Closure for the Sock Saga...

On the heels of Riley destroying throwing away his black striped socks for reasons I will never know…here is an update that, if you follow us on Facebook, you will already know about. Otherwise ummm…why aren’t you following us Facebook?!?!?

At R's request he went to buy some socks at Walmart with his cousin Sara after work experience. He came home with 2 packs of socks. Socks that he has never, EVER had before. He picked them out, paid for them and seemed quite excited about it all.

Conversation he had later with G over Mr. Noodles:

G: So I hear you bought some new socks today.
R: Yeah I did!
G: Where did you buy them?
R: At Walmart with my cousin Sara.
G: How many did you buy?
R: 2 packs.
G: How much did they cost?
R: *Without hesitation and very confidently*   2 dollars! 

Ummmmm....not exactly. One of the downsides of always using a debit card?!?!?

Keeping my fingers crossed that he will wear them. 

UPDATE:  He has been wearing the NEW socks happily every day since. Then again...there are no other socks in his dresser drawer.  :D

Foiled by a Hamburger...

Remember how I said I was not going to video Riley for Operation IFO ever again??  Well.  I lied.  Hey I believe I also said that it would be my last blog post about Operation IFO.  Yup.  Lied.  Again. 

Riley has been testing me. BIG time! Believe it or not I find it very amusing especially when it comes to his ingenious attempts at avoidance. Typical teenage behaviour indeed and I am damn proud of him.

To keep things moving forward I decided to switch things up a bit in Operation IFO.

The first time went like this: 

Me:       (Of course I start with the positive to catch him off guard.)

For dinner tonight I’ll make you oyako-donburi. (Modified Japanese Rice Bowl)

R:         Yes!

Me:       Riley I have an idea. 

R:         Looking a little leery.

Me:       I can make you carrot soup or YOU can make hotdogs.

R:         Thinking…thinking…  Carrot soup. I’M HUNGRY! (Translation: I don’t want to eat ‘X’!)

Me:       Wait. Whaaaaat?!?!?  You…you don’t want to make hot dogs?

R:         No thanks. You can make it.

Me:       Dazed and confused…off I go to make carrot soup. 

The second time I was going to make sure he picked hot dogs. I would offer…wait for it…a hamburger! Bwaaa-haaa-haaaa!  

Me:       Riley would you like a hamburger for lunch or do you want to make hot dogs?

R:         Thinking…thinking…   Carrot soup??? 

Me:       Ummm…no. Hamburger or you cook hotdogs.

R:         Thinking hard…  

Me:       Waiting…waiting…

R:         Barely audible…  hamburger

Me:       Pick up chin off floor…go make a hamburger.

If you can't see the video, click here to play.

You probably noticed that I am not making any eye contact (although I was straining to look at him without turning my head) and no attempts at conversation as that would result in loud protesting on Riley's part.  :)

Thankfully the camera battery lasted until after the first bite…barely. I am not sure who is keeping who on their toes anymore?!?!?  

Aging Out...

Image: freedigitalphotos.net   

What is Riley going to do now?

Have you thought about what Riley will do in the future?

Do you think Riley will ever be able to live on his own?

All valid questions.

Questions that I have thought about all too often yet have pushed to the back of my mind because it caused me to hyperventilate in years past. OK. I still hyperventilate.

Only now…we are there.  Or here.  Right now. *grabs brown paper bag*

Riley finished high school and turned 19 at the end of June. After 14+ years of ups and downs; forwards and backwards; challenges and successes in Riley World; we were all done. So we decided to take the summer off. A hiatus…sabbatical…if you will.

Then September came.

It has now been 3 weeks since what would have been the start of school for Riley. We are in the process of getting services/funding organized but this all takes time. In the meantime I decided we would work on his diet, some life skills at home, continue some type of work experience 2-3 times/week as well as community outings 4-5 times/week. It has been a change in our daily routine. A significant change. He is home full time and for safety reasons he can not be left at home alone. 

