The Best Advice I've Been Given...

Earlier this week Riley’s other mother and I met for coffee with a mom who is at the beginning of their family’s adventures with autism. We talked about advocating for our child, challenges and strengths of our child and family.

I wanted to write something about our meeting because it brought back so many memories of the early years in Riley World. And then I found this half-written post in my drafts folder. How fortuitous.  ;)  I forgot to mention this piece of advice so hopefully I did not scare her off and she will be back here to read this.

If there is one piece of advice I would give to new families starting out it would be something our pediatrician first said to me “You need to do what is right for YOUR family”. Those words helped us get through the maze of “what to do/what not to do” questions in those early years.

Back in the 1990’s, ABA was THE autism intervention. All I remembered hearing were the horror stories of families losing their homes and getting into debt trying to access this therapy.  O…M…G!!!!!   

If G and I did not agree on a therapy 100%; we looked for something else. Whatever we tried we not only had to be comfortable with it but it had to feel right.  In our gut.  Otherwise…we knew it would not work. Yes Riley would struggle at times but if it ever came to a point of distress for him and the rest of us…we would look in another direction.

There is life beyond autism. Life can not be all about autism. There needs to be a balance.

It was wonderful to hear this new mom talk about wanting to “just be ‘normal’” sometimes whether that meant going out to a restaurant to eat a meal as a family or going out on a date night with her husband. So if you are reading this “mom”…good on you! You seem to already be looking for that balance. I loved how you went to get your child his McD’s Happy Meal to take and eat in the restaurant with you and your husband. Not sure I would’ve thought to do that in the early years. And you did it with respect and dignity for both your child and the restaurant staff.

From my own personal experiences, there will be times when it will be hard not to become cynical or jaded. What is important, in my opinion, is to try not to stay in that place. 

That or......get yourself a cave like I have.   ;)

Foto Fun

Whenever I am on Riley’s blog FB page I can’t help but smile at the cover photo. Now I could leave you hanging or make you go to FB to see what picture I’m talking about but since I update the cover photo every couple of months…here’s the picture I’m talking about. :D

This picture was taken on our holiday this past February when we went cruising in the Caribbean. Now I’m sure you have heard the saying “a picture paints/is worth a thousand words”. I mean doesn’t Riley look happy? Well...relatively happy. And maybe even like he’s having fun?? Well my friends…in Riley World there is much, MUCH more to a picture than what is visible to the naked eye.

One of my early posts was “Autism as a Second Language” where I gave an example of one of the most challenging aspects of Riley World…language/communication. Communication is more than “talking” or “words” but for this post I am just going to give you another Riley World example.

First let me explain that this photo-op was not your usual “stick your head through the hole” setup which, as you can see below, Riley is quite comfortable with…ummm...now.

Oh no. This particular one was on a raised cement platform/stage and instead of holes...you stood behind the stand and aligned your head with a body. Not quite as easy as one might think and definitely "Something Different"!!  No one was around to take a picture of the two of us. No one was around for R to model after. Riley was up there on his own. He was not impressed to begin with so in order to get this done as quickly as possible I decided to direct him with verbal instructions. And as it turned out...many, MANY verbal instructions. TOOOO many verbal instructions. Verbal instructions do not work well in new situations in Riley World. Really....I am not new here.

The heads on the frogs actually dropped down backwards to allow for up to 4 people. 

Instruction 1:     “Go stand behind the board Riley so I can take your picture.”

 This should have been my first clue that verbal instruction was not a good idea.

Instruction 2:      “Riley…go aaa-round (motioning with my arm) to the back.”

He stopped just short of going around to the back. SO not happy!!

Yes…I know I should have just gone up there and physically helped him go behind the board. 

But I wanted to get this over with quickly. ;) 

Instruction 3:     “Riley…keep going aaa-round (again motioning with my arm with much bigger

                        sweeping motions). Go BE-hind the picture.” 

He made it back there but stood a little off to one side. 

So...MORE verbal instructions (4, 5 AND 6).

 Finally R was lined up with the empty frog. 

Only...he was about 3 feet back. 

Instruction 7:     “Riley move forward (motioning with my hand). Keeeep coming. (8 and 9)”

Instruction 10:     When he was finally in position…”Riley put your head through the opening.”

And that’s when this happened...

He bent down to try and put his head through the opening just. as. I. had. asked. 

Only....there wasn't an opening. 

He makes me smile! :D

Oh....and why do prepositions have to be so hard!

Watching from a distance...

Riley’s first Special Olympics experience was 5 pin bowling back in September 2012. Since then he has tried his hand at basketball, bocce, club fit, golf, snowshoeing, swimming and track & field. Some he enjoyed right from the start; some he tolerated in the beginning and now enjoys; some he well…no longer participates in. 

It hasn’t always been this way. Oh no. When Riley was little, going to any type of group activity meant a high probability of a meltdown for him AND an extra trip to the liquor store for me.

This weekend for the first time in a long time, I took Riley to his Special ‘O’ swimming. As I watched I couldn’t help but remember the times when I never thought anything like this (me sitting in the stands watching) would have been possible.

I watched as Riley warmed up. I watched as he followed the instructions...well…as best he could.  :)  I watched as he swam back and forth, over and over again working on his front crawl.

Sure he prefers to look forward instead of to the side when breathing. Sure he prefers to use only one arm. Sure he prefers to dive under the water when he gets tired. Sure I prefer to think he has mastered a “medley stroke”.

Will Riley ever want to compete in a Special Olympics Winter/Summer Games?  Probably not. Racing/competing are foreign concepts in Riley World. He is not competitive by nature and is quite happy to run/snowshoe/swim beside someone as opposed to in front. He's very polite you know. ;)

But…as with all things in Riley World…I will never say never.  

The "Prince" and the Pea

It is a well known fact that our house is cool. And we are not talking cool as in the latest styles. We are talking cool in G terms. As in “put on another sweater” or “grab a blanket” kind of cool.

So it should come as no surprise that we would have lots and LOTS of blankets all around the house.

It was not until I was too lazy couldn't find my usual blanket one evening that I noticed there were no other blankets around. Not a single one. Anywhere.

So I went looking.

I found this…

Riley's bed. Can you say "HOARDER"??

That’s right…7 blankets. AND Riley does not just throw them in a pile on his bed. Oh no. He will carefully spread each individual blanket out so there are no visible lumps or bumps. Why yes the letters OCD do pop into my head. 

Now some individuals with autism may also have Sensory Processing (sometimes called sensory integration) challenges. You may hear of children who respond well to deep pressure or who enjoy a weighted vest/blanket, the weight of sofa cushions or even another person’s body on top of them. When Riley was younger he tried a weighted vest. He used it for a while but he seemed to prefer deep pressure touch/massage.

But like a lot of things in Riley World I thought perhaps things had changed over the years and maybe he now liked the feeling of weight (the 7 missing blankets) on his body. 

And then one night I found him like this…

SO not thrilled that I woke him up. Eeep.

Soooo...apparently Riley IS a HOARDER and I do NOT have to purchase a weighted blanket for him. There is also the possibility that he has been reenacting The Princess and the Pea for the past year?!? Although I have no doubt that Riley would pass the royal test for physical sensitivity with flying colours, perhaps I should place a pea under his mattress just in case he should be included in the line of succession. ;)