Here is an eloquent response to R Shmuley Boteach's article about Special Needs I posted last week.
I think my opinion is somewhere in the middle. While I do not think having a child with special needs is suffering, I do think that it is harder than a typical child and those who claim that their child is just like everyone else in every realm are fooling themselves.
Yes our kids are bright, they have feelings, they can lead to full lives but they have to work really HARD at it and so do the parents.
On the topic of attachment parenting, this TIME cover photo of a woman breastfeeding her three year old is making news. Some feel it is just sensationalist, others think the article is too critical of attachment parenting but it definitely had the effect of stirring up some controversy.
Have you read anything interesting this week?
Showing posts with label down syndrome. Show all posts
Showing posts with label down syndrome. Show all posts
Thursday, May 10, 2012
Monday, April 30, 2012
Special Needs Week
This week somehow has become a week all about Special Needs.
Yesterday my husband and I attended the Sprout Film Festival. It is a weekend devoted to special needs with all kinds of movies and documentaries on the topic. We went to see a group of films on the topic "Who we are". The movies dealt with individuals with developmental disabilities trying to find themselves as they get older, whether it is through relationships, their affinity for sports or otherwise.
It was striking to see how adults who are high functioning sense and understand that they are being treated differently because of their disability, and that it truly hurts them. Definitely a lot of food for thought there.
My husband and I both loved a documentary about two boys, one with autism, one with Down Syndrome who love basketball and both scored for their teams in unbelievable moments that were caught on camera. Seems very apropos for Y who is obsessed with sports.
We have also arranged for a tutor to start working with Y on Jewish subjects. He started two weeks ago and it has been going very well. They learn aleph-beis and the weekly parsha. Y loves it and feels very proud that he is learning with a Rebbe.
Lastly, we are going to the yearly Yachad Shabbaton for Families of children with special needs. I love going because I always learn something new in the sessions and get to connect with others. I am hoping A. will gain something too, maybe by meeting some other siblings. I was actually asked if I want to be on a panel, answering questions but I said no. Public speaking is not really my thing...
On the same note, here is a link to an interesting article by Rabbi Shmuley Boteach about disability. It's called "Mental Disability is Not a Blessing". I agree with the basic premise, but still need to think about it some more. Thoughts welcome.
Yesterday my husband and I attended the Sprout Film Festival. It is a weekend devoted to special needs with all kinds of movies and documentaries on the topic. We went to see a group of films on the topic "Who we are". The movies dealt with individuals with developmental disabilities trying to find themselves as they get older, whether it is through relationships, their affinity for sports or otherwise.
It was striking to see how adults who are high functioning sense and understand that they are being treated differently because of their disability, and that it truly hurts them. Definitely a lot of food for thought there.
My husband and I both loved a documentary about two boys, one with autism, one with Down Syndrome who love basketball and both scored for their teams in unbelievable moments that were caught on camera. Seems very apropos for Y who is obsessed with sports.
We have also arranged for a tutor to start working with Y on Jewish subjects. He started two weeks ago and it has been going very well. They learn aleph-beis and the weekly parsha. Y loves it and feels very proud that he is learning with a Rebbe.
Lastly, we are going to the yearly Yachad Shabbaton for Families of children with special needs. I love going because I always learn something new in the sessions and get to connect with others. I am hoping A. will gain something too, maybe by meeting some other siblings. I was actually asked if I want to be on a panel, answering questions but I said no. Public speaking is not really my thing...
On the same note, here is a link to an interesting article by Rabbi Shmuley Boteach about disability. It's called "Mental Disability is Not a Blessing". I agree with the basic premise, but still need to think about it some more. Thoughts welcome.
Wednesday, March 21, 2012
World Down Syndrome Day
I have spent most of this week submerged in toys and cleaning supplies as I tackled the kid's bedroom and toys for Pessach. I am happy to announce that I finished the room and am taking the rest of the week off from cleaning.
I emerged long enough to visit Gigi's Playhouse on Sunday, the new Down Syndrome Awareness Center that recently opened in New York City. The Center is not in our neighborhood but easily reachable by subway. We went to an Open House to meet other children with Down Syndrome and their families.A good time was had by all except for A, who kept insisting that everything was "boring."
It was an apropos week to visit the Playhouse because today is World Down Syndrome Day. In honor of the day, the UN hosted a conference all about Down Syndrome with the title "Building Our Future". There was a live webcast and I was able to watch some of it this morning while cleaning and holding Baby AY who has been cranky all day. My husband said we should have gone to see it live but life is busy..I also missed out on hearing Ina May Gaskin, often called the mother of modern midwifery, speak this week. She was in NY on Monday and gave a lecture at the Museum of Motherhood. You can only be in so many places at once.
Anyway, I was only able to see part of the program, but I was able to see a few incredible articulate young men and women with Down Syndrome speak about their accomplishment, their goals and their dreams. It was very inspiring but also daunting because I know these children did not achieve all they did without tremendous input and work on their parent's part. This is where the Mommy-guilt of "Am I doing enough?" comes in.
You can still see the program on the UN's webcast site. It is pretty long, but I encourage you to take some time to hear some of the men and women speak. You can skip around for the relevant parts.
Up next this week- our wedding anniversary tomorrow to be celebrated by going out to dinner as well as another family simcha on the weekend. Never a dull moment around here.
I emerged long enough to visit Gigi's Playhouse on Sunday, the new Down Syndrome Awareness Center that recently opened in New York City. The Center is not in our neighborhood but easily reachable by subway. We went to an Open House to meet other children with Down Syndrome and their families.A good time was had by all except for A, who kept insisting that everything was "boring."
It was an apropos week to visit the Playhouse because today is World Down Syndrome Day. In honor of the day, the UN hosted a conference all about Down Syndrome with the title "Building Our Future". There was a live webcast and I was able to watch some of it this morning while cleaning and holding Baby AY who has been cranky all day. My husband said we should have gone to see it live but life is busy..I also missed out on hearing Ina May Gaskin, often called the mother of modern midwifery, speak this week. She was in NY on Monday and gave a lecture at the Museum of Motherhood. You can only be in so many places at once.
