Transitioning to Adulthood...NOT for the Faint-Hearted

Life in Riley World can be a hard thing to explain to others. Last week I was out for dinner and a movie with some girlfriends. I was bemoaning how stressed out I’d been feeling lately.

Today a friend forwarded me this article from our local newspaper. “It’s way too hard for families.”: Parents of disabled children fight for support.

The timing of this article was well...timely. 

When Riley was still in school, I kept hearing the stories. “There’s NOTHING out there!”  “There are NO PROGRAMS!!”  “THERE ARE NO SERVICES!!!”

Surely “they” were wrong. There had to be something!  Nobody wants to believe "there is nothing out there".  I sure didn't. 

Parents of younger special needs children can often be heard saying “I can never die.” The worry of who will care for their children; who will advocate for their children; and where their children will end up can be daunting for parents.  

As special needs parents age, thoughts can turn to “I hope I can live just one day longer than my child.”

Unthinkable, right?? 

Sadly, if you have an adult-child who will more than likely require support for the rest of their lives…whether admitted or not, the thought crosses your mind.    

Riley will be turning 23 this June. Since he turned 19 we have been one of the families in this story. Applying for services/funding. Turned down. Advocating. Creating a new program with other families. Re-applying for services/funding. Turned down again. Tired. SO tired. A vicious and exhausting circle.

For the first time since Riley transitioned to “adulthood”, I am feeling beyond discouraged and frustrated. I am disheartened. It’s not a good place. It’s not productive. It’s not healthy.  

Not to worry. I have an appointment with my GP about upping my “happy” pills. When in doubt…up the meds.  
I kid.  Maybe.  ;) 

The Perils of Perseveration

Perseveration is Riley World’s middle name. So “What’s the deal with perseveration?” Well…click on the red words (if you’re reading from my blog) or the blue words (if you’re reading in an email) for a great reader-friendly explanation from my friend Bec.  I’ll wait. *whistling*

Yesterday Riley came downstairs quite distressed about his underwear. His white and grey underwear to be exact. Apparently the night before while getting dressed after his shower, he noticed a teeny-weeny hole just under the waistband. “It’s broken!”  But…he put them on anyways. Shocking. I. Know.

This is what happened to that teeny-weeny hole by morning…

Yup…less than half the underwear was attached to the elastic waistband. He had put what was left of this pair in his laundry basket.

Now typically when R ummmm “rips” his clothes it is due to stress/anxiety. Only took me about 3 years and 87 shirts to figure THIS one out.  If you follow us on Facebook, this will not come as a surprise. Photo proof…

What he looked like when we picked him up one day.

Yes...he was wearing the shirt at the time. 

No...he was not wearing these shirts at the time.

Other times it is because he can’t leave something (a loose thread, a teeny-weeny hole or any one of 1,067 reasons) alone. It bothers him to a point of no return. In this case…the teeny-weeny hole in his underwear. OR…just maybe…he wanted thong underwear instead of his usual boxer briefs. Yea…I’m not buying that either.   

Needless to say R was stressed out about getting some new white underwear. Today. He would have preferred right then and there but we agreed that I would try and find some while he was at his program.

So now the detective work began. Where did I originally buy those particular white and grey underwear??  Because…of course…being a seasoned autism mom…I had cut out ALL identifying labels. I really need to stop being so efficient. ;)  Lucky for me…no-name or generic brands usually mean either Wal-Mart or Superstore.

I managed to find some similar white underwear at Superstore. Not exactly the same but all that they had. As soon as I got home Riley came running down and looked in the bags. I held my breath and showed him the underwear. He eyed them up. I continued to hold my breath. He looked at me. I started to get dizzy. He looked back at the underwear and that’s when I blurted out “These underwear look different but they are just bigger than your other ones and we need to wash them and then they’ll be the same.”  R looked at me and said “Where’s the grey ones?” I don't remember what happened after that.  

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. 

What If???

Two little words in Riley World that have so much more attached to them. 

Stress. 

Guilt. 

Anxiety. 

Self-doubt.

Two little words I must have said a hundred gazillion times back in the early years. (OK. Slight exaggeration probably only a couple million times.)   

What if we had started therapy earlier?

What if we had done more therapy?

