SOOOOOO close...

Woke up to find this… 

You’re surprised, I know. 

 

8 hours earlier…

G and I were heading to bed. It was just after midnight…a little later than usual. Riley was already downstairs on the couch. I went to tuck him in.  

I wasn’t in bed but 5 minutes when I heard what sounded like a crash. I waited. I listened. Nothing.

A few minutes passed but my curiosity got the better of me so I went to investigate.

Riley was still tucked in on the couch but immediately said when I came down “What are you doing down here?”  All seemed to be okay so I headed back to bed. 

 

This morning…

As soon as I came downstairs, I noticed the tree. How could you not?!?!  Well…actually…G did not notice.

We were sooooooooo close!!! 

I called Riley making sure my voice was calm and steady.

He came down and was visibly upset.

I did not have to say a word. He immediately started repeating “It crashed! It broke!! I BROKED IT!!” Then he started slapping his head.

At times like this, he will let me hug him. It is hard to see him so distraught.

As much as we try…HE tries…there are times when he just can not help himself. And so we let it go. It’s just an ornament and the tree has to be undecorated at some point. My only concern is that he may hurt/cut himself trying to clean up the broken shards of glass.

*Lightbulb moment*   

Perhaps next year I will suggest we do it together during day light. Really…I’m not new here. But what confuses me the most…why the heck has nobody thought to do this before either?!?!?

 

From our family to yours… 

Stay safe and may we be able to get closer than 6’ to our loved ones in 2021!

 

If it still sells...don't change it!

 My latest meme…

And if you think this “NEW” recipe has the SAME GREAT TASTE…you would BE WRONG!!! 

You often read about children with autism being “picky” eaters. Picky sounds so negative so I prefer to think of Riley as a “particular” eater.

Picky is defined as “extremely fussy”. 

Fussy is defined as “hard to satisfy or please; a fussy eater”. 

Particular is defined as “exceptionally selective, attentive or exacting; to be particular about one’s food”. OK so this definition is number 7 on the list but it actually does refer to food in the description.

“Exceptionally selective”...Yup, that is definitely an accurate description of Riley’s eating habits.

Have you ever heard of a “supertaster”??  I had not until about 5 years ago even though it was a term coined in the early 1990’s.

“A supertaster is a person who experiences the sense of taste with far greater intensity than average, with some studies showing an increased sensitivity to bitter tastes. It may be a cause of selective eating.”  ~Wikipedia

As with “supertasters”, individuals with autism may have sensory issues towards certain foods that are hard to pinpoint especially in cases where communication is a challenge.

When Riley was little, the minutest change in taste/appearance (even the packaging) of a preferred food could trigger a meltdown for him and a need for copious amounts of alcohol for me. With an already limited diet, decreasing by even one food item was stressful.

I posted this meme on Facebook and was touched by the number of offers to help track down boxes of the “original recipe” Lipton’s Chicken Noodle Soup. Trust me…10 years ago I would’ve jumped on your kind offers.

While I still gasp and my heart may miss a beat (due to PTAD aka post traumatic autism disorder) when I notice “something different”, I don't immediately go into full blown panic mode anymore. Why??  Maybe it's age and maturity on my part. Hmmmm...I doubt that. Perhaps it's because I have figured out the secret to Riley World. Definitely not. Probably more like I am old and tired. 

I believe the real reason is that Riley has aged and matured and is now able to cope/manage changes without the tears and screams of frustration from his younger years. 

Sure, there is still a lot of gagging/dry-heaving but hey…one thing at a time right???

 

 

"Pulling His Own Weight"

For the past year and a half, as part of our program, Riley and his friend “Bob” had been doing volunteer/work experience twice a week. One morning was spent volunteering at a Senior’s Centre where one of the jobs was helping out in the kitchen (unloading the dishwasher and putting the dishes away). It took me a while before I finally had a *lightbulb moment”…THIS could be something Riley could do at home.

As you can imagine, he was thrilled when I mentioned it. 

One of the ways Riley copes is by “scripting”. A LOT! In the past, it hadn’t always been clear what he was talking about. This dialogue is from Cheaper by the Dozen. In the movie they are talking about chores/rules of the household so the "script" is quite appropriate.

