Parenting Fail...

“I was very sorry for you yesterday.” were the first words Riley said to me this morning. (Insert knife into heart, turn and repeat.)  

Last night for the first time in a long time we had one of those moments. A moment that happens in Riley World that can come out of nowhere when you least expect it. Yes there is always a reason although not always clear at the time. Hindsight is 20/20 especially in Riley World.

For the past 3-4 days R’s mouth has been in sad shape. Again. :(  What starts out as canker sores turns into full blown open sores on his lips which he can not leave alone resulting in lips so swollen he looks like a case of botox gone bad. Very, VERY bad.

When his mouth is bad he is Miserable (with a capital M and in bold). I understand. I get cankers too. I am miserable when I get cankers and they are minuscule compared to R’s. Yet like many things it is easy to forget the feeling when it is not happening to you personally.

I try to be a little more accommodating when he is not feeling well in order to try and keep the peace. Of all days he had a dentist’s appointment yesterday. That was a no brainer. Reschedule the appointment. Riley was more than happy to remove the dentist from his visual schedule. One point for me. He got to stay home all day and do his own thing. Two more points for me. I made sure to make him his favourite meal (of the three) for dinner. Yup…another point for me. I placed no expectations on him. Until I did.

I called him downstairs for some Tylenol just before he went to bed. He came down grumbling. I suggested he not be so cranky. Yes I have been at this for 15 years now. Yes I apparently will never learn.

He got angry, started yelling (insert his favourite swear words here) and got very agitated. After numerous attempts to calm him down, I, in my infinite wisdom, yelled back. Just so you know I am not totally cuckoo for coco-pops…this shock value response has worked in the past. You know where I am going with this right???  

We managed to regroup and continued on with our evening. Or so I thought. About 30 minutes later R came downstairs and laid face down on the hallway floor not moving or saying anything. Unusual?  Somewhat. Out of the ordinary??  Ummm…okay…a little.

To say that Riley was distraught would be putting it mildly. It has been a long time since he has let me hold him. It has been an even longer time since he has wanted to lie down with me and just “be”. No talking. Just silence with the occasional whimpering (insert knife into heart again here). In the dark. Reassurance for him. A reminder for me. Riley’s emotions and feelings are as in tune as anybody else’s. His autism only affects how he is able to express himself.  

Image from MorgueFile

I wonder how many more times today I will hear “You were angry with me yesterday. I was at a 5.”   Yes I deserve it. *sigh*  Yes I will probably feel guilty for the rest of the day.

Now if you’ll excuse me I am off to look for my noise-cancelling headphones.  :)

Thanksgiving in March?!?!?

Image from MorgueFile

We have all heard of Christmas in July so why not Thanksgiving in March?!? A couple of things happened last week that just gave me the warm and fuzzies all over. As a warning...this post is very high in sugar.

G was away on a golf trip so I had been on vacation too doing the single parenting thing. No. This was not one of the things I was thankful for. Although *tapping chin*...never mind. Granted it is hardly single parenting when your sons are almost 19 and 20 years old and it is only for one week.

Now typically when your kids reach a certain age they become somewhat self-sufficient and able to fend for themselves. I am not talking anything major here just simple things like staying at home alone for a short time or making themselves something to eat. Surely by the time they are ready to leave high school these things will happen. Right???

Image from MorgueFile

Scrreeeeeeeecchhhh!!!!!!!  Not so fast.

In Riley World the word typical does not exist. When in doubt I substitute the word unique. For example Riley has unique behaviours; unique language skills; unique interests. If you are unsure what I am talking about you can click on any of those red words for further explanation.

Back to why I was all warm and fuzzy last week. Now I am sure you have all read about my Zumba experience this past month right?  *sigh*  Red words again people. Go ahead. I will wait. *tap, tap, tap...*

With J2 working, leaving Riley at home by himself was not an option. No problem. I was not that heartbroken to have to miss exercising. My girlfriends thought otherwise. Damn them.  :)  Now both their sons have gone to school with R since kindergarten. Being typical teens they were off working/playing sports so not around this particular evening. However one younger sibling (who we shall call Bee) was. Now R had never really met Bee yet Bee was willing to come “hang out” with R for the hour. Apparently Bee was a little nervous but only after his older brother (R’s age) Zed (cuz I am Canadian) was giving him “helpful hints” on how to interact with R. “Don’t ask him too many questions at once? You’ll confuse him. Only ask him one thing at a time.” Awesome right???  I am happy to report that everything went smoothly as in Bee only saw R once as he whizzed past him on his way to his room. Ha!

