Remember the online documentary about 5 roommates (4 with Down syndrome and 1 with Williams syndrome) in England called The Specials?
Their website was recently relaunched where Seasons 1 and 2 are available to watch and they have a trailer to their new film they are releasing called "If I Could Go Back..."
It's a film geared towards new parents and made in corroboration with parents who have children with Down syndrome from around the globe, to include UK, USA, France, Nepal, Australia, Sweden, Spain. The parents are reflecting on their experiences and passing on some insight to new parents. If I could go back, what would I tell myself? I wrote myself a letter about that!
You can check out their Facebook page and YouTube channel, too.
Showing posts with label acceptance. Show all posts
Showing posts with label acceptance. Show all posts
Sunday, October 29, 2017
Saturday, October 28, 2017
Missing Out On Beautiful
Missing Out On Beautiful is a collection of seven short essays about raising a child with Down syndrome written by Amy Julia Becker (author, including the book The Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny).
Amy Julia is offering this collection of essays for free. The book downloads directly to your desktop for reading.
The last essay is actually an interview with her daughter, Penny, who is 11 years old and has Down syndrome.
Amy Julia is offering this collection of essays for free. The book downloads directly to your desktop for reading.
The last essay is actually an interview with her daughter, Penny, who is 11 years old and has Down syndrome.
Monday, October 23, 2017
Parenting and Perceptions (Repost)
I originally posted this nine years ago. I occasionally still feel this way; so this is a good reminder to myself.
~~~~~~~~~~~~~~~~~~
As a new mom one thing I struggled with (and sometimes still do) is Kayla's behavior in public and the perception other people might have.
It's not necessarily what I would consider really bad behavior either; she doesn't throw fits/temper tantrums, beg for toys or candy, cries or whines...but she doesn't listen. She takes off down random aisles going where she wants to go. She doesn't have a care in the world or even cares if we're following her. She doesn't care if she's not staying with us. How frustrating is it to call your child back "stop!" "turn around!" "come back here!" and they completely ignore you? Or they think it's a game and see how fast they can get around the corner before you catch up to them.
Kayla was never one to just stand in one place while I browse the shelves for whatever I'm looking for. It would make me a little sad to see other kids just walking nicely and calmly holding their parents' hands, or just standing by their side; my kid would have to be in the cart or else she would take off. (Over the last year she has become better at walking with us, but still has her moments of taking off.)
Same thing with restaurants. It stresses me out to go out to eat with Kayla. We rarely eat out as it is, but now I try to avoid it if possible. She won't stay seated. Up, down, up, down. Fidgety, trying to climb under the table, over the table. I bring things to keep her occupied but it just doesn't work...everything else is so much more entertaining. I hate saying over and over "Kayla sit down!" "Just sit still!" blah blah blah...so we just don't eat out.
I know all parents want and expect their kids to behave - especially in public. No one wants to be the parent who has the kid acting up and everyone else is discreetly trying not to stare at you.
But kids will be kids. They have short attention spans, they're curious, it's hard for them to do grown-up things, shopping can be boring for them, they have moods, they're not always well-behaved.
So while yes, I do expect my child to listen when I'm calling her, or telling her to stop, sometimes I think I expect too much from her. I think I've put expectations on her to be good all the time and when she doesn't I get frustrated. And no child can be "good" all the time. It's not reasonable to expect perfect behavior (although it would be nice!)
I think I've put some unreasonable expectations on her because she has Down syndrome. Because if she's running away from me and not listening when I'm telling her to stop and I end up chasing her down...then people might see that and think "oh she's got her hands full with her daughter who has Down syndrome." Because if we're in a restaurant and she's not sitting still (and I mean standing up on the chair, sitting down, standing up, getting down) someone might look at us and think "thank goodness I don't have a child with Down syndrome; look what the parents have to deal with."
I expect her to have this oh-so-perfect behavior because what if our family is the only interaction some other family has with Down syndrome and think negatively because of it? Whereas if she was "good" all the time then someone might observe and think "oh having a child with Down syndrome isn't so bad."
Of course I have no idea what anyone else is thinking. These are only my thoughts on what they might be thinking. But I do worry about what other people's perceptions are. I worry if they're going to judge a whole segment of society - people with Down syndrome - based on what they see of my daughter.