Something Different.  Not unusual in Riley World. We have been doing something different for over 14 years. Yet something WAS very different and I could not seem to put my finger on it.

Image Credit:  freedigitalphotos.net 

I am old. There. I said it.

OK so not old old. Just old enough that I am well…just tired. Not tired as in not enough sleep kind of tired like when he was little OR tired/exhausted from the emotional and physical roller coaster during the early years of Riley World. Just tired of doing stuff.

Last week I was sitting in a Transition Committee meeting with area school district personnel, representatives from community societies/government agencies and parent advocates. After the meeting was over I sat talking with a few of them. We decided that Riley and I are taking a “Gap Year” of sorts. Heck. Lots of kids took a gap year after high school. Right??

Yes. Yes…I liked it! I felt as if a load had been lifted. I felt refreshed. Ahhhhh...  

So for the next year I will be blogging about Our Adventures with Riley: The “Gap Year”!  Should be interesting to say the least.   :)

Riley World Enters Adulthood...

What a crazy couple of weeks! If you follow me on FB...wait...whaaa...you don't?!?!?   Oh.   Ummm...this is a little awkward. Weeelllll...you can either click on the FB icon over on the right or any of these red words and you will be kept in the loop on the latest news in Riley World.  :)

Today will be Riley's last day of high school FOR. EVER. aaand he will be turning 19! Gah!

I know I have been promising to blog about all his grad festivities. To be honest it has been more overwhelming than I expected so I have been operating on a day-by-day basis and staying offline for the most part. Once I get my head wrapped around everything I am sure I will be able to blog about it or ummm...not. Eeep.

But for today...it is a special birthday in Riley World so that is what we are celebrating. If you manage to stay tuned in for the entire ~3-1/2 minutes you will get to see some of those soon-to-be blogged about moments.

How was THAT for a teaser???

Click here or on the photo to see a slideshow/video of the first 19 Chapters in Riley World **

Happy 19th Birthday Riley-man! We are all so proud of you!

** I apologize for missing TH and KP...I could not "locate" pics of you and R.  :(

R's got SOUL!!! (as In a Patch)

This was going to be a #WordlessWednesday post but I realized this pic needed a bit more of an explanation.  

It was a beautiful, sunny day yesterday and as we were driving home (as usual R was riding shotgun; G was in the back) I did a double-take at R's profile. There was something sticking out just below his bottom lip! WTH!?!

Of course when we got home I tried to take a pic. R was having nothing to do with that. So instead I found this pic of R's Movember Moustache (look how much it filled in) and did a little photoshopping of my own. It is the part in the yellow circle in case you couldn't tell.  :) 

I am SO not ready for this!

Coming to Grips with the "Number"...

70 is the number.  An IQ of under 70 is the score that historically has been used to define “mental retardation” or what we now refer to as “mentally handicapped” and is the number (plus or minus 3-5 points) currently used to determine eligibility for certain adult services where we live. There has been much controversy around the issue of determining services based solely on this number. I admit I am not up on all the issues as I tend to operate on a need-to-know basis when I get freaked out. It is a strategy that works for me.

When Riley was first diagnosed with autism back in 1999 just before his 5^th birthday, I went through the whole gamut of emotions. Reading all the assessment reports was overwhelming. Back then we did not have a number although the words “mildly mentally handicapped” were mentioned a LOT along with “significantly below average performance” and “a severe delay in the development of comprehension skills”. Fourteen years later seeing those words is not any easier. Back then I chose to focus on the positive comments like “teachable little boy” or “displayed a developing sense of humour” and in his most recent assessment “delightful young man who is eager and works hard”.

It is a number which although describes Riley’s cognitive/academic abilities does not describe what he can do or who he is. Some individuals with extremely high IQ’s may be unable to function on a daily basis due to a variety of limitations in other areas of major life activities. Conversely some individuals with lower IQ’s, with proper supports, are able to function and live independently. So what does the number mean for us?

