Sunday, 27 November 2011

Autism vs. Menopause

I can’t help but notice some similarities between autism and menopause lately.  Of course if you haven’t experienced any form of menopause (pre, peri or post) or never will (the male species) you may not be able to relate to my newest “DOT” (definition: D’s personal theory).  To keep this posting from dragging on and on, I’m only going to comment from my perspective as a person with menopause. 

#1 - Preference for routine…less flexibility:  I was going to have a shower the other morning and noticed that G had cleaned the tub.  Whoa…whoa ladies…I’m sure some of you are thinking how wonderful G must be to be cleaning bathrooms.  Trust me when I say there is not enough space on the World Wide Web so don’t get me started on the topic of G! 

Anyways, I started to wash my hair.  For some reason I was unable to get any kind lather happening.  I was very confused?!?  Thoughts went through my mind… I did wash my hair yesterday; it shouldn’t be that dirty…I don’t think I used a lot of product.   It took me a couple of minutes before I realized I had grabbed the wrong bottle…yes, I was trying to wash my hair with conditioner.  Obviously G had overlooked the fact that the shampoo bottle should be ON THE LEFT!!!  Geeezzz!

#2 – Decrease in ability to multi-task when performing less desirable activities:  I don’t know how many times I go up and down the stairs and it’s not because I want the exercise.  I seem to have the attention span of a gnat and memory capacity of a pea.  Why I can’t remember to put in the laundry AND bring up R’s cheerios is beyond me.  I now have a strategy to lessen the frustration.  I just keep repeating “cheerios…cheerios…cheerios” the entire time.  Unfortunately if the mantra is interrupted…lucky me gets to add another set of stairs to the tally for the day.

#3 – Extreme difficulty processing verbal information:  When my girlfriends and I used to get together back in our 20’s and 30’s, we usually had at least 3 or 4 conversations going on at the same time.  Not all that unusual for a group of women.  We would sometimes cut each other off; we would talk over one another and occasionally even complete each others’ sentences to keep the conversation moving at warp speed.  This is all due to a condition I think most women suffer from, coined by my niece Rebecca, known as “FOMO” aka Fear of Missing Out.  In the last 2 or 3 years, this is no longer possible.  Think gnat and pea.  We have reverted back to preschool days and take turns talking using our good listening ears.  No one interrupts and if you have something to say you basically stop listening to the conversation so as not to forget your comment which will be totally unrelated by the time you get to share it with everyone.  If more than one conversation occurs, this will lead to anxiety and confusion down the road. 

#4 - Sleep Deprivation:  Sleeping patterns have now become a topic of conversation amongst my “maturing” friends.  I have never been a particularly good sleeper so was shocked to hear that some people actually sleep through an entire night without waking up!  For them, waking up just once is considered sleep deprivation.  Give me a break (I’m rolling my eyes here)…moving on.  Waking up 2-3 times a night is not that unusual for me.  However now it’s because my core temperature has risen to over 110 degrees; my eyeballs are floating because I had that sip of water just after dinner or I’m now freezing to death because the sweat from previously waking up has now formed ice crystals all over my body!  I guess I should consider myself lucky as some of my friends have reported having to change the sheets in the middle of the night and it’s not because of leaky Depends.  I’ll leave it at that.       

I guess the one consolation about all of this is at my age…I really don’t care any more.  ;P  D

Thursday, 24 November 2011

Just Another Label

Our book club selection this past month “The Goode Life: Memoirs of Disability Rights Activist Barb Goode” was written by local author Barb Goode.  We were very fortunate to have Barb attend our meeting and share her experiences as a self advocate who has spoken all over the world.  Her life is an inspiration and as a parent of a child with special needs, I would definitely recommend her book.  It was an eye opener into what was and what is possible. 

One of the things Barb wrote about was the use of “labels”.  Something I’ve never been particularly fond of either but unfortunately required in Riley World.  R has lots of labels…so many that I often say he doesn’t have to go to university; he already has a number of “designations”. 

Riley has what I refer to as OCD (Obscure Communication Dialect).  Often times, no means yes and vice versa.  He will make what appears to be a positive comment/observation:  eg. “You’re here with me” and actually mean go away, he doesn’t want you with him.  Then there are the times when he will make a seemingly random remark (as usual taken from a movie) at the most inopportune time (not unlike the McDonald’s episode).  OK, ok……I’ll elaborate.       