For the first time, I only had him unload the bottom rack (plates and utensils). Watching him barely clear the countertop edge as he took the dishes out made me question my decision to have him do this. But then I decided this may be my chance for a new set of dishes. 

To our surprise, on the second attempt, Riley unloaded both racks by himself. We showered him with praise. From that moment, I knew he would start “pulling his own weight” around here.  He was most proud of himself. He was keen. SO keen that the following night he unloaded the dirty dishes while we were sleeping.

I had not anticipated he would take to this so whole-heartedly. So I quickly printed out a sign to put on the dishwasher. 

It worked. Well…at least until the other night. 

You see, it's been 8 months since he started "pulling his own weight" around here. Riley knows the routine. Pretty much every other night we run the dishwasher. He talks about pulling his own weight all…day…long. Sometimes, G forgets to switch the sign but Riley knows if he wants to live here…he has to pull his own weight and unloads the dishes regardless of what the sign shows. 

But then…there are times when G forgets (because I would never) to start the dishwasher.

The other morning I saw this and was most confused.

After some investigation, I discovered G (again) had indeed forgot to run the dishwasher. I figured out that Riley had emptied the dishwasher but had apparently noticed the dishes were NOT clean. He had attempted to wash the dishes BY HAND and dry them before putting them away. I was shocked and so impressed he would problem solve on his own.

So, if you are here soon and notice your glass/plate/utensils are ummmm…not exactly clean. It is G’s fault.

  

Torn and Worn Out

For as long as I can remember, I have thought “If only I could get inside Riley’s brain for 5 minutes to see how he thinks.”  That maybe somehow, it would help me to understand all the “whys and whats” of Riley World. What is he thinking/feeling?  Why does he do that?  What makes him do that?

As the years have gone on, I now think “If only I could get inside Riley’s brain for at least 5 HOURS to see how he thinks.”  Because yes, often times I am still left perplexed and confused as to what makes Riley World tick.

This morning I woke to find this…

Yup, this was the t-shirt that Riley had been obsessing about getting for his birthday. A shirt that was not expensive but not readily available. As in Sherlock Holmes would have been proud of me for actually finding one.

It stayed intact for 4 days, 7 hours and 23 minutes. The hours and minutes are a guess on my part. But some time in the wee hours of June 26^th, the Jamaica Fun in the Sun shirt that Riley was SO excited about receiving on his birthday met its demise. Oh and there were the 3 remaining cans of Sprite emptied into the sink downstairs as well.

As much as I try to maintain a neutral demeanour, I am sure Riley could sense my frustration when I tried to ask him about it this morning. Things started to escalate rather quickly. He got quite agitated, started to yell and I could see his body tensing. I decided to cut my losses because there is really no point in ruining the entire day over 3 cans of pop and a $10 t-shirt.  

You may be asking yourself, “Why do you keep buying him pop if he just dumps it down the sink? Why do you keep buying him the same DVDs?  Why does he keep ripping/shredding his shirts?”  I have been asking myself those same questions for a number of years now. And I got nothing. 

Well, that’s not entirely true. As far as the DVDs and pop are concerned, at 26 years old, Riley’s wants are not anywhere near what a typical twenty-something would want. Quite frankly, his wants are not what any typical teenager would want either. His wants are more in line with the 7-9 year old age group (his cognitive age)…if that. So why wouldn’t I keep buying cases of pop for under $5/case or keep buying the same DVD’s over and over and over again when that is what makes him happy. It sure beats the latest technology of Apple products or vehicles that your typical twenty-somethings want.

When I relate our stories, I am not looking for pity or accolades for that matter. If you can take away some awareness and a little understanding for a world that is different from your own, that is what would make sharing Riley World worthwhile to me.  

And because I like to leave things on a positive note…Thank GOD it's Friday and 5 o’clock somewhere! I'm going to be starting early tonight.  

A Pandemic Birthday Celebration

Yesterday we celebrated not one but two events. Well, to be clear, Riley was only interested in one…HIS birthday. Father’s Day was just a slight blip on his radar and only after some rather blatant helpful hints did he acknowledge it. 

With the pandemic, we were not able to go out for Riley’s usual birthday Udon. But we were able to have my sister’s family over for take-out. They are part of our extended family bubble. It’s the first time we have gotten together and thankfully the weather cooperated so we were able to be outside. 

