Wednesday, May 19, 2010

We're moving to....

Nathan was diagnosed with Autism today. Yes that's right he has both RTS and Autism!!!! What are the chances of that???? I am both relieved and overcome with emotions upon this diagnosis. Relief because there's so much about Nathan's behaviour that didn't make sense to me. So much about him that I couldn't connect with or understand. I'm overcome because I have a whole new disorder to learn about.
Today is such a weird mix of emotions... I am absolutely exhausted as I type this. I have cried so much today and yet the diagnosis of Autism is a good thing because it will open up SO many more doors, so many more services and more funding to help Nathan. It's all in his best interest.
Nathan is still Nathan. That hasn't changed! He's still the same kid with the same challenges; the diagnosis has confirmed suspicions we have had for the past few months and will help us help Nathan the best we can. So now we pack our bags and move to Schmolland. I'm going to start researching this new world and once the initial shock settles I'm sure we'll adapt to living life in a new country.
I know many of you are familiar with the poem "Welcome to Holland" I am posting it again for those whom may not be familiar with it.
The second version "Welcome to Schmolland" is a version that hit close to home as it has been rewritten to reflect Autism.
Hope you enjoy them both. I will blog again soon but for tonight, I need to take in all of this... It's a big move and I hadn't planned on moving after Holland.

Welcome To Holland
by 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 the 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 guidebooks and make your wonderful plans. The Coliseum, Michelangelo's "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 flight attendant comes 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 plans. 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 guidebooks. 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, 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 supposedto 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.

Welcome to Schmolland
by Laura Krueger Crawford

In Schmolland, it is perfectly customary to lick walls, rub cold pieces of metal across your mouth and line up all your toys end to end. You can show affection by giving a "pointy chin." A "pointy chin " is when you act like you are going to hug someone and just when you are really close, you jam your chin into the other person s shoulder. For the person giving the "pointy chin" this feels really good, for the receiver not so much, but you get used to it. For citizens of Schmolland, it is quite normal to repeat lines from videos to express emotion. If you are sad, you can look downcast and say "Oh Pongo." When mad or anxious, you might shout, "Snow can't stop me!" or "Duchess, kittens, come on!" Sometimes, "And now our feature presentation" says it all. In Schmolland, there's not a lot to do, so our citizens find amusement wherever they can. Bouncing on the couch for hours, methodically pulling feathers out of down pillows, and laughing hysterically in bed at 4:00am, are all traditional Schmutch pastimes.

The hard part about living in our country is dealing with people from other countries. We try to assimilate ourselves and mimic their customs, but we aren t always successful. It s perfectly understandable that an 8-year-old boy from Schmolland would steal a train from a toddler at the Thomas the Tank Engine Train Table at Barnes and Noble. But this is clearly not understandable or acceptable in other countries, and so we must drag our 8 year old out of the store kicking and screaming while all the customers look on with stark, pitying stares. But we ignore these looks and focus on the exit sign because we are a proud people. Where we live, it is not surprising when an 8-year-old boy reaches for the fleshy part of a woman's upper torso and says, Do we touch boodoo? We simply say, "No we don't touch boodoo" and go on about our business. It's a bit more startling in other countries, however, and can cause all sorts of cross-cultural misunderstandings. And, though most foreigners can get a drop of water on their pants and still carry on, this is intolerable to certain citizens in Schmolland who insist that the pants must come off no matter where they are, and regardless of whether another pair of pants are present.

Other families who are affected by autism are familiar and comforting to us, yet are still separate entities. Together we make up a federation of countries, kind of like Scandinavia. Like a person from Denmark talking with a person from Norway, (or in our case someone from Schmenmark talking with someone from Schmorway), we share enough similarities in our language and customs to understand each other, but conversations inevitably highlight the diversity of our traditions. Oh your child is a runner? Mine won t go to the bathroom without asking permission. "My child eats paper. Yesterday he ate a whole video box." "My daughter only eats 4 foods, all of them white." "My son wants to blow on everyone." "My son can't stand to hear the word no. We can't use any negatives at all in our house." "We finally had to lock up the VCR because my son was obsessed with the rewind button."


  1. Huge Hugs to you! Getting 2 different diagnosises (sp?) SUCKS! I know from experience:). However, you're right Nathan is still Nathan, and he is awesome! He will make a memorable mark on this world...and so will you as his Mama.

  2. Hey girl
    I wish I could give you a hug! I know this is a hard time right now but as everything else you will adapt and always do! you are such a good mamma! I am glad you will be able to get some more answers with this new diagnosis and more services. More is better in the case of our children!
    I love you and Nathan!

  3. I can hear your relief as you write. I'm so glad you have the answers...they are hard answers, but now that you have them, you can move forward for Nathan. Nathan is and always will be the Grabber we love! Yeah for more services!

  4. Yuck, another diagnosis, but you put it best, Nathan is still Nathan. I'm glad that it opens up new doors for more intervention and help and like Kelly said, more is better for our children.

    I love how transparent you are with your feelings. It reminds me that I'm not alone when something new comes up with my Nathan and I get teary eyed, sad, stressed. Unknowns are not fun, but when we have friends to support us, it makes the unknowns easier to charter.

    Hugs to you Christine!

  5. Diagnosis shmiagnosis....Same Nathan! Same sweetie! You sound well! Love you!

  6. Big hugs to you and your precious boy. I love how his personality has shone through in your posts. Another diagnosis doesn't take anything away from the person that he is - like you said Nathan is Nathan. Thinking of you as you process the implications of all of this.

  7. I'm interested in hearing how you came to the conclusion to have him evaluated. I think Austin may be autistic as well but have never pushed the idea.

  8. HUGS HUGS HUGS! Nathan is amazing and so are you! i'm glad your going to be able to get more help, and answers! :)

  9. Hugs to you my friend. Nathan is still the little grabber and you are still an excellent Momma. ;)

  10. Thinking of you Christine. I am also interested in hearing of how the diagnosis came about ..I have always thought Noah may be on the spectrum but have never pushed. (like Michelle said) If you are able I would like to talk to you about it.

  11. We found out that Logan was diagnosed on the autism spectrum also..must have been late last year or earlier this year (through the school)...guess it didn't suprise me though for some reason..but was hard to hear..thinking of you guys..doesn't change how sweet and fun they are though!!

  12. Hugs! You are an amazing Momma. And like you said he is still the same Nathan. I am sure it's a relief to have some answers and see the window of opportunity you will get with more services to help Nathan. Stay strong!

  13. I read this post last week and didn't comment. I've been thinking of you and Nathan a lot, and while it is so not cool that he has autism, I echo many other commenters when I say that this diagnosis does not change Nathan at all. It only opens him up to more help, and that is awesome! He is still that same little man you are so madly in love with, that will never change.

    Hugs to you Christine.

  14. Hey Chickie,
    I think this can only be a good thing....can't it? It means that there may be so much more help he can have. He may progress more quickly with extra techniques and so on and if he doesn't you haven't lost anything. Nathan will still always be that beautiful smiley boy we all love. Miss you guys and Liam sends lots of dribbly kisses xxx

  15. You said it best. . . Nathan is Nathan! Nothing will change that! Glad you have the answers you need to help Nathan continue to be his best. Nathan is a lucky guy to have such a wonderful mommy! I will miss seeing you this June and hanging out! Hugs! Kelly F