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I talk about Autism, a lot

Not the Lighter Side of Things

12/29/2012

8 Comments

 
Picture
I am feeling down tonight.  I know I will have to run into some of you readers in the grocery store and it really makes me not want to write this because I don't want to people to think I am always feeling this way. There are moments when I feel down.  I think that is fair to say about everyone in some way.  Today is one of those days for me.  I may not even publish this post.  I am looking around the house and making note of how autism has taken over our lives in so many ways.  There is a stack of books on my beside table with titles like "The Autism Revolution" and "ChallengingThe Myths of Autism", among others. Gone are the stacks of books I would pick up on a friend's suggestion or while browsing the bookstore."  Our calendar is covered with Kate's upcoming appointments.  Much of our conversations are centred around who will be able to take the time off work to take Kate to these appointments. Gone are the notes about swimming lessons and playdates.  Our cupboard is full of vitamins and supplements and gluten-free and casein-free foods that we are trying desperately to get her to eat (autism parent's, you know their diet is limited on a good day.)  God, do I sound like I am complaining about helping my little girl?  Even as I re-read what I just wrote I am feeling guilty because I am essentially saying that Kate's autism is taking over our lives and it is making me sad.  How awful is that?  How sad she would feel if she knew I was thinking like this.  I really don't mind reading and researching and fighting for Kate all day long.  I guess, in some ways, I wish I didn't have to.  I think the neurodiversity movement will jump down my throat when I say this, but I wish Kate could recover.  I wish she didn't have these challenges.  Yesterday when Alex and I were driving with Kate he told me how when he is driving her to daycare in the morning she will yell out "GO" when he gets to the stop sign at the end of the road.  I made a joke about her getting her licence someday and being a crazy driver.  He didn't laugh and when I looked at him I could see his face was so sad. I knew what he was thinking.  Will Kate ever get a licence?  Will she ever be independent?  Kate has some language and we are so grateful for that. But, how far will she go? How come no one will say the words high-functioning to us?  We have been throwing that term around at therapy and doctor appointments waiting to see hear it said back to us and it hasn't happened.  What does that mean?  I am too new in the game to understand all the semantics that are tossed about on the autism blogs, groups and sites.  I am getting a sense that people are very emotionally tied to some terms used in connection with autism.  I guess 'high-functioning' is that term for me right now.  Kate is still so young.  We are hopeful that she will gain the skills, once treatment begins, to live a 'normal' life.  We struggle with thoughts that she won't.  One of the shittiest things about autism is that you are robbed of the comfort you get in assuming your child will grow up and become independent and start a family of their own.  I didn't even realize that this idea was a luxury.  I know that not all neurotypical kids grow up to become independent members of society with little families of their own but I do know their parents at least can make that assumption when they are staring in their little toddlers face.  They can take some comfort in the fact that they are born with the things they need to do this.  I'm jealous.  I know I should not be wasting time feeling sorry for myself and get back to working on organizing her treatments but it is just kind of pouring out of me now.  I definitely have some weak moments and this is one.  And now that I have brought you down I am going to cheer you up with this little slideshow of really cute baby animals.  You're welcome. *Update:  After I wrote this I came across another post in a great blog called "Life His Way".  Check out that post here.  It answered me in the nicest possible way.


8 Comments
Grama
12/28/2012 11:34:49 pm

Kate will have her drivers license and she will ace her written and road test !!! Of that Grama is certain :) It is ok to have a down day, all parents have them, and you have a plate much fuller than most parents my daughter. It is perfectly clear to me that you are up to the challenge. I see Kate almost every day and what I witness is a 2 1/2 year old beauty growing and thriving. Kate amazes me, and although I am no health professional , I know one thing for sure, our Kate is not only high functioning, but will be totally independant and excel in her chosen field of study. Not to mention the fact that she will be fighting off suitors asking for her hand in marriage one day!

Reply
Sara
12/29/2012 09:33:48 am

Ya know, you're allowed to have bad/sad days,my friend....so don't beat yourself up about that.People with far less on their minds than you have, complain far more. I only have an inkling of how hectic your days are, and I can tell you, if I had to manage all you do in the run of a week, I could only hope to do half as well as you do. And, just like I do for my nephew Alex, I have high hopes for Kate and her future - they are awesome kids, no matter what. ALSO......I am just up the road if you guys ever need a third adult for whatever, or an ear, or a shoulder, or anything.... BIG XOs

Reply
Shanell
12/31/2012 03:53:39 am

Thanks Sara! You are the best. I cannot wait to ring in the New Year with you guys tonight.

Melanie
12/29/2012 06:34:22 pm

You do not sound like you are complaining about helping your little girl at all! What you do sound is honest. Completely, heart- breakingly honest. That speaks volumes of who you are and how very far you will go to help Kate in any possible ways you can! Yay you!

P.s. I loved the baby animals and the Barney quote:))

Reply
Shanell
12/31/2012 03:55:16 am

Thanks Melanie, my girls would lucky to have a teacher like you! I hope your students' parents know how lucky they are!

Reply
Brendan
1/9/2013 02:30:36 am

You know one of the questions they ask you at Air Canada when you are applying to become a flight attendant? If the plane encounters serious turbulence, the oxygen masks drop from the ceiling and you are confronted with a mother holding her infant in a seat, to whom do you give the oxygen mask first-the mother or the baby?
The correct answer is the mother because if she is unable to care for her baby, they will both be in peril.
The moral of the story is: in the midst of all those appointments and meals and work be sure to do something for yourself. Start a weekly class like yoga or running or get on the basketball court regularly and shoot some hoops. If you can find 15-20 minutes every day to sit quietly alone with no distractions and close your eyes and meditate (most likely first thing in the morning before the kids are up) this small thing will make an immense difference in your whole life.
Love you!
Uncle Bren
PS: did you get a juicer yet? I'm in love with mine! :)

Reply
Shanell
1/10/2013 04:27:13 am

Yes Bren, you are so right. I have to be more careful about things like that. I am going to try and build something into my week that is just for me.

Reply
green arrow jacket link
4/25/2015 02:11:19 am

looking good, you are awesome.

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