The second feel good came when I was trying to book a haircut for myself. I was able to get an appointment for Saturday before Gary got home. Again the Riley factor came into play. My hairdresser (who happens to be a good friend and parent of a peer of R’s from elementary school) replied with this email:  “Please know that Riley is always welcome! I have the TV in the Salon and I can turn it on. Just let me know how I can make it enjoyable for him.” 

SEE…do I have awesome friends or what!!!

Unfortunately not all things were warm and fuzzy. Sometimes reality bites you in the butt when you least expect it. I heard some news that took the wind out of my sails for a bit. I had some tears, a few awkward moments over dinner Saturday night and immersed myself in Candy Crush Saga for the rest of the weekend. Curses Flannery for turning me on to this game!!!

Although I had one less hour to regroup (thanks to DST) I am even more aware and thankful for good friends/family, I will still buy green bananas and yes I am even thankful for my Magnificent Middle (aka muffin top and back fat).  :)

Here is one of my favourite quotes by T.H. Thompson and John Watson:

“Be kinder than necessary, for everyone you meet is fighting some kind of battle.”

Have yourself a great week!

Riley's Social Success Puzzle (The Final Chapter): Friends

What the heck was I thinking?!?!?  As I sat writing and rewriting this, the last and final post in my first ever series “Riley’s Social Success Puzzle”, I found myself bored out of my mind and figured if I was bored with it all, surely everybody else would be too.  Am I right???  No need to answer that…point taken. Anyways, just so that I have some sort of closure, I will write something with the promise that I will never EVER attempt a “series” again. *crossing heart*

So on to the topic of “friends”.  If you were to ask Riley today if he had friends, his answer would probably be yes. Now what exactly is Riley’s definition of a friend?  Honestly I don’t really know although I am almost certain pretty sure that his definition and my definition would not be the same.

One of the things that I really worried about (and still do) with Riley is bullying.  It is one of those things that you hear about way too often in the news and the subject of much Twitter talk lately. As a matter of fact, here are two articles that I saw just today: “Kids with Autism Often Bullied” and “Children with Autism More Likely to be Bullied”.

What could we do to try to reduce the risk of Riley being bullied?  One of the first things that came to mind was that Riley would need to have friends.  Weeelllll…easier said than done.  The chances of Riley being able to make friends on his own were highly unlikely. We would have to help Riley do that and lucky for us, we had our FG (Fairy Godmother) and support of the school to try and make this happen. This is where the “How to Be a Great Friend” and “Friend 2 Friend Social Learning Society’s Autism Demystification” programs were very helpful as an introduction to Riley’s peers about him and his autism. Follow-up activities at school (“Extracurricular School Activities”) helped to reinforce the strategies learned in the programs and afterschool outings with his peers (thanks to great child care workers) helped to build a network of support for Riley.

I had been told by some parents when R was in elementary that there was a “silent code” that nobody was to bother Riley. Kids already had R's back. Now would that carry over to high school where there would be 3-4 times the number of kids with the majority not knowing Riley?  Would all the work done in elementary school pay off?  I mean the unfortunate reality and as unacceptable as it is, there are some kids who will be targets of bullying regardless of special needs or not.

While we have had a lot of success socially for Riley over the years this is not to say there has never been any issues.  Believe me, for every time that something has worked there were twice as many things that we tried that have not worked.  It has all been a trial and error, by the seat of our pants kind of ride.

Riley & a friend on an outing last spring.

That being said, it has been such a relief and so rewarding to hear such positive feedback from parents and staff about the support Riley gets from his peers in high school. Does that mean that he goes out with his typical peers?  Umm…that would be a no but that’s just not realistic.  Riley’s interests are not the same as his typical peers. His communication and social skills make it difficult for him to socialize at the best of times let alone at a party/event where certain how shall I say uh “activities” may be occurring.  :)

So tell me, does it matter if what I think of a friend and what Riley thinks of a friend are different?  For me it does not matter.  We have been so very fortunate to have such a supportive group of kids rally around Riley at school and in the community. If Riley believes he has friends then that is good enough for me.

