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Wednesday, February 27, 2013

What I wish I'd been told

I read a blog entry that was highlighted on the Huffington Post recently.  Here is it...  LINK  For some reason, maybe because I'm having a not great day, it upset me a lot.  I calmed down and re-read it, and found there was a lot I agreed with there.  Most of the message that the author wished she had been given when her son was diagnosed was something I agreed with, really.  But with one big exception.  Her dream message says " What you'll need to find is the right fuel, the right environment and the right supports. With those, your child has great potential. With the right supports, he will have a happy and fulfilling life."

 Well, that is what got me.  It got me because it is like so much of what I've read lately.  It seems to disregard a huge part of the autistic population----kids like Janey.  Kids that DON'T have great potential.  Now, that sounds awful to say.  Janey might have great potential.  I might be somehow squelching it with my poor attitude.  But I don't think so.  I delight in Janey often.  I think she's amazing, she's wonderful, she's astonishing.  But to say she has great potential is not fair to a lot of people. It's not fair to all the people who work very, very hard with her and have yet to unlock that potential in any huge way.  It's not fair to me, who would give anything on earth to see Janey progress.  And most of all, and what really bothers me, is it's not fair to Janey.  It's not fair to say that a child with an IQ that no-one will give me an exact number for, but which I can guess is around 40, a child that still operates in many, many ways on a 2 year old level at the age of 8, a child that unless miracles occur, will need intense life-long care, has great potential.  It's not fair to say her life will "with the right supports" be happy and fulfilling.  Maybe it will be.  But what I've seen of what is out there for adults with her level of involvement is not happy or fulfilling.  It just isn't.  I'll do anything to make her life as happy as I can.  But I'm not going to take on the burden of thinking there is something I could do that I'm not doing that is keeping her from having this life of potential and happiness and fulfillment in the future.

So, what would I have like to be told, back when Janey was diagnosed at the age of 3?  Maybe something like this..

Your child is not going to be one of the spontaneous, amazing cures.  In many ways, 5 years from now she'll be functioning about as well as she is right now.  There will be days that can only be described as from hell.  There will be false hopes, there will be sadness, there will be disappointment and there will be discouragement.  However, keeping that in mind, there's going to be a lot good.  There will be times that you see Janey as just about perfect---whole days when there could not be a more delightful child.  You will realize that her intellectual disability matters very little in the grander scheme of things.  You will love the people at her school, the wonderful care and teaching and love she gets.  You will meet other parents, amazing people, people you will love being friends with, people that will help form your own circle of support.  Don't feel like there are things you should be doing that you aren't.  Trust yourself.  Take care of yourself.  Keep an eye on your own health.  Don't let it go in order to concentrate fully on your kids.  Enjoy your other children as well as Janey.  Appreciate your amazing husband.  Live for the good times, and know the bad times are not endless.  Autism is tough.  It's extremely tough, tougher than you can realize right now. But you are tough too, and you will learn to live this new life.  Give your girl a hug, and love her just the way she is.

Everyone's letter would be different.  And that is the important part.  Don't let anyone tell you what your letter should say.  You'll find out.  You'll make your own way.  There's only one part of my letter that applies to everyone---loving your child just the way they are right now.  And I know that the people I have met through this blog do just that.


Antti said...

You remind me of the days we got the diagnosis, how the greatest comfort came from our son himself.

mknecht24 said...

I cannot read that particular blogger. I don't know what it is, but she always makes me feel terrible about myself as a mother, nearly every time. I am doing my best to get through every day. Some days are easier than others. I agree with Antti. Lindsey is also my greatest comfort.

Suzanne said...

I shouldn't read that blogger, because I have the same reaction. She makes me feel like a horrible person. But I compulsively read the blogs I've put on my list lately. I agree with Antti too. That's a great way to put it---Janey is my greatest comfort.

audball said...
This comment has been removed by the author.
audball said...

ETA: I missed a big chunk of my response due to cutting and pasting :D LOL!

I absolutely agree with you, Suzanne! We each write our own letters - and we are allowed to change the text as we and our children change!

The article you linked bothers me because it seems to be another example where it lumps all parents of children with autism in one or two categories. If we aren't "amazed" at our child's progress ("the hidden genius") , we must be wringing our hands in despair about our situation (we [parents], "the martyrs".

The truth is, much like you described, things ebb and flow. And just as there are so many facets of autism ("if you know one child with autism, you know *one* child with autism"), how a parent reacts/responds to and parents his or her child with autism is an individual journey as well.

I would never say that I speak on behalf of all (or any other!) parent of a child with autism, so I don't read articles such as the one you linked as if it should resonate with me. Sometimes, an author/parent will be in sync with my situation and I can relate. I read, digest, and compare. But in those instances where there is a disconnect with our situation, I take it as this other person's journey. Maybe someone else will be able to relate, but it's okay for the author to share….maybe it will resonate with someone else.

I think part of it is sometimes these articles chip away a little at the confidence I had to build in raising my own child with autism. Many of these authors seem so confident and so sure…but like many bloggers, I think there is the side that is their reality day to day and the side they "present". Our job is to bring out the best in our children and make them the best they can be - on their own terms :)

Suzanne said...

That is a great way to read blogs such as that one---not as something to relate to, but as a piece of that author's life right then. It's a kind and helpful way to view them---thanks for that. I can just mentally edit out the implications that they speak for all parents, and think of it as them speaking for themselves. And it really is important to keep in mind the difference between what is written publicly and the actually day to day. We all edit our lives before making them public. I try to do so pretty little, but of course there are things that never make the blog! You really made me think---thanks!

Unknown said...

I too have a daughter (Katy - age 10) and feel a lot of what you are saying here. Katy too will always need a significant support structure around her, for the rest of her life. That's probably true, but she is happy, she is loved, and she is just in awe of the world around her (I love this aspect of who she is). I don't let other's measures for success become Katy's measure for success. It's hard at times though, right? I certainly have had to lean on my faith and my family more sense Katy was diagnosed, but this is a good thing.

Off my soap box now. You should be proud of Janey looks like a lovely child. Katy could use more friends like her. You are an inspiration to me. Thank ou for sharing your journey with us.