Let's Be Honest...Transitioning to Adulthood is Scary

A year ago I wrote a post Phase 2: Adulthood…“In Progress” and was excited to start sharing with you some of the plans we had brewing for Riley World: Adulthood.

And then…

I got all overwhelmed and did the old rocking in the corner, breathing into a paper bag thing.

That was a year ago.

Now before I lose any more of you, at least watch this video clip of R's fitness class (part of his new program). Guaranteed to make you smile! 

or Click here to watch the video.

Feel better??  Good.  

*Pats seat*  Come sit by me. I’ll even share my wine with you.

If you have a teen or are fast approaching the teen years, you are probably getting asked those “I-don’t-want-to-think-about-it” questions while plugging your ears and humming incoherently to yourself.

What happens when your son/daughter finishes high school and may not be ready or want to go on to a post-secondary institute? 

What happens if your son/daughter may not be ready for a paying job?

Am I right???  

*Grabs wine bottle*  Here…let me fill your glass up again.

I remember hearing “There is NOTHING out there!”

I remember thinking surely these people were exaggerating. There had to be something out there. Right?  RIGHT??

Well…there are programs out there. Only…the sad truth is there are not enough programs out there. And…what is available may or may not be appropriate, suitable or a good fit for your son/daughter.

So then what?!??!  

*Opens new bottle*  More wine???

Quick recap for you…

Four years ago this September Riley World started school for the last time.

Three years ago we took a much needed “Gap” year.  

Two years ago at a Transition Committee meeting I attended, another parent found a program on the Island that sounded like a good fit for Riley. The program is a family governance model called InclusionWorks! It is an individualized, age appro­pri­ate, community-based pro­gram started by a group of parents for their young adults with developmental disabilities.

In September 2015, after over a year of planning, organizing and an enormous liquor bill…we (a group of parents) formed an InclusionWorks! “grouping or pod” in our community.  

We all had the same goals in mind for our young adults…

Being a part of their community

Getting to know people in their community

Becoming involved in their community.

We started our 2nd semester in January. It’s been stressful and exhausting to say the least. But to see our young adults getting out there in their community in a meaningful way……keeps us motivated and the liquor stores in business.  

Coming soon...programming and the partnerships we have formed. 

Phase 2: Adulthood....."In Progress"

We hear stories about autism when they are “out-of-the-ordinary”. The likes of Dr. Temple Grandin, Ron Suskind “Reaching my autistic son through Disney” or autistic artist Stephen Wiltshire who is able to draw cityscapes following short helicopter rides over cities. But…

What if your child is somewhere in the “middle” of the spectrum?

What if your child may need some type of support for the rest of their life?

What if your child is not “out-of-the-ordinary”?

OR

What if your child will NOT be going on to a post secondary school?
What if your child is NOT ready for paid employment?

OR

What if your child is eligible for funding but there are no monies available?

What if your child is eligible for services but there are no services available?

What then???

What happens in the next 5-10 years when the wave of 1 in 68 (in the US) diagnosed ASD kids are finishing high school and entering adulthood?  Scary isn’t it.

If you are a parent of a younger child; if you are anything like I was…you are probably running off screaming incoherently in the opposite direction. If you are still reading…WOW!! Please leave a comment as to what type of medication you are on so I can get some too  ;) OR if it helps…you can read all about my angst when Riley finished school FOREVER, why we decided to take a “Gap” year and what turning 19 looked like in Riley World.

With our “Gap” year behind us, we are ready to move ahead with this adulthood thing. I am excited to start sharing with you some of our plans for "Riley World: Adulthood" in the coming weeks/months. As my friend Liane Kupferberg Carter wrote in her article “Loosening the Ties that Bind: Growing Up with Autism”:

“But we must. And we will figure out what comes next. We will do this just as we have done everything else these past twenty years. Pulling together as a family.”

~Liane Kupferberg Carter

Yes we will. And as a community we need to start planning for the 1 in 68 diagnosed ASD kids who are coming behind us. We need to start thinking outside the box.

