Monthly Archives: February 2012

Hidden Costs of #Autism

Posted in Autism/Special Needs, Daughter, Son by

Last weekend was a long weekend in Ontario, Canada… “Family Day”. The kids were at their dad’s for the weekend as it was his weekend, so I spent the weekend at my man’s place, sleeping A LOT. It’s been a rough few weeks with my son as he goes through a developmental advancement and is still working on being able to verbally communicate what’s going through his head, and what he’s feeling. 

I came back home on Monday, eagerly waiting for my kids.  I went into the fridge to pull everything out to make a sandwich before they came home.  Saw that there was mold on the container with pumpkin on it and thought, hmmm, that’s strange. I just used that on Thursday when I made pumpkin loaf, so the other half of the container shouldn’t have mold on it yet…it usually takes more than a week to go bad, but I didn’t think much of it.  Started putting together my sandwich (bagel, ham, havarti, sundried tomatoes, in case you were wondering) and realized the havarti and ham smelt “off”. Again, very strange. I had just gone shopping on Thursday to ensure we had a full fridge and I would have everything I needed for the kids’ school lunches on Tuesday. 

Opened the fridge again and noticed a smell. Started touching items, including the Brita filter, etc. Everything was warm. WTH?!!  Then I noticed it…the temperature dial was at 0 instead of 6, which is where it should have been…oh no! My son had turned the fridge off before we all left on Friday. Ugh.  I turned the temperature dial to 6, closed the fridge, exclaiming a few “words” that aren’t PG-friendly, and went to get my kids from their dad. 

After putting the kids to bed, I looked back in the fridge, made sure the temperature was starting to cool and it was. Phew! The fridge wasn’t broken. Then honestly, I just didn’t want to deal with it so I closed the door, did other things like laundry, etc and went to bed…thinking I’ll deal with it in the morning. So, after getting my daughter ready for school, taking my son to IBI Tuesday morning, going grocery shopping for basics that I knew would be spoiled, I went home and tackled the fridge.  Over an hour later, I had 2 garbage bags full to spoiled food that I wasn’t brave enough to even open, a compost bin full, and a nice shiny fridge:

 

 The only things I felt safe keeping were the bread products and condiments. At first, I kept the hotdogs, but I chickened out and threw them away later in the day too.  Just another example of the hidden costs of Autism. I had just spent more than $100 on groceries before the long weekend which were now ruined.  Tuesday morning I spent another $90 on restocking basics, and yesterday, I filled it more by spending another $125.  My son loves pushing buttons and apparently has now discovered the button in the fridge. Now I need to figure out how to make it inaccessible to him when he has been able to get through every fridge lock I’ve ever tried. Wish me luck!

 

Thankful Thursday – 02/23

Posted in Daughter, Gratitude Project, Son by

It’s been a rough couple of weeks but that makes it even more important to take time to be grateful, so today I’m thankful for:

  • My son and daughter
  • Some successes my son is having in potty training
  • The healthcare system in Canada for my friend’s little 5 month old baby, and for my man’s grandmother
  • Emotionally making it through a very tough ”anniversary”

 

A Lifetime of Lies (and a Truth to Set You Free)

Posted in Autism/Special Needs, Daughter, Son by

This is our first story from a sibling of someone with Autism.  I know the thought goes through my head frequently, wondering how my daughter views having a twin brother with Autism, and an older sister with Asperger’s…and then she’ll ”complain” to me that she wishes she had Autism too so she could go play at IBI.  Go figure!  I think so far, she’s envious. :)  Thank you so much to Caroline for sharing your story! 

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Have you ever had a moment in which you suddenly realize that you’ve spent a lifetime believing a lie? If so, you know that the feeling is a strange combination of regret and relief. There’s regret for the time you’ve lost, but it’s superceded by relief for the clarity that you now possess.

I found myself feeling this way when I went on a yoga retreat day last year. In the final minutes of the retreat, we were invited to create our own series of poses while “Let It Be” played. I felt happy, flowing from one pose to another. Thanks to regular yoga classes, my practice had grown, and I was able to do more advanced sequences than most of the other participants.

But then this voice started up from within. It said: “Who are you to be showing off like this? Who are you to be doing these pretty poses? You’re being disruptive and selfish. Everyone will resent you, and it will be all your fault.”
I managed to push the voice aside and keep doing yoga. It felt great, and I knew my body needed it.

But as I lay down, things started coming up. I was on my back, tears running down my cheeks and into my ears. (Literally. It was a strange sensation.) The act of ignoring that voice — the one telling me to hem myself in– did it.
Suddenly, I was thinking about my younger brother, Willie, who has autism. And in that moment, I understood something about how I’d lived my life up until that point.

Every time I have wanted to let myself ‘shine’ in a new way, I’ve faced this haunting fear. That fear speaks to me in (barely-audible) words: “If you do [x, y or z], you’ll put even more distance between who you are and who your brother is. You’ll be abandoning him. You won’t be able to connect. And if you do manage to take a leap, I’ll make every step fraught with guilt, so deep-down you can’t identify it or shake it. Because your brother is who he is, you don’t deserve to be who you are.”

This was not a message I’d received from my family or friends, or from my brother himself. This did not come from anyone who loved me. I know that my brother’s autism doesn’t make him ‘less than’ me. I know I have my own disabilities as surely as he has his. Even so, I faced this fear.

Yet as “Let it Be” was playing, I was able to hear truth. And love, not reasoning, was what broke through my fear.
Truth sounded like this: “Let it be. Let your brother be who he is. I created him. He is not a mistake. He is a miracle. And let yourself be who you are. I created you. You are not a mistake. You are a miracle. You are my children.

