Every once in a while I come across a person that is advocating for their child. And I spot them a mile away. They are selfish advocates. A selfish advocate is someone who seeks glory out of advocating for his or child, for the attention. As a result the child suffers at the hand of the parents attention seeking. I have seen this many times, and frankly it up sets me.
When I started the idea for a BC book and I merged with Kathy I was more then willing to give any control. She was wonderful and I knew it the moment I heard her voice. This lady is going to make my dream a reality. And she did in more ways then I could have ever guessed. You see my dream was not to be famous for editing a book that told the joys of Down syndrome it was to make a difference. And to me this book is making a difference so the dream is alive and well.
There are women and men that would have never done that. Given it up for the greater good. I know my limitations and I know with out Kathy this could not have happened so fast, and gone so far. With her unselfish dedication and willingness to include so many on her project and then give everyone else the credit when it was truly her vision that got us where we are today is amazing. We alll did our parts, Carla, Joel, Tara, and Rebecca were generous with their time and dedication and never ask for anything in return. These wonderful women are what UNSELFISH Advocay is about. I am so proud to call myself their friend and co worker on this wonderful endvevor.
I really can not deal with the person who is always me and I, even when other people are involved. I feel when you are dealing with Down syndrome there is no Me or I we are all in it as group a family together. I have no room for selfish advocacy in my life, none. I need to fill my space with people who realize the greater good of our kids is more important then any fame and fortune we could achieve because of them.
Let us remember that our children all of them are special and for whatever reason we were blessed with them. It so easy to get caught up in the me and I in this. Make it your calling to advocate for them. But remember you are advocating for them not for yourself.
Saturday, November 04, 2006
Sunday, October 22, 2006
Makes you Wonder
You know every once in a while a friend makes the most ingorant comment and you want to throw up your hands and quit. I try very hard to educate about Down syndrome and that it is not the "suffering early in life death sentence" that some people want you to beleive. Hard sometimes yes.
But what is harder then any Dr.'s appointment, therapy or school is the perception out that about our kids, that they are stupid. First of all Bryan has scored in the normal range congnatively so far he has a typical score on all the tests he has taken. And I tell that little mind is always going.
Now yesterday I was at a birthday party and a very good friend of mine was there. She was in on the Diagnosis from the start and has been around for all of Bryan's 20 months thus far. Now we have not seen her since July do to children busy schedules etc. So when she saw him it started out really nice. He got so big, how cute it is he etc. Then she said you mean he holds his up! And he can crawl already, OMG he is standing I though they did not do that stuff so young. Ok, I blew off the ignorate comment, then he started showing off his signs and was talking a bit and she says; you mean he understands you, he can talk and do sign language? What did she think he was a bump that would never do anything?
It pissed me off, because that is the perception of our kids, they are miserable suffering little babies with no hope of a normal life. I have one thing to say BULL SHIT!!!! and I am tired of it frankly. Our kids are smart, creative, intelegent and happy children. Why some people insist on saying otherwise when they do not know just amazes me.
Now what scares me, is her not knowing Bryan is more typical then not. She might repeat wrong information about my son to someone else. You know they ones who say they can give out information about Down syndrome because of family and friends they know.
But what is harder then any Dr.'s appointment, therapy or school is the perception out that about our kids, that they are stupid. First of all Bryan has scored in the normal range congnatively so far he has a typical score on all the tests he has taken. And I tell that little mind is always going.
Now yesterday I was at a birthday party and a very good friend of mine was there. She was in on the Diagnosis from the start and has been around for all of Bryan's 20 months thus far. Now we have not seen her since July do to children busy schedules etc. So when she saw him it started out really nice. He got so big, how cute it is he etc. Then she said you mean he holds his up! And he can crawl already, OMG he is standing I though they did not do that stuff so young. Ok, I blew off the ignorate comment, then he started showing off his signs and was talking a bit and she says; you mean he understands you, he can talk and do sign language? What did she think he was a bump that would never do anything?