2 Bowls of Plain Udon - that face says it all!

My sister's family - they sat together at their own table. 

This year Riley’s list had only 4 items on it. The number one desire was a t-shirt. A particular t-shirt. A t-shirt like the one we got in Jamaica when we were on a cruise 3 years ago. Seriously???  He usually starts his birthday list as soon as Christmas is over so it gives me a LOT of time to do the research. Long painful story short…I found one. 

Riley hasn't quite caught on that I wrap presents in different boxes. He was slightly confused as to why he would be getting slippers. 

His new "home" shirt!  He came down wearing it while we were still eating dessert. 

Oh...and because we can't have more than one "home" shirt at a time...found this in our hamper this morning...

Painted Rocks

Has anybody else noticed people posting on Instagram or Facebook pictures of painted rocks they have come across on their walks/hikes. Here’s an example of what I’m talking about.

Photo Credit: Kindness Rocks of SW Florida via Facebook

Aren’t they lovely? I am sure they are even lovelier to discover if you are out walking in the trails around here. I have yet to discover any. Mainly because I have yet to go out walking in the trails around here.  

This past week, Riley’s group decided to paint rocks (via Zoom). Riley is not a huge fan of painting or anything artsy for that matter (although he has gotten a lot better at tolerating art projects over the past couple of years).

They were instructed to go out and collect 2-3 rocks. They also had the choice to use paper. Luckily, we have lots of rocks in our yard so didn’t have to venture too far to get some. They could use either paints or sharpies. Sharpies it is.

They were sent a template of face features to help with the rock monsters they were going to create. How fun!

I set Riley up with his 6 rocks, new set of sharpies and face template. He was ready.

They started with the eyes…

They continued on for about 15 more minutes.

They shared their creations with each other. 

Some love to do art and are very creative. 
Some did more than one rock. 

This is Riley's rock…

Sure glad I collected all those rocks and bought that new set of Sharpies for him.

Mother's Day is Coming

Ever since Easter was considered “finished” in Riley World, R has been repeating his annual Mother’s Day dialogue.  “Next is Mother’s Day. I will make you a card for Mother’s Day. Will I make you a card??”

Today at lunch it sounded like this…

I never get the card he keeps insisting he will make me unless I remind him on Mother’s Day, in which case he scrambles to make one and it looks something like this... 

2016

2017 - If I'm lucky, they make something in his group. 

2018 - Back to last minute the morning of Mother's Day. 

2019 - Cards made in their group.

Don't get me wrong. I LOVE the hand made cards Riley makes me. I especially love how he signs them...you know, just I case I don't know who Riley is.   

My friend posted this on Facebook the other day. It made me laugh. I decided a friendly reminder to J2 might be in order. 

This is how he responded.  

Guess I’m not getting anything from him.  

W is for Wallpaper

Have you ever wallpapered?  Growing up my parents never did.

I think there is/was a time and place for wallpaper. 
I think there are good reasons to wallpaper. 

I went through a phase where I liked to wallpaper. It started with the boys’ rooms. Before J2 was born, I painted the top half, wallpapered the bottom and put a border right through the middle.

When Riley was born and we moved J2 into the other room, I painted the bottom half, wallpapered the top and put a border right through the middle.

When I was updating our powder room, I wallpapered two different patterns and put a piece of wood moulding right through the middle.

I had a theme going on.

And let’s not forget ceiling borders. Popular back in the 90’s. And still around today in homes where the owners are too lazy to take it down because they never painted to the top of the moulding because it was easier not to and now they can’t take it down because that would mean having to paint the entire room which they probably should but are now too old and hoping ceiling borders will make a comeback.

Another good reason to wallpaper is when the DIY “handyman” of the house decides it can’t be all that hard to drywall, tape and mud a downstairs bedroom. Textured wallpaper comes in particularly handy in this case as it can hide any “flaws”. Sort of. Maybe. Not really. But it was a downstairs bedroom and any walls were better than 2x4’s.

This downstairs bedroom was used as a guest room and as a bedroom by both J1 and J2 before they moved out for good.

It has since become Riley’s space. We set up his laptop in there so we can see him run by, between his bedroom and downstairs, every so often throughout the day.

Apparently, Riley is more in tune with home decorating than we are and decided a change was needed. As you know he is more an “actions speak louder than words” kinda guy. 