Anyway, I was only able to see part of the program, but I was able to see a few incredible articulate young men and women with Down Syndrome speak about their accomplishment, their goals and their dreams. It was very inspiring but also daunting because I know these children did not achieve all they did without tremendous input and work on their parent's part. This is where the Mommy-guilt of "Am I doing enough?" comes in.
You can still see the program on the UN's webcast site. It is pretty long, but I encourage you to take some time to hear some of the men and women speak. You can skip around for the relevant parts.
Up next this week- our wedding anniversary tomorrow to be celebrated by going out to dinner as well as another family simcha on the weekend. Never a dull moment around here.
Saturday, March 17, 2012
The Links Edition
Some interesting reads and food for thought
Parents sue for wrongful birth of child with Down Syndrome- this is a pretty disturbing article about the ethical implications of suing for wrongful birth. Basically, it's saying that you wish your child was never born. One family apparently did this recently and were awarded 3 million dollars. To which my not very eloquent comment is "Ugh!!:
By the way, World Down Syndrome Day is on March 21 (get it- 3 copies of the 21st chromosomes), and they are having a conference at the UN on issues pertaining to DS. You can find out more info here.
The Housewife- Mama Birth grapples with what it means to be a housewife and "only" a mom and the love- hate relationship she has with this occupation.
Lastly, just because, a picture of AY trying to stuff a toy into his mouth
Parents sue for wrongful birth of child with Down Syndrome- this is a pretty disturbing article about the ethical implications of suing for wrongful birth. Basically, it's saying that you wish your child was never born. One family apparently did this recently and were awarded 3 million dollars. To which my not very eloquent comment is "Ugh!!:
By the way, World Down Syndrome Day is on March 21 (get it- 3 copies of the 21st chromosomes), and they are having a conference at the UN on issues pertaining to DS. You can find out more info here.
The Housewife- Mama Birth grapples with what it means to be a housewife and "only" a mom and the love- hate relationship she has with this occupation.
Lastly, just because, a picture of AY trying to stuff a toy into his mouth
Sunday, February 12, 2012
Gigi's Playhouse
Today I got a random email from an old provider of ours. I was not even going to read it but I am glad I did because it contained exciting news. There is a Down Syndrome Awareness Center opening up in Morningside Heights, right near us.
Gigi's Playhouse was originally started as a play space for children with Down Syndrome by a parent of a little girl named Gigi. It has since evolved into a national organization with playhouses in different cities all over the US. They offer programming and educational activities for children of all ages and their parents.
The goal is to raise awareness about Down Syndrome, provide support to the parents and give the children a great place to learn, play and gain confidence. You can find out more information here.
The NY location is opening at the end of February and I am definitely going to check it out. Just another example of how networking is so important when trying to navigate the world of Special Needs.
Gigi's Playhouse was originally started as a play space for children with Down Syndrome by a parent of a little girl named Gigi. It has since evolved into a national organization with playhouses in different cities all over the US. They offer programming and educational activities for children of all ages and their parents.
The goal is to raise awareness about Down Syndrome, provide support to the parents and give the children a great place to learn, play and gain confidence. You can find out more information here.
The NY location is opening at the end of February and I am definitely going to check it out. Just another example of how networking is so important when trying to navigate the world of Special Needs.
Monday, November 21, 2011
Other people's Blogs
I know I am constantly linking to articles and other blogs but this one is a must-read. Ellen at Love That Max has a guest post by Jane Schulz, a pioneer in inclusion and an advocate for children with special needs. Her son Billy, who has Down Syndrome, was born in 1956. They brought him home and because there were no services available, became his early intervention team, teachers, etc. Eventually she went back to school for a doctorate in education. She chronicles her experiences in a book called Grown Man Now (which I now want to buy!) and describes just a little bit in this post. Fascinating to see what she achieved and how far special education has come. Go read it and then check out her blog, titled Grown Man Now like her book. Just the fact that this woman is in her 70s (if not 80s) and she has a blog makes her cool in my eyes.
I admit that I spend way too much time reading other people's blogs but I do think some of it is worthwhile. I get lots of useful information that way about special needs, parenting and birth. I get to read perspectives and ideas I may not have been exposed to otherwise. Most importantly, I get to read about others going through similar things as I am. A few people commented to me how they loved the post I linked to about taking your kids to the park. They said they had not laughed so hard in a while and also "those are your kids!" I said: "I know!" That is exactly the point, to feel that you are not alone, that everyone's kids are a little nutty sometimes, everyone has good days and bad days and that it's good to laugh and not take ourselves too seriously.
In that vein, I'll share with you a funny quote from little M. that proves that I probably do spend too much time on the computer. We were at the library today and M sat himself down at a computer terminal and proceeded to bang around on the keys. I told him it was time to go and he said, "Wait, I'm checking my email. Just two more minutes!"
I admit that I spend way too much time reading other people's blogs but I do think some of it is worthwhile. I get lots of useful information that way about special needs, parenting and birth. I get to read perspectives and ideas I may not have been exposed to otherwise. Most importantly, I get to read about others going through similar things as I am. A few people commented to me how they loved the post I linked to about taking your kids to the park. They said they had not laughed so hard in a while and also "those are your kids!" I said: "I know!" That is exactly the point, to feel that you are not alone, that everyone's kids are a little nutty sometimes, everyone has good days and bad days and that it's good to laugh and not take ourselves too seriously.
In that vein, I'll share with you a funny quote from little M. that proves that I probably do spend too much time on the computer. We were at the library today and M sat himself down at a computer terminal and proceeded to bang around on the keys. I told him it was time to go and he said, "Wait, I'm checking my email. Just two more minutes!"
Saturday, November 5, 2011
Shifting Perspectives
I have to admit I was not quite sure what I wanted to blog about tonight- our nice but exhausting shabbos, my dilemma as to whether I am still up to hosting guests next week, the kids seeming inability to sleep past 6am these days...but then I checked out some other blogs I follow and found this wonderful video, thanks to rickismom at Beneath the Wings
It is about a photographer who dedicated a whole photographic exhibition to images of individuals with Down Syndrome. The images are amazing and it is a wonderful concept as well, to present people with special needs as individuals with their own interests and character.