What if we had tried ‘X’ therapy?

What if…

Two little words that would send me running full speed ahead into my cave. 

Two little words that were always there in the back of my mind. 


Yet why if it caused me so much stress, guilt, anxiety and self-doubt did I keep asking myself “what if”???

I wanted Riley to be successful.

I wanted Riley to be happy.

I wanted Riley to be the best that he could be.

So what was the difference in Riley World?  What parent doesn't want that for their child. Right?  For us the difference was that our choices could make the difference for Riley.

The difference between being able to be communicate or not communicate.

The difference between being able to attend school or not attend school.

The difference between being able to manage behaviours or risk self-injurious behaviours.

Some of these differences (along with others) continue to be a work in progress.

There was such a huge unknown and it was too overwhelming for me to look 5-10 years down the road into Riley World so instead I could not help but look back and wonder "what if".

Now it has been almost 14 years since Riley’s diagnosis. Knowing that nothing will change what we did or did not do, do I still ask myself “what if?”  You bet I do!  Only now it is not a hundred times a day. 

So what is the difference now? I am almost 14 years older. Eeep. When did THAT happen?!? What we were working towards with Riley is here. Sure I still occasionally ask myself “what if”. Only now the two little words I find myself asking more often are “what will” as in what will happen when we are no longer here.

Scary? 

You better believe it. (This is where I would usually run off to my cave.) Only now I have to force myself to stay put and deal with my stress, guilt, anxiety and self-doubt.

I am not nearly as prepared as others.

I am not nearly as prepared as I should be.

I am doing the best that I can and hopefully that will be enough going forward because Riley is done looking back. 

A Glass Half Empty...

My glass has been half empty this week. Every so often things seem to wear me down. The change in weather…could be; added stress of R’s EEG…maybe; lack of exercise…absolutely NOT! Whatever it was…sometimes things are just blah. I am sure I am not the only one out there that has these moments. Right???

I mean the weather has definitely changed. The rain has started and with DST it seems like it is dark most of our waking hours.

Stressed out more than usual? Well if wearing my mouth guard all day is a sign…OK…slight exaggeration but my teeth feel like they are going to crack from clenching so hard. Since I did spend an awful lot of time in the dentist’s chair earlier this year it would suck  be a total waste of money be a darn shame if anything happened so instead I chose to refill my half empty glass.    

G is of the opinion I should reduce my alcohol intake. Yea…like THAT’s gonna happen! I mean I would…only I have worked really, REALLY hard to get to where I am and I am NOT a quitter!  :)

Sure I could probably use more  some exercise to have more energy and of course for fitness. One of the things that I blame for my recent physical demise is this thing called menopause. It sucks! The other is the fact that I detest exercise more than my muffin top and back fat. *sigh*

So until my big girl panties get too small (at which point I will move on to “Granny undies”…you do remember how I feel about exercise right?) I will restock the fridge regroup over the weekend and repair my rose coloured glasses with some duct tape cuz that’s how we roll in Riley World. 

Be sure to come back on Monday and prepare yourself to be enlightened with this week's Monday Listicles.

The EEG Experience

Imagine my relief when out through the doors walked a familiar face…the same technician we had 3 years ago when Riley had the ambulatory EEG done. She was wonderful back then and even wonderfuller (yes I know that’s not a real word) now.

She remembered us. Now this could be taken as a good sign or…not?!? I am going to go with the positive. Humour me. She remembered that Riley liked Winnie the Pooh DVDs the last time we were there. (Yes I know it too was in R’s file…she is still wonderful in my books!)  She had 2 DVDs on the counter ready to go. Being well versed in social etiquette R responded with a “No thanks. I don’t like that.” At least he’s polite. *sigh*  Off she took him to pick out something else. Did I mention how wonderful she was? 

When we finally got settled the technician began to ask the usual routine questions. She started with Riley. “How old are you Riley?”  “I’m 18 years old Leanna.” Wait. What? Who is he talking about?  

She continues. “What grade are you in?” Meanwhile I am frantically looking at her to see how she reacts to being called Leanna. “I’m in grade 12 Leanna (again with emphasis on the name).” That’s when I notice the nametag.

