No Sacrifice at All

I learned a lovely little life lesson the other night.  I learned it where I learn so many little subtle nudges of wisdom, from a good book.  I was reading The Five People You Meet in Heaven by Mitch Albom.   I wasn't reading it for insight, just enjoying it as the quick, simple read that it is.  But when I came upon page 93, my eyes began to well up, and my heart did too, with a refreshing new perspective.

In the story, a man who has recently dies meets five people from his life who teach him lessons and give him a broader view of the life he just led.  One of these lessons is about sacrifice. 

" Sacrifice is a part of life.  It's suppossed to be.  It's not something to regret. It's something to aspire to....Sometimes when you sacrifice something precious, you're not really losing it. You're just passing it on to someone else."

Wow.  I know that my husband and I definately made the right decision in homeschooling.  Not a day goes by that I am not thankful for its many, many merits.  I so appreciate this time being home with my children.  But it wasn't made without sacrifice.  I had a career, hey, I even had an income!  There is always that slight hint of panic hanging around the edges of the euphoria of homeschooling, that I gave up something too big.  Something that I might not be able to get back.

I realize now that I haven't really given up anything.  I'm just giving something different to someone I really love, and someone who really needs it.  Yes, I offered up a career for a while, but I have recieved so much in return.  My husband goes to work without having to worry about how our little guy is surviving a school day.  He has gained peace of mind.  I can start each day knowing that I am available to my children, to help them learn, to help them socialize, to help them be together as a family.  In the big picture, we have lost nothing.  But we have gained a lot.

For other families who are considering homeschooling, but may be daunted by all that has to be sacrificed to make it happen, I think we offer up an example.  Homeschool families are like all others, like any other family that makes the financial decision to keep a parent in the home.  Decide what is most important to you, make that your goal, and make your decisions and sacrifices accordingly.  Without regrets.  Aspire to reach your true goals, and be grateful.

Above all else, we have gained a happy, secure, comfortable enviornment for our boy to live and learn in.

And that's no sacrifice at all.

Giving Thanks

In a few short hours I will gratefully be digging in to a lovely turkey dinner.  So I thought I should take a few minutes to reflect on what I am thankful for (apart from the aforementioned delicious dinner!).
I am thankful for having a husband that I adore, and a little boy and girl who make the whole world shiny and new, amazingly at the same time that they keep my house disorganized and messy.  A warm house, lots to eat, living close to most of my family, discovering homeschooling, trampolines, long distance phone calls to my sister who lives away, living in a free country, CBC Radio, Diet Pepsi, my local library and of course a hot pot of coffee on the mornings when I really need it. 
And I am thankful to all of you who take the time to read my musings, thanks for coming along for the ride.
Happy Thanksgiving everyone!!!

It's all in the Wording...

For me, wording is everything.  I have a background in anthropology, and truly believe that the words we choose cannot be seperated from our viewpoints, understandings, and perspectives.  It's kind of like how the Inuit have like a gazillion words for snow, because snow plays such a large role in their lives.  Their language reflects that.

It's why I so hate the word "autistic".  I don't just use person first terminology because it is politically correct, I use it so that my language reflects my thoughts, that a person comes before their label. 

The latest word that is beginning to fall harshly on my ears is one that you might not expect.  It's one I didn't always mind, but really irks me now.  Inclusion.  It's not the practise that bothers me, but the word itself.  (although I do have my own view points of full inclusion, which is a different issue altogether.)

What does it mean to be included?  In my mind it would involve accomodations being made so that all people could be participants.  By its very nature, we have to assume that the enviornment or activity is, under normal circumstances in some way non-accessible to those being included. 

When I was a little girl, my older sisters were often reminded to 'include' me in their games. 

Call me a word snob if you like, but I don't want my boy to be just included.  I want him to belong.  It feels like if you have to be included, it sends the message that you are being pulled in from outside the group.  Outsiders being allowed in.  I don't like that word.  I don't know a better one yet, I'm still thinking about it....  I do not see people with exceptionalities as being outsiders, I see them as full bodied, equally important human beings.  Like my favourite line from the HBO Temple Grandin movie..."Different, not less."

