🎵 The Hugglemonster Way 🎵

I write this blog for many reasons. I write for awareness, and to let people know some of the ups and downs of autism. I try to stay positive and focus on mostly ups, but getting a few downs in there helps to paint a real picture of my unexpected life. I write it for other parents, because whether we have special needs or neuro typical children, we all share that crazy unconditional love for our little ones. I write for my boys, so they can remember the great times we’ve had and the rough times that we’ve overcome. I write for myself, because often people run into me and ask “how are things” and unless they have a lot of coffee, a chair, and a few days… they aren’t really going to find out how things are!
When I first started writing a year ago, I got excited that some of you were following my blog. Your kind words and support encouraged me to keep sharing. A friend sent me a message the other night saying she overheard two mothers at her child’s music group talking about ‘Ashley’s’ blog. She said they were speaking very kindly and she felt that I had truly impacted them based on what she could hear. I run into people that I haven’t seen since high school (which now is over 14 years ago!) that say they think of us often and enjoy following the blog, even though it makes them emotional at times. I’ve heard that I’m brave, and courageous, and strong, and all of these words are so kind and thoughtful of you.
Last night while I was at my moms for our weekly Sunday dinner, she spoke to me after everyone else had left. She told me that she had been approached by a group of people who wanted to help us. They weren’t sure how but they wanted to do something. I tried to keep it together, but those super-power crazy emotions kicked in and I let some of my famous crocodile tears fall. I’m not sure what to say other than we are swelling with emotions at such generosity and kindness. We know people, friends, and family, think of us often and everyone offers to help “if there is ever anything we need”, but Jeff and I are both so very touched by this offer. We are so thankful for the special people we have in our lives and we hope they know how much we appreciate all of their love and support.
Final thoughts: Tonight, before bed Ledger was listening to some music. He was marching around carrying his leap pad up on his shoulder like a boom box. The music is closest to his ears this way and he had a huge smile on his face. It was a song from one of his cartoons he likes to watch. As I danced with him in the living room we giggled and I listened to the lyrics:
“When trouble comes my way
No matter night or day
I know my family’s gonna help
And make it all ok”. 💙

We are so blessed…

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”…