I am not sure how long it had been at that point. Maybe 5 minutes. Possibly 10. Probably somewhere in between. Regardless of how long, for all that time I spent talking with her; looking at her; I was too stressed to notice she was wearing a nametag. Riley noticed. What I am able to “filter” out when I am stressed, Riley takes in. This part (sensory processing) of Riley World is a part that can make it difficult for him to be able to cope at times.

Here is an example of how I can only assume it might feel to be in sensory overload. I remember a memory game I used to play. A tray with a number of items would be brought out. You would look at the tray for a set amount of time then the tray would be taken away. You would then have to try and remember as many items as you could. I feel my shoulders reaching for my ears thinking about it. Now imagine playing that game in a dark, dingy basement with poor lighting; there may be a slightly unpleasant odour in the air; rap music (ugh) playing loudly in the background; oh and just for added fun...you need to remember at least 90% of the items. How are your shoulders feeling now???  A little stressed???  This feeling?  I can only imagine to some degree is how it is in Riley World every. single. moment of every. day. I digress. Back to the EEG.

Lovely Leanna. I heart professionals like Leanna. She started by making marks on Riley’s head.  

“Ouch! That hurts!” Lovely Leanna would apologize. R would immediately reply in his sweet voice “That’s OK Leanna.” followed by “Shut up you stupid pencil!”  Replace 'pencil' with other objects in the room. Rewind and repeat multiple times.

Next came attaching the wires.

“Hey! You’re hurting me!” Lovely Leanna would apologize. “Oh it’s OK Leanna.” “Shut up you stupid glue!”  Again…replace, rewind and repeat.

Once again we have come to a new fork in the road. At 18 when Riley is stressed he does not want to be comforted by me holding his hand any more.  He does not want me to cuddle with him any more.  He does not want me to lie down with him any more.  Yes this is a good thing in so many ways (he is, after all, 'physically' a young man) yet I am struggling with how to try and make him feel better? I tried to redirect his attention to the video store and McDonalds (his choice of incentives picked beforehand). When this stopped working I tried saying nothing. I sat beside the bed with my hand on top of the blanket over his hand. It is always a crap shoot with chances of hitting the "meltdown button" getting higher and higher as time goes on. Thankfully we were almost done.

“I’m tired.”  Lovely Leanna would say “I know you’re tired. You can go to sleep in a few minutes.” R came back with “NO! I’m NOT tired anymore.”  Oi-vay.

A few tests to make sure everything was working then it was time to dim the lights and hope that R would fall asleep.

“Shut up you stupid!  That’s stupid!  I don’t want to go to sleep anymore.  This is stupid!”  Again...rewind and repeat. 

In the end Riley did fall asleep. He was more than happy to have everything taken off and head to the video store and McDonald's for a job well done! A small price to pay for a stressful afternoon. I, on the other hand, had a nap and an adult beverage or two when we got home. Results due tomorrow. 

#Monday Listicles...School Edition

For 15+ years the Labour Day weekend signalled the start of another school year. This year will be the last time I will think of September in terms of back to school. One. More. Year.  Bittersweet indeed.

I decided to take a look back on Riley’s school experience for this week’s Monday Listicles. It has been an adventure to say the least. There were times when I could never have imagined Riley sitting in a desk…ever. Times when we celebrated his accomplishments like learning to zip up his jacket on his own (thank you FG)! Times when I was stressed to the max over the summer not knowing who would be working with Riley the following year. I’d better stop now as I am starting to twitch uncontrollably. So here is a rundown of what it took to get Riley through the last 15 years:

1.      3 schools (preschool, elementary and high school).

2.      6 child care workers.

3.      13 elementary school teachers.

4.      25+ high school teachers.

5.      9 Special Education Assistants.

6.      8 case managers.

7.      26+ IEP meetings not to mention multiple impromptu meetings throughout the school year.

8.      If x = number of forms to be filled out at the beginning of the school year then x to the 10^th power = number of forms required when you have a special needs child. The number of medical, diagnostic and community services forms required is the bane of special needs parents’ existence.

9.      3 work experience job placements.

10.   1 Commencement Ceremony this coming June. Woo-hoo!!!

So many people to remember. So many people to thank.  So many people who have helped us along the way. Riley has come so far thanks to so many. We have been so very fortunate to have had such a great support network of family, friends, educators, specialists and “workers” (who are all really so much more).  

