for one minute brigade,

life is full of variety, surprised you are still noticing looks,

stuff the lookers,