I highly recommend watching this, would love to hear your thoughts!
It is about a photographer who dedicated a whole photographic exhibition to images of individuals with Down Syndrome. The images are amazing and it is a wonderful concept as well, to present people with special needs as individuals with their own interests and character.
I highly recommend watching this, would love to hear your thoughts!
Saturday, August 27, 2011
Down Syndrome Blog Posts
Shavua Tov from Jerusalem. We had a lovely shabbos in Beit Shemesh, our last one in Israel for this summer. Right now my thoughts are with the NY metro area and the storm they are awaiting...I am kind of happy that we are not there and hoping that things will not be as bad as expected.
Just wanted to share two interesting Down Syndrome-related blog posts. I could relate to a lot of what these women write, although I don't agree with everything. Still some food for thought though.So without further ado:
- Top 5 Things that I Like About Having a Kid with Down Syndrome by Dooze
- Sheva at My Shtub on accepting your children, the good traits as well as the weaknesses
Just wanted to share two interesting Down Syndrome-related blog posts. I could relate to a lot of what these women write, although I don't agree with everything. Still some food for thought though.So without further ado:
- Top 5 Things that I Like About Having a Kid with Down Syndrome by Dooze
- Sheva at My Shtub on accepting your children, the good traits as well as the weaknesses
Wednesday, July 20, 2011
Style Down Syndrome?
I have observed a trend in the media recently. A celebrity, politician or journalist will write or say something offensive to a specific demographic causing people to complain and then the person will promptly issue a hasty apology and retraction, saying they did not mean it or did not realize this could be hurtful.
Consider this- an article in recent GQ magazine laments the apparent lack of style in Boston. Apparently, one can generalize and condemn an entire city for being, horror of horrors, un-hip. Be that as it may, the way Boston was described, made people take notice of this article. The author writes: "Boston suffers from a kind of Style Down Syndrome , where a little extra ends up ruining everything.”
While the magazine may have thought they were really clever for coming up with this new term, others were not amused. Brian Skotko, a physician at Boston Children's Article and brother to a young woman with Down Syndrome wrote a great blog post entitled Mock my Pants, Not my Sister. In the post, he takes the journalist to task and writes: "Let me explain what “Style Down Syndrome” really is. “Style Down Syndrome” is smiling when everyone else prefers to frown. It’s spending three summers, in sheer determination, learning to ride a bike because you want the freedom to be like everyone else. It’s singing tunes from Grease at the top of your lungs with your friends. It’s celebrating a third-place victory at a swim meet with as much gusto as the gold medalist."
Skotko also asks that instead of perpetuating stereotypes, GQ use this as a teachable moment and instead show what Down Syndrome is really like by highlighting the My Great Story Campaign on the National Down Syndrome Society's webpage. This is a compilation of the successes of individuals with Down Syndrome and definitely worth a look
This blog post went viral, along with other similar complaints, and what do you know, a few days later GQ issued this apology:
"We received your letter and absolutely understand that we have caused many of readers and their loved ones pain. Hurting anyone’s feelings or being disrespectful or cruel was certainly never our intent, but your letter helped us understand how poorly chosen our words were. What we initially posted was insensitive and ill-informed, and we’ve removed the offensive language from the website. We deeply regret our error in judgment. There is no excuse. We are both very sorry."
Sincerely,
Sean Fennessey, editor, GQ.com
John B. Thompson, writer, GQ.com"
While it's all nice and good for them to apologize, I do have to wonder how sincere this statement is. The fact that these words were written to begin with and approved by an editor (meaning it was not just a quick slip of the tongue), shows that many people still have pre-conceived notions and stereotypes about individuals with intellectual disabilities. Are a few complaints and blog posts really going to make a difference and make these people now see a person with Down Syndrome in a different light? On the other hand, how can one be silent and NOT say something?
I am still mulling this over- what do you think? Do complaints and calls for change make a real difference? It seems that often we are preaching to the choir, to the ones who are already convinced, while the ones who need to learn are for the most part unaffected.
Consider this- an article in recent GQ magazine laments the apparent lack of style in Boston. Apparently, one can generalize and condemn an entire city for being, horror of horrors, un-hip. Be that as it may, the way Boston was described, made people take notice of this article. The author writes: "Boston suffers from a kind of Style Down Syndrome , where a little extra ends up ruining everything.”
While the magazine may have thought they were really clever for coming up with this new term, others were not amused. Brian Skotko, a physician at Boston Children's Article and brother to a young woman with Down Syndrome wrote a great blog post entitled Mock my Pants, Not my Sister. In the post, he takes the journalist to task and writes: "Let me explain what “Style Down Syndrome” really is. “Style Down Syndrome” is smiling when everyone else prefers to frown. It’s spending three summers, in sheer determination, learning to ride a bike because you want the freedom to be like everyone else. It’s singing tunes from Grease at the top of your lungs with your friends. It’s celebrating a third-place victory at a swim meet with as much gusto as the gold medalist."
Skotko also asks that instead of perpetuating stereotypes, GQ use this as a teachable moment and instead show what Down Syndrome is really like by highlighting the My Great Story Campaign on the National Down Syndrome Society's webpage. This is a compilation of the successes of individuals with Down Syndrome and definitely worth a look
This blog post went viral, along with other similar complaints, and what do you know, a few days later GQ issued this apology:
"We received your letter and absolutely understand that we have caused many of readers and their loved ones pain. Hurting anyone’s feelings or being disrespectful or cruel was certainly never our intent, but your letter helped us understand how poorly chosen our words were. What we initially posted was insensitive and ill-informed, and we’ve removed the offensive language from the website. We deeply regret our error in judgment. There is no excuse. We are both very sorry."
Sincerely,
Sean Fennessey, editor, GQ.com
John B. Thompson, writer, GQ.com"
While it's all nice and good for them to apologize, I do have to wonder how sincere this statement is. The fact that these words were written to begin with and approved by an editor (meaning it was not just a quick slip of the tongue), shows that many people still have pre-conceived notions and stereotypes about individuals with intellectual disabilities. Are a few complaints and blog posts really going to make a difference and make these people now see a person with Down Syndrome in a different light? On the other hand, how can one be silent and NOT say something?