In the DSM-IV (page 43; paragraph 318.0) Moderate Intellectual Disabilities is described, in part, as follows:

"Most of the individuals with this level of Mental Retardation acquire communication skills during early childhood years. They profit from vocational training and, with moderate supervision, can attend to their personal care. They can also benefit from training in social and occupational skills but are unlikely to progress beyond the second-grade level in academic subjects. They may learn to travel independently in familiar places. During adolescence, their difficulties in recognizing social conventions may interfere in peer relationships. In their adult years, the majority are able to perform unskilled or semi-skilled work under supervision in sheltered workshops or in the general workforce. They adapt well to life in the community, usually in supervised settings."

Yup...I would say that is a fairly accurate description in R's case. In Riley’s latest assessment report (September 2012) it was written:  “He has well developed rote skills and is able to read words and spell within the low end of the average range.” and “…so much potential and sparks (good rote skills).” Low end of the average range. That statement?  Music to my ears. There is so much more to these assessments than just a “score”. There are so many other factors that I do not have the knowledge or expertise to explain so I won’t even try. 

So where does that leave us? For some individuals like Riley the number is not a concrete number. His wide range of abilities make it difficult to assign a single number as his IQ. Overall his number is somewhere between 45-53. While this number was a little disheartening to hear, I needed to keep reminding myself that it was indeed only a number. The number does not define who Riley is or where he will be in the future. So we will keep plugging away as we enter this next stage of Riley World. 

In the meantime I will file away Riley’s latest report with all the others and only bring it out when I need to. For now the waters are calm and we are getting ready to celebrate Riley's graduation from high school in June. Pretty sure I will be in the fetal position cowering under the bed by the end of July. 

Getting all "Suited Up" for Graduation!

Image from MorgueFile

High school graduation is just around the corner. For some of Riley’s upcoming grad festivities “proper” dress wear, while not required, would be a good idea since I am pretty sure most kids will not be wearing running pants and t-shirts. You never know though…I could be wrong. So in preparation G had Riley try on J2’s grad suit jacket. Bonus...R looks up to J2 and actually prefers to wear J2’s hand-me-downs as opposed to new clothes. Yah…how many teenagers can you say THAT about?

The following night R came down to eat his 2^nd dinner wearing J2's suit jacket. He had gone into the closet in the guest room, got the jacket out of the suit bag and zipped it back up. He is a sneaky monkey neat and tidy like that.

Now remember…Riley does not appreciate negative feedback. Even if you are calm, anything you say to him that is negative sounding upsets him. When we insisted he not wear the jacket when eating his dinner he got quite agitated.  “SHUT UP YOU STUPID!  I AM GOING TO WEAR MY JACKET ON!”  And something we had not heard before…“I’M GOING TO KILL YOU.” You gasped didn't you? I am pretty sure I heard something. I know both G and I were taken aback.

Riley is not an aggressive person. If anything he is overly very sensitive to anger/violence. If you look back at those three statements, one is grammatically correct; one is fairly close and one well…is not. For the most part any out-of-the-ordinary phrases that come out of R’s mouth perfectly are usually lines from a movie that he has watched.

So…here was our dilemma. Do we let him wear the jacket because really…it is just a jacket that can be cleaned if he were to get it dirty; do we “give in" to R’s outburst/need to assert himself OR do we stand our ground that what we were asking was a reasonable request for an 18 year old? Not as simple as one might think. Let me explain. When Riley was younger there wasn’t always an option. He needed immediate reinforcement/ consequence to a request/behaviour otherwise he could not make the connection. Now that he is older the immediate response is not as crucial. We have some leeway.