Riley's Social Success Puzzle (Part 3): Extracurricular School Activities

Earlier I promised to write about some of the things we did as follow-up to the “How to Be a Great Friend” and “Friend 2 Friend Autism Demystification” programs that we found to be successful in building a supportive community around Riley so...here we go.

In-class Activity - Making Posters
After the completion of both programs, Riley's teacher assigned the class a project. They were to pick their favourite "Friend Tip" from either program and create a poster.  They were displayed in the classroom and around the school.  

Recess/Lunch Activities
It is pretty much a given that recess and lunch are the most social times at school. These can also be some of the hardest times for Riley to figure out and participate in. Luckily in elementary school, in particular the primary grades, a lot of the time is spent playing. When Riley was younger he was very active and enjoyed most types of physical activity so we just needed a way for Riley to get involved. 

Bocce Ball Challenge
For two years in a row Riley's FG (Fairy Godmother) organized the "RT Challenge Cup". It consisted of four kids (Riley was always one of the kids from his class) on a team from each of Riley's grade classes. It was a round robin tournament with a final "Cup" game with trophies and treats all around.

During the final "Cup" game kids were making signs and cheering on their class team. So cool! 

In-class Activity - "Riley Rules" Book
Another year FG came up with the idea of having R's classmates write a set of "tips" on how to best engage Riley. The students came up with nine tips and the name "Riley Rules" for the booklet. With the generous support from Student Services and the school the booklet was produced which included pictures of Riley and his classmates role-playing each "Rule".  At the end of the year each student received a copy.

I welcome any comments or questions you might have about any of the activities I've blogged about. The final “chapter” (I know you're probably thinking FINALLY) to Riley’s Social Success Puzzle will be about the positive benefits of both programs. The main and, I think, most important one being “friends”. Thanks for hanging in there with this epic post. I promise I won’t do any more.  :D 

  

Riley's Social Success Puzzle (Part 2): Friend 2 Friend Social Learning Society

With Riley’s communication challenges much of his IEP (Individual Education Plan) goals have always been focused around social and self-help skills as opposed to academic goals. We have never wanted to set limits to what Riley might be able to accomplish yet we also had to be realistic in our expectations for the future as hard as that sometimes was. First and foremost we wanted to ensure R had a happy, positive and successful school experience. 

Another piece of what I like to call “Riley’s Social Success Puzzle” was Friend 2 Friend Social Learning Society’s Autism Demystification programs.  The Friend 2 Friend programs offers "a first step" towards fostering friendships for children on the autism spectrum (McCracken).  Friend 2 Friend Social Learning Society is a local not-for-profit organization that was established in 2002. Heather McCracken, the creator of the F2F model and programs, just happened to be a parent at the boys’ school.  Her son Iain and J2 are the same age and were classmates.

Shortly after Friend 2 Friend (F2F) presented their first puppet presentation to Riley’s grade, I went out with the F2F team to observe one of their presentations.  That was it. I was hooked. I am almost certain I would not have believed the impact of the puppet presentation or simulation game had I not seen it for myself. The way the children were engaged throughout both presentations and picked up on ALL the key learning points amazed me. I volunteered my time on the spot and started a new “career” as a puppeteer/presenter.  :D  Never in my wildest dreams would I have imagined that however it turned out to be one of the most rewarding jobs I’ve had to date.

Riley's class participating in the F2F Simulation Game

F2F presentations not only to Riley’s class but to the entire school were scheduled in the following years.  The F2F puppet presentation “That’s What’s Different About Me” for the primary grades and the F2F Simulation Game “Demystifying Autism” for the intermediate grades.  These programs were a great compliment/ balance to the “How to Be a Great Friend” program (which was geared specifically to Riley).  The F2F programs provided the students with information about autism (in general) in a fun, age-appropriate, interactive and sensitive manner while introducing their key concept that “everybody is different in his or her own way and being a good friend means accepting differences.”  


The F2F Simulation Game presentation (pictured) helps participants understand "what it feels like" to have autism.  Visit the Friend 2 Friend Social Learning Society website for more information about all their programs and services.

