It's been Pirate Week at Daycare. They decided to do something fun for the kids going back to school. This was a picture in Asa's cubby this morning. HA! What a cute Pirate - Now go steal some Gold!
Wednesday, August 25, 2010
Monday, August 23, 2010
1 step forward, 2 steps back...
I'm so proud of New Jersey (never thought I'd say that), but I am very disappointed in Jennifer Aniston. She was on Regis and Kelly last Thursday and dropped the "R" Bomb - not cool.
http://www.huffingtonpost.com/2010/08/19/jennifer-aniston-says-ret_n_687760.html
http://topcelebrityheadlines.com/is-jennifer-aniston-going-to-apologize-for-using-the-r-word-that-was-thursday/
So, I wrote to Regis and Kelly... I copied a little from my Super Hero essay.
Dear Regis and Kelly,
Last Thursday August 19th Jennifer Aniston was on your show. She said a very hurtful word that affects many. My son was born with Down syndrome 3 years ago. He is the light of my life and we are truly blessed to call him our son. Asa is chromosomally enhanced, I thing of him as bionic. He's got extra good stuff, much like Spiderman or Captain Courageous.
When Asa was born, we did not know that he would be a Super Hero. It was not until a week after his birth that we found out about his special powers. We were awe struck to say the least, but I was always taught to embrace life and make it what you want it to be. So, after many tears and those dreams of another time and another place, we started to put the pieces together for our Super Hero life.
I can't say life is any different then an episode of Leave it to Beaver or the Cosby Show. We are who we are, and we do what we have to do - we live life. Ace (that's his Super Hero name) was an ordinary baby and is an ordinary boy. We laugh (a lot), play (a lot), eat ice cream and love to swim. We give our dogs kisses and pull their ears, tell Mommy "NO" and fight with her when we try to get dressed. Our daily life is typical; we put our pants on one leg at a time and throw our socks down the stairs.
As one of many parents in the Down syndrome community we fight everyday with the threads of our being for our children to be included and treated fairly with respect. When Jennifer used the R-Word it hurt, not just a superficial wound but one that cut deep - to hear that word from someone I thought was "above" all that, it crushed my world. I know she used it to refer to herself, but using it at all, even in general conversation is in the wrong. Kelly, your home state even just passed legislation last week to change the way laws are written to eliminate the use of the word! God love New Jersey!
I just wanted to bring it to your attention that there truly is a reason why we should eliminate the R-Word from our vocabulary and I've attached his picture... Every 1 in 800 children are born with Down syndrome - think of how many beautiful faces saying that word affects...
October is National Down syndrome Awareness month - help the nation be aware of how beautiful 47 chromosomes is...
http://www.huffingtonpost.com/2010/08/19/jennifer-aniston-says-ret_n_687760.html
http://topcelebrityheadlines.com/is-jennifer-aniston-going-to-apologize-for-using-the-r-word-that-was-thursday/
So, I wrote to Regis and Kelly... I copied a little from my Super Hero essay.
Dear Regis and Kelly,
Last Thursday August 19th Jennifer Aniston was on your show. She said a very hurtful word that affects many. My son was born with Down syndrome 3 years ago. He is the light of my life and we are truly blessed to call him our son. Asa is chromosomally enhanced, I thing of him as bionic. He's got extra good stuff, much like Spiderman or Captain Courageous.
When Asa was born, we did not know that he would be a Super Hero. It was not until a week after his birth that we found out about his special powers. We were awe struck to say the least, but I was always taught to embrace life and make it what you want it to be. So, after many tears and those dreams of another time and another place, we started to put the pieces together for our Super Hero life.
I can't say life is any different then an episode of Leave it to Beaver or the Cosby Show. We are who we are, and we do what we have to do - we live life. Ace (that's his Super Hero name) was an ordinary baby and is an ordinary boy. We laugh (a lot), play (a lot), eat ice cream and love to swim. We give our dogs kisses and pull their ears, tell Mommy "NO" and fight with her when we try to get dressed. Our daily life is typical; we put our pants on one leg at a time and throw our socks down the stairs.