Instead G went to get one of his old suit jackets. R was not having any part of that. Fine. His choice. He finished eating his dinner sans jacket grumbling the entire time. When he was finished he grabbed J2’s jacket from the chair and started to head upstairs. We stopped him. He was NOT happy. “I’M GOING TO KILL YOU.” Cue hitting the wall and screaming “I’M AT A 5!” (This is in reference to the Incredible 5 Point Scale by Kari Dunn Buron). Well at least he was using his words. Oish. Next came the tears. In an effort to diffuse the situation G took R upstairs to show him all his suit jackets and to offer him a choice. R begrudgingly decided on the first jacket...the one G had brought downstairs in the first place. 

About 10 minutes later I went upstairs to check on him. He was not wearing the jacket but had it on the floor around him. He looked up at me and said “I was very angry. I was at a 5.” He was on the verge of tears. I sat down beside him and he broke down. He was pleading with me. “Please. I want to wear J2’s jacket. Pleeeease let me wear it on.”  It broke my heart. The word sure was on the tip of my tongue. He said please. He was remorseful. He so desperately just wanted to wear the jacket. Besides…who was it going to hurt right? J2 had not worn the jacket since his graduation. Yet I just could not bring myself to say yes. Riley is now old enough and has some control over his behaviours. As hard as it can be on the both of us, sometimes he needs a reminder that his behaviours have consequences no matter how trivial they may seem and with R’s cognitive challenges talking it through is not a productive alternative.

When I went to say goodnight later that evening R was still emotional. Tears and pleading to wear J2’s jacket was almost more than I could take. One last Hail Mary and I was ready to accept defeat. I said he could wear J2’s jacket in June for his graduation and we needed to keep it clean until June. R seemed to accept that. That was when the halogen lightbulb blinded me. He now had a timeframe he could work with. 

It has been almost 15 years and I am still learning how one four letter work can make all the difference in Riley World. Oi-vay.

Here is R the following day wearing G's old suit jacket. You can't see but he is wearing shorts with no socks/shoes.  :)

We have since discovered that his need to wear the suit jacket was because James on the DVD cover of "James and the Giant Peach" also wears a suit jacket. Why didn't I think of THAT!?!  

10 Reasons I am an Awesome Autism Mom! #Monday Listicles

This week’s topic “10 Reasons I am Great” was suggested by “Bonny” who blogs over at The Bonny Bard. I am sure many of you are thinking this would be a snap for me. Right?  Ummm…haaallooo?? 

Well like Stasha, I was in a panic. My very first Listicles topic was “My 10 Superpowers” which I pretty much nailed I mean…where I shared my not-so-hidden talents. That’s better. Having to come up with even more ways that I am great was a little too much for this old brain.

Since I have been *ahem* neglecting my blog a little lately, I have decided to kill two topics with one post and go with 10 Reasons I am an Awesome Autism Mom! *patting myself on the back*

1.      I still cut the crusts off Riley’s sandwiches and cut them into quarters. Yes I know he is 18. Need I remind you any visible signs of brown are unacceptable and will result in that quarter or likely the entire sandwich being tossed in the garbage.

2.      I use a small sieve to catch the green flecks in the seasoning packets of R’s Mr. Noodles.

3.      The first time Riley lied to me I was so excited and wanted to high five him! Did I mention he was around 12?  OK slight exaggeration but not too far off. R is brutally honest and the idea of intentionally lying in Riley World well...does not really exist. 

4.      I answer and ask the same questions over and over and over again. Every. Single. Day.

5.      I shop at multiple grocery stores because R only likes certain brands of food.

6.      I sit in the backseat so Riley can ride shotgun.

7.      “If it’s not too late you will call me?” Whenever I go out Riley likes me to call him on my way home and pick him up McD’s (medium fries in a small brown bag and small sprite with no ice please). The reception when I get home is SO worth the $4.35 every. single. time.

8.      I am constantly offering to buy Riley things because, until recently, he NEVER asked for anything…EVER. I would even buy the same DVDs over and over and over again as gifts because that was all R wanted/asked for. You’re welcome Disney.

9.      I am a short order cook and make R a separate dinner pretty much every night. Thankfully he only has about 3 items on his “menu”.