Yes there are still the times that I beat myself up about whether or not we have done all that we could have.  There are always the “what if’s”.  But when I look at Riley today, he is a happy go-lucky teenager (which is more than I can say for some *wink*) and even though there is still a lot of work ahead of us, isn’t their happiness what we all really want for our kids?

Part 3 will be focussed on the positive benefits of both programs and some of the extra curricular activities that were organized for Riley. I welcome any comments/questions you might have.  

Riley's Social Success Puzzle (Part 1)

At the beginning of December last year, I received an e-mail from a local parent advocacy group Moms on the Move (MOMS) forwarding an article entitled "Trained Peers Better at Aiding Autistic Kids with Social Skills".  Included in the article was a link to this YouTube interview with Dr. Connie Kasari, Center for Autism Research and Treatment at UCLA: 

Ever since reading the article and watching the interview I have wanted to write about our experiences with Riley with regards to this same topic.  Three and a half months later…I have finally put something down in writing. 

When Riley was in grade 2, together with the school and our Behaviour Interventionist (BI), a program “How to be a Great Friend” was introduced. As we all felt Riley would learn best from his peers, the program focused on teaching R’s peers methods of supporting and communicating with him. The program was voluntary and I have to admit I was very nervous as to whether or not we would get many, if any, participants. I had been forewarned that on average there may be anywhere from 4 to a dozen volunteers. The response was overwhelming with over 50% of the grade (not just class…grade) participating. I know…WOW!!! The program was again offered in grade three, thanks to our wonderful FG (Fairy Godmother) who took on the full responsibility of running the program, with even more students participating.

Around that same time (2002) we started receiving some afterschool support.  Up until then neither G nor I was ready to let Riley go out in the community with anybody but us.  His communication skills were limited; what if they couldn’t figure out what he wanted or was trying to tell them or even worse…what if he had a meltdown!  Of course in our minds if we had trouble knowing what R wanted at times how would anybody else be able to figure it out?!?!?  Am I right???  Looking back now, having someone take R out into the community was the best thing EVER for all of us!  It allowed us some time to do things alone with J2 or just to have some down time at home and it gave Riley the opportunity to have some freedom from our tendency to "over-parent". 

One of the things that I think worked very well for Riley was arranging “play dates” once or twice a week after school with the kids that were involved in the program.  This usually consisted of a quick snack and a short play (~1/2 hour) at home before R’s child care worker would come and take both kids on an outing (swimming, bowling, Aquarium, going to the beach/park, etc).  It gave R’s peers an opportunity to practice the skills they learnt while at the same time getting to know Riley outside of the classroom and on a one-to-one basis.  There are so many positive things to say about the benefits of this program and all the extra curricular activities organized for Riley in and out of school that I will write about them in a separate post and I promise it won’t take another 3-1/2 months.            

I truly believe no one program/therapy works by itself or has all the answers and that all skills taught and learned need to be reinforced across all environments as often and whenever possible.  So my next post will be all about the Friend 2 Friend Social Learning Society and their piece in what I’d like to think of as Riley’s social success puzzle.  :) 

Hope you’ll come back to read all about it.        

A Lesson in Patience

I received this from a good friend in an e-mail this morning.  It seemed like a natural follow-up to my previous post More than 2 Sides to a Story about Autism and one of my first posts What Do YOU See?  Don’t be offended and before getting your knickers in a knot, please make sure to read to the end of the story as well as my “observations” that follow.  Thanks!

A lesson in patience …

A woman in a supermarket is following a grandfather and his badly behaved 3 year-old grandson.  It's obvious to her that he has his hands full with the child screaming for sweets in the sweet aisle, biscuits in the biscuit aisle; and for fruit, cereal and pop in the other aisles.

Meanwhile, Granddad is working his way around, saying in a controlled voice, "Easy, William, we won't be long, easy, boy." 

Another outburst, and she hears the granddad calmly say, "It's okay, William, just a couple more minutes and we'll be out of here. Hang in there, son."

At the checkout, the little terror is throwing items out of the cart, and Granddad says again in a controlled voice, "William, William, relax buddy, don't get upset. We'll be home in five minutes; stay cool, William."