I know this isn't fair to Kayla at all. It's not fair for me to expect her to be "on" all the time just so she can be a "positive face for the Down syndrome community." She's not the poster child for Down syndrome. And if I don't want people to perceive her "negative" behavior as an attribute of Down syndrome then I need to stop doing it myself..because sometimes I do wonder "would she be acting like this if she didn't have Down syndrome? Would she be this active and impulsive?" And if so would I care as much? Would I worry so much about what other people thought? Would I stress so much when we go out in public? I need to see her personality for what it is - a highly active and curious child (which totally clashes with my more mellow style!)
I do know that her "behavior personality" isn't specific to Down syndrome. I know a lot of typical kids act the same way and some of it has to do with age too. But when you have a disability it feels like everyone is judging you/your child on that instead of it just being "their age."
I don't even know what exactly it is I'm trying to say here! Just that sometimes parenting really is hard; trying to figure it all out - how to raise these little people that depend on you for everything. Trying to do the right thing by them...sometimes failing, sometimes succeeding...but learning through it all.
~~~~~~~~~~~~~~~~~~
As a new mom one thing I struggled with (and sometimes still do) is Kayla's behavior in public and the perception other people might have.
It's not necessarily what I would consider really bad behavior either; she doesn't throw fits/temper tantrums, beg for toys or candy, cries or whines...but she doesn't listen. She takes off down random aisles going where she wants to go. She doesn't have a care in the world or even cares if we're following her. She doesn't care if she's not staying with us. How frustrating is it to call your child back "stop!" "turn around!" "come back here!" and they completely ignore you? Or they think it's a game and see how fast they can get around the corner before you catch up to them.
Kayla was never one to just stand in one place while I browse the shelves for whatever I'm looking for. It would make me a little sad to see other kids just walking nicely and calmly holding their parents' hands, or just standing by their side; my kid would have to be in the cart or else she would take off. (Over the last year she has become better at walking with us, but still has her moments of taking off.)
Same thing with restaurants. It stresses me out to go out to eat with Kayla. We rarely eat out as it is, but now I try to avoid it if possible. She won't stay seated. Up, down, up, down. Fidgety, trying to climb under the table, over the table. I bring things to keep her occupied but it just doesn't work...everything else is so much more entertaining. I hate saying over and over "Kayla sit down!" "Just sit still!" blah blah blah...so we just don't eat out.
I know all parents want and expect their kids to behave - especially in public. No one wants to be the parent who has the kid acting up and everyone else is discreetly trying not to stare at you.
But kids will be kids. They have short attention spans, they're curious, it's hard for them to do grown-up things, shopping can be boring for them, they have moods, they're not always well-behaved.
So while yes, I do expect my child to listen when I'm calling her, or telling her to stop, sometimes I think I expect too much from her. I think I've put expectations on her to be good all the time and when she doesn't I get frustrated. And no child can be "good" all the time. It's not reasonable to expect perfect behavior (although it would be nice!)
I think I've put some unreasonable expectations on her because she has Down syndrome. Because if she's running away from me and not listening when I'm telling her to stop and I end up chasing her down...then people might see that and think "oh she's got her hands full with her daughter who has Down syndrome." Because if we're in a restaurant and she's not sitting still (and I mean standing up on the chair, sitting down, standing up, getting down) someone might look at us and think "thank goodness I don't have a child with Down syndrome; look what the parents have to deal with."
I expect her to have this oh-so-perfect behavior because what if our family is the only interaction some other family has with Down syndrome and think negatively because of it? Whereas if she was "good" all the time then someone might observe and think "oh having a child with Down syndrome isn't so bad."
Of course I have no idea what anyone else is thinking. These are only my thoughts on what they might be thinking. But I do worry about what other people's perceptions are. I worry if they're going to judge a whole segment of society - people with Down syndrome - based on what they see of my daughter.
I know this isn't fair to Kayla at all. It's not fair for me to expect her to be "on" all the time just so she can be a "positive face for the Down syndrome community." She's not the poster child for Down syndrome. And if I don't want people to perceive her "negative" behavior as an attribute of Down syndrome then I need to stop doing it myself..because sometimes I do wonder "would she be acting like this if she didn't have Down syndrome? Would she be this active and impulsive?" And if so would I care as much? Would I worry so much about what other people thought? Would I stress so much when we go out in public? I need to see her personality for what it is - a highly active and curious child (which totally clashes with my more mellow style!)
