At the most recent Down syndrome resource group meeting I met a woman my age that has a daughter with DS who will be starting kindergarten this fall. I actually went to school with her but we didn't hang out together (she must ot have been a partier). She was talking to one of the mothers at the table Jayson and I sat at and explained that the school district was trying to put her daughter right into the special needs school. This is something I hear about ALL the time on the DS forum. I have learned that it is so much better for our children to be mainstreamed because frankly, to be in a classroom with all special needs students their little minds aren't being tapped for their full potential. Not all people with DS are severely retarded, most are in the low to mid range and maybe some not at all (according to their IQ's). SO fight, fight, fight once again for our babies to belong.
Fast forward to last week when Jayson and I met up with a couple we know. We talked about Vinnie and Rudy and school. I knew this woman worked in the school district I just spoke of so I went on to tell her about what I heard. She said she heard of this case. She also went on to say "sometimes it's the severity", this is where I get to put in my two cents and advocate for this family. Can you tell I am proud? Anyway, "why not try it, if it doesn't work being mainstreamed it's always easy to change it. It's much harder to go from bottom to top than it is from top to bottom. Why not try it?". I truly think she "got" it, so I am hoping she went to work the next day and told the story of the night before. I might add that this woman has a handicap of her own.
Thursday, May 29, 2008
Wednesday, May 28, 2008
I think I broke my toe and other random thoughts...
I tripped over Rudy's animal hospital kit and my toes hurts, a lot!
I had Vinnie sitting on my lap facing me while I supported his trunk and he looked at me for awhile but then decided that his feet were more intriguing. He then talked to them for a bit with his lips pursed, it was pretty darn cute. He is doing very well with his gross motor skills. He will: while on his belly push up onto his elbows and sometimes almost straight armed, rolls from belly to back, roll from a side laying postion to belly and get his arms postitioned correctly to lift up his trunk (this is new so not as often), on his back he reaches for things (sometimes), on his back he does a lot of moving and spins himself about 1/2 way around, track objects like a champ, sit while supported for a fair amount of time, bears weight on his legs a little and today he tried to takes steps when the OT (occupational therapist) let him bear weight on his legs. His head is still al little floppy at times but heis doing so well.
Apparently on "So you think you can dance" tonight there was a gentleman with Down syndrome. He didn't make it through but I hear he made a little speech at the end about how it's not always about winning and that he did this so people could see that people with disabilities CAN do things like the rest of us! BRAVO Mr. Whomever you are, BRAVO!
Then I hear in Australia they have a show similar to ER and the most recent episode showed a teen pregnant with her brother's baby and that the baby might have Down syndrome. Yuck, way to go let's make everyone think that DOwn syndrome is caused by incest! One of the posters on the Down syndrome forum I frequent already had their daughter approached about it...shame on you Aussie channel!
I am going to every once in a while post a website or blog that I LOVE and today is Daniel Drinker's DanDrinker.blogspot.com I LOVE THIS KID AND HIS LITTLE BROTHER!!!
I had Vinnie sitting on my lap facing me while I supported his trunk and he looked at me for awhile but then decided that his feet were more intriguing. He then talked to them for a bit with his lips pursed, it was pretty darn cute. He is doing very well with his gross motor skills. He will: while on his belly push up onto his elbows and sometimes almost straight armed, rolls from belly to back, roll from a side laying postion to belly and get his arms postitioned correctly to lift up his trunk (this is new so not as often), on his back he reaches for things (sometimes), on his back he does a lot of moving and spins himself about 1/2 way around, track objects like a champ, sit while supported for a fair amount of time, bears weight on his legs a little and today he tried to takes steps when the OT (occupational therapist) let him bear weight on his legs. His head is still al little floppy at times but heis doing so well.
Apparently on "So you think you can dance" tonight there was a gentleman with Down syndrome. He didn't make it through but I hear he made a little speech at the end about how it's not always about winning and that he did this so people could see that people with disabilities CAN do things like the rest of us! BRAVO Mr. Whomever you are, BRAVO!
Then I hear in Australia they have a show similar to ER and the most recent episode showed a teen pregnant with her brother's baby and that the baby might have Down syndrome. Yuck, way to go let's make everyone think that DOwn syndrome is caused by incest! One of the posters on the Down syndrome forum I frequent already had their daughter approached about it...shame on you Aussie channel!
I am going to every once in a while post a website or blog that I LOVE and today is Daniel Drinker's DanDrinker.blogspot.com I LOVE THIS KID AND HIS LITTLE BROTHER!!!
Tuesday, May 27, 2008
Welcome...
I decided to let everyone know about my little blog here. This will eleviate the constant e-mails about Down syndrome and/or other things I feel everyone needs to know about. This way you can look if you want...although I think you should, it's good for you. I mostly hope that this blog will help you understand: Down syndrome, the effects it has and will have on us, our feelings, our fears, our thoughts. Welcome to my world, tread lightly please.