It pissed me off, because that is the perception of our kids, they are miserable suffering little babies with no hope of a normal life. I have one thing to say BULL SHIT!!!! and I am tired of it frankly. Our kids are smart, creative, intelegent and happy children. Why some people insist on saying otherwise when they do not know just amazes me.
Now what scares me, is her not knowing Bryan is more typical then not. She might repeat wrong information about my son to someone else. You know they ones who say they can give out information about Down syndrome because of family and friends they know.
Thursday, October 19, 2006
The Little Things Mean A lot
You know very often I watch the boys together all three of them. Sometimes I get a little sad Bryan is only starting to pull to stand and four point crawling because he loves to be involved of every aspect of Danny and Ty's life.
When their friends are over Bryan (who knows where there room is) crawls into their room in seconds waiting to be a part of whatever is going on. Even when it is just them, he looks for them.
Well tonight they were in their room and Bryan was amusing himself with me in the playroom. He was rolling the soccer ball, then would crawl after it and roll it to the other side and just go back and forth. Well Ty saw this and sat down to roll the ball to him, then our resident clown Danny comes in and starts batting the soft soccer ball off his head. Oh my God, Bryan was laughing so hard he fell backwards.
They love making that child laugh more then anything, balls off their heads, silly voices, singing Broadway show tunes. They love that little brother they both wanted to so badly. Down syndrome means nothing to them at all.
So sometimes I watch them together and it is just the little things they do with him that mean so much. It makes me proud to be their mom. Bryan is the best thing that ever happened to them. They are not burdened by him at all, in fact I am proud they are learning that everyone is deserving of respect and love.
They were told I choose to keep him and why even at their young age they understood, and they tell Bryan, mommy knew we were ok and we were going to be her kids, but she choose to have you just the way you are. We are special to her in one way and you are special to all of us in another. And they are only 7 & 6 years old.
When their friends are over Bryan (who knows where there room is) crawls into their room in seconds waiting to be a part of whatever is going on. Even when it is just them, he looks for them.
Well tonight they were in their room and Bryan was amusing himself with me in the playroom. He was rolling the soccer ball, then would crawl after it and roll it to the other side and just go back and forth. Well Ty saw this and sat down to roll the ball to him, then our resident clown Danny comes in and starts batting the soft soccer ball off his head. Oh my God, Bryan was laughing so hard he fell backwards.
They love making that child laugh more then anything, balls off their heads, silly voices, singing Broadway show tunes. They love that little brother they both wanted to so badly. Down syndrome means nothing to them at all.
So sometimes I watch them together and it is just the little things they do with him that mean so much. It makes me proud to be their mom. Bryan is the best thing that ever happened to them. They are not burdened by him at all, in fact I am proud they are learning that everyone is deserving of respect and love.
They were told I choose to keep him and why even at their young age they understood, and they tell Bryan, mommy knew we were ok and we were going to be her kids, but she choose to have you just the way you are. We are special to her in one way and you are special to all of us in another. And they are only 7 & 6 years old.
Tuesday, October 17, 2006
Family Update
Kevin is doing so wonderful in school. He has received a 100% on every spelling test and got 14.5 out of 15 right on his very first math test.
I am so proud of him. The teacher tells me he is gifted and would not be surprised if he entered the gifted program next year. He is like a little sponge that one. He talks about everything including current news events.
He is also a prayer. He is still praying for Katrina Victims and Victims of the tsunami. He knows the second half of grace they say in school by heart. I have never seen a 6 year old pray and understand his faith the way he does. In fact he yelled at me for going to church at 7:00 am on Sunday with out the family. I have been doing this because we are busy. But he knows we never miss mass and is very anxious to get back.
Danny is doing wonderfully too. For a child that has ADD is is basically supposed to be in 2nd grade and is in 3rd (his birthday is the end of November), he is very smart as well the teacher said. He just can not sit still. However, I do not believe in medication and will not do it as long as he is doing well academically. He is playing the Flute in band and doing a very good job at it I might add, he is also earning a lot more badges with Cub Scouts and wants to be an egale scout one day. He too is doing quite well with religion and loves to go to mass on Sunday now that he can receive his communion. But he would rather watch Danny phantom then pray unlike Kevin Tyler who would rather pray.