I do know that her "behavior personality" isn't specific to Down syndrome. I know a lot of typical kids act the same way and some of it has to do with age too. But when you have a disability it feels like everyone is judging you/your child on that instead of it just being "their age."
I don't even know what exactly it is I'm trying to say here! Just that sometimes parenting really is hard; trying to figure it all out - how to raise these little people that depend on you for everything. Trying to do the right thing by them...sometimes failing, sometimes succeeding...but learning through it all.
Saturday, October 21, 2017
Intelligent Lives - A Documentary
Intelligent Lives is a new documentary film by the award-winning producer/director Dan Habib set to be released in 2018. The film follows the lives of 3 individuals with disabilities whose lives would have much different outcomes if they had been born even as recently as 1970 - most likely by being institutionalized.
"Academy-Award winning actor Chris Cooper, the narrator of Intelligent Lives, unpacks the United States’ sordid history of intelligence testing, which led to people with intellectual disabilities carrying a clinical label of “moron,” “idiot,” or “feeble minded.” The three central characters of Intelligent Lives — Micah Fialka-Feldman, Naomie Monplaisir, and Naieer Shaheed — would have been labeled this way had they been born in the first half of the 20th century. Their parents would have been counseled to send their children to live in an institution alongside hundreds or thousands of other people with disabilities. They might have been among the approximately 65,000 Americans forcibly sterilized in order to “improve the stock” of humanity during the U.S. eugenics movement. As recently as 1975, Micah, Naieer, and Naomie would not have had legal access to a public education."
See a preview of the film here and see a list of screenings here.
You can also follow along for updates on the FB page.
"Academy-Award winning actor Chris Cooper, the narrator of Intelligent Lives, unpacks the United States’ sordid history of intelligence testing, which led to people with intellectual disabilities carrying a clinical label of “moron,” “idiot,” or “feeble minded.” The three central characters of Intelligent Lives — Micah Fialka-Feldman, Naomie Monplaisir, and Naieer Shaheed — would have been labeled this way had they been born in the first half of the 20th century. Their parents would have been counseled to send their children to live in an institution alongside hundreds or thousands of other people with disabilities. They might have been among the approximately 65,000 Americans forcibly sterilized in order to “improve the stock” of humanity during the U.S. eugenics movement. As recently as 1975, Micah, Naieer, and Naomie would not have had legal access to a public education."
See a preview of the film here and see a list of screenings here.
You can also follow along for updates on the FB page.
Wednesday, October 18, 2017
Woodbine House Books and DVDs
I think Woodbine House is the largest publisher of books and DVDs for disability issues. They have a large collection of products organized by disability ranging from children's books to books for parents and professionals and self-advocates.
A sampling of topics that you can find books on: ADHD, Celicac Disease, Down Syndrome, Cerebral Palsy, Literacy & Reading, Cleft Lip and Palate, Deafness ... and many, many more.
In honor of Down Syndrome Awareness Month (through the end of October) 40 books and DVDs are 30% off. No code needed; discount applies automatically.
I have several of the books and I think my next purchase will be Boyfriends and Girlfriends. Kayla says she's not interested/doesn't want a boyfriend "NOOOO!" is her emphatic answer, but I'm sure that day will come! No harm in going over this and talking about relationships and expectations with her now.
A sampling of topics that you can find books on: ADHD, Celicac Disease, Down Syndrome, Cerebral Palsy, Literacy & Reading, Cleft Lip and Palate, Deafness ... and many, many more.
In honor of Down Syndrome Awareness Month (through the end of October) 40 books and DVDs are 30% off. No code needed; discount applies automatically.
I have several of the books and I think my next purchase will be Boyfriends and Girlfriends. Kayla says she's not interested/doesn't want a boyfriend "NOOOO!" is her emphatic answer, but I'm sure that day will come! No harm in going over this and talking about relationships and expectations with her now.
Monday, October 16, 2017
That Taboo Topic
Two years ago, during 31 for 21, I blogged about the importance of sex education for people with disabilities - and it's still important for this topic to be discussed.
As I said in that post - sex education isn't just about sex (safe sex/abstinence) but it's also about healthy relationships and what is/isn't appropriate. It's about learning about boundaries and personal space and owning your body and knowing you can say no.
With the current news focused on the latest man in position of power sexually harassing/assaulting women, it's important that people with disabilities are involved in this conversation.