I wish I could blame this on self-isolation but this was taken just before Christmas.

There was obviously a "loose" seam.

These were taken around the time that we started social distancing. 

Same wall as above only obviously there were more "loose" seams. 

Oh...and the other wall. 

Harder to pick at the seams when you have to balance on top of the hide-a-bed. 

He tried to "hide" some of the evidence in his computer desk. 

Just to be clear, Riley is more than happy to be home. As much as I’d like to blame this on COVID-19…that would be a lie. Am I upset??  15 years ago…I would have been. Today, can’t say I blame him, I’m sick of that wallpaper too.

Q is for Quizzical

I’m sure you thought the title of this post would be “Q is for Quarantine”. It was. Until this happened last night.

While quizzical is not exactly the right word, what I am going to try to write about is a piece of our autism "Puzzle”. But, since we are past “P” and onto “Q”…two words, artistic license.

Let me warn you, this is going to be a long post so go to the bathroom, grab a coffee...please bear with me while I try, in my convoluted way, to explain a part of Riley World.

There is a poem “Welcome to Holland” by Emily Perl Kingsley (click here if you’d like to read it) which compares the experience of someone finding out their child has a disability to having a trip to Italy rerouted to Holland. Some parents love this poem and some do not. When I first read this poem shortly after Riley was diagnosed, I bawled like a baby. I could relate to this poem.

In life, it is hard to understand the “how and whys” unless we can relate to a certain/specific situation. It can be even harder to live every day in an environment and still not understand all the “how and whys”. This is what living with autism can be like.

What I consider to be Riley World’s greatest challenge is communication. If you do not know how to say/explain something or can not understand what is being asked of you…think how hard life would be.

Just in case you decided not to read the poem, not to worry, you’re in luck because I am going to provide you with a scenario of my own. Here goes…

You are being taught a foreign language (for example French) but, only for 1 year. You will get to know some key words/phrases. Just the basics though, like how to say water (or wine) and ask where the bathroom is. But you will probably not pick up on the nuances of body language or facial expressions...that’s covered in year two.

Now, imagine you are a guest at someone’s home in Saint-Tropez. They only speak/understand French. No English. You try and answer as best you can with a simple “oui or non” (that’s yes or no for those who don’t know any French). They ask a question. You answer. There is a pause and you are afraid you may have misunderstood the question so quickly change your answer to the opposite. They ask the same question again, you want to be polite so you go back to your first answer…or repeat your last response. Have you ever been in a situation like this???

Even though Riley is almost 26 years old, his language comprehension level is, at most, at about a 9-year-old level. Often times he appears to understand what you are saying. R has an excellent memory and learns most things by rote. He can say and even do all the right things so you assume he knows what he is doing. Unfortunately, that can be the downside because he may not understand why or what he is learning.  

Now that you have no idea what I am talking about, here’s what brought all this on. 

Yesterday I had to do some minor repairs to Riley’s "New" Puppy. Puppy is starting to show some major signs of hard loving.  

So, in my infinite wisdom, I decided perhaps a patch might help the faux fur loss. Riley was most excited when I explained and even showed him what I was going to do. After I finished my handiwork, his enthusiasm was…well, not exactly…enthusiastic.

Not being new to Riley World, I realized something was amiss. Although many FB friends commented how lovely the heart was, I had a slight inkling (after the fact of course) that the patch might be interfering with where he snuggles his face into puppy. But, I decided to hold steady and avoided his eye contact for the rest of the evening. 

Apparently…my feeling was correct because this is what we woke up to this morning.

Riley had my "sewing kit" (I did not exaggerate when I said I do NOT sew) out on the Island along with the dismantled heart.

See that hole?? That hole was NOT there before. A direct result of scissor damage trying to remove the heart.  

Attempt number 2.  Perhaps a patch under the faux fur with a more even/flat stitch might work???? 

Nope. I learned my lesson and asked Riley if he wanted me to "take it out". He did. Want it out.   

Attempt number 3.  I looked up how to do an “invisible seam” on YouTube because that blanket stitch was a major fail! 

It may be a little "bunched up" but...Riley was happy.