This should be one exciting year with lots to blog about if you’re lucky.  Ha!  I am going to leave you with a picture of Riley when he started kindergarten. Captured that time perfectly!   :)

"WTH were they thinking sending me here?!?!?"

Summer School Report Card

It is September 1^st…the official end to Riley’s “Summer Fun”! At this point school is looking mighty good to R. Little does he know that all the fun stuff we did at home over the summer is going to continue for-ev-ah. 

So how did we make out??? Well the first thing on our list was taking out the garbage. This was a family affair sans J2 as apparently he is allergic to chores of any kind. Considering our elaborate storage system, proximity to wildlife (did I mention we have had more than the occasional bear) and R’s strong aversion to getting his hands dirty or wet, I am going to give all of us a final grade of A+!  Call me easy but we went from demonstration mode => direct supervision => overseeing => operating independently with only what I would consider your typical teenage grumbling. I am calling this one a total success! GO Riley!!!

Next on the list was laundry. The plan was to master the general operations of the washer and dryer, sorting by colour followed by clothing specific optional drying. I know what you’re thinking…I aimed a liiiiiittle bit high on this one and that’s OK. We did run across a few minor glitches in the beginning stages. For example liquid detergent that requires pouring…not an easy task for R. So instead we opted for powder detergent which could be scooped and tossed into the washer with relative ease and the likelihood of getting his hands wet were minimized. You can watch this short video clip of his progress which occurred during his mid-term evaluation. We are in a holding pattern for sorting and optional drying as I realized these tasks may require an instructional video and/or laminated step-by-step posters. 

Also additional equipment labelled and with visuals attached would be helpful. I am going to give Riley an Excellent rating for his efforts as he has mastered the transportation and folding of his laundry thus far. Yes I realize it is only his socks and underwear. Did your mother never warn you about wearing clean underwear in case of an accident??? Just sayin’.

The final item on our summer agenda was washing rice. During the demonstration session I realized we were going to get an Incomplete on this task. With Riley’s tactile defensiveness it would have been so stressful for me him and hardly a required life skill so we withdrew from this class much to R’s relief. 


All in all a pretty successful summer. We both came away relatively unscathed and Riley is on his way on the domestic front. On Wednesday Riley will begin his final year of high school. Yup yup yup...this is it! 

How did you make out with your summer plans?

The Aftermath of Dental Surgery

Well we both survived!!!  I broke the news to Riley the night before he was to get his wisdom teeth out by placing a “social” story at his place at the table. Yes I am a woosie. In my defence he is a visual learner.

Thankfully Riley’s appointment was first thing (8:30) in the morning. On the wise advice of a good friend (who is a nurse) we prepped the back of Riley’s hands (for the IV) with an Emla patch (which is a topical anaesthetic) first thing in the morning. R was muttering all the way to the dentist’s office about being grumpy and me not leaving him. I know…melted my heart…the "me not leaving him" part that is.

Nurse Lisa came to get us right on time. R was weighed and lucky for everybody in the office, we were put in a room right beside the reception area. Oh joy. I asked Lisa if the room was sound proof and when she answered no but not to worry, I suggested perhaps she might want to find some earplugs for the staff and waiting patients as a precaution. Seriously I did say that. She hesitated just that little bit extra before trying to brush my comment off with a very weak and guarded haha.

Lisa was a God send. She talked directly to Riley then would look in my direction for confirmation which in every single case was the total opposite of what R answered. Remember Riley likes to be agreeable and when stressed will pretty much just repeat what was asked. eg. Do you like mouthwash Riley?  Yes I like mouthwash Lisa. R hates mouthwash. Have you ever gargled before?  Yes I've gargled before Lisa.  R has NEVER gargled in.his.life! You get the idea.  

The entire time R kept repeating “Don’t leave me. Don’t leave Riley T.” interspersed with “I’m grumpy.” I stayed with R and tried to distract him while they put in the IV. He “screeched” just a little and yelped “Hey…you pinched me! That hurt!”