Again, it's not that I am in disagreement with the practise of inclusion itself, I see the world as being for all, and the more we can make all places for all, the better.  It's just the word. 

And the wording is everything.

Front Page News!

We've had a pretty exciting couple of days here!  Earlier this week I received a message to contact a reporter from our provincial newspaper, The Telegram.  To say the least this caught me off guard, but they had gotten wind of Aiden receiving his handwritten letter from Minister Kevin O'Brien. (You've Got Mail)  I agreed to the interview, but was floored when our story was printed on the front page of the paper today! Even his sweet little pictured appeared for all to see.

While I'm not a big fan of attention, we really felt the need to agree to the story so that Minister O'Brien would get the public attention his good deeds deserved.  I only hope that The Telegram's readers enjoyed their little bit of good news this morning.  There are good people out there... and little boys still dream big.

Click to view full size and read

Grade One...Here we Come!

There's no denying that the sweet days of summer have come to an end.  If you don't believe, just peak out the window.. 

We officially start Grade One tomorrow, although himself doesn't really know that I actually started it at the end of June...just didn't call it by name.  We did homeschool throughout the summer, just a lighter version of it, enough to keep the routine in place and to avoid the loss of skills.

It's amazing to me the difference that a year can make, and I don't just mean Aiden.  I feel a lot more relaxed going into homeschooling this year, and I know what the difference is.  It's no longer unknown territory for me.  I know that it is great, and I know that it works.  I also know a gazillion other people who are doing it, so I don't feel like quite the renegade that I did last year.

I have some goals for myself this year...  Firstly, to relax, enjoy the beautiful experience of home education, because even though it is a lot of work, it is truly worth it.  I know we will achieve all the outcomes, and I know there will be good days and bad days, I plan on enjoying and celebrating the good days, and taking the bad days with a grain of salt.  And moving on.

Secondly, I am working hard on always letting himself know what to expect, and what is coming next.  I have found that this has helped enormously with behaviour.  It's the classic use of visuals, schedules, checklists, etc.  Helping him avoid  "not knowing" and having to worry about new events and activities.  It really does take a load off.

Thirdly, I am going to let go of a lot of uneeded stress I put on myself.  If an upcoming event seems like it will be too difficult to manage, I am giving myself permission to avoid it.  Socially, we're doing great.  Why sabotage that?  I will keep pushing for social experiences, but I will find the ones that are good for us. With no apologies.

Grade one...here we come!

You've Got Mail

A letter came in the mail yesterday addressed to our little man.  And this letter has already made our lives exponentially easier.  Perhaps a little background information is in order...

At the beginning of this summer, Aiden somehow got it in his head that he wanted to drive a transport truck.  And he wasn't talking about it in that cute, "when I grow up..." kind of way. He meant now. Those of you familiar with autism know that once our kids get something in their head, it tends to stay there.  So, for weeks we were inindated with the same question, "When I'm five can I drive a transport truck?"  We'd try to shrug off our "no" answer to lighten the blow, but his insistence grew.  And his dissapointment did too.  We were being badgered, and there was no end in sight to this badgering.

So, I had an idea.  Aiden and I wrote a letter to Hon. Kevin O'Brien, the Newfoundland Minister of Governemtn Services.  That's right, I wanted Aiden to get the news straight from the horses mouth so that he could accept the "no" more easily.  Also, I thought it would buy us a load of time, so whenever he would ask his question, we would say, "You'll have to get your letter back and see what the Minister says."

Ha Ha.  I fully assumed that I would wait a reasonable amount of time and send him a reply myself, gently letting him down.  But to my great shock, yesterday's post contained a letter addressed to him in a provincial government envelope.  Could it be?  Unbelievably, he had gotten a reply.