10.   I am only an awesome autism mom because I have practiced the same things over and over AND over again! Need I say more. Oish.  

  Could you say no to this face???

The EEG Experience

Imagine my relief when out through the doors walked a familiar face…the same technician we had 3 years ago when Riley had the ambulatory EEG done. She was wonderful back then and even wonderfuller (yes I know that’s not a real word) now.

She remembered us. Now this could be taken as a good sign or…not?!? I am going to go with the positive. Humour me. She remembered that Riley liked Winnie the Pooh DVDs the last time we were there. (Yes I know it too was in R’s file…she is still wonderful in my books!)  She had 2 DVDs on the counter ready to go. Being well versed in social etiquette R responded with a “No thanks. I don’t like that.” At least he’s polite. *sigh*  Off she took him to pick out something else. Did I mention how wonderful she was? 

When we finally got settled the technician began to ask the usual routine questions. She started with Riley. “How old are you Riley?”  “I’m 18 years old Leanna.” Wait. What? Who is he talking about?  

She continues. “What grade are you in?” Meanwhile I am frantically looking at her to see how she reacts to being called Leanna. “I’m in grade 12 Leanna (again with emphasis on the name).” That’s when I notice the nametag.

I am not sure how long it had been at that point. Maybe 5 minutes. Possibly 10. Probably somewhere in between. Regardless of how long, for all that time I spent talking with her; looking at her; I was too stressed to notice she was wearing a nametag. Riley noticed. What I am able to “filter” out when I am stressed, Riley takes in. This part (sensory processing) of Riley World is a part that can make it difficult for him to be able to cope at times.

Here is an example of how I can only assume it might feel to be in sensory overload. I remember a memory game I used to play. A tray with a number of items would be brought out. You would look at the tray for a set amount of time then the tray would be taken away. You would then have to try and remember as many items as you could. I feel my shoulders reaching for my ears thinking about it. Now imagine playing that game in a dark, dingy basement with poor lighting; there may be a slightly unpleasant odour in the air; rap music (ugh) playing loudly in the background; oh and just for added fun...you need to remember at least 90% of the items. How are your shoulders feeling now???  A little stressed???  This feeling?  I can only imagine to some degree is how it is in Riley World every. single. moment of every. day. I digress. Back to the EEG.

Lovely Leanna. I heart professionals like Leanna. She started by making marks on Riley’s head.  

“Ouch! That hurts!” Lovely Leanna would apologize. R would immediately reply in his sweet voice “That’s OK Leanna.” followed by “Shut up you stupid pencil!”  Replace 'pencil' with other objects in the room. Rewind and repeat multiple times.

Next came attaching the wires.

“Hey! You’re hurting me!” Lovely Leanna would apologize. “Oh it’s OK Leanna.” “Shut up you stupid glue!”  Again…replace, rewind and repeat.

Once again we have come to a new fork in the road. At 18 when Riley is stressed he does not want to be comforted by me holding his hand any more.  He does not want me to cuddle with him any more.  He does not want me to lie down with him any more.  Yes this is a good thing in so many ways (he is, after all, 'physically' a young man) yet I am struggling with how to try and make him feel better? I tried to redirect his attention to the video store and McDonalds (his choice of incentives picked beforehand). When this stopped working I tried saying nothing. I sat beside the bed with my hand on top of the blanket over his hand. It is always a crap shoot with chances of hitting the "meltdown button" getting higher and higher as time goes on. Thankfully we were almost done.

“I’m tired.”  Lovely Leanna would say “I know you’re tired. You can go to sleep in a few minutes.” R came back with “NO! I’m NOT tired anymore.”  Oi-vay.

A few tests to make sure everything was working then it was time to dim the lights and hope that R would fall asleep.

“Shut up you stupid!  That’s stupid!  I don’t want to go to sleep anymore.  This is stupid!”  Again...rewind and repeat. 

