Thursday, November 1, 2012


Halloween was so fun for the kids. I had to stay home to recover, but they all went trick or treating. Jacob had a panic attack about his dinosaur mask and refused to wear it, but his costume was still cute. I got a video of him at one house and he would hold his daddy's hand and walk up the driveway with all the kids and then reach for his daddy to hold him when the people would answer the door. I'm pretty sure he was just as excited as he was scared. I was just glad he was able to join in on the fun with his siblings and cousins
This month Jacob will be 2 1/2.  I feel like Jacob's autism is becoming somewhat more obvious.  He spins in circles over and over making strange finger movements.  He still is not requesting anything using words, except with his therapist when he occasionally says "on" for a specific toy, and he isn't calling me "mommy" or his dad "daddy".  He is using his PECS pretty well. The other day I was determined to play a game with him or read a book to him and I couldn't get him to look at me for more than a second.  I tried everything I knew how to do, but he just wouldn't play with me.  Its been hard the past few weeks.  I don't really know why I am feeling overly sensitive about it again, but I guess I just hoped that he would be further along by now.  Or maybe its just the weird feeling that I get every few months when I am reminded that although he is making improvements, he still  has special needs.  It becomes our normal and then I am reminded of what kids his age should be doing and then I feel sad about it.  Its usually when a friend with a child his age comes around and I see all of the things they are doing and saying.  As he is getting older, the things he should be doing are becoming greater and greater and that makes the gap so much larger to me I suppose. 
I had surgery recently and my step mom has come to help out and she keeps reminding me how sweet Jacob is.  His autism is severe, but his behaviors are not aggressive or violent.  The only real tantrums or fits of aggression that we see so far are when we keep the IPad from him or when we come in from outside.  Being considered severely autistic means that he has major developmental delay, major speech delay, and major repetitive behaviors.  Most people think that to be considered severe the child has to be very aggressive.   I am so thankful he is such a sweet boy and loves me.  He love to snuggle but he doesn't snuggle like a normal child, he likes to sit in people's lap facing out.  He doesn't do it with everyone, just a few special people. 
Grandma happened to be one of those people and I am so thankful they bonded.  One day, while he was doing some particularly strange movements and spinning, Grandma said,"He is beautiful to watch."  In that moment I stopped feeling so sad.  Normally each time he engages in repetitive behavior I feel a little sad for him.  I probably feel a little sad for me too.  My tummy gets a little nervous and my heart sinks a bit. This time it was nice to be reminded of how unique he is.  Since then, I have been watching him and seeing the beauty of his uniqueness.  I can't wait to see what God has in store for him.  My sweet boy is different.  He may always be different and I am learning to accept and enjoy it. 
I was reminded of this poem I read a while back describing what its like to raise a child with a disability.  I wanted to post it for those of you who haven't read it.  Enjoy your child, enjoy their differences and wait to see what God has in store for them.
Welcome to Hollandc1987 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 go away... because the loss of that dream is a 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.


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