I am still mulling this over- what do you think? Do complaints and calls for change make a real difference? It seems that often we are preaching to the choir, to the ones who are already convinced, while the ones who need to learn are for the most part unaffected.
Wednesday, June 29, 2011
Birthday Party
Yesterday was Y's birthday and last day of school. We celebrated by having a small party in school. It was very sweet, even though Y kept asking when we were going home. To him, Mommy and Abba at school means he gets to leave early :)
My trio having their birthday cupcakes. A insisted on missing camp to come to the party. Sisterly love
Y and his beloved Abba
And check out M in his fancy hat and glasses. I loved the look and he almost stole the show looking so cute!
Birthdays are times of joy but also always a time of reflection for me. Of how far Y has come and how far we still have to go...one step at a time. My life was profoundly changed the day Y was born, although I guess any parent would say that about the birth of their child. We have learned a lot on our journey and I am sure there is more to learn. What I can say is that Y is such a happy and lovable child. All the teachers and therapists at school have remarked on this and we are greatful that everyone can sense and appreciate his "chen".
I have more to say but I will instead leave it to Sheva, who has a great post on her blog about her daughter's first birthday. Thanks to my mother-in-law for sending this my way.
I will keep you posted on the iPad developments. I am hoping to buy it next week and will be taking recommendations for educational and communication apps and hopefully giving some myself.
Birthdays are times of joy but also always a time of reflection for me. Of how far Y has come and how far we still have to go...one step at a time. My life was profoundly changed the day Y was born, although I guess any parent would say that about the birth of their child. We have learned a lot on our journey and I am sure there is more to learn. What I can say is that Y is such a happy and lovable child. All the teachers and therapists at school have remarked on this and we are greatful that everyone can sense and appreciate his "chen".
I have more to say but I will instead leave it to Sheva, who has a great post on her blog about her daughter's first birthday. Thanks to my mother-in-law for sending this my way.
I will keep you posted on the iPad developments. I am hoping to buy it next week and will be taking recommendations for educational and communication apps and hopefully giving some myself.
Wednesday, March 2, 2011
Spread the Word to End the Word
What word you may wonder. That lovely R-word people like to use. Retard/Retarded, we have all heard it used and maybe even have used it ourself.
Spread the Word has made itself a mission to raise awareness about the hurtfulness in using this word and is collecting pledges from people who promise to stop using it. So far they have collected 173 119 online pledges.
Ellen at Love that Max, one of my favorite special needs bloggers, posted about a little experiment on Twitter that she tried. She signed up to be notified anytime someone sends a Tweet containing the word "retard". What she found was disturbing. Over the course of a day she received close to 1500 notifications. That is a lot of inapropriate language. To each person, she replied courteously, telling them that the word "retarded" is deragatory to people with disabilities and asking them to reconsider using that word. You should definitelty go read her post, but most of the time she was ignored or told to mind her own business, or that it's not important because it is "just a word". She does write of some people who took her seriously and told her her perspective makes a difference.
It made me think about how I think of this word. It is not one I have in my vocabulary, nor one we use in our home except for my son's IEP which actually has the classification MR on it- mentally retarded. But that is actually the correct use of the word. My son, who is amazing and cute and wonderful is mentally retarded. You can call him developmentally delayed but that is not going to change the reality.
However, losing your wallet does not make you retarded, the cashier at the supermarket is not retarded either, or your teachers/ bus drivers or other people who may annoy you. It is demeaning to people with disabilities for this clinical term to be used inapropriately. To quote Rabbi Liebling in the fabulous documentary "Praying With Lior". When he speaks about his son with Down Syndrome he says: "He's retarded, not stupid. It's not the same thing!"
But do I feel the need to go on a crusade, to correct people and make them feel uncomfortable? I am not sure. There have been times people have used the term around me and I did not say anything or make a fuss. Other times I did speak up or at least wished I had said something. I guess it all depends on the situation and who the person is.
But since this is my blog and I can say what I want, I am asking you my dear readers to consider if you have ever used that word and to try and remove it from your vocabulary. Spread the Word to End the Word...one person at a time.
What do you think?
As an aside- I will be away for the weekend so I will not be posting till Sunday night or Monday. Wishing you a wonderful shabbos.
Spread the Word has made itself a mission to raise awareness about the hurtfulness in using this word and is collecting pledges from people who promise to stop using it. So far they have collected 173 119 online pledges.
Ellen at Love that Max, one of my favorite special needs bloggers, posted about a little experiment on Twitter that she tried. She signed up to be notified anytime someone sends a Tweet containing the word "retard". What she found was disturbing. Over the course of a day she received close to 1500 notifications. That is a lot of inapropriate language. To each person, she replied courteously, telling them that the word "retarded" is deragatory to people with disabilities and asking them to reconsider using that word. You should definitelty go read her post, but most of the time she was ignored or told to mind her own business, or that it's not important because it is "just a word". She does write of some people who took her seriously and told her her perspective makes a difference.
It made me think about how I think of this word. It is not one I have in my vocabulary, nor one we use in our home except for my son's IEP which actually has the classification MR on it- mentally retarded. But that is actually the correct use of the word. My son, who is amazing and cute and wonderful is mentally retarded. You can call him developmentally delayed but that is not going to change the reality.
However, losing your wallet does not make you retarded, the cashier at the supermarket is not retarded either, or your teachers/ bus drivers or other people who may annoy you. It is demeaning to people with disabilities for this clinical term to be used inapropriately. To quote Rabbi Liebling in the fabulous documentary "Praying With Lior". When he speaks about his son with Down Syndrome he says: "He's retarded, not stupid. It's not the same thing!"
But do I feel the need to go on a crusade, to correct people and make them feel uncomfortable? I am not sure. There have been times people have used the term around me and I did not say anything or make a fuss. Other times I did speak up or at least wished I had said something. I guess it all depends on the situation and who the person is.
But since this is my blog and I can say what I want, I am asking you my dear readers to consider if you have ever used that word and to try and remove it from your vocabulary. Spread the Word to End the Word...one person at a time.
What do you think?