Bryan is doing really well. He has the croup right now but has not been sick a day since the spring so I can not complain really. For a kid with Down syndrome he is doing really well with the illnesses. He is started to try to take steps, and is saying words and signing a lot of different signs now. His therapists love him and in school they tell me he has scored on the typical level cognitively now since school started which is amazing. His speech is behind a typical 20 month old, and he still has a few little OT issues, and of course his gross motor delays are the biggest problem right now. But other than that he is doing well. His teachers are very impressed by him.
I am right where I was last year. A busy little bee, PTA President again this year, den mother and I still have my Lions Club. I miss the big time salaryfrom being a Vice President but I love my little job at the High School in the cafeteria. It is fun the kids and the ladies are great and I am being taught to fill in for the big cook when she is out. Oh and of course the book Gifts. It will be out very soon and I am so excited. I thank God I met Kathryn and she was able to pull this off. I know it is going to be a smash hit!
Kevin is doing well with work and is still on the school board and is doing his charity work for the Knights of Columbus. His good friend is the head honcho for the next two years so Kevin was roped into chairing the Santa Party for the kids this year.
Oh yeah Kevin spoke at Church last month to raise money for Special Olympics for the Knights of Columbus. He was a smash hit. They raised more money when he spoke then any other speaker a whopping $678.00. I am so proud of that. A few weeks later Bryan and Kevin were invited to his friends installation dinner so all the members could meet my darling little boy.
I will update the family post next week.
I am so proud of him. The teacher tells me he is gifted and would not be surprised if he entered the gifted program next year. He is like a little sponge that one. He talks about everything including current news events.
He is also a prayer. He is still praying for Katrina Victims and Victims of the tsunami. He knows the second half of grace they say in school by heart. I have never seen a 6 year old pray and understand his faith the way he does. In fact he yelled at me for going to church at 7:00 am on Sunday with out the family. I have been doing this because we are busy. But he knows we never miss mass and is very anxious to get back.
Danny is doing wonderfully too. For a child that has ADD is is basically supposed to be in 2nd grade and is in 3rd (his birthday is the end of November), he is very smart as well the teacher said. He just can not sit still. However, I do not believe in medication and will not do it as long as he is doing well academically. He is playing the Flute in band and doing a very good job at it I might add, he is also earning a lot more badges with Cub Scouts and wants to be an egale scout one day. He too is doing quite well with religion and loves to go to mass on Sunday now that he can receive his communion. But he would rather watch Danny phantom then pray unlike Kevin Tyler who would rather pray.
Bryan is doing really well. He has the croup right now but has not been sick a day since the spring so I can not complain really. For a kid with Down syndrome he is doing really well with the illnesses. He is started to try to take steps, and is saying words and signing a lot of different signs now. His therapists love him and in school they tell me he has scored on the typical level cognitively now since school started which is amazing. His speech is behind a typical 20 month old, and he still has a few little OT issues, and of course his gross motor delays are the biggest problem right now. But other than that he is doing well. His teachers are very impressed by him.
I am right where I was last year. A busy little bee, PTA President again this year, den mother and I still have my Lions Club. I miss the big time salaryfrom being a Vice President but I love my little job at the High School in the cafeteria. It is fun the kids and the ladies are great and I am being taught to fill in for the big cook when she is out. Oh and of course the book Gifts. It will be out very soon and I am so excited. I thank God I met Kathryn and she was able to pull this off. I know it is going to be a smash hit!
Kevin is doing well with work and is still on the school board and is doing his charity work for the Knights of Columbus. His good friend is the head honcho for the next two years so Kevin was roped into chairing the Santa Party for the kids this year.
Oh yeah Kevin spoke at Church last month to raise money for Special Olympics for the Knights of Columbus. He was a smash hit. They raised more money when he spoke then any other speaker a whopping $678.00. I am so proud of that. A few weeks later Bryan and Kevin were invited to his friends installation dinner so all the members could meet my darling little boy.