It's so important because 80% of women with an intellectual disability will be sexually abused. (The article I linked to for this statistic in my previous post is no longer available).
Aside from that glaring statistic - people with disabilities have sexual feelings too and have been treated as children well into their adult lives and not been given the chance to explore their sexuality.
This article explains Why Sex Education for Disabled People is so Important. And it isn't just coming from the 'experts', but from people with disabilities who were interviewed for this article.
"When it comes to disability and sexuality, a large part of the issue lies in the fact that disabled people are so infrequently included in the decisions made about their bodies, their education, and their care. So what do people with disabilities wish they had learned in sex ed? This is what students and adults with disabilities said about their experience in sexual health courses and what they wish they had learned."
As I said in that post - sex education isn't just about sex (safe sex/abstinence) but it's also about healthy relationships and what is/isn't appropriate. It's about learning about boundaries and personal space and owning your body and knowing you can say no.
With the current news focused on the latest man in position of power sexually harassing/assaulting women, it's important that people with disabilities are involved in this conversation.
It's so important because 80% of women with an intellectual disability will be sexually abused. (The article I linked to for this statistic in my previous post is no longer available).
Aside from that glaring statistic - people with disabilities have sexual feelings too and have been treated as children well into their adult lives and not been given the chance to explore their sexuality.
This article explains Why Sex Education for Disabled People is so Important. And it isn't just coming from the 'experts', but from people with disabilities who were interviewed for this article.
"When it comes to disability and sexuality, a large part of the issue lies in the fact that disabled people are so infrequently included in the decisions made about their bodies, their education, and their care. So what do people with disabilities wish they had learned in sex ed? This is what students and adults with disabilities said about their experience in sexual health courses and what they wish they had learned."
Friday, October 13, 2017
Internships for People with Disabilities
Some welcome news coming out of Albuquerque, NM about Presbyterian Rust Medical Center. The hospital has partnered with Adelante Development Center, Rio Rancho Public Schools, Vocational Rehab, NM Dept of Health, and U of NM Center for Development and Disability to offer internships for people with developmental disabilities who have graduated high school and are between the ages of 18-22.
Interning is a great way to gain job skills, but can be hard to find for people with developmental disabilities. So far this program is producing positive results with many interns from the previous year landing paid jobs.
It's encouraging to read about opportunities like this and hopefully more hospitals will partner with school districts for providing internships.
It's definitely a step in the right direction showing people with disabilities are capable if given an opportunity.
This internship program is part of a wider network of intern opportunities across the country with Project SEARCH. Their high school transition program "...provides real-life work experience to help youth with significant disabilities make successful transitions from school to adult life."
You can see what programs are available in your state (and a few countries as well!)
Interning is a great way to gain job skills, but can be hard to find for people with developmental disabilities. So far this program is producing positive results with many interns from the previous year landing paid jobs.
It's encouraging to read about opportunities like this and hopefully more hospitals will partner with school districts for providing internships.
It's definitely a step in the right direction showing people with disabilities are capable if given an opportunity.
This internship program is part of a wider network of intern opportunities across the country with Project SEARCH. Their high school transition program "...provides real-life work experience to help youth with significant disabilities make successful transitions from school to adult life."
You can see what programs are available in your state (and a few countries as well!)
Thursday, October 12, 2017
Likable or "Leg"ible
Because of her enunciation Kayla's speech sometimes takes some deciphering to figure out what she is saying. Thankfully she is usually able to describe it with other words, or point to an object, or act it out so we finally get that 'a ha!' moment.
We had just such a moment the other day when I picked her up from school.
I told her she had some homework/studying to do of her vocabulary words and said, "You know your list? Like 'visible'?"
Kayla, "Yeah I know that."
Me, "This week your words all end in either 'able' or 'ible' so we've got to study those."
K, "Lovable!"
M, "Yep, lovable, that's one of your words."
K, "And (insert word that I thought sounded like 'likable').
M, "Likable?"
K, "No, (repeats word that still sounds an awful lot like 'likable')"
M, "LIKE ABLE? Is that what you're saying?"
K, "No, (repeats word), you know? Like this?" - She lifts up her leg and rubs her hand on the side of it. "LEG" ible."
Me, busting out laughing because I get it now.
M, "OH! Kayla that's 'legible' - what your handwriting is not! It's not pronounced "LEG"ible! It's leh-gible""
K, "Ooooh!"