As an aside- I will be away for the weekend so I will not be posting till Sunday night or Monday. Wishing you a wonderful shabbos.
Sunday, September 12, 2010
A child is born
This afternoon, a family member told me that a few weeks ago, a friend of hers had had a new granddaughter, who was born with Down Syndrome. My initial gut reaction was "Oh, no!" which was then followed by-"what a terrible thing to think about the birth of a beautiful child." If I, a mother of a child with Down Syndrome think this way, how would others respond?
As I thought about it some more, I realized that my initial gut reaction was not really about the baby; it was about all the drama and emotions surrounding the birth of a child with special needs.
I still remember when Y was born, how people did not really know what to say to us. Even though we were trying to process things, we still felt strongly that a "Mazel Tov" is in order, rather than any pitying comments. What sticks out in my mind all these years later, is a phonecall from a friend of my husband's who I had never met in person. She called from Australia to wish us well and said "I am so sorry that you are going through a difficult time right now." She was acknowledging the confusion and conflicting emotions we were feeling, without in any way making Y's birth into a negative event.
I think that really lies at the root of my conflicting reactions. I know this baby girl is a blessing. But having been there myself I also know of all the turmoil the birth of a child with special needs causes- the disappointment, anger, mourning, frustration, fear of unknown. My initial dismay was about these feelings, feelings the new parents will have to work through. Along with these feelings also comes love and a connection they feel to their baby, which will only grow.
Unfortunately there is no shortcut. Only through truly acknowledging one's feelings and processing, can one get to a place of love and acceptance. If I could speak to these new parents, I would say, "Right now, things are painful and confusing. You love your little girl so much but you can't help feeling scared and disappointed. Know that this child will bring you unbelievable joy and nachas in ways you cannot even imagine. And most importantly- Mazel tov!"
As I thought about it some more, I realized that my initial gut reaction was not really about the baby; it was about all the drama and emotions surrounding the birth of a child with special needs.
I still remember when Y was born, how people did not really know what to say to us. Even though we were trying to process things, we still felt strongly that a "Mazel Tov" is in order, rather than any pitying comments. What sticks out in my mind all these years later, is a phonecall from a friend of my husband's who I had never met in person. She called from Australia to wish us well and said "I am so sorry that you are going through a difficult time right now." She was acknowledging the confusion and conflicting emotions we were feeling, without in any way making Y's birth into a negative event.
I think that really lies at the root of my conflicting reactions. I know this baby girl is a blessing. But having been there myself I also know of all the turmoil the birth of a child with special needs causes- the disappointment, anger, mourning, frustration, fear of unknown. My initial dismay was about these feelings, feelings the new parents will have to work through. Along with these feelings also comes love and a connection they feel to their baby, which will only grow.
Unfortunately there is no shortcut. Only through truly acknowledging one's feelings and processing, can one get to a place of love and acceptance. If I could speak to these new parents, I would say, "Right now, things are painful and confusing. You love your little girl so much but you can't help feeling scared and disappointed. Know that this child will bring you unbelievable joy and nachas in ways you cannot even imagine. And most importantly- Mazel tov!"
Saturday, August 28, 2010
Visible vs. Invisible disabilities
The funny thing about Down Syndrome is that it is pretty self-evident. You can see it on my little guy's face. My husband and I sometimes talk about how Y's features are not so pronounced but the truth is that most people can tell right away. While this summer, people recognizing Y on the street earned us lots of brachos, that may not always be the case.
There are both advantages and disadvantages to having a visible disability. The advantage is that people may be more tolerant and patient with the child, because they see he is not "typical". There are the rare times when Y acts up in public and I have a hard time controlling him. It helps to know that people are not judging him or me, or at least I hope they aren't.
The disadvantage is that people may be too tolerant of Y's shenanigans or have very low expectations of him. Even though Y is developmentally delayed, we still expect him to learn how to behave properly. We were recently in a store and Y decided to sit down in the middle of a busy aisle. I immediately told him he had to get up, while the store clerk kept saying, "Don't worry. Let him stay there." While, it was nice of her to say that, Y knows better and this is not behavior I want to encourage. So I thanked her, but still insisted that he stand up right away.
I also do not want people to see my son and automatically assume that he can't do something because of his disablity- can't talk/play/behave/understand or otherwise. Because the truth of the matter is that very often he can and will. People often express surprise at how well Y can navigate the playground and/or children's museum by himself and we definitely like to encourage that independence.
Parents of children with autism or other so-called invisible disabilities often complain about the opposite problem. Their children often look typical and whenthey act up in public, people are not always understanding and will judge the parents for not controling their child better. They sometimes have their children wear cute shirts that say "I have autism, what's your excuse?" or something similar, so that others will be more tolerant.
I guess I want it both ways- for people not to make assumptions right away when they see Y, but also to get some leeway in the instances when he does need some extra help, patience or understanding.
In an ideal world I wouldn't care what others thought and they in turn would not judge people by their visible disabilities or other external appearances. All I really can do, though, is to try my best to help my little man learn how to act like a "mentch" and not worry so much about what others think when things don't always go according to plan.
There are both advantages and disadvantages to having a visible disability. The advantage is that people may be more tolerant and patient with the child, because they see he is not "typical". There are the rare times when Y acts up in public and I have a hard time controlling him. It helps to know that people are not judging him or me, or at least I hope they aren't.
The disadvantage is that people may be too tolerant of Y's shenanigans or have very low expectations of him. Even though Y is developmentally delayed, we still expect him to learn how to behave properly. We were recently in a store and Y decided to sit down in the middle of a busy aisle. I immediately told him he had to get up, while the store clerk kept saying, "Don't worry. Let him stay there." While, it was nice of her to say that, Y knows better and this is not behavior I want to encourage. So I thanked her, but still insisted that he stand up right away.
I also do not want people to see my son and automatically assume that he can't do something because of his disablity- can't talk/play/behave/understand or otherwise. Because the truth of the matter is that very often he can and will. People often express surprise at how well Y can navigate the playground and/or children's museum by himself and we definitely like to encourage that independence.