Watching R go under was kind of scary this time. He started to cough and gag a little. I thought he might throw up.  Within a few extremely long seconds he was asleep. The procedure took less than 30 minutes. The surgeon was very “perceptive” and suggested I come in sooner rather than later after they were done. Excellent call.  ;P 

I was a little LOT nervous as to how R would come out of the anaesthesia. He was quite disoriented as expected and rather grumpy also as expected. “Shut up you stupid lady!” and “He hurt me!” were his words of choice this time…a far cry and much more pleasant experience than the swearing and cussing the last time around.

Now I am pretty sure they were as happy to let us go as we were to leave. Trust me, I in no way felt rushed or pressured to leave and was more than thankful that we didn’t have to wait around for R to “come out of it” at a leisurely pace. Lisa went over the post-op instructions making sure I knew I could call her later with any questions. I heart people like Lisa!

On our way out the receptionist (who looked like a deer in the headlights) passed me an envelope and said “You can call with your credit card when you get home.” I also noticed they had shut the door to the reception area which pretty much confirmed my suspicions that R was articulating very clearly despite a mouthful of cotton. Not sure who was more grateful to get out of there…her or me. ;P   

For those with young ones who are just starting out, I haven’t always been able to find the humour in situations like these. They were and still are stressful for me (and Riley) yet as he’s grown so has his ability to deal with these types of situations without going into full blown meltdown. For me…humour works followed by a good stiff martini.  :)

Why CAN'T He Keep his Wisdom Teeth???

A week today Riley is scheduled to have his wisdom teeth extracted! YIKES! Actually that is putting it mildly.  I am starting to panic. Thankfully the procedure will be done under general anaesthetic. I am hoping there will be some type of sedation for me as well.  ;P

Now over the years Riley has come a long way since his first visit to the dentist. We had a consultation with the dental surgeon a month or so ago and R sat in the chair looking almost comfortable. Pretty sure after our next appointment he won’t be looking forward to any future visits there!

It is not so much the procedure that I am getting nervous about at this point. Riley has been put under for dental work before. Oh I just want to mention the last time R was sedated for a medical procedure about a year ago, when he came out of it...uhhhh...let’s just say there were a number of "colourful" words spewing from his mouth in, of course, his "outside" voice.  Oish.  It is the post-op/recovery days that are freaking me out. It is the part where he has to ice his face, gargle and rinse to prevent infection and hoping…no...praying he won’t gnaw at the stitches in his mouth. I need to stop now as I am starting to hyperventilate. 

So in preparation I will be phoning ahead to our local “beverage” store to place my order for certain necessities to get me through next weekend. Until then…I will be in my cave cowering in the corner. 

Wish us luck!  D 

Why NOW???

Remember all the hype over Y2K?  It involved years of preparation in order to avoid the possible end of the online world. Life as we knew it was possibly going to come to a screeching halt.

Let’s rewind to 1999 in Riley World. We would have just received R's autism diagnosis.

“What type of program are you doing?”  Me:  Ummmmm…what’s a program??? 

“Are you going to do ABA?”  Me:  Isn’t that the therapy that you hear about people losing their homes? 

“How many hours of therapy are you doing every day?”  Me:  Huhhhh…Riley’s 5 years old.  He can barely watch a half hour of Barney.  How is he going to sit still for “hours” of therapy???

OMG!!!  Are you kidding me???  I remember being so totally overwhelmed and feeling like I missed the boat because he was already 5 and “they” kept talking about the importance of “early intervention” and thinking maybe we were too late and…and…and… AUGH!!! 

For years I had planned no further than a year or two (at most) ahead.  Anxiety  The thought of the future The Unknown and all the “What will Riley be doing?” or “Where will Riley live?” types of questions were too overwhelming for me to think about.  Stress   When R was little sometimes it took all my energy just to get through the day.  Exhaustion

Whether it was sleeping issues  Sleep Deprivation, eating issues Worry, behavioural issues Frustration… it all came down to me being in the right mindset  Preparation  to deal with "the stuff” in a calm  Patience and productive way  Strategies   without having a nervous breakdown (in my case) or major Meltdown (in R’s case) before we even got started.

That was more than 10 years ago yet I can still get overwhelmed and have those ‘What if……?’ feelings today. Only these days it is because Riley will turn 19 in just under a year. Adulthood is staring me right in the face! When did THAT happen?!?