And then we both got a good laugh out of that.
She knew the word began with LEG and thought it was pronounced that way. It really was funny when she knew I was saying "likable" and she knew that wasn't the word she was saying so she pointed out her leg since she thought it had to do with 'leg'. Ha!
We had just such a moment the other day when I picked her up from school.
I told her she had some homework/studying to do of her vocabulary words and said, "You know your list? Like 'visible'?"
Kayla, "Yeah I know that."
Me, "This week your words all end in either 'able' or 'ible' so we've got to study those."
K, "Lovable!"
M, "Yep, lovable, that's one of your words."
K, "And (insert word that I thought sounded like 'likable').
M, "Likable?"
K, "No, (repeats word that still sounds an awful lot like 'likable')"
M, "LIKE ABLE? Is that what you're saying?"
K, "No, (repeats word), you know? Like this?" - She lifts up her leg and rubs her hand on the side of it. "LEG" ible."
Me, busting out laughing because I get it now.
M, "OH! Kayla that's 'legible' - what your handwriting is not! It's not pronounced "LEG"ible! It's leh-gible""
K, "Ooooh!"
And then we both got a good laugh out of that.
She knew the word began with LEG and thought it was pronounced that way. It really was funny when she knew I was saying "likable" and she knew that wasn't the word she was saying so she pointed out her leg since she thought it had to do with 'leg'. Ha!
Tuesday, October 10, 2017
To My Younger Self
I originally shared this "Letter to Myself" a few years ago, but wanted to repost it for 31 for 21 (Down Syndrome Awareness Month).
Dear Twenty-Something Michelle,
Hello! This is a letter from your future self. It looks like you are settling in nicely to your life. Things seem to be going well, you have a great husband, a job, a new house. Ok ... a not-so-new house considering we are talking about military housing!
You are now at a point in your life when you and Joe want to start a family. Great! Now settle in for the long haul. I don't mean to burst your bubble, but this isn't going to happen as easily, or quickly, as you think it might. Prepare to be on the 'trying to conceive' journey for over a year.
I will say that thankfully you won't need to start fertility treatments, although you will have that initial appointment or two to get the ball rolling.
Since you don't want to find out the gender as you'd like to keep that a surprise, I won't spoil that for you by revealing it in this letter.
I do, however, want to give you a heads up about your newborn baby. Your first born child will be born with a medical condition. Your child will have a slightly different genetic make-up than you or Joe have - something to do with the chromosomes.
I'm not telling you the specific diagnosis because I think it's important for things to happen the way they were supposed to happen. I just want you to know that you will receive some news upon the birth of your child. News you weren't expecting to hear, and news you don't really imagine for your child.
But I also want you to know, and to remember, that even though your child will have this life-long diagnosis (there is no cure), this child is still your child. This child is still the child you and Joe created together. This child is still the child you get to take home and raise. This child is still the child you wished and hoped for. This child is still the very much wanted, and loved, child you will carry for 9 months.
There will be some challenges, but there always is in parenting. It is ok to feel whatever you will feel in the moment. It is ok to be afraid of the future because the unknown can be scary.
As I'm writing this to you now, this child-to-be will be 11 years old in 6 days. This child has already seen much and accomplished much in 11 years.
This child just went to 2 sleep-away camps this summer and had a blast - I'm sure that's something you won't imagine happening when you receive the diagnosis.
Enjoy your newborn. Cherish your newborn. Raising your child, getting to be a parent - that is what matters and what counts. The diagnosis you can deal with one day at a time. The diagnosis will become secondary.
I'm not going to promise that everything will be easy, because it won't.
But I can promise that everything will be all right, because it is.
Dear Twenty-Something Michelle,
Hello! This is a letter from your future self. It looks like you are settling in nicely to your life. Things seem to be going well, you have a great husband, a job, a new house. Ok ... a not-so-new house considering we are talking about military housing!
You are now at a point in your life when you and Joe want to start a family. Great! Now settle in for the long haul. I don't mean to burst your bubble, but this isn't going to happen as easily, or quickly, as you think it might. Prepare to be on the 'trying to conceive' journey for over a year.
I will say that thankfully you won't need to start fertility treatments, although you will have that initial appointment or two to get the ball rolling.
Since you don't want to find out the gender as you'd like to keep that a surprise, I won't spoil that for you by revealing it in this letter.