Parents of children with autism or other so-called invisible disabilities often complain about the opposite problem. Their children often look typical and whenthey act up in public, people are not always understanding and will judge the parents for not controling their child better. They sometimes have their children wear cute shirts that say "I have autism, what's your excuse?" or something similar, so that others will be more tolerant.
I guess I want it both ways- for people not to make assumptions right away when they see Y, but also to get some leeway in the instances when he does need some extra help, patience or understanding.
In an ideal world I wouldn't care what others thought and they in turn would not judge people by their visible disabilities or other external appearances. All I really can do, though, is to try my best to help my little man learn how to act like a "mentch" and not worry so much about what others think when things don't always go according to plan.
Monday, July 26, 2010
My little tzaddik
I recently came across a blog post by someone, claiming that people in Israel are so much more tolerant and open to people with disabilities. I was a bit skeptical at first but just judging by the day we have had today, that person may be on to something.
By now everybody reading this knows that our darling little Y has Down Syndrome. It is a disability that is pretty apparent, as you can see it on his cute little face. Everywhere we went today, we were met with comments about our son. Not the comments that make you cringe, good comments and compliments :)
We took several cabs today, trying to get around Jerusalem and keep the kids entertained. Our first cab driver was a real sweetheart who told me not to worry about M crying in his car. When I tried to quiet him, he said, "Let him scream here, I don't mind." As we were leaving the cab and Y tried to stay in the car as he usually tends to do, the cab driver asked him his name and told us that he was a neshama- a pure soul.
Our second cab driver had a fancy car and was concerned about his leather seats. When Y got in the car, he started yelling at him to get his shoes off the seats. When he turned around and saw that Y has Down Syndrome, his tone completely changed. He apologized and called him a tzaddik, loosely translated as a "righteous person." Later on when walking down the street, a stranger spotted Y and started showering him with blessings. He told us that G'd should bless Y and called him a tzaddik several times.
That was three times in the span of about three hours. I know it sounds all romantic and idealistic. I am sure we will not be showered with blessings everywhere we go but it is reflective of an attitude that seems to exist here. The attitude that children with disabilities are "special" not just because they have extraordinary needs but because they truly are special and unique.
Y was actually born in Jerusalem, 5 years ago, in one of the larger hospitals. As soon as word got out, there was a network that sprung into action. We were getting visits and phonecalls and supports from so many people; people we barely knew or did not know at all. It was a bit overwhelming at first but it was also comforting to see so many people who had been there personally. There was such a strong emphasis on the fact that this was a difficult time for us but that there was so much good to come. There was an attitude of joy, love and acceptance at a very early stage. Looking back, I don't know how this scenario would have played out in the US. G'd puts us all where we need to be at different times in our lives
So while the services such as OT, PT and Speech may be better in the US, Israel definitely seems to have a leg up on attitude.
Maybe it is just the prevalence of Down Syndrome in Jerusalem. Orthodox women have large families and generally do not do genetic testing. In our neighborhood alone at the time, there were about 20 children of different ages with an extra chromosome. Maybe it all comes back to the general feeling here that we are all family, we are all connected somehow and need to be there for each other.
Whatever it is, I am enjoying the TLC. And definitely agree that Y is a little tzaddik.
By now everybody reading this knows that our darling little Y has Down Syndrome. It is a disability that is pretty apparent, as you can see it on his cute little face. Everywhere we went today, we were met with comments about our son. Not the comments that make you cringe, good comments and compliments :)
We took several cabs today, trying to get around Jerusalem and keep the kids entertained. Our first cab driver was a real sweetheart who told me not to worry about M crying in his car. When I tried to quiet him, he said, "Let him scream here, I don't mind." As we were leaving the cab and Y tried to stay in the car as he usually tends to do, the cab driver asked him his name and told us that he was a neshama- a pure soul.
Our second cab driver had a fancy car and was concerned about his leather seats. When Y got in the car, he started yelling at him to get his shoes off the seats. When he turned around and saw that Y has Down Syndrome, his tone completely changed. He apologized and called him a tzaddik, loosely translated as a "righteous person." Later on when walking down the street, a stranger spotted Y and started showering him with blessings. He told us that G'd should bless Y and called him a tzaddik several times.
That was three times in the span of about three hours. I know it sounds all romantic and idealistic. I am sure we will not be showered with blessings everywhere we go but it is reflective of an attitude that seems to exist here. The attitude that children with disabilities are "special" not just because they have extraordinary needs but because they truly are special and unique.
Y was actually born in Jerusalem, 5 years ago, in one of the larger hospitals. As soon as word got out, there was a network that sprung into action. We were getting visits and phonecalls and supports from so many people; people we barely knew or did not know at all. It was a bit overwhelming at first but it was also comforting to see so many people who had been there personally. There was such a strong emphasis on the fact that this was a difficult time for us but that there was so much good to come. There was an attitude of joy, love and acceptance at a very early stage. Looking back, I don't know how this scenario would have played out in the US. G'd puts us all where we need to be at different times in our lives
So while the services such as OT, PT and Speech may be better in the US, Israel definitely seems to have a leg up on attitude.
Maybe it is just the prevalence of Down Syndrome in Jerusalem. Orthodox women have large families and generally do not do genetic testing. In our neighborhood alone at the time, there were about 20 children of different ages with an extra chromosome. Maybe it all comes back to the general feeling here that we are all family, we are all connected somehow and need to be there for each other.
Whatever it is, I am enjoying the TLC. And definitely agree that Y is a little tzaddik.
 |
| Our little Tzaddik with his sister, who is not too bad herself :) |
Sunday, June 6, 2010
Still processing
We came home late this afternoon after a very long car ride due to construction, getting lost and crazy rain. I am glad to be back in our own space and the kids are too. We had a wonderful weekend at the Hudson Valley Resort with Yachad- the National Jewish Council on Disabilities. We met many wonderful families and professionals. The kids had a blast in daycamp while my husband and I attended many (too many? It did get a bit intense) great sessions. Some were more informational, others more personal where we had a chance to express our feelings and challenges.
In one of the sessions I had a chance to share something I had been struggling with for a while now and it was incredibly validating to have others understand that challenge and speak of their own similar experiences. There weren't necessarily any solutions, but some food for thought.
