Fragile X

I watched a really good program on Fragile X (which is Kyle's main diagnosis) and felt so good afterward. At the end of the program this was read and it brought me to tears!


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.

by Emily Perl Kingsley


I love Kyle, and have said this many times before and Ill say it again, I wouldn't trade him in for anything. He has taught me more than I could ever imagine a 5 year old could. I am so lucky to have him call me mom (well someday call me mom :)

Pee Pee in the Potty!

Potty Training. Each month Kyle's team of therapist including me come up with programs and goals for him to meet. Last month when we met the "team leader" (the PC) was very insistant on getting Kyle potty trained. I honestly didn't care and didn't think he was ready (thats always my excuse :) He put it into Kyle's program. Once a week they take a full session and dedicate it to JUST potty training. Which means for 3 hours every 5-10 minutes we are struggling to get my giant autistic 5 year old on the pot!! Then the last hour of each session we are doing potty training. I hate this. I dread this. It is long and tiring. And ususally it results in NOTHING in the toliet.

I have been meaning to write about this for a while now....About a 2 weeks ago, Emily and I were doing potty training and had been struggling to get him on the the stinkin toliet then get him to STAY on the toliet. Finally we resorted to turning the TV on and angling it so he could see it. Not even 5 minutes on the toliet and I feel my leg getting wet!!!! Oh my gosh! He peed! More of it was on me than in the toliet but who cares, right?! My autistic son just got the concept after weeks of pure hell! So, 10 minutes later we got him on again...and he peed again! Holy crap! Emily and I were so excited jumping up and down! So the next day we thought piece of cake. Wrong.

So it's been two weeks of fighting and stuggling and me wanting to give up and the oh so patient therapist routing me and Kyle on as they set the timer, and nothing. Til yesterday. Des and I were both not too excited about potty training day but we did it anyway and the last time we put him on the potty...he went potty!!!! YAY! We high fived him, eachother, even Cody was excited!!

I have read a million and one articles on potty traing an autistic child and they all say the same thing...patience! So, that is what I am gonna TRY and have is patience. He has come a long way from being terrified of sitting on the toliet to now going potty in it so I am proud of him and will continue this hard work, cuz I know the reward is worth it!! So wish me (and Kyle..and Des..and Emily) Happy Potty Training! :)

All Aboard!!!!

Cody LOVES trains. Love may not be a strong enough word to describe how this kid feels about trains. He can hear a train before anyone. He can spot a train before anyone. Trains are a part of Cody's being! :) My mom has been promising Cody that she would take him for a ride on the metrolink for a while now and he got to cash in last week! We took a ride to Santa Clarita (about a 45 minute ride) and back home. He was in heaven.


Cody with his train ticket!



Cody and Leah! Arent they so cute?


Cody and Grandma!


Cody and Leah sayin goodbye to the train!