Tuesday, April 2, 2013

Welcome to Holland

Today is World Autism Awareness Day.
I have to admit, when Connor was diagnosed, my idea of autism was 'Rainman'. I really didn't know much about it. My child didn't rock. Made some eye contact, wasn't overly affectionate but he hugged and kissed us. He was AWESOME at playing on his own and rarely got into trouble for making messes and getting into stuff. He did enjoy spinning, the Weather Network and LOVED his trains. He didn't play with other kids very well but I attributed that to being alone with Mommy all day because he could talk the face off of any adult. He did tend to get crazy excited in public and this almost always resulted in a meltdown but he was perfectly fine at home. And he was a late bloomer as far as potty training went but oh well, he's a boy and they are slower than girls. He has a FABULOUS memory. Knew all his letters & numbers super early. Started spelling words aloud at the age of 3 (I will never forget that day). He was even printing & telling time on a clock before kindergarten. 
Hmmmm. Perfectly typical, right?
Imagine my surprise when the subject was brought up after his 3.5 year assessment. I was totally dumbfounded. Of course, Mark & I came home and immediately were bombarded by the plethora of information available online. There was so much, I was overloaded. I had to stop reading.
I find it hard to explain to people exactly what Autism is because it really is different for everybody. Connor has worked really hard and come a long way in the last 4 years and if you didn't spend a lot of time with him, you might even miss his little quirks and not realize he has this disorder. His speech is a lot better. He still recites movies, commercials and TV shows but we also have real conversations now about things that he thinks about and he has questions for us. He still becomes easily obsessive about certain topics. He still isn't great at eating a wide variety of foods but he will at least try new things and is sometimes very surprised when he likes it. Sleep is still an issue, he still doesn't sleep through the night often, sleepwalks and often wakes me up more than once a night but it's getting better. His anxiety even seems to be getting better. Peer relationships are sometimes difficult and a constant struggle lately.

We are REALLY proud of him and all the progress that he continues to make and celebrate every small victory.

I really, really try not to be judge-y or preach-y about and to other parents and how they deal with their kids because I feel like we are all in the same boat, terrified of doing a poor job and just doing our best to figure it out along the way. But I DO need to say that I really, REALLY feel strongly about early intervention and Autism. If you think your child might have Autism, early therapy is SO VERY IMPORTANT and will make a world of difference in the quality of yours and your child's life. If you think your child may be on the spectrum, PLEASE, talk to your health care provider ASAP. 
I know parents of other children on the spectrum and some of their journies are much different than ours BUT I did find some information that is applicable to a lot of  parents of children with special needs and always found comfort in this little story. I also included a few more visuals with Autism facts at the end of this post.
Welcome to Holland
Written by Emily Perl Kingsley (in 1987)

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to imagine how it would feel.
It is like this...

When you're going to have a baby, it is like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The Gondolas of Venice. You may learn some handy phrases in Italian. It is all very exciting.

After months of anticipation, the day finally arrives. You pack your bag 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 am supposed to be in Italy. All my life I have dreamed of going to Italy! '.

But there has been a change in flight plan, they have landed in Holland and there you must stay. The important thing is that they have not taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It is just a different place.

So you must go out and buy new guidebooks. And you must learn a new language. And you will meet a whole new group of people you would never have met before. It is just a different place. It's slower paced than Italy. It's less flashy than Italy. But after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, and Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they are all bragging about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that is where I was supposed to go, That's where I had planned'.

And the pain of tha
t will never, 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 go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. 

If you are still here and reading, 
I am hoping I have given you some food for thought.
If you have questions for me, I don't have all the answers but am happy to 
lend an ear or help the best I can. 
Leave me a note with a way to contact you or email me
cindysinfo (at) hotmail (dot) com.

HUGS & Happy Surfing.


Lee-Anne Thornton said...

Cindy, I really enjoyed reading all about Autism. My nephew has Aspergers and I am not educated that well about this. Great blog post! Hugs :)


erin said...

I finally got through your amazing post without crying. Our precious Mari was diagnosed at the age of 4 and a half. We couldn't be more proud of where she is today, after 1.5 years of therapy every.single.day. We are all better by living through her eyes! God bless you and your son.