Image Credit

I hope you'll come back and follow the next phase of Riley World. 

Caught on Tape...

Wait no longer. Although one never knows when the mood will hit Riley, G was prepared and shot enough film to put even me to sleep in the hopes of catching Riley’s bowling “Happy Dance”. Lucky for you I edited it down to 2 minutes and 48 seconds of pure Riley enthusiasm and showmanship. 

Since I know you won’t be able to drag yourself away or pause for any explanations I will give you the run down before you start watching. You ARE going to watch right???  *wink* 

It appeared Riley decided to change up his usual grab and throw technique. To start off the evening he approached the lane and did what I will refer to as the double pump or swing toss. Since that did not bring about the desired results, he then resorted back to his trusty grab and throw. SttttttteeeeeeRIKE!!! Woooo-hoooo! One spin-o-rama accompanied by R’s “I’m excited; hear me roar” maniacal laugh and a subtle thumbs up to G. Not exactly unforced I know but I dare you to tell me you aren't smiling once you finish watching the video clip.

A couple of frames later he decides to add some air time to his throw. I am not talking about lofting the ball kind of air…I am talking Air Jordan style. Ha! A little leap after the throw followed by some directional arm action resulting in a spare!  YES! Next a quick jump throw with a half flip of the leg. Nothing this time, so on to something else.

Rather than continue with my monologue I am sure you would prefer to watch for yourself.  :)

So are you smiling???  Hope so.  I am.  Then again...I am his mom.  

Teen "Survival Skills"

We knew the time was coming.  We just didn’t think it would be here so soon.  In just over a year Riley will be considered an adult.  All the questions that we have been putting off are here now…staring us right in the face.  Will Riley be able to get a job after he finishes high school?  Will he attend some type of post secondary program to work towards that?  Will he be ever able to live semi-independently?  All questions regarding R’s “survival skills”.

Well…as luck would have it, I had recently been told about a Rec Centre program called “Teen Survival Skills”.  It is a social club of sorts for teens with special needs.  Some background information about R and “clubs”.  In the past R was not interested in  was not particularly fond of  did not enjoy  OK let’s be honest here…R totally hated going to these types of “clubs”.

He absolutely dreaded arts and crafts (tactile thing) and making snacks like pizza or rice krispie squares were not an incentive at all for Riley.  Remember he is a very “particular” eater.  He would tolerate the sports activities but again it was generally way too noisy and unstructured.  Usually about 10 minutes into the class he was ready to go but damn it, all the other kids seemed to be having a good time, we were going to persevere and have fun too!  You can stop laughing any time.  That would last about another 10 minutes before I was so stressed out trying to make it “fun” for him that we would gather our things and head for the door.  Outside I would be deflated.  R, on the other hand, was ecstatic to be going home.  So who exactly was I doing this for???

What’s different this time?  I mean this is hardly the answer to our questions.  Well the way I look at it, it is more about trying to expose Riley to the “real world” on his own yet within a safe environment.  Is he excited about going?  Excited would definitely be an overstatement however he seems to be “OK” about going which is a positive.  Lucky for R, I don’t think there will be anything of an arts and crafts nature and I’ve been told they are going to be making things like pizza and rice krispie squares.  :) 

Another question I have been getting asked a lot lately is about the kinds of “chores” Riley (and J2 for that matter) do around the house.  I look at them dazed and confused.  Chores?  What are they???  Ever the inquisitive mind, I go look it up.  The definition: “the everyday work around a house or farm”.  Ohhhh…no wonder…we don’t live on a farm and any or all of “the everyday work around the house” surely isn’t their responsibility!  I know, I know…we haven’t done either of the boys any favours.  I could try and justify it but why bother.  *sigh*

So I am gearing myself up to teach R how to do laundry and perhaps a few other chores around the house over the summer.  Feel free to call me on it in September if you are so inclined to make a grown woman cry.

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.        

