Sunday, May 19, 2013
Wednesday, May 15, 2013
What's new with EK?
Well...
The regular school year is wrapping up for Eva Kate next week. It's been a good year at Trace Crossings (special Ed preschool) and Discovery UMC for Mother's Day out. She's had some really great teachers and made some progress along the way.
EK qualified for extended school year at Trace and will be going 2 days a week. We are enrolling her in a gymnastics a class for children with special needs and adding in ABA therapy this summer. Paul is taking the summer off and I'll be working most everyday. Hopefully, Daddy can make some big steps towards potty training.
Speaking of potty training she is doing really well. She consistently will urinate in the potty but still will go in a diaper too, but stays drier for longer periods of time. I am just hoping she will learn to poop in the potty over the summer.
Met a super inspiring patient today that has an autistic 12 year old son who as she put it has "over come" his obstacles with autism. She gave me several great resources, including more information on the DAN doctors. Paul and I are strongly leaning towards trying to find one to see EK. If nothing else to run some metabolic profiles and allergy testing for us. I have even thought about putting her back on a gluten free diet for the summer to see if we could notice any major improvements in her speech now that her vocabulary is increasing.
EK's diagnosis has been heavy on my heart this week as we have registered her for a new Mother's Day out program for the fall and looked into additional therapies. Sometimes I get so beat down over this and feel like no one can relate. My director of nursing at the hospital I work for has four special needs children and shared such a touching and surreal story with me today.
Our Trip to Holland
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.
The regular school year is wrapping up for Eva Kate next week. It's been a good year at Trace Crossings (special Ed preschool) and Discovery UMC for Mother's Day out. She's had some really great teachers and made some progress along the way.
EK qualified for extended school year at Trace and will be going 2 days a week. We are enrolling her in a gymnastics a class for children with special needs and adding in ABA therapy this summer. Paul is taking the summer off and I'll be working most everyday. Hopefully, Daddy can make some big steps towards potty training.
Speaking of potty training she is doing really well. She consistently will urinate in the potty but still will go in a diaper too, but stays drier for longer periods of time. I am just hoping she will learn to poop in the potty over the summer.
Met a super inspiring patient today that has an autistic 12 year old son who as she put it has "over come" his obstacles with autism. She gave me several great resources, including more information on the DAN doctors. Paul and I are strongly leaning towards trying to find one to see EK. If nothing else to run some metabolic profiles and allergy testing for us. I have even thought about putting her back on a gluten free diet for the summer to see if we could notice any major improvements in her speech now that her vocabulary is increasing.
EK's diagnosis has been heavy on my heart this week as we have registered her for a new Mother's Day out program for the fall and looked into additional therapies. Sometimes I get so beat down over this and feel like no one can relate. My director of nursing at the hospital I work for has four special needs children and shared such a touching and surreal story with me today.
Our Trip to Holland
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.
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