I met some wonderful young adults with Down Syndrome and it was encouraging to see how well they are doing and how accomplished they are.
I was hoping my daughter A. would meet some other siblings of children with special needs and notice the diversity of disabilities but the beauty of kids is that they often do not see differences. What she saw was lots of children with their families, spending shabbos together.
All in all, there were a lot of different experiences involved, and like the title of my blog says, I am still trying to process it all, to summarize the things I have learned, thoughts I had and emotions I felt. I can definitely say, though, that these experiences will stay with with me for a long time.
In one of the sessions I had a chance to share something I had been struggling with for a while now and it was incredibly validating to have others understand that challenge and speak of their own similar experiences. There weren't necessarily any solutions, but some food for thought.
I met some wonderful young adults with Down Syndrome and it was encouraging to see how well they are doing and how accomplished they are.
I was hoping my daughter A. would meet some other siblings of children with special needs and notice the diversity of disabilities but the beauty of kids is that they often do not see differences. What she saw was lots of children with their families, spending shabbos together.
All in all, there were a lot of different experiences involved, and like the title of my blog says, I am still trying to process it all, to summarize the things I have learned, thoughts I had and emotions I felt. I can definitely say, though, that these experiences will stay with with me for a long time.
Sunday, May 9, 2010
Counting my blessings
Y is thankfully recovering well from his procedures. Yesterday he was up to his usual shenanigans and we went to the park in the afternoon.
When we were at the park, we met another family whose son has down syndrome. He was a cute little 2.5 year old boy who was playing on the slide. His father approached me and started asking me questions abt Y. He told me that Y looks great and was very impressed with the way Y was carrying himself, the way he was running around the park independently. I took another look at my little boy and there he was, chasing the birds yet again, having a great time, like all the other kids at the park.
An hour later we ran into a couple we know from the neighborhood. We were just chatting while our kids were digging around in the sandbox, when the husband said to me, "You know, Y looks really great." The whole thing was kind of ironic to me because 48 hours ago, he had been lying in bed moaning after his surgery, but right now in the sandbox, he really did look good. Happy and healthy.
I will admit that I am usually a "glass-half-empty" kind of person. I have a tendency to notice the things that are missing, rather than focusing on what I do have. It is a flaw I am aware of and trying to change, little by little. I want to appreciate my children and my husband and not think about the mess they made or the fact that he is late again (so cliche but so true...). It is hard and requires conscious effort. But speaking to these strangers and acquaintances in the park made me realize that maybe it is not so hard after all. If they can see the beauty and growth in my child, then I definitely should. I should stop thinking about the fact that Y does not know how to hop, ride a bike or talk in full sentences and focus on all the amazing things he can do: chase the pidgeons, swing on the big kids swing, navigate the park more of less on his own. He can communicate his needs and loves everything connected to Judaism. I could go on and on but you get the picture.
So here is to becoming more aware of the blessings in our lives and appreciating the little moments, one at a time.
When we were at the park, we met another family whose son has down syndrome. He was a cute little 2.5 year old boy who was playing on the slide. His father approached me and started asking me questions abt Y. He told me that Y looks great and was very impressed with the way Y was carrying himself, the way he was running around the park independently. I took another look at my little boy and there he was, chasing the birds yet again, having a great time, like all the other kids at the park.
An hour later we ran into a couple we know from the neighborhood. We were just chatting while our kids were digging around in the sandbox, when the husband said to me, "You know, Y looks really great." The whole thing was kind of ironic to me because 48 hours ago, he had been lying in bed moaning after his surgery, but right now in the sandbox, he really did look good. Happy and healthy.
I will admit that I am usually a "glass-half-empty" kind of person. I have a tendency to notice the things that are missing, rather than focusing on what I do have. It is a flaw I am aware of and trying to change, little by little. I want to appreciate my children and my husband and not think about the mess they made or the fact that he is late again (so cliche but so true...). It is hard and requires conscious effort. But speaking to these strangers and acquaintances in the park made me realize that maybe it is not so hard after all. If they can see the beauty and growth in my child, then I definitely should. I should stop thinking about the fact that Y does not know how to hop, ride a bike or talk in full sentences and focus on all the amazing things he can do: chase the pidgeons, swing on the big kids swing, navigate the park more of less on his own. He can communicate his needs and loves everything connected to Judaism. I could go on and on but you get the picture.
So here is to becoming more aware of the blessings in our lives and appreciating the little moments, one at a time.
Sunday, March 7, 2010
The Specials
Last night when I was checking out some down syndrome blogs, I came across this website for a reality series called The Specials. It's a series about 5 young adults in their early 20s with developmental delays living in their own home in England with a support staff supervising them. Basically an assisted living facility.
It is kind of cool to see them living their day to day life- doing laundry, going to school or going out to a nightclub like everyone else. What I did not like so much was that the emphasis of the series was mostly on boy-girl issues: who likes who, who wants to date who. On the one hand it is nice to validate that people with down syndrome have feelings just like anybody else and can have crushes, feel lonely, etc. On the other hand, is that the only issue these men and women are dealing with? There must be a bit more to their life, don't you think?
I'll let you see for yourself. Here is a clip of one of the episodes. It's only about 10 minutes long. I am wondering if they will continue this series for another season.
It is kind of cool to see them living their day to day life- doing laundry, going to school or going out to a nightclub like everyone else. What I did not like so much was that the emphasis of the series was mostly on boy-girl issues: who likes who, who wants to date who. On the one hand it is nice to validate that people with down syndrome have feelings just like anybody else and can have crushes, feel lonely, etc. On the other hand, is that the only issue these men and women are dealing with? There must be a bit more to their life, don't you think?
I'll let you see for yourself. Here is a clip of one of the episodes. It's only about 10 minutes long. I am wondering if they will continue this series for another season.
The Specials - Episode 1 from KADA Films on Vimeo.
Sunday, January 17, 2010
Patience
Every parent needs a lot of patience but a parent of a child with special needs needs an extra dose of patience. She needs patience for the board of ed, doctors and other well meaning people who complicate her life. Most importantly, though, she needs more patience for her child, the one who lacks impulse control and at 4.5 still acts much younger. She would be me. The child would be Y. And G'd must have a good sense of humor because I am sorely lacking in the patience department.
