I was having a little trouble this week deciding on what to post next. After all, although I have over 15 years of “adventures” to share with you, not all are as humorous and memorable. I certainly wouldn’t want to appear as if our life is just full of Mr. Bean antics all the time.
I believe I mentioned sharing all my wisdom, knowledge, insights and theories in my first posting and I’m sure you’ve been waiting with eager anticipation for something wise and insightful. While this isn’t something I’ve written, I absolutely LOVE this story! I first read it shortly after R was diagnosed with autism and although it isn’t directly about R, I never would’ve read it without him. This put into words exactly how I was feeling at the time.
When I read it now I don’t cry any more; I realize how very lucky I am to have friends who don’t brag; time does help with the loss of anyone near and dear to us; and although I’ve never been to Holland…detours are just part of the adventure. Enjoy!
WELCOME TO HOLLAND
Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo. David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Now I’m sure at one time or another we’ve all experienced the looks from strangers that have made us feel so inadequate as a parent that we felt like crawling under the proverbial rock. I remember being at a shopping mall with my mom when the boys were probably only about 2 and 3 at the time.
In one particular store they had a train that went around a track just below the ceiling. Perfect! Both boys LOVED trains. We watched and watched and watched. Not quite the “experienced” parent that I am today (tee hee)…without any warning I announce in my most sing-song motherly voice “Time to go” as I proceed to walk out of the store. I can hear you gasp in horror about now.
One of the boys wandered out of the store, the other immediately threw himself on the floor at the entrance to the store flailing around like a fish out of water while exercising his vocal chords in hopes that anybody within a 1 mile radius would come and rescue him. My mother calmly took my other son to wait at a nearby bench. At this point I am wishing I was a wrestler in a previous life. After somehow managing to scoop up this octopus of a child without either of us getting seriously injured, I work my way over to my mother. I felt and looked like I had just gotten out of a steam bath. Sitting behind my mother was a grandmotherly looking woman. I know I shouldn’t stereotype just because she had grey hair and a cane…but I did. Just as I got there, she turned around and said “What he needs is a good smack!” Are you gasping again??? Now I do not like conflict, have never been good at thinking on my feet and will do just about anything to avoid a confrontation. This time was no different. *Sigh* Thinking back I could’ve and should’ve explained my son’s behaviour with the hope of bringing her some awareness of autism. Unfortunately at that specific time, we did not know Riley had autism and it was J2 who was sprawled all over the floor. Oish.
If it were up to Riley, he’d probably still be watching Caillou, Thomas the Tank and Winnie the Pooh. Actually…he discovered YouTube a number of years ago so he continues to watch episodes since we can’t monitor his every waking moment. *Sigh* I somehow justify all the Disney movies (101 Dalmatians, Snow White and the Seven Dwarfs, Little Mermaid…you get my drift) as “Classics” therefore watchable and appropriate at any age.
Around the time that R was in grade 6 or 7, “I” decided it was time for him to start watching more “age-appropriate” movies. After all he surely must be getting tired of watching The Land Before Time and their bazillion sequels?!? OK…I exaggerate slightly. There are only 13 of them as of today on Wikipedia.
The question…what comes next??? The next step…”real” people movies. This, of course, needs to involve toilet humour and all sorts of hopefully improbable situations such as leaving your child behind at Christmas and not noticing until you arrive at your destination airport or something like that. One of R’s favourites of this genre was Kindergarten Cop. Watching it through R’s eyes is truly an eye-opener. Even though you can probably count the number of swear words on one hand and most kids (parents for that matter) hardly notice…yup…you got it…R seemed to zone in on one of those select few words. It starts with a B; ends with a D; has 5 letters in between and is defined on the on-line dictionary as “a person born of unmarried parents; an illegitimate child”. The scene goes something like this…the woman is extremely upset and frantic and yells “B*****d” at Arnold. Now on the upside…R uses it only when he is extremely upset and frantic which is a positive in that he is relating to the feelings of the woman. On the not-so-upside…when you’re in McDonald’s and they run out of “small brown bags” for his french fries, it’s a Saturday afternoon and there’s a whole bunch of families with small children deciding on what Happy Meal toy they want…not so good.
Why when entering into my 5th decade would I suddenly decide to start blogging you might be asking yourself…or not?!?!? After all, I don’t do “The” Facebook, Tweet, just found out about BBMing (although I do text) and only recently got myself a phone with a qwerty keyboard. The phone was only because I was getting tired of pressing the number 7 key four times in order to get an “s” (which I’m pretty sure is one of the most popular letters) when texting.
I am the only female in a family of 5. A husband (who we’ll refer to as “G”) who has been retired for sooo long it’s a miracle we’re both still alive, a stepson “J1” (32 years old) who has an aspiring music career, a son “J2” (18-1/2 years old) who has aspirations of following in his older brother’s footsteps and another son “R” aka Riley (17 years old) who this blog is about and by the way has autism. I’ve been married for over 20 years (only feels like 50 as “G” likes to say) and am a breast cancer survivor of 5 years (had to throw that in for the sympathy read).
I am still leery about divulging tooooo much information on-line (as evident by the reference to my family as initials rather than their names)…not really sure why…must have something to do with entering into my 5th decade. Not that I’m dwelling on that fact.
A lot of people…OK…some people…OK…mostly friends…well…a few “good” friends…OK…maybe just my family…ummmm…perhaps it was just my sister *sigh* have encouraged me to write about our “adventures” (as I like to call them) with Riley. I am now ready and somehow feel obliged to share all my wisdom, knowledge, insights and theories (also known as “DOT’s”) with anybody who is willing to read/listen.
The “Life of Riley” is anything but boring. From the early days of his diagnosis, through preschool, elementary and now high school we have had the good fortune of meeting and getting to know people who have guided us through mountains of paperwork, seemingly endless numbers of assessments, choosing therapies and more importantly teaching us ways to give Riley the best opportunities for success that worked for us as a family.
Now that I’ve gotten the background information all taken care of…stay tuned and I hope you enjoy reading about “Our Adventures with Riley”.