I do, however, want to give you a heads up about your newborn baby. Your first born child will be born with a medical condition. Your child will have a slightly different genetic make-up than you or Joe have - something to do with the chromosomes.
I'm not telling you the specific diagnosis because I think it's important for things to happen the way they were supposed to happen. I just want you to know that you will receive some news upon the birth of your child. News you weren't expecting to hear, and news you don't really imagine for your child.
But I also want you to know, and to remember, that even though your child will have this life-long diagnosis (there is no cure), this child is still your child. This child is still the child you and Joe created together. This child is still the child you get to take home and raise. This child is still the child you wished and hoped for. This child is still the very much wanted, and loved, child you will carry for 9 months.
There will be some challenges, but there always is in parenting. It is ok to feel whatever you will feel in the moment. It is ok to be afraid of the future because the unknown can be scary.
As I'm writing this to you now, this child-to-be will be 11 years old in 6 days. This child has already seen much and accomplished much in 11 years.
This child just went to 2 sleep-away camps this summer and had a blast - I'm sure that's something you won't imagine happening when you receive the diagnosis.
Enjoy your newborn. Cherish your newborn. Raising your child, getting to be a parent - that is what matters and what counts. The diagnosis you can deal with one day at a time. The diagnosis will become secondary.
I'm not going to promise that everything will be easy, because it won't.
But I can promise that everything will be all right, because it is.
Monday, October 09, 2017
Camp Rise Above
Kayla and Lucas have been fortunate to attend a local camp that serves kids with different health issues for the past few summers.
Camp Rise Above is a fun 2-day camp experience (with plans to expand to be a weekly over-night camp) that offers rock climbing, archery, fishing, canoeing and a trip to the water park among other activities.
Kayla started attending this camp several years ago going to the session for kids with Heart and Kidney issues. This summer they added a camp that was for kids with Down syndrome. I was a bit conflicted as she had been going to the Heart and Kidney one for a couple years and did fine at that session - I didn't feel she 'needed' a camp specifically for kids with Ds, and I liked the idea of her being in the other session because she was with mostly typically-developing peers. I'm all for inclusive opportunities like that - not just for Kayla, but for the other campers to have the experience of being included with someone who has a different chromosome make-up. But one of Kayla's best friends was going to the Ds camp and I could split car pool time with her mom (which helps because the camp is about 45 min away), so she went to the Down syndrome session this year.
Lucas attends the session for kids with asthma. He was diagnosed a few years ago, but thankfully it seems to be pretty well under control.
Kayla didn't attend the camp last year because the date coincided with a sleep-away camp she attended. This past July we were in Greenville (3 hrs away) walking down Main St when this guy walking towards us stopped to ask me, "Is her name Kaylee?" I said, "It's Kayla." as I'm trying to figure out how he must know her; and then he asked Kayla if she remembered him from camp. He was one of her counselors from a couple of years ago and said she was one of his favorite campers (and asked about her last year when she wasn't there). I think the feeling was mutual as you can see from this photo of a couple of years ago. Small world, indeed!
Lucas had a great time with his counselor, and if I remember right, he's going to Spain ...hopefully he'll be at camp next summer so Lucas can hear all about that.
Our local ABC News 4 channel did several news pieces highlighting the different camps and experiences offered to the campers.
This video has several clips of Kayla - the first time she appears she's coming down the water slide in a blue and yellow swim shirt.
Lucas is in a couple quick scenes in this video - sitting on the picnic table while talking about the cookie challenge.
I'm glad they have this opportunity to attend this camp and they look forward to it every summer.
Camp Rise Above is a fun 2-day camp experience (with plans to expand to be a weekly over-night camp) that offers rock climbing, archery, fishing, canoeing and a trip to the water park among other activities.
Kayla started attending this camp several years ago going to the session for kids with Heart and Kidney issues. This summer they added a camp that was for kids with Down syndrome. I was a bit conflicted as she had been going to the Heart and Kidney one for a couple years and did fine at that session - I didn't feel she 'needed' a camp specifically for kids with Ds, and I liked the idea of her being in the other session because she was with mostly typically-developing peers. I'm all for inclusive opportunities like that - not just for Kayla, but for the other campers to have the experience of being included with someone who has a different chromosome make-up. But one of Kayla's best friends was going to the Ds camp and I could split car pool time with her mom (which helps because the camp is about 45 min away), so she went to the Down syndrome session this year.