One day after school R & I were standing in the checkout line at the grocery store.  He was getting a bit agitated as he was anxious to get home.  I was trying to talk him through it (my first mistake).  Keep it short and simple right?  Since I didn’t…he decided that this was the perfect time to “use his words” and tell me exactly how he was feeling.  Now I know he meant to say he was feeling impatient and wanted to go home but it came out as “Shut up you stupid lady!  That’s a stupid idea!” 

Now I’m sure I’m not the only parent out there with a child with autism, or any other disability for that matter, who wouldn’t just love to get inside their child’s head to see what and how they think.  Since that’s not possible, I have to come to my own conclusions and there are times when I can be waaaay out in left field.  The fact that I’ve lived with R all his life and can still get it wrong…it’s not surprising that he can be misunderstood by others.  As for the more known form of OCD (Obsessive-Compulsive Disorder)…yea, we’re pretty sure R has that too. 

Think about it...D

Monday, 21 November 2011

Sign-up for Updates

I learn something new every day.

If you would like to receive notice by e-mail when I’ve updated my blog, you can sign-up via the “Follow by Email” box on the right.

It’s a fairly painless process to sign up…about two steps. You will only receive an e-mail if I update my blog. Not to worry…if I make more than one update a day (highly unlikely), it will only send you one e-mail per day.

When you receive the e-mail, you can either link back to “Our Adventures with Riley” blog by clicking on the title or read the update which will appear in the text of the e-mail.

I hope you will sign-up to receive updates of my gripping stories of "Our Adventures with Riley".

Thanks, D

Saturday, 19 November 2011

"Something Different!!!"

I’ve been a little preoccupied this past week with a “paying” job!  Sure cuts into my “me” time.  Tee hee.  Anyways, I’m sure you were curious to see what was going to be different this week.  Perhaps some type of interactive game?  3D movie?? or even better…a “different” look???  So as not to disappoint, I went with the “different” look!!!


Why the big to-do about “something different”?  Well when R was younger, anything “new and different” in Riley World was usually cause for a valium and magnum of wine in my world.  While most kids love getting new things and being surprised at birthdays, Christmas or any other special occasion…Riley…not so much.  So I’m sure you can imagine just how excited he would be when a “surprise” fire drill would happen at school.  Not a pretty sight. 


One of the many strategies FG introduced us to was a visual schedule using PCS (Picture Communication Symbols – an example being the picture in the previous post).  This worked particularly well with R.  He’s had a visual schedule at home since early elementary school and it still has its place on our fridge.  He has innate hearing for ripping Velcro and will drop everything and come running from anywhere in the house.  Heaven forbid you try and change it without him knowing and one of the reasons no one in our house wears any type of Velcro shoes. 


As R’s gotten older and has experienced more “new and different” things, his ability to cope with “something different” has increased considerably.  Preparation is key even though, as with anything, things can go sideways at the most unexpected time only thankfully now...not nearly as often. 


Something to think about…D



Friday, 11 November 2011

Our Fairy Godmother

Wikipedia’s (“disambiguation” whatever that is!?!?) definition of a Fairy Godmother is a fairy who acts as a mentor or guardian for a young person.”   


Our Fairy Godmother (“FG”) came to us disguised as R’s first SEA (Special Education Assistant).  We met her when R started kindergarten and she stayed with us for an unheard of 7 years.  This was due in part to some health issues that had come up. 


I don’t know if she was meant to be Riley’s FG or mine.  For whatever reason, she became and still is an extended member of our family.  I often refer to her as Riley’s second mother.  I’m sure she often felt like she was beating her head against a wall (especially in those early years).  “He’s extremely bright you know.  Do you really think he needs to go on community outings?” or “What do you mean by make it meaningful?”   Oish.   

Without her extreme patience, gentle persistence and most of all sense of humour…Riley would not be the person he is today. 


Thank you Fairy Godmother!


Monday, 7 November 2011

Puberty


What happened to that cute little boy with the chubby cheeks, button nose and skin as smooth as a baby’s bottom?  HE TURNED 16, that’s what! 

It started slowly and suddenly overnight…BAM!  Zits…and not just the kind that you can cover up with Clearasil.  Noooooooooo.  They’re the ones that appear like you have a growth on the side of your face that when you touch, a sharp shooting pain goes through your entire body like 1000V of electricity and the roots grow right out through your toes.  You know the ones I mean.  “They” tell you to leave them alone and not to “pop” them.  Oh sure…let’s just have R go to school with a third head which of course he would since it doesn’t bother him. 