Oh, and an additional clue that Riley was stressed out about the patch…he also unwrapped the entire bowl of leftover Easter candy in the night. In previous days we might find one, maybe two unwrapped ones in the morning.

Long, looooong story short...communication is really hard in Riley World. And even though Riley may have challenges with his verbal communication…he makes his displeasure crystal clear. If you made it this far, thanks for hanging in!  Back to my regular shorter posts tomorrow. 

PS...I'll let you know if New Puppy makes it through the night unscathed.  

O is for #OperationIFO

It is not uncommon for individuals with ASD to have narrow food choices. This can be due to a number of reasons such as sensory sensitivities/aversions or an insistence on “sameness” and not just being “picky”.

If you are new to Riley World, you may not have heard of #Operation IFO (Increase Food Options). I started it the year Riley finished high school (2013) and we were taking a gap year.  You can read about it here.

It was one of many poor choices I would make.

Don’t get me wrong…we have made progress over the years but it takes time. And energy. A LOT of time and SO much energy. SO. MUCH. ENERGY!

Here’s a clip taken within the last year as we tried Mini Carrot Muffins. He has gotten so much better in trying new foods yet…still he is limited in his food choices. 

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

I guess why I tend to drop the ball over and over is that he is basically healthy and rarely gets sick. He has been keeping to his growth curve over the years. Sure, it’s a little inconvenient when we travel but I have gotten used to it and we have learned to adapt.

There are now food therapies and other interventions that were not as available when Riley was little. To be perfectly honest…I am tired. We both are tired and getting set in our ways. Is this a valid excuse for not trying?  Probably not. But in the big scheme of life…is it the worst thing that could happen. And if you think it is…I will have his bags packed and you can pick him up at any time.

N is for No

It seems that one of the first words after mama and dada that a child learns is “no”. Followed closely by the first question…”why?”

Autism can affect speech, language development, and social communication in many ways. If you are interested in a brief explanation, I found this article, “In autism, speech and communication are not the same thing” to be helpful.

Speech/communication was and still is extremely difficult in Riley World. When he was little, not being able to find the words would often lead to ummmm…challenging behaviours. Screeching, yelling, and meltdowns.

Yes, this was at HIS birthday party before he was supposed to open HIS presents. 

When Riley was first learning to talk, we were big on him using “Yes please" and "No thank you”. Especially when he was protesting. We had hoped it might take the sting out of being screamed at just a little bit.

Riley would learn “chunks” of language/phrases from videos he watched or his environment. So, his repeating “Yes please” or “No thank you” was just a group of words he learned as one chunk.

As he’s gotten older, his verbal communication has improved. We have noticed some significant changes over the past couple of years since his group started having speech therapy sessions focussing on social interactions.

As adults, we tend to elaborate/are more subtle with our answers to questions as opposed to a straight “Yes please” or “No thank you” in order to have a social interaction.

In Riley World, less is more. He realizes “No thank you” is actually three words and has dropped the last two words from that “chunk” almost completely these days.

For example, answers to the question “Want to go for a walk?” might look like this: 

Me:  Hmmmm...it is beautiful out but I think I will take a pass thanks.
R:  No.

OR

Me:  The pollen count is extremely high so I’d better stay indoors.
R:  NO!!!

OR

Me:  I’ve got a hang nail but maybe next time.
R:  Nonononononono...NOOOO!!!

Personally, I think I liked it better when he thought/spoke in “chunks”.

Christmas 2019 is a wrap…

We’ve had company staying with us since Christmas Eve so we have been busy enjoying the holiday festivities and I have been off of social media for the most part.

Not to say there have not been any worthy posts. Oh…there have my friends. Lucky for you, I thought to take pics. 

So to recap…here’s how Christmas 2019 went down in Riley World in pictures…

J1 and J2 spent the night so they would be here to start “opening presents” promptly at 9:30am. Both boys were out celebrating until the early hours of the 25^th. One of them was genuinely excited. The other two were genuinely faking it.  

By 9:58am, Riley had disappeared upstairs with his stash.

By 10:00am, J1 and J2 had disappeared back to bed.

J1 was occupying R’s space downstairs. Riley made it perfectly clear that he was not thrilled. “How many nights is J1 staying?  He’s STAYING isn’t he.”  We tried to assure him it was only for the one night. 

After brunch J1 went downstairs to get packed up and found this…

Not unusual for Riley to put things “back to normal”.