Lucas attends the session for kids with asthma. He was diagnosed a few years ago, but thankfully it seems to be pretty well under control.
Kayla didn't attend the camp last year because the date coincided with a sleep-away camp she attended. This past July we were in Greenville (3 hrs away) walking down Main St when this guy walking towards us stopped to ask me, "Is her name Kaylee?" I said, "It's Kayla." as I'm trying to figure out how he must know her; and then he asked Kayla if she remembered him from camp. He was one of her counselors from a couple of years ago and said she was one of his favorite campers (and asked about her last year when she wasn't there). I think the feeling was mutual as you can see from this photo of a couple of years ago. Small world, indeed!
Lucas had a great time with his counselor, and if I remember right, he's going to Spain ...hopefully he'll be at camp next summer so Lucas can hear all about that.
Our local ABC News 4 channel did several news pieces highlighting the different camps and experiences offered to the campers.
This video has several clips of Kayla - the first time she appears she's coming down the water slide in a blue and yellow swim shirt.
Lucas is in a couple quick scenes in this video - sitting on the picnic table while talking about the cookie challenge.
I'm glad they have this opportunity to attend this camp and they look forward to it every summer.
Thursday, October 05, 2017
Kayla on the Runway
Kayla recently had the opportunity to be in a fashion show - and this is something she wouldn't ever pass up. Have I mentioned that she loves being on stage?! She does not get that from me. I don't think she knows the feeling of being self-conscious!
Ashley DeRamus has an online fashion boutique - Ashley by Design, and a foundation - Ashley DeRamus Foundation; and she has Down syndrome.
She was a vendor at the Southern Women's Show Charleston and Kayla was one of the models for her runway show.
Here is the video of Kayla on the runway.
Here is a video montage of the event from Ashley's photographer.
Kayla had some fun other than being on the runway - she watched some firefighter's work the runway, too! Kayla and I walked around to see some of the other vendors at the show and circled back around to Ashley by Design. Kayla was told that Ashley was back at the stage getting ready to watch the firefighters do a fashion show and she made her way over to sit by Ashley to watch this show with her.
They actually did model some casual and formal wear before donning their uniforms! This show was part of a charity event - the firemen were raising money for the Ronald McDonald House. I had to get a few pictures of Kayla with them; mostly for my sister who is also a fireman!
Ashley DeRamus has an online fashion boutique - Ashley by Design, and a foundation - Ashley DeRamus Foundation; and she has Down syndrome.
She was a vendor at the Southern Women's Show Charleston and Kayla was one of the models for her runway show.
Here is the video of Kayla on the runway.
Here is a video montage of the event from Ashley's photographer.
Kayla had some fun other than being on the runway - she watched some firefighter's work the runway, too! Kayla and I walked around to see some of the other vendors at the show and circled back around to Ashley by Design. Kayla was told that Ashley was back at the stage getting ready to watch the firefighters do a fashion show and she made her way over to sit by Ashley to watch this show with her.
They actually did model some casual and formal wear before donning their uniforms! This show was part of a charity event - the firemen were raising money for the Ronald McDonald House. I had to get a few pictures of Kayla with them; mostly for my sister who is also a fireman!
Monday, October 02, 2017
Buddy Walk, 2017
Another year, another Buddy Walk in the books! Kayla looks forward to this day and has so much fun celebrating herself, and her friends with Down syndrome.
If you're participating in the 31 for 21 blog challenge, please sign up by clicking on this button!
If you're participating in the 31 for 21 blog challenge, please sign up by clicking on this button!
Sunday, October 01, 2017
11th Annual 31 for 21
Welcome to the 11th Annual 31 for 21 where we blog every day in the month of October for National Down Syndrome Awareness Month.
A couple of guidelines:
- You don't have to blog about Down syndrome every day; just blog every day about whatever you want
- You should mention, at least once, that you are participating in "31 for 21"
- Please link back to this blog so all participating bloggers can sign up below in one place
- You don't have to be a parent, or grandparent, of someone with Down syndrome to participate
- Use #31for21 on social media
- Spread the word
- Have fun!
Please sign the Mr Linky so everyone can follow along to see the other bloggers who are participating:
Here is the button and code to display on your blog so others may find this post and link up!