The Art of Introductions

G had been away this past week so R & I went to pick him up at the airport Saturday afternoon. After our hellos, G introduced Riley to his friend.  Riley shook his outstretched hand and said “Hi Bill”.  G then introduced R to Bill’s wife Dawn.  R looked a little confused then shook her hand and said “Hello DON” (I’m pretty sure R thought of Dawn as only a male name). We all said our good-byes and went on our way.

I was pleasantly surprised at how engaged R was with Bill and Dawn as usually R would prefer to stand on the periphery. R even managed to have good eye contact when saying hello as opposed to looking off in another direction while speaking. It appears the Business Ed Communications and Work Experience courses that he is taking at school are paying off.  I know they have practiced job interviews and meeting people in both classes. 

Here’s the thing…had I only written this first scenario about R meeting/greeting Bill and Dawn everything seemed perfectly natural, even “typical”. However when it comes to R, we’re always looking at the little things, the social nuances that he isn’t always aware of. 

So I’ve added some additional information to that first scenario as an outsider looking in on Riley World:

G introduced Riley to his friend.  Riley shook his outstretched hand leaned in a little tooo close as in...his head was past the point where their hands met and said “Hi Bill”.  Note to self: must work on personal space issues with R. Bill replied with a “Hi Riley” to which R replied back again “Hello Bill.”  G then introduced R to Bill’s wife Dawn.  R looked a little confused then shook her hand (again leaning in just that little bit extra), said “Hello DON” (I’m pretty sure R thought of Dawn as only a male name) with much more emphasis on her name than one would normally say.  Dawn replied with a “Hi Riley.” R replied back again with “Hello DON.” Next Dawn replied with “It’s nice to meet you Riley” to which R replied “Nice to meet you too DON.” We all said our good-byes (R was more than happy to say their names one more time with gusto) and went on our way. I have to say it was pretty darn cute.    

After we got home a couple of things came to mind having watched all of this: 

1.      I remember hearing that when you first meet a person if you either use their name immediately after being introduced or repeat their name three times in your head, you have a better chance of remembering their name at a later time.  I’m going to assume Riley had heard the same thing about using their name right away and about the three times but not the part about repeating their name “IN YOUR HEAD”. Tee hee. 

2.      I was curious as to how Riley shook a person’s hand. When we first tried to teach him, he would either offer his left hand or attempt to “hold” the other person’s hand.  Later that night I was praising him about something and offered him my hand to shake. He took it immediately. Let’s just say the wet noodle or dead fish handshake came to mind. Of course with R one needs to be very, VERY careful what you teach/show him for the very first time because it’s a whole lot harder to “unteach” him so I decided to leave that for another day.   

Meeting new and different people for the first time can be challenging for a lot of people (not just those with autism). I was very encouraged to see Riley interested and engaged in meeting new people. Just have to work on the handshake and "close-talker" syndrome.  :)

Who Doesn't Like a Compliment???

Riley has a very keen eye and he will notice things without even appearing to be looking. 

One of the things we noticed early on was how Riley would immediately comment if someone got a haircut.  The “conversation” went like this: “You got your haircut”; the person would acknowledge; then there would be silence…nothing…zip…end of “conversation”.  Well once again on the upside R was initiating an interaction.  How could we build on this?  Bingo…what better way to make a positive connection with someone than by paying them a compliment and who doesn’t want to hear they look great after getting a haircut?  So, we “gave” Riley some words he could use in this situation, “it looks great!”  He would say it with such enthusiasm too.  :D

Luckily R is a quick study and it only took a few haircuts (thankfully as my hair was getting shorter and shorter) before he had it down pat. What started out as a single interaction developed into this: 

R:         You got your haircut.

Person: Yes I did.

R:         (with super enthusiasm in his voice) It looks GREAT!!!

Person: (smiling)  Thank you Riley.

R:         No problem.  (this was totally unprompted; he picked it up somewhere on his own)

R would then go on his merry way.  It was the other person’s reaction that was so neat to see.  Whether it was a peer or adult it amazed me how three little words from R would bring such a smile to the other person as they walked away standing just a little bit taller.    

Gotta tell you…worked like a charm.