And not just any reply, he recieved a three page hand written letter, sighed "Kevin". And let me tell you, it was a beautiful letter, much better than the fake reply I had been planning.  The Minister talked about his own brother wanting to drive a truck, and how he had grown up to make a career of being a trucker.  He went on to say that he had to be 19 to get his license, but that time goes very quickly when you are young.  So eleoquently he encouraged him to keep his career goals open, and that perhaps he might rather start a trucking business instead, and own an entire fleet of trucks, calling this "Something to dream for."  Finally, he invited Aiden to write to him again anytime he wanted, or even to get us to bring him to his office so that they could meet each other.

I've got to tell you something.  This response has touched us greatly.  I think of all the letters I have written to provincial governemtn ministers, and no responses ever come my way.  But I think of this man, who opened a letter from a little boy and took the time not just to brush it off, but to handwrite a meaningful response.

Thank you Minister O'Brien. 

He didn't know that Aiden had autism. He just answered an innocent little boy's letter, and showed great respect for a little boy's dreams.  He let him down gently.

"Mom, when I'm 19 can I drive a transport truck?"

Let's cross that bridge when we come to it.....

The Good Fight

Sometimes I just get tired of feeling angry.  I've learned to live with side long glaances, I don't even care if people look at me sometimes like I'm a bad parent if himself decides to lose it in public.  In truth, public meltdowns happen with much less frequency than in the past, and my skin has thickened cosiderably within the last few years.    

The way I look at it, I have the responsibility, as a parent of a child with a disability that affects key social skills, to help him gain those skills.  And I can't do that if we never leave the house, so look out community, here we come.   I also think I'm pretty reasonable, I try lots of different places, lots of different things.  Some activities/places work, some don't, but we still try.  If they're not working, I don't allow him to act up and ruin it for anybody else, because that would be unfair. 

So, earlier this week when I headed out with my two little ones, and things started to not go so well, I decided we had to leave.  Of course, once he realized that I was in the process of leaving, my little man got quite upset.  But that was okay, because he could scream for a minute while the lady manning the check out desk helped me.  There was no line up, I knew we could be out in a matter of minutes.  BUT....

But, said lady thought that rather than assisting me in my efforts to procure a speedy exit, her skills would be best used to attempt to intervene.  Bad idea.  She began telling him how to act, and when she got nowhere with him, she turned her attentions to me.  Offering unsolicited, unwelcome, parenting advice.  Well, gee, thanks.  Now, my already upset boy has added to his frustrations the fact that some strange lady is telling him what's what, and his safe person in times of crisis (me!) is currently embroiled in an impassioned one on one with this lovely gem of a woman.   GRRRRRRR....Mama Bear's claws couldn't help coming out just a little...

So, long after we could have been gone, I'm still there... and boy is now in full meltdown mode.  Thanks for all your help.  At this point, the lady is irate and beyond rude, and I am livid.  I left the place in tears.  I go lots of places where I've had to leave, but it has been a long time since I have left in tears.  This woman found just a few minutes of my daily life so utterly unbearable...and had no trouble sharing that with me. This interchange left me rattled for days.  Being angry takes a lot of energy, and I know that even if I have the right to be angry, it doesn't mean I have to let that emotion ruin my day.  But I just couldn't let this go.

I reported the incident to the director of the place (a place that is funded by tax payer dollars, by the way.)  At first, she spoke in defense of her employee, but after a lengthy conversation she changed her tune.  The more I spoke to her about the incident, and how it made me feel, I honestly think she was ashamed that it had occured. 

Hubby wasn't content to leave it at that, he had seen how upset I was by the incident, and he thought it warranted a little follow up.  He learned that the employee would be reprimanded, and would be required to undergo sensitivity training.  Victory.

I am proud.  I can look at my boy and know that I stood up for him, when he is too young to stand up for himself.  It's the job of all parents, add a sprinkle of special needs, and it becomes your primary role.  To make the community accessible, aware, and sensitive. 

