Saturday, February 16, 2008

D is for DENIAL

Not a river in Egypt, but as we all know, The first stage of the grief you feel on diagnosis. ANY DIAGNOSIS. Any parent of a child who has special needs goes through this.
I have been meaning to write about this for a while but I thought I had better do some research first. Maybe I should get some expert analysis? Maybe me writing about Denial is the Pot writing about the Kettle being stainless steel. (Stainless steel is the new black)

So Yeah, Denial.
We all do it. There must be very few people who go around looking for problems in their children to diagnose. We see the flicky fingers, the absence of imitation, the inability to hold our gaze or answer our call, AND WE IGNORE IT!
What we do see is the affectionate loving and cuddly child; That means they don't have autism right? or the child who is programming the DVD recorder with their feet while we can't even set the clock on the video, so they must be brilliant yeah? so no impairments there huh? Huh?

Like the best P.R. people we talk our kids up and refuse to see the problems staring us in the face until one day when it all comes crashing down around us.

Sadly the parental tendency towards denial is fed by a medical profession that is unwilling to refer and diagnose. By an education system that wants to lump all our kids together in whatever national schools that will take them. And by family that does not want to take responsibility for supporting you through any extra burden.

And sadly by family I often mean partners. Significant others. The love of our life who would like to consider that life is what it has always been and there is no need to face up to the reality of being a full time parent for the rest of your life (no empty nest for you!)
or that they are going to have to shoulder the full burden of bringing in the family income, because there is no way that you can both work.

Or that at the end of the day when they want to come home to a peaceful house, with a 1950s style housewife in a frilly apron waiting with their pipe and slippers, a gin and tonic on ice and a pot roast in the oven; What they are actually going to find is a harried and harassed harpy who has lost the ability to produce intelligible speech and who may when you walk in the door be down on her hands and knees "looking for the poo".

(Seriously, when Bratty was training I once spent an hour and a half cleaning under every cupboard in the kitchen because I could smell poo in there, turns out it was on my SKIRT!)

So if only one of you is on board with the programme, the other one will sadly be in a great position to blame you for everything that isn't ideal about their lives.
And that really sucks.

Here you are, trying to learn about the diagnosis, adapt to your child's special needs, secure referrals and services. And your partner in crime is telling you it is no big deal and your child will grow out of it.

Or to stretch the analogy; your plane has diverted from Italy to Holland and the airline has not only lost your baggage, but your partner too.
Great, I am on my own here with nothing but clogs and windmills!!

Denial doesn't only affect partners. In my experience the other generations of the family can do a fine line in it too. Maybe because it limits their liability to help you. Maybe because their generation lived through much tougher times and just had to "get on with it". Maybe because they have a tinsy touch of the disabilty themselves. It may even feel like you do not love your child enough, that you are looking to find fault. You can find yourself an island in a sea of doubters and will begin to doubt your own judgement. DON'T!

Your child needs you to face up to the truth and secure diagnosis and services for them. Seeing them for who they really are doesn't mean you love them any less.

It just means you can see the facts and love them anyway.
And when it comes to the crunch, you will do what ever it takes to secure them the help they need; for as long as they need it.

So when everyone else catches up you could say " I told you so" or, you can just shut up and let them pick up the slack.

As for your own denial.
These days whenever I see a typically developing toddler, looking into my eyes, responding to their name and imitating the words and actions of the people around them, I am truly amazed. Because my kids NEVER DID THAT.

I sat near a little fellow at the rugby recently and listened to the complicated sentences he was using with his Dad (all along the lines of what he would rather be doing at home, he was 2!) and I was just astounded.

Neither of my children said a word to me until they were at least twice that little boy's age. They still don't use the level of expressive language that this little guy was proficient in.
My neice making gestures to point to herself when she was 18 months old, my tutor's daughter putting on my scarves and flouncing around with a handbag at 15 months.

All this was completely absent from my experience of raising my children. But for a long time I refused to believe that there was anything wrong with that.

Well, anything you could put a label to, they they wouldn't grow out of.

Denial.

xx

4 comments:

debbie said...

this was an incredible post to read. i had raised 4 "normal" children and the 2 that i adopted with challenges was a choice i made. no surprises. you really showed me what it is like to see this through different eyes. thank you for that.

Anonymous said...

Hammie,
This really hits home to me cos maybe i am one of those in denial. my ds memorises facts and can repeat them back in different ways, i laugh cos it is so amazing but i worry as well. Having been assessed as of "superior intelligence" I tell myself that's what it is but then i worry about the over fussy eating, the not wanting to walk on lines, the lack of his comfort in new situations or meeting new people. Then he laughs at a joke he has made up with his brother, comes over to hug me when i have hurt my knee and gently pats a small baby on the cheek and brings him toys to play with and i am back to "there's nothing wrong with him". He is just a little different or..i just don't know. so thanks for expressing my fears of my denial so eloquently.

Hammie said...

Debbie, thanks as usual, I am in awe of a parent who has made the choice. That is a whole lot of loving that you had to share.
Anonymous, I think if it sounds like a duck, looks like a duck then it probably is a duck! But what is wrong with that. There are many brilliant people in the world in the spectrum. They are very loved and they do amazing things. There are many average people in the world too who suffer from bullying, or being left out or whatever you may be fearing for your son. If he is brilliant, teach him to operate the system of living in the real world, and then let him shine. Fussy eaters make great wine writers and chefs, not wanting to walk on lines? No getting caught in the tram tracks for him! And everybody feels uncomfortable in new situations. When he is ready get him to do some drama therapy, or toast masters or some kind of structured facing up to fiting in.
he has a gift, enjoy it.
xx

Jasminé said...

Hi Hammie
Oh boy was I/am I in denial (sometimes...) - my story is that a friend of mine said to me "Don't you think he may have Autism...I have been watching him for a while now (along with some other family members...)"...Well...I CRACKED.I was angry, fed-up, insulted...
but I went to the public health nurse (all the time thinking there was nothing wrong, but very bothered by what my friend had said) and we went through all the motions...
only to be told that the diagnosis was "Negative"..however, 6 months later, we got a positive diagnosis and the DENIAL was soooo there still...and still is...and everyday I look at my boy and think "maybe he's okay..." - besides the fact that he is in the Autism Unit at a school here in Cork.
Amazing how us parents of ASD kids can think...I cannot understand my thinking most of the time, but it helps to know that others are thinking the same way, some of the time.
Thank you for a great blog, I must visit here more often.
Take care.