And to end I want to say that I am no writer and my grammar is probably all wrong, no need to leave comments about it (Karen) but feel free to let me know in a quick e-mail or in person.
And to end I want to say that I am no writer and my grammar is probably all wrong, no need to leave comments about it (Karen) but feel free to let me know in a quick e-mail or in person.
Sunday, May 4, 2008
Mom Brain!
The boys get baptized on May 11th, Mother's day! The godmother and I are suppose to meet the priest at the church Monday at 11am. Rudy is starting a playgroup, as a peer, Monday 10-12. So obviously there is a conflict here right? It's 11:55pm on Saturday night and I JUST realized it!! So before I forgot I sent both the godmother and the priest a quick e-mail explaining how I am a complete flake right now.
Tomorrow is the MS walk. My friend Rebecca has MS. I think we have known eachother forever, her sister and mine (older than us) are the same age so they went to school together and maybe Girl Scouts too. We knew eachother before kindergarten and were in the same class from K-5. She's pretty amazing, I'm not sure she realizes it though. Anyway, it looks like rain tomorrow and that means we won't be able to go because I can't bring the kids out for a long walk in the rain!
Last night Rudy (and us too) met Riley. Jayson and I met Riley's parents at the Down syndrome resource group meeting last weekend. Riley is 4 and AMAZING! She just recently learned to walk, is super smart, she knows who the speaker of the house is!! I don't know that!! Sometimes her speech is a little uncomprehendable but you ask her to tell you again and she will as many times as you need it. Rudy LOVED playing at Riley's house. I thought for a second he noticed something different about her but he just played away, I hope that acceptance never ends! We can't wait to spend more time with Riley and her family.
I guess that's all for now.
Tomorrow is the MS walk. My friend Rebecca has MS. I think we have known eachother forever, her sister and mine (older than us) are the same age so they went to school together and maybe Girl Scouts too. We knew eachother before kindergarten and were in the same class from K-5. She's pretty amazing, I'm not sure she realizes it though. Anyway, it looks like rain tomorrow and that means we won't be able to go because I can't bring the kids out for a long walk in the rain!
Last night Rudy (and us too) met Riley. Jayson and I met Riley's parents at the Down syndrome resource group meeting last weekend. Riley is 4 and AMAZING! She just recently learned to walk, is super smart, she knows who the speaker of the house is!! I don't know that!! Sometimes her speech is a little uncomprehendable but you ask her to tell you again and she will as many times as you need it. Rudy LOVED playing at Riley's house. I thought for a second he noticed something different about her but he just played away, I hope that acceptance never ends! We can't wait to spend more time with Riley and her family.
I guess that's all for now.
Friday, May 2, 2008
From April 26th, 2008
Saturday, April 26, 2008
Random thoughts, scattered.
Current mood: Overwhelmed
Category: Overwhelmed Life
I'm feeling overwhelmed, overtired and so over this stupid Down syndrome. Everyday I thank God for my sons and the fact that Vinnie so far doesn't have any health problems. But the future for him overwhelms me sometimes and I feel selfish for wanting a life outside of him and his disability. I try to see him as just a baby but the fact that he does have Down syndrome flutters its way into my thoughts everytime I look at him. I am not saying that it's a bad thing but I have been trying to not see that and when it flutters on into my brain I try to push it out. I belong to a little online Down syndrome group and everyone is wonderful and someone once said, to either myself or someone else beginning their journey into this unknown, that eventually we will just see our child and wonder why people might be looking at him and then remember that he has Ds. I can't see that happening, does that make me a bad mother? I love him with everything I have and I wouldn't change him, he is perfect. But society, SOCIETY IS CRUEL! How could I not see the Ds when I will be worrying all the time about how people will treat him? And what about Rudy? I already feel guilty for doing routine baby things with Vinnie, feeding, diapering. What about when therapies are going on full force or if a health problem arises? The reality is we will have to work with and spend more time on Vinnie. OVERHWELMED.
Random thoughts, scattered.
Current mood: Overwhelmed
Category: Overwhelmed Life
I'm feeling overwhelmed, overtired and so over this stupid Down syndrome. Everyday I thank God for my sons and the fact that Vinnie so far doesn't have any health problems. But the future for him overwhelms me sometimes and I feel selfish for wanting a life outside of him and his disability. I try to see him as just a baby but the fact that he does have Down syndrome flutters its way into my thoughts everytime I look at him. I am not saying that it's a bad thing but I have been trying to not see that and when it flutters on into my brain I try to push it out. I belong to a little online Down syndrome group and everyone is wonderful and someone once said, to either myself or someone else beginning their journey into this unknown, that eventually we will just see our child and wonder why people might be looking at him and then remember that he has Ds. I can't see that happening, does that make me a bad mother? I love him with everything I have and I wouldn't change him, he is perfect. But society, SOCIETY IS CRUEL! How could I not see the Ds when I will be worrying all the time about how people will treat him? And what about Rudy? I already feel guilty for doing routine baby things with Vinnie, feeding, diapering. What about when therapies are going on full force or if a health problem arises? The reality is we will have to work with and spend more time on Vinnie. OVERHWELMED.
