Re-Entry...a Rough Ride

After 11 nights away, re-entry into Riley World has been a little ummm…rough the past couple of days.

We usually only go away for 4 nights; 7 nights top. Unless it’s away to visit family or the occasional 10-day trip for special occasions. When I first told Riley, that we would be away for 11 nights, he was not impressed. His immediate response was “THAT’S TOO MANY!”  He eventually came around but in hindsight…I guess it was too many. Especially at this time of year.

The “ready to go home” scripting started around day 6.

“I DO have to STAY on vacation! I am NOT going home on December 18^th! I have x more nights to STAY on vacation.”

Oh...let me just add in here that on day 4, I had decided we would take an overnighter to Disneyland and Universal to break up our trip because Riley loves to see the Disney characters and his "girls" (from Despicable Me). Let's just say it was much more stressful than I had anticipated. And really...I'm not new here. I'll fill you in on the details in another post. 

So as soon as the wheels hit the tarmac…“It’s good to be home! Is it good to be home?  Yes it’s good to be home again!!”

He was so anxious to get home that he did NOT even want to stop at McDonald’s on the way home. As soon as we walked in the door…

FIRST…hat, jacket, shoes off THEN update visual schedule which
basically meant removing any and all PCS related to "vacation".

Next…unpack the suitcases. ALL the suitcases!

I remembered the last time he ummmm…helped me unpack so I was right behind him. Or so I thought. He had already emptied his suitcase and was just getting started looking for the rest of his things in the other suitcases when I walked in. I found the rest of his stuff and was ready to go about my business when I realized he was standing in the doorway just looking at me.

“Where’s my underwear?”

After a frantic couple of minutes, I realized he had already put all his clean underwear (which were in his suitcase) in the laundry. Trying to explain to him that we did not forget his underwear and the underwear he put in his laundry were, in fact, clean underwear and his dirty underwear were the ones in the plastic bags wasn’t going to fly with him. Nope. No way. Cue “mini”-meltdown. 

I say “mini” because as Riley has matured, so has his ability to cope with his stressors and express/communicate his feelings. Still…seeing him SO upset and trying so, SO hard to hold it together is hard. Really hard.

When Riley hits that point of no return…there is no reasoning that is going to happen. Talking “at” him (and that’s what it would be) is pointless. I have to let him try and “de-escalate” on his own as long as he is not causing harm to himself. So he yelled, he screamed, he slapped his hands against the walls, he pulled at his hair, he cried. But then…he let me hold him. After a short time, he calmed enough that he was ready to go occupy himself on his laptop. For a while, he was loud. Very loud. But in a way that we knew he was just releasing his emotions. 

Oh and just to clarify, it was NOT just the underwear that brought these behaviours on. That (the underwear) was, what is referred to as the "trigger" or in more user-friendly terms..."the last straw" of 11 days away from home. 

Thankfully by the next morning he was happy and excited to go on an outing with his group of friends.

And then……

The following day, there was a huge wind storm and our power was out for 7-1/2 hours!!! 

I’m going to stop here.

I’m starting to hyperventilate and it’s too early for a festive beverage.

The only saving grace…the power was on at the bowling alley for Riley’s Christmas Fun Night and his weeks and weeks and weeks of talking about..."On December 20th I'll see Santa at the bowling alley and what will he say to me? he'll say 'what's your name big fella?' and I'll say 'Riley Tucker' then he'll ask me what do I want for Christmas? and I'll say stuffies of Jenny and Charlie and Dory and Nemo, a new DVD player Sylvania with the new remote, Hotel Transylvania 1, 2 and 3 summer vacation 3 movie dvd collection, the Land Before Time 14 complete collection. That's what I want for." came true. Hallelujah. 

Reciting his list to Santa

The moral of this post…compromise on the number of nights we go away. Riley prefers 4-7 nights; this time it was 11.  Next time I’ll go with 10. 

Sensory Overload...How Does He DO IT!!!

What is sensory overload? Wikipedia’s definition is as follows:

 

Sensory overload occurs when one or more of the body's senses experiences over-stimulation from the environment.

Sensory overload has been associated with a number of disorders including autism. When Riley was younger, sensory overload was constant. Understandably so. Everything is “new” when you are little. New experiences, new feelings, new surroundings, new people, new, new, new.

Often times I forget what it must be like for Riley. And then something happens to me (like the dentist yesterday) and I am reminded how challenging it must be in Riley World with everything constantly coming at you full speed ahead. 

To try and explain, my perception of sensory overload goes something like this…I decide to go to my high school reunion. Never mind what year. In anticipation I go out to buy a new outfit (black…ALL black with hopes that black will make my 10lb weight gain only look like 5). I’m a little nervous as I have not seen many of these people for “x” number of years. Nope. Still not telling. 

I Google the venue. A little pressed for time, I am sure I will remember the directions without having to write them down. Why are you laughing?? I happily get in my car. There’s not a cloud in the sky, I turn on some music and off I go. About 15 minutes into the trip I realize the venue is farther away than I thought and I start to worry that I will late. There’s an accident on the bridge so traffic comes to a standstill. Gah! I start to get a little more anxious.