Very impressed, the woman goes outside where the grandfather is loading his groceries and the boy into the car.  She said to the elderly gentleman, "It's none of my business, but you were amazing in there. I don't know how you did it. That whole time, you kept your composure, and no matter how loud and disruptive he got, you just calmly kept saying things would be okay. William is very lucky to have you as his grandpa."

"Thanks," said the grandfather, "but I'm William. This little shit's name is Kevin."

Let me just say that I am obviously feeling much better as this made me LOL!  Being a parent of a special needs child whose “behaviours” are often times misread, I have to admit when I first started to read this I cringed at the description (“badly behaved”) of the little boy.  Perhaps I’m hypersensitive and dissect everything waaaaay more than I should as my immediate reaction was that perhaps the little boy had not been properly prepared before going into the supermarket or he had to wear his blue pants because he favourite black pants were in the wash or McD's changed from white bags to brown bags or he thought they were on their way home after the last stop or……oops, this isn’t about me is it?!?  Tee hee. 

As I kept reading I thought to myself wow, what an amazing granddad.  He gets it!  BAZINGA!!!  Gotta tell ya…NEVER saw that one coming!

Enjoy the not-so-obvious!  D

Empathy and a New 30 Day Challenge

I hardly ever get sick.  Sure I get the occasional cold but rarely am I bed-ridden with fever, chills and body aches.  I’m convinced I got hit with this latest flu because I failed so miserably at my 30 Day Challenge to go sans alcohol.  :(    

As a parent of a special needs child, I’d like to think I have become a more “empathetic” and understanding person.  Do we not hope that people will be understanding and empathetic towards our children (and us) when "we" are having a meltdown in the grocery store, shopping mall, restaurant or wherever???  Does the saying “Walk a mile in my shoes” not often come to mind in these situations?

Over the past couple of days while in a state of flu-induced delirium, it struck me that perhaps I’m not as empathetic towards others as perhaps I should be, specifically when it comes to being sick.  I’m not talking life-threatening illness here just your everyday cold/flu sickness.  I have been through a “life-altering” illness, what I refer to as my “full meal deal” - mastectomy, chemotherapy and radiation for breast cancer  five years ago so I do not take illness lightly.

I can think of some simple everyday examples where unless you have “walked that mile”, unknowingly and certainly not maliciously, we may not be as understanding and empathetic as we could be.  For example:

J2, Uncle Stoo & I all have “seasonal” allergies.  For me the “season” has now started in about March and goes straight through to November.  Oh joy!  Stuffy nose, itchy eyes, sinus headache…the entire gamut.  Now……G and my sister DO NOT suffer from any type of seasonal allergies what-so-ever and therefore consider our sniffling and snorting to be somewhat annoying.  Well EXCUSE US all to heck! 

Then there’s the non-drowsy vs. regular over-the-counter medicines.  Back in my 20’s, I thought non-drowsy medications were for wimps.  How’s THAT for being empathetic?  Oish.  NOW if I take anything other than non-drowsy……put me to bed, turn off the lights and see you in the morning. 

Having children is another biggie.  Remember being single and going to friends’ houses who had kids and there’d be toys ALL OVER THE PLACE!  I’d think to myself, gee surely they could have at least gathered all those toys into a pile in the corner.  Come on now…I’m not the only one who thought that, am I right??  It wasn’t until I had kids on the go that I realized trying to clean up on a regular basis was a useless and never-ending battle.  Eventually I too learnt the art of kicking toys out of my path on the way to the kitchen with laundry basket in one arm and some frozen substance that would be dinner in the other.  I mean seriously, why clean up more than once a day (if that) and “TRUE” friends wouldn’t judge.  ;P

Now these examples in the big scheme of things are pretty insignificant and rather petty.  Yet I wonder…do these emotions (empathy and understanding) develop/mature with age and experience for all things in our lives or do we only focus these emotions on issues that are at the center of our lives at any given time?  Wow…that sounded almost “deep”. 

So I’ve decided I am going to conduct my own research with another 30 Day Challenge.  I will try to be more aware of my surroundings and for every time I feel irritated or annoyed (G will argue that would be 100% of the time), I will turn the tables and look at the situation from the other perspective.  Wish me luck!

Any one else want to take on a 30 Day Challenge?  

Think about it…D