So in preparation for life beyond Riley World, I needed to wrap my head around the fact that this summer had to be THE summer to introduce Riley to some important life skills. I was ready. I was psyched. I was up for the challenge. Riley was going to be in for some “Summer Fun” whether he was ready or not. Tee hee. 

Yes I know we should have started earlier. Here’s the thing…even now at 19, J2 does not do his own laundry or cook meals or take out the garbage on a regular basis. I know…shame on G!!  *wink*  The difference and there is a difference…when the time comes for J2 to have to do these things on his own, he will be able to “figure it out”. Sure there will probably be some burnt meals or shrunken clothes but no big deal. He will survive. Riley…uhhhh not so much. 

We are three weeks into July and have completed 6 loads of laundry, numerous trips taking out the garbage and had a demonstration of washing rice. Thank you.  :)  Here is a little snippet of how R has progressed since his first load of laundry. Still muttering away but a lot less cussing.

Loading the laundry is a breeze. 

Transferring to the Dryer...not quite as "happy".

At this rate Riley will be ready to move out before J2!  LOL!

Potty Training

A week or so ago I noticed on Twitter that June was "Potty Training Awareness Month" so what better time to finish off my half-written post than at the very end of June. Oish. Even though I may be the Susan Lucci of the “Mother of the Year” Award (pretty sure this year will be my year…tee hee), I am sure when you read the title of this post you probably pictured something like this:

Am I right??? Look how calm, relaxed and happy the two of them look. Can you not just imagine me and J2 or Riley like this when we were potty training? And the mom looks so pulled together...nice hair, clean clothes and probably showered!  Well...read on my friends.

Some parents sail through this period without batting an eye. Some parents struggle for a few weeks then don’t think about it ever again. Some are ready to rip out their hair; break out into a cold sweat; and the mere mention of potty training sends shivers up their spines. I fell into that third category and found this period was THE most trying time IN MY LIFE!!!  I will even admit I looked more like this…

For me this had nothing to do with having a child with autism and I think everything to do with having boys or to be more specific…MY boys. Surely it had nothing to do with my parenting skills after all I was already working towards my Degree in Parenting.

Like many first time parents, I thought J2 was THE most intelligent child ever…that is until we started potty training. Now I considered myself to be a somewhat intelligent person and I was pretty confident in my abilities even though I was a first time parent. Yup…that was my first mistake. Surely I didn’t need a book to figure this out. I mean how difficult could this really be??? Ya right. Mistakes two AND three...check and check. Hoping I did not miss that window of opportunity and believing J2 to be extremely bright (uh…number four) we started the process.

Having heard that boys usually take longer to grasp this concept I waited patiently for signs that he might be ready. Obviously I had no idea what signs to look for since my niece, who is 10 months younger than J2, was pretty much potty trained before we got started! *sigh*  

Without going into all the gory details for fear that the authorities might be monitoring my blog…let’s just say with the added pressure to have J2 “ready” (aka potty trained) for preschool, there were times when both J2 and I were in tears…at the same time! Needless to say when it came time to consider potty training Riley, I was so traumatized by my experiences with J2 that I was prepared to keep R in diapers FOREVER!!!

My reason for writing this post??  Well initially I was hoping to pass along “How to” or more realistically “What NOT to do” tips. The amount of information out there is SO overwhelming. But let's face it...I have nothing... nada...zippo. Did you not read anything above!!! So instead all I have for you is this; if you are a parent like I was, struggling to potty train your child and stressed out to the max…YOU ARE NOT ALONE! Try not to beat yourself up. It's nothing personal, you are not a loser alone! Diapers aren't so bad. Hey it cuts down on the laundry. Again...you are not alone! Why do you think they make Depends? I'll let you think about that for a minute. For the last time repeat after me…I am not alone!!!  There.  Feel any better?  Hope so.

Over a dozen years have passed and I am happy to report we all survived although at the time…it was touch and go whether or not I would have to enter rehab.  ;P

What are your experiences with Potty Training?  Do you have any horror stories tips you would like to share?

