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.

A Year of My Yellow Apple

Today maks the first anniversary of my sitting down to the computer and, with great trepidation, starting this blog.  I felt in so many ways like a person talking to herself in public...certain that nobody would be listening, but still feeling the compunction to express myself.

Writing this has taken a lot of nerve for me, I feel like I am wearing my heart on my sleeve.  But I am glad I took the risk.  I have made some great connections with other "autism parents", and I do, very much feel less alone in our daily struggles, and celebrations.  I don't talk about all of our issues, but when I do share, I always feel like the listening ear is a kind one.

A lot has changed in a year.  In my original post, my fear over begininning homeschooling  almost had a pulse of its own.  Now, I see us as a homeschooling family, very much connected in a homeschooling community.  It still terrifies me, but it is doable, and we are doing it.  And yes, I am very, very proud to be doing  what is best for our child, even though it means a lot (like, a lot) of hard work, and many sacrifices.

I still feel like this blog is new, lots on it could be better.  I see all the fancy banners my fellow bloggers have, and I have no idea how they created them.  My little yellow apple pic is still slighty off centre, but I've decided that there is symbolism in that, so it's okay.  I have recieved some blog awards from fellow bloggers, but I have no idea how to "pick up" my award, so I haven't.  Sorry.  I'm not technologically gifted, so this is where my blog may fall a little short.  Oops.

But mostly, it's been a year fillled with great feedback from a lot of people.  So, to all of you who have taken the time to send me a note, either here on this blog, or through facebook, I offer you a heartfelt thanks.  All of your kind words have been a huge help to me in getting the courage to write these posts.  To other autism parents who have taken the time to tell me that they could relate through their own feelings and experiences, you have made me feel less alone.  And, to anyone who has told me that they look at kids' behaviours a little differently now if they see a child act up in public, a gigantic thank you to you, because that, is essence is the point of this blog - awareness.  Our kids aren't bad, they have struggles.  Thank you for recognizing that.

Now... here begins year 2 of My Yellow Apple.

A Boy's Eye View

It all started as a simple Kindergarten social studies outcome.  We had to examine landmarks in our community.  Well, our community being St. John's, I knew there'd be no lack of wonderful architecture.  What I didn't know was that Aiden would absolutely fall in love with the buildings...and subsequently many other world landmarks.

A common family activity for us now is to hop in the van, and drive around town, stopping at all of himself's favourite spots.  A number one favourite is the Basilica of St. John the Baptist, quickly followed by The Kirk, the Colonial Building, Government House and the Rooms.  It's actually a lovely way to spend an evening, all of us together, stopping by Tim Horton's on the way for some coffee, and going for a little drive around.

 The Basilica

The Kirk

Colonial Building

I can't help but think how cute it would be if he could give guided tours of the city, he knows EVERYWHERE by name...if it weren't for those pesky child labour laws. We've exhausted the local library's books on St. John's, and we're now moving on to Big Ben, Eifel Tower, Golden Gate Bridge....the list goes on and on.  I didn't realize that I would learn so much during homeschool!

It's so nice to see a new interest develop, and amazing to watch the amount of information that a bright little mind can suck up.  It's also been fun to watch the many drawings of these buildings that he's been pumping out, with an amazing eye for detail.  Not to mention the many renderings in Lego and wooden blocks.  Future artist? Future architect?  Future engineer?  Who knows.......the options are as limitless as this city is beautiful.

The Chicken and the Egg

School is officially out for summer now, and there are lots of parents out there welcoming the break from packing morning lunches and doing homework.  But I'm willing to bet there's also quite a large group of people who will be spending their summer with their stomachs in a great big knot, because their little ones will be walking through those big heavy doors in September...and that's not very far away anymore.  And they're terrified about how it's all going to work out.  I know, because that great big knot used to be in my stomach.

It really makes me wonder sometimes about the very nature and practise of schools, as they are.  I know that many, many people will disagree with some of my ideas here...but, they are my ideas, so feel free to disagree.  It's just that sometimes I feel like the whole school set up is a disaster waiting to happen for a growing number of kids.  It is designed for the child who can sit quietly, attend easily, follow directions, take part in large groups, handle the many transitions and routines of a school day, not to mention the noises/sounds of a school environment.  Let's face it, this set up is perfect for the majority of kids....but for kids with differences, it is just a disaster waiting to happen.