Just as you are so proud of Willie when he plays piano, he is so proud of you when you shine. He may not ever find the words to say it in this life, but because he loves you, he is proud of you. Just as you want him to be free of his anger and behavioral struggles, he wants you to be free of your fear.”

Ever since that moment, I have felt as though some small yet weighty stone has been taken from my stomach. After a lifetime of believing lies, the truth has finally set me free.

Caroline McGraw is a would-be childhood paleontologist-turned-storyteller who digs for treasure in people with autism and intellectual disabilities, and empowers caregivers to do the same.
She writes about finding meaning in your most challenging relationships at A Wish Come Clear, where she invites fellow siblings, parents, and caregivers to visit and receive a complimentary copy of her book, “Your Creed of Care: How To Dig For Treasure In People (Without Getting Buried Alive)”.

Valentine’s Day Scrooge

Posted in News Ramblings, Reflections by

I’ll admit it. I’m a bit of a Valentine’s Day Scrooge. Please don’t assume that because I’m no longer married, that’s the reason I’m a Valentine’s Day Scrooge.  I am partnered with a wonderful man.  I just don’t understand Valentine’s Day, and here are some of the questions that run through my head every year:

  • Why are we expected to pay more attention to our significant others on one specific day of the year?  Shouldn’t we be making those we love our priority all the time? Personally, I spoil my kids on Valentine’s Day.
  • Why does society view buying flowers, chocolate, jewellery, and dinner and a show for women as a demonstration of a man’s love for her?
  • Why does it usually rest on the man’s shoulders to prove his love? Are women “not allowed” to be the one to spoil her man?
  • What about same-sex couples? Is there an acceptable “standard” as to who is the one to demonstrate their love?
  • Why do we prioritize relationships over being single? Why is it “better” to be married than single?
  • Why do we forget about the BIGGEST and MOST IMPORTANT relationship we will always have…the one with ourselves?
  • Biggest question of all…why does everything cost so much more??!!!!

Having said all that, I will admit that I look forward to the day AFTER Valentine’s Day…to break my New Year’s Resolutions with all the chocolate that’s on sale.

 

Fill in the Blank Fridays – About Blogging

Posted in Fill in the Blank by

1.  I started my blog because I love writing, and I wanted to share about how our little family lives with Autism.

2.   One thing I love seeing on other blogs “real” people and families, dealing with the positive and challenging situations we all encounter.

3.  Something I love about blogging is being able to share our experiences, and also learn about other family dynamics.

4. A favorite blog post of mine is…hmmm, that’s a hard one to narrow it down to just one, so here are a few:

My most popular posts have been:

5. Something my friends in real life know about me that I’ve never before mentioned on my blog is that I knew my marriage was over 3 years before it actually ended.

 
6.  My new favorite blogs to read are:

Yup, I love blogs that are high in sarcasm!

7.  Some things I tend to avoid doing on my blog are being negative. Since the end of my marriage, I’ve tried to look at the positive side of every situation…but I’ll admit that some situations are easier than others. ;)

 

Thankful Thursday – 02/09

Posted in Autism/Special Needs, Daughter, Gratitude Project, Son by

This week, I’m thankful for:

  • My son and daughter
  • My friend’s little 5 month old will be able to come home from the hospital, and the support they are receiving from all their friends and family
  • The resources available to me to help me through the rough times related to my son’s Autism
  • Having some R&R time this past weekend

 

Discussion all parents need to have, no matter how awkward

Posted in Daughter by

My daughter and I were driving to pick up my son from IBI today, and we had one of those important discussions that all parents need to have with their children. Somehow we started talking about who she can talk to when she’s sad, happy, angry, etc. We started discussing who are safe grownups in her world to talk to about her emotions.

With my heart beating about a million times a second, I decided it was a great opportunity to chat about what to do if someone tries touching her privates (besides the fact that I will go more than “mama bear” if anyone ever hurts either of my kids!!!!), and who she can trust to tell or go to, if it ever happens.

At the end of the discussion, she knows that NO ONE is aloud to touch her private parts without her permission, EVER; and she has a list of grown ups she knows will listen to her and act on her behalf if, God-forbid, someone ever hurts her.

It was an awkward conversation to have but I think I was more awkward about it than she was, but it was extremely important.  As parents, we need to look for these opportunities and jump on them.  It wasn’t a long conversation but I hope that I have helped my 6 year old have some tools she can take with her for the rest of her life.

Don’t ever miss an opportunity like the one we had today, no matter how uncomfortable and awkward you feel. If we don’t prepare our children for the world, and stick up for them, no one will.

Day 24 – The person who gave you your favorite memory

Posted in 30 Letters in 30 Days by

One of my favourite memories is of my maternal grandfather. I spent the summer in England when I was 16 at my aunt, uncle and cousin’s place. My grandfather came to visit because “how often is my Canadian grand-daughter staying here?”. Later during the summer, I went to stay at his place because “how often do I get to see my grandfather in his home in England?”.

I have two very fond memories from visiting with my grandfather that summer. One was when we went to the local beach one morning, molded the sand into “chairs”, sat down and started chatting…the next thing we knew, it was almost dinnertime. I don’t remember exactly what we talked about, but I still remember the comfort of the time with him, the environment that surrounded us, the waves from the water, the feel of the sand beneath us. Pretty much a perfect day, and that’s why I feel most at ease when around water…it takes me back to that day.

The second memory proved how cool my grandfather was. When I went to his place to stay with him for a few days, we went on a walking tour around the city and, at lunch time we decided to pop into the pub…where my grandfather ordered and gulped back a pint of Guinness at noon. My grandfather was cool!