I guess it was past check-out time because R had moved all of J1’s things into the bathroom. 

Unfortunately, Fred got sick and we had to play musical beds on the 27^th. The change in routine started the countdown to when they would be leaving. “How many more nights are they staying? 5 more nights??” followed every morning since with the number of nights. Being tactful is not a Riley World strong suit.

Last year we negotiated leaving the tree decorated until January 1^st and it worked!  So, this year I was pretty confident that he would leave the tree decorated until January 2^nd (after our friends leave).

We woke up on the 29^th to this…

Not undecorated but not quite decorated either.

This morning (December 31^st)…

I guess all the changes were too much after all. 

From our family to yours, may 2020 bring all things good...health, happiness and love!

5...More...Sleeps...

Look at that face.  Is that not the face of anticipation??

Last night was the “Special O” Christmas bowling night where the big man shows up to “surprise” everybody. It was at this event 7 years ago that Riley surprised us all and went up to sit with Santa for the very first time.

Ever since, he has never looked back. At age 20, we even got our first Mall Santa picture.

Riley was eagerly awaiting Santa’s arrival. He was ready. He knew what to do…the same thing they have done for the past 6 years. They would call his name, he would bound up to sit on Santa’s knee and the conversation would go EXACTLY like this:

Santa:  What’s your name big fella?
R:  My name’s Riley Tucker.
Santa:  And what would you like for Christmas?
* At this point, Riley would recite his entire Christmas list *  This year's list...
R:  Frosty the Snowman the original TV classic with the cover from Amazon I found it a DVD player 3 movie Illumination Despicable Me 1, 2 and 3 Shrek the Ultimate Collection Madagascar the Ultimate Collection Cheaper by the Dozen 1 and 2. 
Santa:  I’ll see what I can do for you.

This year…well…*gulp*…they did things a little differently. To be more efficient, they called up the teams one at a time and everyone got to sit on Santa’s knee and have a picture taken. There was not a lot of chit chat. I saw things slowly slipping sideways.

This was very confusing for Riley. He had been waiting patiently to have his “conversation” with Santa. He went up, sat on Santa's knee and waited for Santa to start.

Only he didn't. He smiled for the camera. And then he waited. 

Some awkward silence.

Santa gave him his cookie which basically was the “get off my knee and move along” gesture. Riley World has a hard time understanding gestures. So…Riley sat there still waiting.

Look how excited he is about the cookie.

More awkward silence.

And just as I was about to call Riley down, Santa asked “What would you like for Christmas?” followed by the “I’ll see what I can do for you.”

With that...all was right in Riley World and he had his jacket on and was out the door in the blink of an eye. 

Wishing you all a wonderful & safe holiday season!! 

25 Years in the Making...

If you are new to Riley World and would like to take a stroll down memory lane with me...Click here or on the photo to have a look at the first 19 Chapters in Riley World

Twenty-five years ago, you came into this world. Two and a half decades. One quarter of a century. When the heck did I get so old?!?!? 

Little did we know that life, as we knew it, would never be the same.

When you were born, you were the same weight/length as J2 was...only you were bald.
When you were born, 1 in 150 were diagnosed with autism. Today, it is more like 1 in 59.
When you were born, the movie Rain Man was the closest thing to autism that people could relate to.

Growing up, I was never a very patient person. Becoming a parent, well…never changed that.  

After J2, I thought nothing or no one would ever be able to test my patience like he did. I was wrong.

You changed me.

Who knew there would be so many doctors with such long, LONG waiting lists. 
Who knew there would be so many forms to be filled out. So, SO many forms. 
Who knew there would be so many tears. Tears of joy, sadness, laughter and often times, hysteria.

You have brought autism awareness to so many.

In the early years, it was in the form of a high-pitched scream that would silence a food court. Pretty sure it caused hearing loss to anyone within a 5-block radius.  

As you grew and matured, the awareness you spread was not so ummmm…loud and overwhelming for others (or us). I imagine it had to do with the popularity of earbuds/noise-cancelling headphones.

Nowadays it is your charm and endearing qualities that attract people to you.

You changed our world.

You have changed the lives of many.

You continue to change the world.

Happy 25^th Riley-man!  
We are so proud of you!  ❤