In the end Riley did fall asleep. He was more than happy to have everything taken off and head to the video store and McDonald's for a job well done! A small price to pay for a stressful afternoon. I, on the other hand, had a nap and an adult beverage or two when we got home. Results due tomorrow. 

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.  

The Aftermath of Dental Surgery

Well we both survived!!!  I broke the news to Riley the night before he was to get his wisdom teeth out by placing a “social” story at his place at the table. Yes I am a woosie. In my defence he is a visual learner.

Thankfully Riley’s appointment was first thing (8:30) in the morning. On the wise advice of a good friend (who is a nurse) we prepped the back of Riley’s hands (for the IV) with an Emla patch (which is a topical anaesthetic) first thing in the morning. R was muttering all the way to the dentist’s office about being grumpy and me not leaving him. I know…melted my heart…the "me not leaving him" part that is.

Nurse Lisa came to get us right on time. R was weighed and lucky for everybody in the office, we were put in a room right beside the reception area. Oh joy. I asked Lisa if the room was sound proof and when she answered no but not to worry, I suggested perhaps she might want to find some earplugs for the staff and waiting patients as a precaution. Seriously I did say that. She hesitated just that little bit extra before trying to brush my comment off with a very weak and guarded haha.

Lisa was a God send. She talked directly to Riley then would look in my direction for confirmation which in every single case was the total opposite of what R answered. Remember Riley likes to be agreeable and when stressed will pretty much just repeat what was asked. eg. Do you like mouthwash Riley?  Yes I like mouthwash Lisa. R hates mouthwash. Have you ever gargled before?  Yes I've gargled before Lisa.  R has NEVER gargled in.his.life! You get the idea.  

The entire time R kept repeating “Don’t leave me. Don’t leave Riley T.” interspersed with “I’m grumpy.” I stayed with R and tried to distract him while they put in the IV. He “screeched” just a little and yelped “Hey…you pinched me! That hurt!”

Watching R go under was kind of scary this time. He started to cough and gag a little. I thought he might throw up.  Within a few extremely long seconds he was asleep. The procedure took less than 30 minutes. The surgeon was very “perceptive” and suggested I come in sooner rather than later after they were done. Excellent call.  ;P 

I was a little LOT nervous as to how R would come out of the anaesthesia. He was quite disoriented as expected and rather grumpy also as expected. “Shut up you stupid lady!” and “He hurt me!” were his words of choice this time…a far cry and much more pleasant experience than the swearing and cussing the last time around.

Now I am pretty sure they were as happy to let us go as we were to leave. Trust me, I in no way felt rushed or pressured to leave and was more than thankful that we didn’t have to wait around for R to “come out of it” at a leisurely pace. Lisa went over the post-op instructions making sure I knew I could call her later with any questions. I heart people like Lisa!

On our way out the receptionist (who looked like a deer in the headlights) passed me an envelope and said “You can call with your credit card when you get home.” I also noticed they had shut the door to the reception area which pretty much confirmed my suspicions that R was articulating very clearly despite a mouthful of cotton. Not sure who was more grateful to get out of there…her or me. ;P   

For those with young ones who are just starting out, I haven’t always been able to find the humour in situations like these. They were and still are stressful for me (and Riley) yet as he’s grown so has his ability to deal with these types of situations without going into full blown meltdown. For me…humour works followed by a good stiff martini.  :)

Why CAN'T He Keep his Wisdom Teeth???

A week today Riley is scheduled to have his wisdom teeth extracted! YIKES! Actually that is putting it mildly.  I am starting to panic. Thankfully the procedure will be done under general anaesthetic. I am hoping there will be some type of sedation for me as well.  ;P

Now over the years Riley has come a long way since his first visit to the dentist. We had a consultation with the dental surgeon a month or so ago and R sat in the chair looking almost comfortable. Pretty sure after our next appointment he won’t be looking forward to any future visits there!