Going to the Dentist

Over the last two weeks or so I’ve made 3 trips to the dentist with still more to come. Oh yay. Yesterday was particularly fun…a root canal.  :(  Now I know you hear horror stories about having a root canal. Well if it wasn’t for the fact that I am a total white knuckle scaredy cat…things actually went OK. I must confess that it has been over ten years since I have been to the dentist and while I could justify it, it really is irrelevant to my story.  I will, however, add some visuals for effect.  (Note:  All images are from Google Images)

How I most definitely did NOT feel!

How I actually DID feel!

How I probably looked...a not-so-young, 

scaredy-cat with a double chin. Although you can't see

the white knuckles...note the closed eyes.  Oish!

So as I sat there gripping the arms of the chair until I had no feeling in my fingers, eyes closed, holding my breath…I pictured Riley in the dentist chair, arms crossed across his chest sitting “calmly” (ie. NOT screaming at the top of his lungs while scrambling to get out of the chair) getting his teeth cleaned.  I.KNOW!  Well…not so fast people. It’s taken two times of having to be put under…knocked out…we’re talking general anesthesia here; multiple trips to the dentist just to visit; still more trips just to sit in the chair; progressing to counting his teeth before finally being able to gain access to his mouth to actually “clean” his teeth. Thankfully that's all that's been required so far. I don't mean to sound discouraging for anybody just starting out yet to be realistic, this process has taken many, MANY years! 

Yes this felt like torture (for both R and me), was exhausting, and stressful. I also remember having coffee with another mom whose son also has autism and had to be put under for some dental work at the same hospital that Riley was going to go to. I’ll never forget her telling me how she had met some parents whose children were there for various health issues and how she felt, sheepishly saying her child was there to “get his teeth cleaned”. It was a reality check for the both of us.  Our boys were and still are, for the most part, happy and healthy. Yes we have our challenges yet somehow our challenges seemed pretty insignificant compared to those parents whose children had life-threatening illnesses. As one of my favourite quotes by T.H. Thompson and John Watson goes; "Be kinder than necessary, for everyone you meet is fighting some kind of battle."

It really is a matter of perspective isn’t it?  I guess I'm gonna just have to suck it up for my upcoming visits to the dentist. I think I will use Riley as my role model for this one.  :)

Think about it...D

Bless Your Heart...the Northern Way

Having recently returned from a 5-day gal pal weekend away it appears my brain has STILL not arrived so I’ve been madly looking for something…anything that I have even remotely started writing to post. Let me just say in advance…I’m sorry. I had totally forgotten about starting this post (it’s been sitting in my draft folder for months) until I was reading a blog that I follow over at “Bubble Gum on My Shoe” (look over to the right sidebar under “Blogs I Follow”…see I do follow her) and it twigged my brain.   

Anyways, one of the things I’ve found that would, and still can, be difficult at times is trying to stay positive when I am feeling overwhelmed from all the information I am trying to absorb, especially when we were starting our adventure into Riley World. Then came school. After 5 or 6 years of trying to navigate the world of special needs within the school system, one might begin to get jaded or negative. I think it was around that time I started to acquire an appreciation for a really good, ice cold martini with a twist. Tee hee.     

One of the strategies FG (Fairy Godmother) and I used when we were feeling particularly cranky or frustrated was that if we were to preface any comment with “Bless his/her heart”, anything we said after that could not be perceived as malicious, negative or down right rude. When repeating said comment to anybody else, the translated version would be used at all times.  eg.  “Bless his/her heart…what a stupid idea” would translate to “Gee, at least they’re trying” or “Bless his/her heart…are you f*ing kidding me” would translate to “Wow…I would have never thought to try that.”  Get my drift??? 

While reading Cari's (I like to think we’re on a first name basis...well...actually it's just that I don't know her last name *wink*) post "Kiss My Grits and Bless Your Heart", I realized we weren't really using the saying as it was intended.  After all here was a real, live “southern belle of sorts” (her description not mine) who “was raised in the South, y’all” explaining the meaning and appropriate time to use the southern saying. I don't think FG and I ever quite mastered the “side tilt of the head and the little brow scrunch" either. *sigh* It did work wonders for my sanity and always made me look like I was in control even when I was ready to rip out my hair.  

Go ahead…give it a try, just make sure both parties are on the same page as to whether or not you will be using the intended meaning (last chance to link over to Cari's post) or an "adapted" version of the saying. Hey, at least we refrained from saying "Bless his/her heart eh?"  :)