I didn't just take this on for my boy though.  I can honestly say that I will never bring him through those walls again.  I  much prefer places that are welcoming and warm.  And I've found that there are lots of them.  However, I did it knowing that somewhere in this town, is another mom who wakes up in the morning, and finds her daily dose of courage to take her child with special needs out into the world.  And that she too does it knowing it won't be easy.  And if, perchance, her child decides it's more than they can handle, maybe somebody will be helpful to her.  We fight the good fight not just for ourselves, but for all members of our special needs community.

The whole thing, although resolved, still makes me sad.  I was just a frazzled mom trying to leave.  A little help was all I wanted.

Beyond the Big Picture

Last week I had a great opportunity to attend a training session put off by the Geneva Centre for Autism.  The topic was Structured Teaching and I learned a lot of practical, truly useful information.

The presenter had all of us roll up our little Power Point handouts, and look through them like a telescope.  The exercise was intended to illustrate what it is like for individuals with autism, as they tend to see the world in fragmented pieces, rahter than the proverbial 'big picture'.

This really got me thinking.  While obviously an inability to see the big picture, all the parts as a whole, would present many, many challenges to a person...I can't help but see a hidden gift here.  I don't know about you, but sometimes the big picture is a little daunting, and I wish I could focus in on the tasks at hand sometimes, without always looking too far ahead.

Imagine being able to concentrate all of your energies on doing one task well, or learning about one area of interest inside out and upside down, before tiring of it and moving on. Focus.  To the umpteeth degree.

I'm a big picture person.  I get caught up in all that lies ahead of me.  I plan myself crazy at times.  This comes in handy when you have to manage life for a sensory-stressed child, but it can get pretty exhausting too.

Sometimes I'd like to see beyond the 'big picture', I'd like to truly take each day as it comes, get lost in the joys and miracles at hand.  Worry about the rest later.  Get through what I've got to get through without seeing all that lies ahead.

Maybe we could all benefit from a small dose of tunnel vision.

Amazing Contest!

I just have to let you all know about an amazing contest, by Soft Clothing...they are awarding a Back to School package of sensory friendly clothing, etc.  If you have a child with sensory issues, I strongly suggest you give this contest a go! You never know....
Follow this link:
http://www.softclothing.net/products/sale/giveaways

Good luck!

Dinosaurs Are Boring

Dinosaurs are boring.  There.  I said it.  And for that matter, so is anything to do with Outer Space.  And you know what else?  I hated the movie Titanic.

It's okay if we don't all like the same things, keep the same interests, wear the same clothes, watch the same t.v. shows.  How boring the world would be if everyone thought the same thoughts, wished the same wishes, had the same favourites, dreamed the same dreams.

I remember when A. was first diagnosed, how I held it as a real goal to expand his areas of interest.  I was so concerned that my little boy, freshly turned 3, was only really interested in trucks.  Looking back, it would have been a good thing if someone had taken me aside and told me to smarten up.  But, I was confused, overwhelmed, and perhaps overly concerned.  Unfortunately, the early intervention team did nothing to console me, they actually thought this was a legitimate goal.  "Dinosaurs" became one of his "programs" and time was actually scheduled each day for him to play dinosaurs.  Off I trotted to the store and bought every variety of toy dinosaur there was.  Of course, once Aiden learned all of their names, he quickly lost interest.

Two years later, and two years wiser, I can clearly see what a pathetic goal this was.  I have, instead, watched as he naturally developed new interests, simply by being exposed to different subjects, and the world in general. 

And now, I wonder, so what if he never had developed new interests?  What would have been so catastrophic about a little boy loving trucks more than any other toy in the world?  Nothing.  Not a thing.

It's okay if dinosaurs are boring.  It's okay if your child, on or off the spectrum doesn't like the newest craze, or the topic that is deemed "typical" for their age group and gender.  Who cares?!  Be wary of goals that are set by others as important for your child...  Let's lose the goal of having our kids blend in.  Instead, let's focus on developing our whole child, and appreciating their areas of interests...letting them be windows into engaging play, meaningful conversation, and use their interests to help them develop and learn other things.

And while I'm fessing up...I might as well admit to this too.  I don't watch any of the medical drama series on t.v.  Not the one.