It is not so much the procedure that I am getting nervous about at this point. Riley has been put under for dental work before. Oh I just want to mention the last time R was sedated for a medical procedure about a year ago, when he came out of it...uhhhh...let’s just say there were a number of "colourful" words spewing from his mouth in, of course, his "outside" voice.  Oish.  It is the post-op/recovery days that are freaking me out. It is the part where he has to ice his face, gargle and rinse to prevent infection and hoping…no...praying he won’t gnaw at the stitches in his mouth. I need to stop now as I am starting to hyperventilate. 

So in preparation I will be phoning ahead to our local “beverage” store to place my order for certain necessities to get me through next weekend. Until then…I will be in my cave cowering in the corner. 

Wish us luck!  D 

Why NOW???

Remember all the hype over Y2K?  It involved years of preparation in order to avoid the possible end of the online world. Life as we knew it was possibly going to come to a screeching halt.

Let’s rewind to 1999 in Riley World. We would have just received R's autism diagnosis.

“What type of program are you doing?”  Me:  Ummmmm…what’s a program??? 

“Are you going to do ABA?”  Me:  Isn’t that the therapy that you hear about people losing their homes? 

“How many hours of therapy are you doing every day?”  Me:  Huhhhh…Riley’s 5 years old.  He can barely watch a half hour of Barney.  How is he going to sit still for “hours” of therapy???

OMG!!!  Are you kidding me???  I remember being so totally overwhelmed and feeling like I missed the boat because he was already 5 and “they” kept talking about the importance of “early intervention” and thinking maybe we were too late and…and…and… AUGH!!! 

For years I had planned no further than a year or two (at most) ahead.  Anxiety  The thought of the future The Unknown and all the “What will Riley be doing?” or “Where will Riley live?” types of questions were too overwhelming for me to think about.  Stress   When R was little sometimes it took all my energy just to get through the day.  Exhaustion

Whether it was sleeping issues  Sleep Deprivation, eating issues Worry, behavioural issues Frustration… it all came down to me being in the right mindset  Preparation  to deal with "the stuff” in a calm  Patience and productive way  Strategies   without having a nervous breakdown (in my case) or major Meltdown (in R’s case) before we even got started.

That was more than 10 years ago yet I can still get overwhelmed and have those ‘What if……?’ feelings today. Only these days it is because Riley will turn 19 in just under a year. Adulthood is staring me right in the face! When did THAT happen?!?

So in preparation for life beyond Riley World, I needed to wrap my head around the fact that this summer had to be THE summer to introduce Riley to some important life skills. I was ready. I was psyched. I was up for the challenge. Riley was going to be in for some “Summer Fun” whether he was ready or not. Tee hee. 

Yes I know we should have started earlier. Here’s the thing…even now at 19, J2 does not do his own laundry or cook meals or take out the garbage on a regular basis. I know…shame on G!!  *wink*  The difference and there is a difference…when the time comes for J2 to have to do these things on his own, he will be able to “figure it out”. Sure there will probably be some burnt meals or shrunken clothes but no big deal. He will survive. Riley…uhhhh not so much. 

We are three weeks into July and have completed 6 loads of laundry, numerous trips taking out the garbage and had a demonstration of washing rice. Thank you.  :)  Here is a little snippet of how R has progressed since his first load of laundry. Still muttering away but a lot less cussing.

Loading the laundry is a breeze. 

Transferring to the Dryer...not quite as "happy".

At this rate Riley will be ready to move out before J2!  LOL!

Text Messaging for Dummies

I swore I would never resort to text messaging to communicate with my kids.  Nuh-uh.  I would insist they actually talk to me in person or call me on our landline (aka home phone). I would not bow down to social media tools. Hands-on parenting was MY generation. Then *sigh* came the “teen years”.  I finally caved and started texting when J2 (then 16 years old) decided any type of verbal communication with the parents other than the occasional grunt here and there took too much effort. 