Yesterday was a challenging day. I am a bit slow but after almost 5 years of being a parent I am starting to learn that when it is too quiet in the house it means there is big trouble brewing. While I was drinking my coffee yesterday morning and enjoying the quiet, I soon realized that I had no clue where Y was.
Bad news. So I checked the usual mischief places- the fridge, the bathroom, his room but he was not there. I checked his next favorite place, my bedroom, and found him thoroughly enjoying himself. He was redecorating the room- with my mascara. It was everywhere- on all the walls, on the sheets, on the floor, on the door. You cannot even imagine. So I did what any good civilized mother would do- I yelled. Then I felt guilty, because it' s not his fault. He doesn't understand. Even though I desperately just want him to understand why this is not okay, he just doesn't get it.
Fast forward to bedtime, 10 hours later when Y wandered off while I was reading the kids a book. Again, too quiet. Again a huge mess- this time half a bottle of grape juice all over my kitchen floor. Like I said, I'm slow. I forgot to lock the fridge.
I blew my cool and yelled. And Y was crying because he was just trying to pour grape juice into a cup and make havdalah like his Abba. I felt guilty and resentful all at once. Guilty because I know I am the adult and I need to stay calm. Resentful because my reality is such that I need to lock my fridge, hide my pens, my toiletries, my laptop AND my wallet and cannot sit for five minutes without wondering what my kid is up to.
So the lessons we learn from this is:
1) Quiet means trouble
2) I need a lot of work on my patience. Suggestions welcome.
Edited to add- although I sometimes sound exasperated on this blog, I really do love my children. Really :)
Yesterday was a challenging day. I am a bit slow but after almost 5 years of being a parent I am starting to learn that when it is too quiet in the house it means there is big trouble brewing. While I was drinking my coffee yesterday morning and enjoying the quiet, I soon realized that I had no clue where Y was.
Bad news. So I checked the usual mischief places- the fridge, the bathroom, his room but he was not there. I checked his next favorite place, my bedroom, and found him thoroughly enjoying himself. He was redecorating the room- with my mascara. It was everywhere- on all the walls, on the sheets, on the floor, on the door. You cannot even imagine. So I did what any good civilized mother would do- I yelled. Then I felt guilty, because it' s not his fault. He doesn't understand. Even though I desperately just want him to understand why this is not okay, he just doesn't get it.
Fast forward to bedtime, 10 hours later when Y wandered off while I was reading the kids a book. Again, too quiet. Again a huge mess- this time half a bottle of grape juice all over my kitchen floor. Like I said, I'm slow. I forgot to lock the fridge.
I blew my cool and yelled. And Y was crying because he was just trying to pour grape juice into a cup and make havdalah like his Abba. I felt guilty and resentful all at once. Guilty because I know I am the adult and I need to stay calm. Resentful because my reality is such that I need to lock my fridge, hide my pens, my toiletries, my laptop AND my wallet and cannot sit for five minutes without wondering what my kid is up to.
So the lessons we learn from this is:
1) Quiet means trouble
2) I need a lot of work on my patience. Suggestions welcome.
Edited to add- although I sometimes sound exasperated on this blog, I really do love my children. Really :)
Monday, November 9, 2009
How I decided to become a doula
Why I decided to become a doula is actually a long story but I'll give you the semi-short version- when I was pregnant with my oldest, i took prenatal yoga and became fascinated w. the idea of natural, intervention free birth. The philosophy appealed to me. It just made sense to me that my body was meant to give birth so it obviously knows what it's doing. I read all I could abt it and was actually looking forward to the whole experience of birth.
Then came the news that the baby was breech. and a few weeks later still breech. Then at 37 weeks still breech. I tried all sorts of things- segulas, chiropractors, an external version which was unsuccessful and very traumatic but nothing doing. at 38.5 weeks I went into labor and arrived at the hospital only to be told the baby is sitll breech and I am having a c-section. I was devastated. After a pretty uneventful surgery and a quick peek at the baby I was sent to recovery. Where I was gently informed by my husband that our little baby boy bundle of joy has down syndrome. Did I mention I was devastated? What followed was shock, disbelief, mourning and yet amazing love for my little guy.
When I was pregnant with my daughter a short while later, i was determined to do it differently this time. With the help of my husband, doctor and two doulas (and of course G'd) I had a beautiful beautiful VBAC (vaginal birth after caesearen) and more importantly a wonderful, healthy daughter. This experience really showed me what birth really can be like.
Almost a yr later, when I decided I was ready to be more than just (very loaded word) a stay at home mom, i thought about what I really want to do and almost immediately came up with birth- I want to be around healthy, beautiful births and support women at this special time.
It has been a long, slow journey towards certification and experience but bh I am now certified and business is picking up. I love what I do and invite you to contact me if you are interested in hearing more about my work.
Then came the news that the baby was breech. and a few weeks later still breech. Then at 37 weeks still breech. I tried all sorts of things- segulas, chiropractors, an external version which was unsuccessful and very traumatic but nothing doing. at 38.5 weeks I went into labor and arrived at the hospital only to be told the baby is sitll breech and I am having a c-section. I was devastated. After a pretty uneventful surgery and a quick peek at the baby I was sent to recovery. Where I was gently informed by my husband that our little baby boy bundle of joy has down syndrome. Did I mention I was devastated? What followed was shock, disbelief, mourning and yet amazing love for my little guy.
When I was pregnant with my daughter a short while later, i was determined to do it differently this time. With the help of my husband, doctor and two doulas (and of course G'd) I had a beautiful beautiful VBAC (vaginal birth after caesearen) and more importantly a wonderful, healthy daughter. This experience really showed me what birth really can be like.
Almost a yr later, when I decided I was ready to be more than just (very loaded word) a stay at home mom, i thought about what I really want to do and almost immediately came up with birth- I want to be around healthy, beautiful births and support women at this special time.
It has been a long, slow journey towards certification and experience but bh I am now certified and business is picking up. I love what I do and invite you to contact me if you are interested in hearing more about my work.
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