"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

Only One More Year of High School

Tomorrow is the deadline to submit Riley’s course selection for next year.  It will be R’s last year of high school...Grade 12...Graduation.  YIKES!!!  Yes…I am FREAKING out as I’m writing this! 

In the past I have never looked much beyond the current school year or at best a couple of years down the road.  When R was in elementary school, he/things could change so quickly it was hard to plan too far ahead.  There were times when he would grow in leaps and bounds, times when he would be on a steady course and other times when it seemed as if he was going backwards.  Our mantra was always and still is “one day at a time”. 

Next year Riley will graduate with a School Completion Certificate as opposed to a Certificate of Graduation as he has been on a modified program since elementary school.  R’s skill set has been such that his IEP (Individual Education Plan) goals have always been geared towards his social skills and self-help skills in order to work towards his own independence as opposed to academic goals. 

The high school courses available that are suitable and would benefit Riley have gotten more limited as he’s gotten older.  However, over the past two years Riley has participated in the Work Experience program.  This has been very beneficial and has provided him with hands-on work experience in our community at two different businesses, one elementary school library and the once a week delivery of a local newspaper.  He rides public transit to and from work/home and last year started to ride the bus by himself (that’s an entire blog post in itself).  We still meet him at the bus stop at our end as we live on a fairly busy street and street safety is an on-going concern.  Truthfully, G & I are having trouble pulling back from this one.    

So next year Riley will continue with the Work Experience program and prepare to transition into the “real world”.  R seems to be taking it all in stride.  G & me…ummmm…not so much.

*Deep breaths* One day at a time…D    

   

Linking Up and Showing My Shame...

One of the funniest tweeter/bloggers that I follow can be found at Yeah. Good Times.  Her most recent post was an invite to anybody willing to "show their shame" whatever it may be...within reason of course.  How could I not submit something?!?  This is our "gathering place".  Its true purpose is a table in case you couldn't tell.

It's actually looking rather clean since the laundry has been put away.  Guess I'd better clear it off as company's coming tonight.  Yikes.

You can visit Jill (here's her pic)   here.

Sharing my shame...D

Telling Riley

“When is the right time to tell your child they have autism?” 

There are lots of articles that deal with “telling your child they have autism” or “when is the right time to tell your child they have autism”.  I used to (and still do) break out into a sweat when people talk about it. Why???  Well...we have not actually sat down and had that particular conversation with Riley and he’s 17! We have never hidden the fact that R has autism from him.  As a matter of fact, we talk quite openly about autism in our house.  However I think it all depends on your child and their ability to cognitively understand.  Therein lies the issue for us.

I wouldn’t have a clue how to sit down and actually “tell/talk to” Riley about autism. We have a hard enough time trying to figure out where something might be if it doesn’t make it home from school with him.  As an example, a while back his communication book didn’t make it home.  Not an emergency by any means but this had been happening quite a bit and I like to keep in touch with what’s been happening at school.  It was like a game of 50 questions that seemed to be going in circles.  Here’s the abridged version:

Me:       Where is your black book?

R:         It’s in my backpack.

Me:       Show me.

R:         (Looking around in his backpack.)  It’s not here.

Me:       Is it at school?

R:         No.

Me:       Did you bring it home?

R:         It’s in my locker.

Me:       It’s in your locker at school?

R:         No. It’s at SV. 

            (SV is a grocery store where R goes for work experience).

Me:       It’s in your locker at SV? (hmm…didn’t realize he had a locker at SV and still not sure if he does?!?)

R:         Yes.

Me:       Are you sure it’s not at school?

R:         Yes.  It’s not at school.

Me:       OK.  Let’s go to SV. 

We drive to SV and we go into the store.  R goes upstairs to check and comes back.

R:         It’s not there.

Me:       Are you sure you brought your black book to work?

R:         Yes I’m sure.

Me:       Were you looking at the black book?

R:         Yes I was looking at the black book.

Me:       Where were you looking at the black book?

R:         Upstairs.

Oi-vay.  Thankfully we run into one of the ladies who works there and has taken a shine to R.  Before I put you completely to sleep…we recovered the book.  R had left it on a buggy in the store.  Go figure.

Soooo...anybody want to volunteer to have a heart to heart with R?  Anybody?  Anybody at all???  D 

It CAN Get Better

One of the things I’ve been noticing is how few blogs there are out there written by parents of teenagers (special needs or not).  I’m thinking mainly because if your teens are “typical”, you as a parent have probably moved on to other things whether it is work, travel or even better…play.  Although there are always the frustrations that go along with parenting a teen/young adult, the chances that you would want to blog about them is probably not at the top of your list.  Babies/toddlers/kids are a different breed.  The urge to want to share your vents, rants and raves or just plain laugh/cry with someone…ANYONE is overwhelming.  I found the need for adult conversation and company to be especially therapeutic when the boys were young. 