When I first started texting I had the typical flip phone with the alpha/numeric keyboard that required you to press the number 7 key four times in order to get the letter “s”.  AUGH! Then there was something called Autocomplete which “involves the program predicting a word or phrase that the user wants to type in without the user actually typing it in completely” (Wikipedia). OMG!  The Mother of the Year Committee was at it again with even MORE acronyms to learn. Shoot me now!  Thank goodness for Webopedia’s Text Messaging and Online Chat Abbreviations page.

Well you can imagine how thrilled I was when I got my first text message from J2 and he signed off with “LOL”.  I KNOW!  Can you believe it!  At 16 he was well past showing any form of PDA yet here he was signing off with “Lots of Love”!!!  *wink*

Three years later I like to think I am a pretty accomplished text messenger.  Last summer I even upgraded to a phone with a “qwerty” keyboard - not virtual as I still am old school have principles.  OK so the new phone was mainly because of the letter ‘s’ thing and virtual keyboards are just too freakin finicky for me! 

Like with most everything, there is apparently text messaging etiquette.  According to J2 it is a definite no-no to “drunk text”.  Not that this has EVER happened to moi but for those of us you who just can’t help yourselves; maybe there should be a warning message. 

Just saying...

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.

"All Kids Do That"...or Do They???

I must confess…I am guilty of having said “All Kids Do That”.  Yes…I have.  Why?  Looking back, I think maybe it was my way of trying to relate to a “typical/normal” life.  If Riley did things that “all kids did” maybe he could do other things as well without some of the challenges that seemed to be there so often.    

Over at Yeah. Good Times there is a series called “All Kids Do That”.  I highly recommend you pop over and read some of the posts for some great explanations as to why, as parents of special needs kids, that statement doesn’t always ring true.  I can relate to so many of those posts.  For me I found the frustration I felt sometimes would hit me the hardest when I was exhausted from lack of sleep or from the stress of trying to figure out Riley World.  

When R was younger, I remember the feeling of not knowing what the day would bring.  Would we have a good day, a great day or a challenging day?  Some days I would be thrown a real curve ball…the day would start out great only to end in a meltdown triggered by something that up until then had never been an issue.  Along the way we learned that triggers were just that…the straw that broke the camel’s back so to speak.  Like a domino effect everything that happened up to that point would come crashing down in a heap of tears, anger, frustration, and uncontrollable emotions as a result of a “seemingly” insignificant event. 

I recently commented on a post by @RaisingASDKids entitled “Raising Asperger’s Kids: O is for Obnoxious, Opinionated and Obdurate” relating to a similar experience of mine with J2. Soon after J2 graduated (just last year - 2011) he was really trying to assert his independence along with that “charming” teenager attitude that you hear, and now we get to experience, so much about.  These exact words will be forever embedded into my mind “YOU CAN’T TELL ME WHAT TO DO ANYMORE.  I’M 18 NOW!”  Yea…don’t the teenage years sound like fun???  Only this time I was the one relating an “All Teenagers Do That” story.  I instantly felt guilty.  Here I was doing exactly to another parent about her ASD (Autism Spectrum Disorder) teen what I sometimes found so frustrating when Riley was younger.  What I really wanted to do and hoped I did was empathize and celebrate with CM2’s mom what I thought was “typical” and, my favourite, “age-appropriate” behaviour.   

For all the times that you hear “All Kids Do That” and feel frustrated and defensive I say…keep trying to educate others and spread the word.  As hard as it is to imagine and look too far into the future, for just an instance, think of your child as a teenager.  Would it be that bad to hear "All Teenagers Do That"? Honestly I never hear the remark “All Teenagers Do That” when it comes to Riley because I think it’s highly unlikely to see a teenager having a meltdown in a grocery store or see a teenager playing with a wooden alphabet puzzle or see a teenager excited for the newest Alvin & the Chipmunks movie. 

While it can be sometimes disheartening and I certainly have some down moments (today being one of them), for me it would indeed be a celebration to hear those words “All Teenagers Do That” about R.  

Think about it…D