As one of many parents in the Down syndrome community we fight everyday with the threads of our being for our children to be included and treated fairly with respect. When Jennifer used the R-Word it hurt, not just a superficial wound but one that cut deep - to hear that word from someone I thought was "above" all that, it crushed my world. I know she used it to refer to herself, but using it at all, even in general conversation is in the wrong. Kelly, your home state even just passed legislation last week to change the way laws are written to eliminate the use of the word! God love New Jersey!
I just wanted to bring it to your attention that there truly is a reason why we should eliminate the R-Word from our vocabulary and I've attached his picture... Every 1 in 800 children are born with Down syndrome - think of how many beautiful faces saying that word affects...
October is National Down syndrome Awareness month - help the nation be aware of how beautiful 47 chromosomes is...
Wednesday, August 18, 2010
A Step in the Right Direction - Hoorah!
Opponents of R-word Win Key Legislative Victory in New Jersey
Can I get a Hallelujah for New Jersey!
FOX NEWS REPORT:
http://www.foxnews.com/politics/2010/08/17/opponents-r-word-win-key-legislative-victory-new-jersey/?test=latestnews
Can I get a Hallelujah for New Jersey!
FOX NEWS REPORT:
http://www.foxnews.com/politics/2010/08/17/opponents-r-word-win-key-legislative-victory-new-jersey/?test=latestnews
Monday, August 16, 2010
Vacation
So, I haven't posted about vacation yet because I didn't want it to overshadow the post about my Grammie. We ended up coming home early from Maine so my mom could be there to help take care of her. Her funeral and Celebration of Life was perfect - everything I think she would of wanted it to be. On that note here are some pics from the few days we had in Maine.
It was a kind of overcast day at the beach - but it was perfect for not getting "too" hot. I had dug a moat around this rock to keep the water in it, it worked great! Ace is not a huge fan of the big bad ocean - he likes to stick to the puddles.
And THIS is the face and the gesture I get the most of these days. It is a "MOM"!!, it rears it's ugly head mostly when The Little Man doesn't want to do something or wants something, and then there are times when he just thinks it's funny.
It was a kind of overcast day at the beach - but it was perfect for not getting "too" hot. I had dug a moat around this rock to keep the water in it, it worked great! Ace is not a huge fan of the big bad ocean - he likes to stick to the puddles.There is this great playground at the harbor that the kids love, Mr. Asa is a whiz! He does great, I just get nervous with the open areas with climbing and pole things.
And THIS is the face and the gesture I get the most of these days. It is a "MOM"!!, it rears it's ugly head mostly when The Little Man doesn't want to do something or wants something, and then there are times when he just thinks it's funny.Monday, August 9, 2010
Elizabeth Howe Spaulding aka "Tish"
I know she would say, "Ugh, that's a God awful picture of me!" I say, love you Grammie! It's a beautiful picture!Elizabeth Howe Spaulding was a woman of great pride and dignity who could sew, knit or needlepoint anything! Life was never about have nots, but the love and abundance of the haves.
She gave birth to 3 daughters and 3 sons (a biological Brady Bunch), who then gave birth to a small army of children who share the same pride of calling each other cousins and yes 2nd cousins. This army consists of 13 grandchildren and 17 (1 due this week) great-grandchildren. It's hard to piece together the thought process of not having her here, she's not suppose to be gone, she's Grammie. The Family Matriarch, the Leader of the Pack, Momma Bear out to protect her young. She was a tough nut and a even tougher one when it came to stakes of the heart. She loved with her entire body and soul, whole hearted and never faltered. Unless you pissed her off, then you knew you were in trouble and on that list you hoped to get off of fast!
You could say she lived a very full life and died of a broken heart. My grandmother had a bad ticker and fought it for many years. I guess it was too full of love to give up on us :-)
As for Grandmothers she was one of the best, her picture should be beside the definition in Webster... She made the best homemade doughnuts (this is a universal truth), bread, muffins, anything with a bit of flour and that could rise. Handmade gifts sewn with the threads of her being, and hugs and kisses that could make the biggest iceberg melt, I bet she added to Global Warming ;-) She would share in the deepest conversations and make you laugh at the smallest things. She was blessed with a head of snow white hair at a very young age, she easily could of passed for Mrs. Claus, but you'd be wise not to tell that to her face.
