“Want Mum Mum please…”

So it’s out there…my son has autism. He loves to jump, he loves to run, and he has the best laugh in the world. He doesn’t however, like to cuddle. He isn’t to the extreme that we can’t touch him though…in fact sometimes he will ask us for squishes, and that means squeeze him in a big bear hug!

The night before last, my husband was getting ready to go the the hockey game. I was cleaning up the kitchen, listening to music, and I asked my son if he wanted to dance. He didn’t reply but he had a silly lil smirk on his face. So I picked him up (all 56 lbs of him lol) and we started singing and dancing along to none other than Love Shack! Half way through my husband comes out to the kitchen, picks up the baby and joins in. He tells me I’m gonna break my back lugging our big boy around but I just pretended not to hear him. My arms were burning and I was tired (maybe it’s time to start body pump again??) but I was loving it too much to put him down. The song ended and so did the dancing.

After finishing up the dishes and watching some Mater Tales, Dad was off to the hockey game and the boys were ready for bed. A bottle for the little man and he was out. Regular routine began for our four year old…potty, brush your teeth, pull up, jammers, and then time for bed. Normally when he crawls into bed he repeats what I say as quickly as he can, so I’ll leave him to go to sleep. “Good night, good sweep, see you mornin, wuv you”. But tonight was a little different.

I grabbed a book, which I often do, and laid beside him. Most nights he doesn’t want a book and he’ll let me know by pushing me away and elevating his voice to a high pitched groan. Tonight he giggled and had that same lil smirk as he did when I asked him to dance. He helped me read Thomas’ ABCs by saying the letters, their sounds and who was in the picture on the page…”B says ‘ba’ Bertie da Bus”. I closed the back cover of the book, and he says “the end”. This is the part when I get up and turn out the light. But instead, tonight, I see that heart melting smirk. He grabs my arm and pulls me close and says… “want mum mum please…” My eyes are watering because my heart is so happy. I cuddled him carefully, making sure I wasn’t too close to push him away but holding on as tight as He would let me. In my arms he fell asleep and I stared at him with a heart melting smirk…

Reality kicks in…

tulipss

When our oldest son was 12 months old, I started questioning if things were okay with him.  He didn’t seem to be responding to the things that “normal” kids his age would respond to.  My husband would come home from work and call his name from the door and it was almost like he couldn’t hear him.  We had his hearing tested – all is good…other than the fact that he needed tubes…minor detail!  He wouldn’t really look us in the eye…even if we were standing or sitting right in front of him.  He had very little speech and he was obsessed with wheels.  Anything that had wheels!   Trains, trucks, office chairs!  He went into another world as he seemed hypnotized by the spinning of the wheels.

I questioned the doctor at the 18 month check up.  It took a lot of courage and guts but I actually said the word that I was scared to admit to myself – autism.  The doctor was hesitant and suggested we go to a local speech program for children.  At our second visit, the SLP confirmed what I was afraid of.  There was more missing than just words.  She was also convinced it was autism.  God bless her heart…I cried, and cried, and cried.  My husband and I discussed the news and shared our concerns with our parents and siblings.  Even today, as I’m typing this, I am choking back the tears.  It was instant heartbreak.  As a teacher, I know how cruel the world can be to some of the sweet little children who are ‘different’, so to speak.  I wanted him to be ‘normal’.  I wanted him to be accepted.  I wanted him to talk, and play, and love, and succeed.  I knew I should be trying to stay positive and focusing on the things he could do rather than those that he couldn’t…but to be honest, that was one of my biggest battles.  I could feel myself slipping into this world of challenges, rather than focusing on the blessings.

And then a colleague sent me something that I think about very often.  My cousin actually sent it to me again just recently, unaware that I had seen it.  It is such an exact representation of my feelings that I have to share it with you.  Here it is…

  

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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.

So I’ll leave you with that…even though parenthood wasn’t exactly what I had planned or imagined, that… is exactly how we see our boy… “the very special, the very lovely”…

Welcome

Welcome to my first ever blogging experience!  Being a teacher, I realize that practice makes perfect and I hope that you will accept my imperfections as I begin this new adventure.  
So…first off – why the blog?  Well, I’ve always been the kind of girl that likes to express her thoughts and feelings.  And I thought, hey – maybe someone out there might wanna read them…even if they are a little scattered and not always grammatically correct!
A little bit about me…I’m 30 years old.  Yikes – that’s old!  I have a wonderful husband who I met in high school.  He is so easy going, very fun and always up for an adventure.  We have two gorgeous boys.   Our oldest is 4 and our youngest is 6 months.  We live in a beautiful home that my husband and I built together in a great neighborhood surrounded by our loving family!  We are so fortunate to live in the same city as both our parents and all of our siblings.  We have six energetic nieces and nephews who all live within walking distance of our home.  And we both have extended families that mean the world to us.
Now that I’ve painted a picture of our perfect world, I can get into the expected part.  Growing up, I was always known to plan things out.  I am a fairly organized person and I had everything pictured in my head just the way I wanted it to go.  Graduate from high school, go to university, meet a great guy, get a job, get married, find our home sweet home (no white picket fence necessary…I’m not that much of a dreamer!) and start our family.   However, life doesn’t always go according to plan, as I’m sure you know.  Things started off following the schedule as they were supposed to.  I graduated from high school, found a great guy, got myself a BA and a BEd, got married, built a house (we have a fence, but it’s not white or picket lol), and we started our family.  Most of our friends thought we were in fast forward but we were ready.  At least we thought we were!  
Boy, were we wrong!  We had no idea what life had in store for us!  Which brings me here…to share the ups and downs of my life unexpected…Image