Finally traffic starts to move but then I notice it starts to rain. Just enough to be annoying. Just enough to notice that my windshield wipers are smearing more than clearing. It starts to get dark. I notice that I am now late and I may be a little lost. GAH!!

I have no GPS so have to rely on my aging memory. I think I see the street but I can’t quite make out the sign. I can’t see that far…in the rain…in the dark and why the hell is the music so loud!!

As I drive through the intersection I realize that was my street. I try and find a place to turn around. I turn onto a side road. An unlit, gravel, side road. With potholes. The size of craters. I think I may have left my muffler 10 potholes back. Why the eff are there no damn street lights!!! 

And then…my gas light comes on. Seriously??  I tell myself I can fill up before I head home. I finally get back on track. Only I’m not. Apparently I need East Avenue instead of West friggin’ Avenue so not only am I late…I am on the opposite side of the city. Why don’t they make pants with elastic waists and I think I forgot to rip off the damn tag on my blouse and WATCH OUT YOU STUPID PEDESTRIAN!!!  OMFG!!!  DON’T YOU KNOW YOU SHOULDN’T WEAR ALL BLACK ON A DARK, RAINY NIGHT!!!!!  Oh. Right.

With that I decide to bail on the reunion and head home. I can only hope that I won’t run out of gas before I get there.

That, my friends, is my perception of sensory overload. That is how I can only imagine Riley feels the majority of time. How he DOES it is beyond me.  

As Riley has gotten older his coping abilities/strategies have improved ten fold.

As I have gotten older my coping abilities/strategies have…well…not.  

Ironic isn’t it. 

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!?!  

An Early Summer??? Sure hope not...

After 15 or so years of navigating Riley World, one would think I would be pretty in tune with what’s happening all most of the time. Yea right. Wish that were the case. *sigh* I have come to realize that what I struggle with the most in Riley World is coming to grips with the idea that sometimes things just don’t work out or aren’t meant to be for whatever reason and through no fault of anyone.

In January of this year, Riley was assigned a new SEA (Special Education Assistant). In the beginning things seemed to be going well. Towards the end of February things started to change. For the first time in 12 years at school, Riley started having “behaviours” which were described to me as “aggressive”.  This was very atypical of Riley.

I was confused and inside felt that something was not quite right but just couldn’t put my finger on it. Riley was also having challenging behaviours at work experience which in turn led to having to discontinue working at the grocery store after a year and a half. The confusing part for me was we weren’t seeing these behaviours at home or on weekends (even with a new support worker). What was going on???

Now ever since Riley started school we have been using what is referred to as a Homeschool Communication Book. In the past month, R’s SEA had to be reminded to check and record in his book a number of times. Then there were some conflicting stories and the last straw being a matter of safety.

When you have a kid like Riley who has significant communication issues, as parents we need to be able to trust without a doubt the person who is working with him. We felt we no longer had that trust in R’s SEA and for the first time ever, were not comfortable sending Riley to school.

From Riley’s standpoint this was not a problem.  As a matter of fact R's been off school since last Monday (one week) and is happy as a pig in sh*t!  This past Friday was a Pro-D day (no school for kids). All through the week R kept saying happily "No school on Friday" as if he was finally going to get a day off school. I was like haaalllloooo...you haven't been at school all week in case you hadn't noticed. Oi-vay!

I had mentioned in a previous post, I do not like conflict and will do just about anything to avoid a confrontation. Unfortunately this time we felt we had no other choice than to keep Riley at home. In the meantime I will put on a clean pair of my big girl panties (not sure what men wear in this case), we will go with our gut feelings and hopefully we can work with the school on a plan going forward. 

Wish us luck!

"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

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

  

Monday Meltdown

Remember how excited I was on Saturday morning that school was out for the holidays?  Well it’s only Monday night and I’m thinking perhaps having an entire week off before Christmas isn’t such a great idea after all.  R’s patience is wearing thin already.  In his mind…school’s out; the holidays are here; he has been “waiting patiently to open his presents” long enough. 

Now there is only so much a person can handle before one loses it.  Who knows exactly when, where, how or why it happens?  It just does and of course you are never prepared.  Tonight was one of those nights…unfortunately it was me who cracked.  I mean I knew R was a little cranky tonight.  Why didn’t I just bite my tongue and leave the kitchen after he grumbled at me.  Nooooooooooo. 

Instead I have to prove what a good actor I am.  Whatever R did, I did exactly the same thing.  He yelled at me…I yelled at him.  He slapped the counter…I slapped the counter.  He used his angry voice…I used my angry voice.  He called me stupid and told me to shut up…I called him stupid and told him to shut up.  At about this point I got his attention.  He was definitely caught off guard and responded with “Hey, that’s not nice.” 

I mentioned before how much I love the holiday season.  I consider myself lucky enough to be shopping for presents, thinking about cooking a turkey dinner with all the trimmings and enjoying some lots of holiday cheer with good friends and family.  We all have different kinds of stress and all manage it differently.  Tonight Riley and I both got out our frustrations and came away relatively unscathed (I got a little carried away slapping the granite counter).  Ouch.  If I were to be perfectly honest…I felt pretty relaxed afterwards.  ;P

6 more sleeps…D