From April 17th, 2008
Thursday, April 17, 2008
An apology...
Current mood: ashamed
I have a friend who had a baby not long after Vinnie was born. I said congratualtions and that has been about it. I hope she understands that I love her more than anything and I am so happy that you has this new baby in her life. I also hope that she understands that right now all I can do is say congratulations, I can't bring myself to do much more right now even though I want to look at all the pictures and ask about the baby. I am being selfish but I know/hope that my friend will still be there when I come around. So here it is, how I feel.
I will start off with the essay that I am pretty sure I have posted before.
Welcome to Holland
By Emily Pearl 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 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.
So, you see. I feel left behind. I am in one country and you are in another. We were suppose to make this trip to Italy together, we were suppose to be able to talk about the sites and future visits. We were suppose to compare notes. So, here I am stuck in Holland and it IS beautiful here and I wouldn't take Italy now even if I could. But, the loss of Italy still hurts and will for some time. While I love you and your baby I hope that you understand that right now I am in my own little world of Down syndrome and I will soon pop my head out to say hello but for now, understand that I am here in Holland and you are so very far away in Italy.
An apology...
Current mood: ashamed
I have a friend who had a baby not long after Vinnie was born. I said congratualtions and that has been about it. I hope she understands that I love her more than anything and I am so happy that you has this new baby in her life. I also hope that she understands that right now all I can do is say congratulations, I can't bring myself to do much more right now even though I want to look at all the pictures and ask about the baby. I am being selfish but I know/hope that my friend will still be there when I come around. So here it is, how I feel.
I will start off with the essay that I am pretty sure I have posted before.
Welcome to Holland
By Emily Pearl 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 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.
So, you see. I feel left behind. I am in one country and you are in another. We were suppose to make this trip to Italy together, we were suppose to be able to talk about the sites and future visits. We were suppose to compare notes. So, here I am stuck in Holland and it IS beautiful here and I wouldn't take Italy now even if I could. But, the loss of Italy still hurts and will for some time. While I love you and your baby I hope that you understand that right now I am in my own little world of Down syndrome and I will soon pop my head out to say hello but for now, understand that I am here in Holland and you are so very far away in Italy.
From April 13th, 2008
Church...4/13/08
Current mood: grateful
At church today the woman who has a 40yr old son with Ds came up to me and asked how the baby was doing. It was that tone that we use when we know about the Ds but don't come out and say it. I reply that he is doing very well and she asks if I have got in touch with the resource group and made the first call (basically, other parents make themselves available for support and questions). I broke down and answered yes. I broke down more because of all the people out there that are supporting me, making me feel welcome and calming my fears. She apologized for approaching me and I said to her that I am glad she came over, that I was just emotional. She said "I know, it was 40 years ago" and points to her son. Her son meanwhile is looking at me, wondering why I am crying. He asked why and his mom and I both just said it's ok I am ok. He asks where my husband was (home sick with Rudy) and then asks if I needed a hug. I said "yes, I would really love a hug right now". Why are hugs so frowned upon? People need hugs! I don't want to have to teach my son that sometimes hugs are not appropriate. Hugs are great!
Current mood: grateful
At church today the woman who has a 40yr old son with Ds came up to me and asked how the baby was doing. It was that tone that we use when we know about the Ds but don't come out and say it. I reply that he is doing very well and she asks if I have got in touch with the resource group and made the first call (basically, other parents make themselves available for support and questions). I broke down and answered yes. I broke down more because of all the people out there that are supporting me, making me feel welcome and calming my fears. She apologized for approaching me and I said to her that I am glad she came over, that I was just emotional. She said "I know, it was 40 years ago" and points to her son. Her son meanwhile is looking at me, wondering why I am crying. He asked why and his mom and I both just said it's ok I am ok. He asks where my husband was (home sick with Rudy) and then asks if I needed a hug. I said "yes, I would really love a hug right now". Why are hugs so frowned upon? People need hugs! I don't want to have to teach my son that sometimes hugs are not appropriate. Hugs are great!