So, what do we do?  Well, let's take a quick look at what we're doing.  We're educating teachers about exceptionalities, and they are working really, really hard.  We're having alternate learning environments, and filling the school with "accomodations".  But, aren't we having to accomodate an awful lot?  Doesn't that indicate that the "typical" classroom setting, mode of teaching is perhaps not enough?  How many accomodations and exceptions do you have to make before you realize that perhaps the prototype just isn't working.

Imagine if you were selling cars.  For one driver, you had to shift the position of the steering wheel and the pedals.  For another the seats were too far back.  For another, the windshield needed a different tint.  For another you had to change the way the cylinders fired in the engine.  For your next customer, the radio was all wrong.  The next customer simply couldn't function with the interior carpeting....  How long would you go on selling cars before you came to realize that you just needed to shift models altogether????  Can it possibly be that all those drivers are the ones with the problems???  Just a thought.

This isn't an attack on teachers, special educators, administrators or student assistants.  I think that people want to do the best that they can.  But let's face it, it's hard to make every child successful in an environment that just is tooooooo much, plain and simple.  That doesn't mean we don't try...but it may be time to make a paradigm shift.  Instead of trying to make all these kids function in school...how about making schools function for kids????  Smaller class sizes, less sensory-overload, etc, etc.  The answers I do not know.  But I do feel that the kinds of mass instruction and cooperation just isn't possible for everyone. 

And what about our use of early intervention?  How much of it is spent preparing kids to survive a classroom and school, instead of working on key skills.  How much of all our work with children with special needs is spent trying to find ways to make them fit into unnatural situations.  I'm not saying they shouldn't be included...it's just that maybe it's not always the kids who need the fixing.  I truly believe that all kids should get from school what THEY need most, and that all kids deserve an education that works for them.  Not what's easiest to accomodate and to afford.

It's a classic chicken and egg...what came first: the behaivours needed for school success, or the school set up?

You don't know me but...

Today started out like many others, I had an early appointment for my son, just a regular check-in with our child development pediatrician.  Aiden was okay with this, as he had been assured that it was just a "talking appointment", and knew that nothing "would get done" to him.  Oh my.

We were waiting in the hospital waiting room, which, rather inconviently houses a large, run around play area, just right for getting your small child all wound up prior to their appointment.  Aiden was playing, and there was another young boy there, I woudn't guess that he was yet 3.  The little boy was very sweet and adorable, and obviously adored by his mom who followed him dotingly around the cursed play area.  Their closeness was so apparant, and really heartwarming.  It was, in a word, nice.

Next I saw the mom called over, and my heart sank when I saw which doctor had beckoned her.  It was the pediatrician who runs the autism screenings.  Accompanying her was an SLP, I know to be on the autism team.  Suddenly, my eyes were stinging.  I saw them smiling together, and talking quietly, and watched as they led the boy and his mother around the corner to a room I knew all too well.  The room where they run their observations. A room my husband and I had walked into ourselves, hand in hand with our own adorable little boy, who'd just turned 3.
 
I was caught off guard by my reaction...it was as if I had afforded this mom a sympathy I have never extended to myself.  When I was coming out of our appointment, she was leaving at the same time.  I felt such a kinship to this woman, with whom I'd only exchanged a few words...but I felt like I knew her.  Perhaps knew better than her what she might by facing.  I wanted so badly to go to her and comfort her..let her know that it would be okay, her boy would still be her boy.

But, sadly, I also felt a kind of pity  for her.  I felt like consoling her for all the things she was going to have to face.  For how overwhelming it all is in the beginning, and how really, its challenges never fade, they just have a way of jumping around, creating new hurdles, new obstacles... I wanted to tell her that people are going to be mean, that's she's going to have to get to know her stuff, because lots of decisions will have to be made...  she's going to have to grow a thick skin, thick enough for them both.

I wanted to help her freeze time, before they called her back and gave them her judgement.  "He does fall on the autism spectrum."  Once spoken...takes only a few seconds...but changes everything.
I wanted to say, You don't know me, but I know you.  You don't know me, but I'm your sister.  You don't know me, but we're part of the same club, you and I.  Welcome to our sub-culture.  Welcome to being an autism mom...  Hold on tight.

Of course, I never said any of these things, just gave my little boy's warm hand a bit of a tighter squeeze as we walked on past.  I didn't even make eye contact.