What most of us did in private as a teen becomes a family affair at our house.  No, I don’t mean THAT, I’m talking about the zits.  Geeez.  R is extremely intuitive, almost like he has a sixth sense.  You could tell by his body language he knew something was up.  I’m pretty sure it had nothing to do with the hazmat suit that I was wearing but you never know?!?!? 

We’re in the bathroom and “the” scene from Kindergarten Cop (see posting Age Appropriate Movies) is being re-enacted over and over and loud enough that I’m pretty sure I’ve lost most of the hearing in my left ear.  G is being totally ineffective trying to console R.  *sigh*  Still…I persevere.  Ready…set…squeeeeeeeeze!  Ahhh at last…the right side of his face is beginning to reappear.  Good enough.  I think we’ll leave the blackheads for another day.  Grooaaaan….

Isn’t growing up fun?!?!?

Think about it…D


Friday, 4 November 2011

Brotherly Love

There is a creek near our house that is a popular walking spot for families (its wide gravel path can even accommodate those all terrain strollers), people looking for exercise, and pet owners.  Most pets are off-leash which typically isn’t a problem unless of course you have very small children, you have kids who are nervous around dogs or you have owners who let their dogs run amok.  Our boys fall into the second category.        

J2 was in grade 5 or 6 and going for a walk or doing anything, for that matter, with your family wasn’t exactly on his top 10 list of things to do.  It was a beautiful day and rather than have to listen to his mother (excellent decision on his part) he decided to go along with G and R. 

When they got home J2 storms into the house grumbling “I’m NEVER going for a walk with them again!  Talk about embarrassing!!”  I apprehensively asked, “What happened?”  J2:  “It’s dad.  He swore at someone.”  Oish.  Apparently a dog came bounding around a corner and jumped up on R.  The following conversation ensued:

G:         You know, you should really have your dog on a leash.
Lady:    Well I really don’t have to.  It’s an off-leash trail he doesn’t have to be on a leash.

G:         Well that’s not really true.  He has to be under control and he just jumped up on my son who         
            is afraid of dogs and has autism.    
Lady:    Well maybe you should go walk someplace else then.  To which G responded:

G:         Well maybe you should just kiss my A**!

I know I shouldn’t have jumped to conclusions when J2 first stormed in the house.  But I did.  I guess the look of relief was pretty obvious to J2 as he asked me “Why?  What did you think happened?”  When I told him I thought maybe something happened with R, he gave me a look like why would I ever think that?!?!? 

Now I’m pretty sure I’m not alone when I say as a parent, we all pretty much know there will be a time when anything and everything we do will cause our kids to be embarrassed.  I wasn’t quite so sure if the same applied to siblings…specifically siblings with special needs.  I realized then, much to my relief, the thought of being embarrassed by R had never crossed J2’s mind even at that age.    

Thank goodness for brothers like J1 and J2!   




Tuesday, 1 November 2011

Autism as a Second Language

I’ve often heard English is one of the hardest languages to learn.  Having received my first “D” in Grade 9 French…I’m not so sure?!?! 


One of Riley’s biggest challenges is in the area of language/communication which in turn challenges MY language/communication skills.  Oish.    

We were at a playground and I’m thinking R was probably around 4 when we had a conversation that went (as best as I can remember) something like this: 


*Warning: The following conversation contains language which is inconsistent with any therapy.  Use only as an example of what not to say/do. *


Me:       “What are you doing up there?”
R:         “What am I doing up there?”
Me (thinking to myself):  Hmmm…let’s forget about the What and try doing up and down.


Me:       “You’re up there.  I’m down here.”
R:         “I’m up there.  You’re down here.”
Me:       OK…so he seems to have up and down and you and I...just having a little trouble with here and there.


Me:       “Riley can say ‘I’m up here. You’re down there.”
R:         “I’m up here.  You’re down there.”
Me:       Good job Riley!  (YES!  Now let’s switch places and try it again.) 


Me:       “Look Riley.  I’m up here.  Where are you?”
R: (Beaming and looking very proud of himself)    “I’m down there!” 


Thank goodness for SLPs (Speech Language Pathologists)!!!


Think about it...D