So many years have past and it's sometimes easy to forget what it was like back when the boys (now 19 and 17) were little and soooo very needy (both of them) although  I can still remember J2 as a toddler/ preschooler standing in the driveway in his PJ’s tears rolling down his face as he waved goodbye whenever I went out on my own.  One of my “alone” times was my once a month book club.  It started as a group of preschool moms and 15 years later we are still getting together.  Some things have changed over the years.  We no longer are racing in with drool/food on our clothes barely saying hello before that first gulp of wine.  We are much more civilized these days…now our clothes are clean.  ;P  I digress…

Fast forward 10 years.  Sure the meltdowns aren’t occurring daily (or even hourly) as when Riley was younger nor are we having to spend the hours of sensory stimulation (usually soft touch to his head/arms/back) throughout the day to help keep him grounded.  Yes he is better able to cope with change without said meltdowns and his need to be constantly moving has decreased substantially to the point where he is able to “usually” stay in class for the entire 80 minutes!  I know…pretty amazing when I think about it. 

Since pictures speak louder than words, here are a few of life with Riley when he was younger.  We finally decided that having a meltdown in order to get a picture wasn’t worth it anymore so we have a large gap where there aren’t many pics of R.  

Riley's 2nd Birthday Party.
He was not happy when it came time to open his gifts.

His cousin Sara's 3rd BD Party.  Riley - 2-1/2 years old.
Even family parties weren't exactly his cup of tea.

A Company Christmas Party (age 3-1/2)
What were we thinking?!?!?

Riley at 8 plugging his ears as
we sang Happy Birthday.  Surely
it had nothing to do with our voices?!?

So when I blog about life with Riley these days, it may seem as if our lives are relatively typical compared to those early years.  We are able to travel, go out to restaurants and even the odd movie together.  But trust me when I say it hasn’t always been that way.  One final picture taken this past New Year’s in Mexico. 

"I'm relaxing" (as R likes to say).
Ahhh...life is good!   Age 17.

 Yes…things CAN get better...D

  

The Aftermath of Valentine's Day

R had been looking forward to Valentine’s Day since February 1^st.  We’d been listening to him recite lines from a Charlie Brown Valentine for 2 weeks.  “Maybe next year I’ll get a whole bunch of valentines.”  There have been many times over the years when R would repeat that line standing amongst a group of friends/parents.  Talk about your really, REALLY awkward pause until I would blurt out “Oh, that’s a line from a Charlie Brown Valentine” followed by a nervous ha ha.  Oish. 

In the last 3 or 4 years, R has gotten very excited about taking in treats/gifts to give out.  But since he’s been in high school…the packaged Valentine’s cards really don’t come into play anymore.  Rats…life was so much easier when a $4.99 box of cards could cover everyone.  So instead I go out in search of individually wrapped chocolates for him to give out.  Not wanting to leave anyone out…I search the school’s website for the names of the Learning Centre staff that I think work with R as well as try to remember R’s favourite “girl friends”. 

I go over the names the night before and again in the morning.  I make a note in R’s communication book so that his SEA (Special Education Assistant) can help him give out the chocolate roses as well as e-mail the Learning Centre teacher.  That should cover all the bases.  Just to be on the safe side, I pack a few extras.  

R comes home sans any chocolates.  Great.  Things must’ve gone smoothly although strangely enough, I never heard anything from his teacher who usually lets me know when R takes anything in.  Apparently both his SEA and teacher were away on Tuesday.  We’re not quite sure who he gave the chocolates to but it appears he handed them out randomly although he did manage to give some to his favourite “girl friends”. 

Maybe next year I’ll write a list for him.  D 

R's First Sports Injury

Boy when things start to go sideways, sometimes you just can’t seem to catch a break.  Riley has been in school for 13 years.  Still when I see the school number show up on the phone, my heart almost skips a beat and I inhale with a slight gasp before answering with a very tentative hhhelllo?  This past Friday that call came just before lunch.  Surely we couldn’t have had another “Step Towards Independence” so soon! 

As it turned out while playing floor hockey in PE, Riley caught a puck with his face.  Yup you read that right.  He was sitting in the bleachers taking a break when it happened.  Luckily it wasn’t a real puck but it wasn’t one of those orange plastic pucks either.  Apparently grade 11 boys prefer something a little firmer so being “men-in-the-making”…they choose to use black duct tape to wrap said flimsy orange plastic pucks in order to give it that little extra ooomfph. 

I was a little quite nervous walking into the school wondering if R would be totally freaking out.  I saw him through the glass sitting in the office with an ice pack on his face.  The minute I walked in he broke down in tears which of course almost made me break down in tears.  I did manage to hold it together…barely.  Now when Riley was a lot younger, this would have been cause to write off the rest of the day/evening and possibly the following day as well.  Yet here he was sitting calmly in a chair with a bleeding nose, swollen mouth, and ice pack on his face.  WOW!  This deserved lunch AND the rest of the afternoon at home!  What's so amazing is that offering those two things just seemed to make everything all better in Riley World.  Are you saying ahhhhhh about now?  No kidding.    