We are all at a loss with out her here, she always knew the direction and led us down the righteous path.
Lead us still with your memory, I will miss you greatly and my heart aches with out you here, but I know now yours is healed - may your soul bless all that were lucky enough to call you Grammie...
Rest in peace...
Your loving granddaughter,
Jacqueline Elizabeth Derrick Henry, 6th grandchild...
Thursday, July 29, 2010
My Letter to Oprah
Dear Oprah Producers,
My name is Jackie and I am the Mother of a wonderful little boy named Asa. Asa is chromosomally enhanced, I think of him as bionic. He's got extra good stuff, much like Spiderman or Captain Courageous.
There is a very special group of people who are bonding together to yell from the mountaintops, "CELEBRATE DOWN SYNDROME"! October is National Down syndrome awareness month and what a great show it would make to do a little celebrating in honor of it! I am one of those people whose life has been changed by 3 copies of that magical chromosome 21!
It would be fantastic if Oprah could help us "Yell it from the Mountaintops" how amazing it is to be a parent of a child with Down syndrome, it is very hard to describe in 2000 characters or less.
There is a whole community that shares in these pleasures with me, most have blogs including myself (www.henryfamily-lifeiswhatumakeit.blogspot.com) that can help me explain. Enjoying the Small Things (www.kellehampton.com), Life with Chicky, Bubba and Nika (www.thebalsisfamily.blogspot.com) and one great web board www.downsyn.com - it was started by a couple after the birth of their son in 1997 as a place where parents can go ask questions, share their stories and be a part of a Down syndrome family from around the world!
It may be 3 copies of the 21st chromosome that causes Down syndrome, but it's purely magic what it creates.
Thank you for your time.
Sincerely,
Jackie H.
My name is Jackie and I am the Mother of a wonderful little boy named Asa. Asa is chromosomally enhanced, I think of him as bionic. He's got extra good stuff, much like Spiderman or Captain Courageous.
There is a very special group of people who are bonding together to yell from the mountaintops, "CELEBRATE DOWN SYNDROME"! October is National Down syndrome awareness month and what a great show it would make to do a little celebrating in honor of it! I am one of those people whose life has been changed by 3 copies of that magical chromosome 21!
It would be fantastic if Oprah could help us "Yell it from the Mountaintops" how amazing it is to be a parent of a child with Down syndrome, it is very hard to describe in 2000 characters or less.
There is a whole community that shares in these pleasures with me, most have blogs including myself (www.henryfamily-lifeiswhatumakeit.blogspot.com) that can help me explain. Enjoying the Small Things (www.kellehampton.com), Life with Chicky, Bubba and Nika (www.thebalsisfamily.blogspot.com) and one great web board www.downsyn.com - it was started by a couple after the birth of their son in 1997 as a place where parents can go ask questions, share their stories and be a part of a Down syndrome family from around the world!
It may be 3 copies of the 21st chromosome that causes Down syndrome, but it's purely magic what it creates.
Thank you for your time.
Sincerely,
Jackie H.
Monday, July 26, 2010
Random Rambling
I always feel like my posts need to be accompanied by pictures - I don't have any new pictures right now... As usually we've been busy, Brian's softball team, work, therapy, work, therapy, shopping for new (used) cars without any dings, dents or scratches. This is Brian's scenario currently. The poor guy has had a 1994 Toyota pick-up for 6 years. This is a guy who's previous vehicles would be a brand new Jetta every couple of years - that received a lot of washing, waxing and "wet" tire look. When we got married it was not phys able to have 2 "nice" car payments. Well, the old truck still looks good, but her brakes not so much. I prefer a truck that has them! So, it's off to find a "good" used truck with high miles but looks better then it's miles. It's going to be a challenge!