I will update the family post next week.
Monday, October 16, 2006
To Keep or Not To Keep
Lately there has been a lot of commenting on other blogs on whether or not it is right to go forward with a pregnancy when you find out there is something wrong. My personal position is obvious. I feel that you need to deal with what God gave you regardless.
That being said I do think that women have the right under the law to make their own decision. And I do feel that in the case of a lethal diagnosis that I could understand someone making that choice, even if I would not go that route personally.
What I do not understand is termination for Down syndrome. A child with special needs is hard work no doubt but the rewards are great. There is no easy way out of life regardless. I think most women terminate with the idea that it is the easy way to not have to deal with a special needs child. But is that really the easy way out? You need to grapple with the fact you killed your own child. I think some realize it would have been easier to keep the baby and at the very least put it up for adoption rather than deal with the murder of their own baby.
I know this is a very touchy subject, that is why I am putting here on my blog but one has to wonder really what goes through someone's head. Termination can lead to later miscarriages and some women do not even go on to have children after.
I pray for these women everyday that they are able to forgive themselves so God can forgive them but it is increasingly hard to keep that up when they hurt our children with their words, and in their hateful actions.
I really feel this is something that needs to be explored. Why do some women like myself feel so strongly that life is sacred and other feels it is expendable like changing your mind at a fast food restaurant. Hmmm you know that burger has a flaw throw it out and give me a new one.
That being said I do think that women have the right under the law to make their own decision. And I do feel that in the case of a lethal diagnosis that I could understand someone making that choice, even if I would not go that route personally.
What I do not understand is termination for Down syndrome. A child with special needs is hard work no doubt but the rewards are great. There is no easy way out of life regardless. I think most women terminate with the idea that it is the easy way to not have to deal with a special needs child. But is that really the easy way out? You need to grapple with the fact you killed your own child. I think some realize it would have been easier to keep the baby and at the very least put it up for adoption rather than deal with the murder of their own baby.
I know this is a very touchy subject, that is why I am putting here on my blog but one has to wonder really what goes through someone's head. Termination can lead to later miscarriages and some women do not even go on to have children after.
I pray for these women everyday that they are able to forgive themselves so God can forgive them but it is increasingly hard to keep that up when they hurt our children with their words, and in their hateful actions.
I really feel this is something that needs to be explored. Why do some women like myself feel so strongly that life is sacred and other feels it is expendable like changing your mind at a fast food restaurant. Hmmm you know that burger has a flaw throw it out and give me a new one.
We Call Holland Home
I guess for those of you who are friends and family and are not familiar with the poem Welcome To Holland. I need to explain the title first. When I found out Bryan had Down syndrome I was given a poem called Welcome To Holland. This is the poem.
Welcome To Holland
byEmily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved.
Matthew and ... 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.
This poem was instrumental in bringing me to accept what I was told. My my baby boy will have Down syndrome. What this ment to us as a family I did not know, I just knew all of us Kevin, myself, Danny and Kevin Tyler were about to embark on a special trip to Holland apparently.
Well Bryan is almost 2 now and it was two years on October 7th I knew my son would have Down syndrome at birth. And I can honestly say that I love being in Holland!
So now in our house We Call Holland Home! Welcome to the Roach Family Blog, We Call Holland Home Blog Spot!!! I will be updating the blog weekly so please check for exciting family news on all three boys and us.
Welcome To Holland
byEmily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved.
Matthew and ... 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.
This poem was instrumental in bringing me to accept what I was told. My my baby boy will have Down syndrome. What this ment to us as a family I did not know, I just knew all of us Kevin, myself, Danny and Kevin Tyler were about to embark on a special trip to Holland apparently.
Well Bryan is almost 2 now and it was two years on October 7th I knew my son would have Down syndrome at birth. And I can honestly say that I love being in Holland!
So now in our house We Call Holland Home! Welcome to the Roach Family Blog, We Call Holland Home Blog Spot!!! I will be updating the blog weekly so please check for exciting family news on all three boys and us.
Subscribe to:
Posts (Atom)