From March 31st, 2008
Monday, March 31, 2008
Three things/feelings I will NEVER forget
Current mood: blessed
1. When Rudy was about 3 months old we were living at my mother in laws while we fixed up our new home. We went out shopping, starting at Bed Bath and Beyond where Rudy got cranky (he was a colicky baby) so we held him until he fell asleep and then back into his car seat that snapped into his stroller. Next stop was mattress shopping at Bob’s (Bobopedic!!), we got there and as I was getting the stroller out, Jayson was getting the car seat. I heard a coconut hit the ground and immediately knew it was my son. We never strapped him back into his car seat, he had blankets over him and it just never happened. We jumped into the car and raced to Baystate Hospital, jumping curbs, blowing lights and going into oncoming traffic to get there. He had a fractured skull but nothing else and was fine. So, number one is the sound of my sons head cracking on the asphalt. It replays often and my body shakes everytime.
2. Vinnie, 4 days old. We were still at Cooley Dickinson Hospital and he was in the nursery with oxygen hooked up. I was rooming there (thank goodness they have that option!) and they were calling me when it was time to nurse him (if I wasn’t there already). So on February 9th about 11pm I was called, I peed and set off to the nursery where upon turning the corner I see all the nurses running towards the side of the room where Vinnie was (he was there usually by himself, no other babies on that side) and them yelling to get the doctor stat. A pure panic had obviously overcome everyone and before I could get into the room to see my son a nurse rushed me into my room and basically left me there. I walked out into the hallway after frantically calling my husband to rush to the hospital. I was numb not knowing what was going on with my newborn son. That feeling is 2, I will never forget the helpless feeling, not knowing if my newborn baby was going to live.
3. At Baystate, Monday February 11th. It was about 9:30 pm, Jayson and I were getting ready to leave the NICU to get Rudy and head home. The doctor came over and went over the echo of the heart that they had done earlier along with other tests. She explained that everything went well and then went on to tell us something like this "there is one test though that came back positive and that was his Trisomy 21..." at that moment my heart sunk, I knew he had Down syndrome but to hear it was something totally different. I still cry when I hear it in my head, I am crying now...one single tear falls for the son we expected, the "perfect child". But that is all that will ever fall because, he is perfect. Every extra chromosome in his body is perfect. His flabby neck known as the nuchal fold is perfect. His little, lowset ears are perfect. His low muscle tone body that is so warm right now in my arms is perfect. And when he gets older and reaches any milestone at any pace it will be perfect, just the way it was meant to be. So, 3 is that feeling of finally finding out what I already knew, the words spoken by the doctor that cut so deep with such pain but lasted just a few moments.
Three things/feelings I will NEVER forget
Current mood: blessed
1. When Rudy was about 3 months old we were living at my mother in laws while we fixed up our new home. We went out shopping, starting at Bed Bath and Beyond where Rudy got cranky (he was a colicky baby) so we held him until he fell asleep and then back into his car seat that snapped into his stroller. Next stop was mattress shopping at Bob’s (Bobopedic!!), we got there and as I was getting the stroller out, Jayson was getting the car seat. I heard a coconut hit the ground and immediately knew it was my son. We never strapped him back into his car seat, he had blankets over him and it just never happened. We jumped into the car and raced to Baystate Hospital, jumping curbs, blowing lights and going into oncoming traffic to get there. He had a fractured skull but nothing else and was fine. So, number one is the sound of my sons head cracking on the asphalt. It replays often and my body shakes everytime.
2. Vinnie, 4 days old. We were still at Cooley Dickinson Hospital and he was in the nursery with oxygen hooked up. I was rooming there (thank goodness they have that option!) and they were calling me when it was time to nurse him (if I wasn’t there already). So on February 9th about 11pm I was called, I peed and set off to the nursery where upon turning the corner I see all the nurses running towards the side of the room where Vinnie was (he was there usually by himself, no other babies on that side) and them yelling to get the doctor stat. A pure panic had obviously overcome everyone and before I could get into the room to see my son a nurse rushed me into my room and basically left me there. I walked out into the hallway after frantically calling my husband to rush to the hospital. I was numb not knowing what was going on with my newborn son. That feeling is 2, I will never forget the helpless feeling, not knowing if my newborn baby was going to live.
3. At Baystate, Monday February 11th. It was about 9:30 pm, Jayson and I were getting ready to leave the NICU to get Rudy and head home. The doctor came over and went over the echo of the heart that they had done earlier along with other tests. She explained that everything went well and then went on to tell us something like this "there is one test though that came back positive and that was his Trisomy 21..." at that moment my heart sunk, I knew he had Down syndrome but to hear it was something totally different. I still cry when I hear it in my head, I am crying now...one single tear falls for the son we expected, the "perfect child". But that is all that will ever fall because, he is perfect. Every extra chromosome in his body is perfect. His flabby neck known as the nuchal fold is perfect. His little, lowset ears are perfect. His low muscle tone body that is so warm right now in my arms is perfect. And when he gets older and reaches any milestone at any pace it will be perfect, just the way it was meant to be. So, 3 is that feeling of finally finding out what I already knew, the words spoken by the doctor that cut so deep with such pain but lasted just a few moments.
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