Wednesday, April 27, 2011
Resources
I am taking the week off to enjoy my family, but be sure to check back for more resources. I'll be discussing our expereience in HBOT (hyperbaric therapy), safety measures for in and out of the home, play dates with "typicals", dealing with "well meaning" friends or family, multiples and autism, and much more. Please feel free to post if there is a topic you want to discuss.
Free Apps
I heard about these last yr and noticed that they're FREE again this month for autism awareness. Go to iTunes and download the ABA flashcard apps at kindergarten.com. There are 24 apps and they are all great! My little man has been using them a lot in the last 2 weeks (also in HBOT, but I'll discuss that in a forthcoming post). We've seen so much progress in the last 2 weeks that it's unreal. Each day this week he has said bird, elephant & shark and attempted turtle, giraffe, meerkat, polar bear, and many more. He seems so comfortable after using these apps on the iPad, that he is attempting things around the house too. Tonight he chased my hubby and actually said, "I get you". That is HUGE! I know some people aren't into ABA therapy but my hubby and I are willing to try anything that can possibly help our twinkies. These aren't just for ASD kids either, they are fabulous flashcards for any toddler. A bonus is the classical music that plays after every fourth card. Try them out this month because you have nothing to lose....they are FREE! ;).
Friday, April 22, 2011
I've always loved tulips anyhow
And of course...our Holland. Everyone should be given this poem at their first eval. The doctor can go over the diagnosis, hand you this and say, "Here is your flight itinerary.". This poem can make people understand more than ANY book.
Embrace YOUR 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.
Embrace YOUR Holland!
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reservedEmily 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 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 Special Mother
Everyone needs some uplifting now and again. Here is a poem I absolutely LOVE!
Have your tissues handy & enjoy!
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."
Have your tissues handy & enjoy!
The Special Mother
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."
Funny Conversations
Em: Ehhh. Ehhh. (pointing at swing)
Me: Use your words. Say Words.
Em: Say Words. (then walks towards me grinning with her hand in the air) High Five!
...and so we high five!
Okay, how many of you have had a million conversations like this???
Hope all of you have a wonderful Good Friday.
Me: Use your words. Say Words.
Em: Say Words. (then walks towards me grinning with her hand in the air) High Five!
...and so we high five!
Okay, how many of you have had a million conversations like this???
Hope all of you have a wonderful Good Friday.
Buddy Break
If you haven't checked out a Buddy Break, RUN, don't walk to your computer and sign up NOW! You will be so happy you did! We didn't learn about them until the fall of 2010 and are so happy we joined. We go to Wesley Memorial and LOVE Janis! The people there are Saints. You do a short orientation to describe your kiddo's wants/needs and then you are off for 3 hours. Yes, you read that right, THREE HOURS! ****Ahhhhhh**** can you hear the angels singing???? The first time my hubby and i went, we didn't know what to do with ourselves. We walked around Target (b/c this is such a hot spot, ya know?) for a while and then decided to grab lunch. Talk about a weird concept...eating a HOT lunch. I hadn't done that in 3 yrs! I actually burned my mouth. My meals are usually luke warm at best, so I was actually shocked...how sad. Our meal was pretty quiet because we were so used to taking care of the twins and they are usually the ones making noise. It was like an awkward first date. lol We ended up picking the kids up early that day because we had no idea what to do to fill 3 hours by ourselves. Now, we enjoy every last minute. :) Last weekend we enjoyed a leisurely lunch & even ordered an appetizer. I know, i know, we've gone WILD! Watch out Tampa Bay, ASD parents on break! So you see, I'm telling you this to save your sanity. We don't have family or babysitters, so it's just US. We need that 3 hours every month. Most people think 3 hours, that's nothing, but when you have to be "ON" 24/7, 3 hours feels like a vacation! So go ahead and find YOUR wild...you deserve it!
Here's a recent picture of Em when we picked her up. She was so excited to show off her handmade Easter bonnet and crafts!
Here's a recent picture of Em when we picked her up. She was so excited to show off her handmade Easter bonnet and crafts!
Thursday, April 21, 2011
Friendzone & Sign Language
I just signed up for the sign language course at St James in Tampa. Not sure if many of you know about them, but they have a wonderful special needs program called Friendzone that the twins have been attending for the last yr. Sally Depalma and her crew are amazing, so you should check it out!
Wednesday, April 20, 2011
In Holland...you never know
I'm not sure what this is going to be, because in Holland, you never know. ;) I have 3 yr old boy/girl twins who are both on the spectrum. They are two of the most amazing people i know. Sure, there are days where I pray for patience because poop has been smeared somewhere or just everything that day has gone awry, but most days some miracle has happened...a sound, a word or a tea party. Then there are those moments at night when you check on your angels and thank God for giving you these sweet babies. Join me as I embrace Holland, times two! We're just trying to enjoy it without trampling the tulips.
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