We did go get him checked out and thankfully nothing was broken so he managed to come away relatively unscathed with a bloody nose, fat lip and of course McDonalds on the way home.  =D

I'm hoping this week won't have quite so much excitement...D

Bloggers Block...

I was afraid this day would come…”Bloggers Block”!  AUUGGHH!!!!  I have about 25 posts started; OK…so some of them only have a title or one sentence.  But something's just not working when I have to think to hard.  :(   So to save you from my whining and droning on (like I am now) I think I will try something else. 

Maybe I will update the look of my blog.  Yea…”Something Different” again!!!  Hopefully that will get the creative juices flowing again (hey…stop laughing).  In the meantime, I’ll leave you with my To Do List (courtesy of my Fairy Godmother)...

Don’t stay away…I’ll be back soon!  D

Good vs. Not-so-Good Surprises

Surprises in Riley World have evolved considerably over the years.  What could have been a trigger for a meltdown when he was 4 or 5, became upsetting at age 10, tolerable at 13 and manageable at 15.  What brought about these changes?  Honestly, I really can’t say for sure.  I think it was a variety of things.  Some of it was due to maturity, some things we worked on consciously and a LOT we discovered by fluke.  ;P       

Here are a few examples that can still send shivers up and down my spine:

Good Surprise:   Bringing home McDonald’s for R when he wasn’t expecting it.

Not-so-Good:     Opening the bag to realize they packed a “Large” fries instead of a “Medium” fries.

Good Surprise:   Finding all but one of the Land Before Time plushies.

(I buy them anyways hoping he won’t notice…are you kidding…OF COURSE HE’LL NOTICE!)

Not-so-Good:     Getting all but one of the Land Before Time plushies. 

(YES HE NOTICED…AND he kept asking where the other one was!!!)   

Good Surprise:   Staying in a hotel with a pool.

Not-so-Good:     Heading to the pool (R has goggles on of course) only to find the pool is closed for maintenance.

Good Surprise:   Watching his favourite movie on a handheld device when you’re out.

Not-so-Good:     The battery dies after 10 minutes.

And finally, R’s latest “obsession”:

Good Surprise:    Getting the free Realtor pads of paper used as advertisement.

Better Surprise:  Getting the “Kasha Riddle” pads of paper (she uses glossy paper!)

Not-so-Good:      Getting the pads of paper that aren’t the “right” size.

Although R can still have difficulty expressing his wants/needs verbally, the “not-so-good” surprises are usually “manageable” and fewer and farther between.  I never thought I would agree with the saying “This too shall pass”…yet the possibility doesn’t see so far fetched anymore.

D  

First Times...Steps Towards Independence

Riley is 17 years old and in grade 11. Scary thought I know. One of R's main IEP (Individual Education Plan/Program) goals has been to work towards his independence.  In less than 2 years he will be considered an adult. Yikes! Soooo…what comes next??? 

In an effort to push Riley to “be all he can be” (incidentally, he has risen to the occasion) sometimes things fall through the cracks. It usually isn’t until something out of the ordinary happens before we realize there’s an issue.

For the third time in a couple of months, Riley went to the wrong class at school. This is very unlike R as he has always used a visual schedule so knows exactly what is going to happen and when. Now we are always "tweaking" R’s supports (this time his visual schedule) in order to try and stay one step ahead of him and keep things challenging. Most times it is successful without any repercussions. Unfortunately…this was not one of them.

I got a call from the school this past Tuesday that they couldn’t find Riley was not where he was supposed to be. After going to all his classes, they did a class by class search, checked all the washrooms, and made an announcement over the PA system. Still no Riley. Now I’m 99.9% sure that R would never leave the school. Riley has never been a bolter. Yet as the time passed, I wasn’t quite as comfortable with that .1% …what if??? By the time the second call came that R was still unaccounted for, G was in the car retracing the route to school. Forty-five minutes after the first call, they located Riley in the gym. He was sitting in the bleachers amongst a class being taught first aid. One of the reasons he hadn’t been noticed when they were looking for him was that he had changed into his PE strip (like he normally would for PE) and they had been looking for him in his street clothes.

You may be thinking to yourselves…what kind of parents are you to sit there and not do anything? Did you not consider calling the police if he was missing for so long? How could the school not know where he was? All valid questions especially if your child is younger.  However, Riley is 17 years old and one of the hardest things we’ve had to learn is to try and let go of control (ever so slowly mind you) that “we” need. All the first times are definitely the hardest. The first time he walked into high school on his own, the first time he walked to class on his own, the first time he walked out of high school on his own, the first time he rode the bus by himself…I get stressed just thinking about it. Yet each and every time (with a lot of coaching and practice) Riley has been able to do it and seeing how proud he is of himself is all the incentive and motivation we need to keep at it.

I have to admit after a “first time” event, there is generally a martini and wine involved on my part. After 17 years…it’s no wonder I have grey hair and G doesn't have any.

Trying to hang in there…D