Mr Asa is doing great! He's saying more and more words everyday and repeating a lot more too! I think his new therapy with the school district is going beautifully. It's always hard to figure out "why" when he has a growth spurt. Is it really therapy, or is it us? Everything is always a "learning" experience. There is not a day that goes by that I'm not trying to work in a therapy thing or a learning thing in ALL that we do. And sometimes I feel like I fail him because I'm not sure if I'm doing enough... I think part of the increase in speech is due to daycare - it will be a month that he's been full time and if he doesn't speak up he may miss out. At home we know what he wants through his signs and body language, but daycare he hears the other kids and I think is picking up a lot faster.
We've also been to our follow up appointment for Asa's AAI neck scan. The AAI neck scan is a recommended x-ray of the neck for any child with Down syndrome. It was originally established for kids who wanted to participate in Special Olympics, due to the fact that some kids with DS have an instability in their neck because of the spacing between the C1 and C2 vertebrae, if there is too much spacing their is a small chance that the spinal cord could get pinched between the two. Asa's instability was borderline and the very caring and easy to understand Orthopedist specifically pointed out measured and re-measured and is not concerned about Asa's neck. All he said was that Asa would only need another x-ray before he starts to play sports - and this my friends was said with no hesitation (ah, um - ex-pediatrician listen up!) More on the health front - we go tomorrow to the Cardiologist. No worries, just a routine check-up (another ah, um) Asa's EX-pediatrician never followed the DS Healthcare guidelines from the get go - I think he is too set in his expensive fancy car inheritance "I know better then some silly guideline" to care about following routine! I digress, Asa should of had an EKG when was born - he did not. There weren't any obvious factors to his ex-pediatrician to be concerned - fine. I want to make sure there is NOT. Lastly, we go see the GI doc after our well overdue vacation next week. Celiac on his annual blood work came back high - please pray for my sanity, cooking, meal planning and Asa's belly that we DO NOT have go gluten free!
On vacation next week - I hope to have lots of pictures then!
Mr Asa is doing great! He's saying more and more words everyday and repeating a lot more too! I think his new therapy with the school district is going beautifully. It's always hard to figure out "why" when he has a growth spurt. Is it really therapy, or is it us? Everything is always a "learning" experience. There is not a day that goes by that I'm not trying to work in a therapy thing or a learning thing in ALL that we do. And sometimes I feel like I fail him because I'm not sure if I'm doing enough... I think part of the increase in speech is due to daycare - it will be a month that he's been full time and if he doesn't speak up he may miss out. At home we know what he wants through his signs and body language, but daycare he hears the other kids and I think is picking up a lot faster.
We've also been to our follow up appointment for Asa's AAI neck scan. The AAI neck scan is a recommended x-ray of the neck for any child with Down syndrome. It was originally established for kids who wanted to participate in Special Olympics, due to the fact that some kids with DS have an instability in their neck because of the spacing between the C1 and C2 vertebrae, if there is too much spacing their is a small chance that the spinal cord could get pinched between the two. Asa's instability was borderline and the very caring and easy to understand Orthopedist specifically pointed out measured and re-measured and is not concerned about Asa's neck. All he said was that Asa would only need another x-ray before he starts to play sports - and this my friends was said with no hesitation (ah, um - ex-pediatrician listen up!) More on the health front - we go tomorrow to the Cardiologist. No worries, just a routine check-up (another ah, um) Asa's EX-pediatrician never followed the DS Healthcare guidelines from the get go - I think he is too set in his expensive fancy car inheritance "I know better then some silly guideline" to care about following routine! I digress, Asa should of had an EKG when was born - he did not. There weren't any obvious factors to his ex-pediatrician to be concerned - fine. I want to make sure there is NOT. Lastly, we go see the GI doc after our well overdue vacation next week. Celiac on his annual blood work came back high - please pray for my sanity, cooking, meal planning and Asa's belly that we DO NOT have go gluten free!
On vacation next week - I hope to have lots of pictures then!
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About Me
- Jackie
- My name is Jackie and I am a mother, wife, friend, sister, daughter, cousin to many, and a dreamer of sorts. I dream of many things and one is a life full of acceptance, achievement and success for my Super Hero son Asa. He's got extra good stuff that comes with a little thing called Down syndrome. We live in the beautiful state of New Hampshire with our 2 Bulldogs; Rosie, Frankie and 36 chickens.