A couple of guidelines:
- You don't have to blog about Down syndrome every day; just blog every day about whatever you want
- You should mention, at least once, that you are participating in "31 for 21"
- Please link back to this blog so all participating bloggers can sign up below in one place
- You don't have to be a parent, or grandparent, of someone with Down syndrome to participate
- Use #31for21 on social media
- Spread the word
- Have fun!
Please sign the Mr Linky so everyone can follow along to see the other bloggers who are participating:
Here is the button and code to display on your blog so others may find this post and link up!
Thursday, August 10, 2017
Included In Archery
Kayla's tried archery the past few years at a couple of the summer camps she attends and has generally seemed to enjoy it.
Last year she signed up to be on the archery team at school. I knew nothing about what this would entail. I've never been to an archery tournament before - I didn't know anything about the tournaments, how they work, how they are run; and I didn't know how Kayla would handle all of that. Shooting at a tournament is different than shooting for fun at camp.
The coach for her school team is a phenomenal coach. Truly, he's awesome. I don't know if he's ever coached a student with an intellectual disability (and pairing that with ADHD), but he treated Kayla as if she was capable; because she is capable and she can learn. He expected the same of her as he did everyone else, while also recognizing her limitations ("when she slows down and concentrates she's right on target!"). He is patient and encouraging and he just gets each of the archers individually. He learns their strengths and weaknesses. I'm so glad he sees the potential in all archers. And I do mean all. I have seen him give tips to archers on other teams after being at the line and watching them shoot.
Her school is part of the SC Archery in the Schools Program (which falls under NASP). This first year of participating in archery was a great experience - we found it to be inclusive and she was welcomed and accepted. Her lane mates (which were sometimes from other schools) were friendly and encouraging; and Joe and I both had someone come up to us and tell us how great it was to see her participating (one was a coach from another team who is also a Special Education teacher). There were high-fives from teammates, archers from other schools, and from DOR officials.
We also found archery, and SCNASP, to be accommodating to her needs.
When I say they've been accommodating I don't mean in the way of giving her extra arrows, or allowing her to shoot at only 10 meters instead of both 10 and 15 meters. No one felt sorry for her or gave her allowances because she has Down syndrome.
The accommodations were simple things like requesting she be on the left side of the lane so she can draw her arrows in front of her instead of having to reach behind her.
Her coach also went to the target with her to assist on the scorecard. This is an area where her convergence insufficiency comes into play. Here is what the scorecard looks like (like those standardized tests where you bubble in the answer.) Her eyes still have trouble teeming together and following across a line of text - especially if it's small and virtually no space between the lines. When we practiced filling out the scorecard I had my finger on the fourth line down and told her to bubble in a score of "6" - she circled the 6 on the third line. So I knew that keeping score (and you score the card of your lane mate, not your own) would be difficult for her to do.
Other than that she follows all the rules of a tournament just like everyone else and she learned all the rules and routines. She waits on the line for the whistle, once the whistle blows she nocks her arrow and shoots 5 arrows, she hangs her bow up. She stands back and waits for everyone to finish and listens for the 3 whistles to go retrieve the arrows from the target and put them back in her container. She gets her bow off the rack and stands at the line waiting for the whistle to begin the next round. I'm so proud of her for learning all of this to be able to participate in tournaments.
On her first tournament she scored a 36. As I mentioned, I knew nothing about archery or what a score means. To put that score in perspective a perfect score is 300. Ha! When I looked at what the rest of her teammates' scores were the next closest one to her was a 98 and everything else was in the 100s and 200s.
Her next tournament she finished with a score of 76! I couldn't believe how much she improved on her score from her first tournament and I was hoping that by the end of the season she would break into that 100 mark.
This happened at her 3rd tournament. She cracked 100 with a score of exactly 100. I was so, so excited and proud of her for reaching (what I considered) a milestone moment (score).
She had her highest score at Regional in Myrtle Beach with a 113.
The middle school team didn't qualify for State (or National) so it was just 2 more local tournaments to finish the season. Or so I thought.
At the beginning of summer her school team was asked if they would like to participate in the World tournament with another local school. The other school's team qualified for World, but didn't have enough archers to make a team to take to Orlando. So a handful of archers from Kayla's school, including Kayla, participated with this other school at the World tournament.
And Kayla? She knocked this tournament out of the ballpark! I'm talking about her own personal best. She didn't place even top 50 percent...but that's not what matters. What matters is doing her best and trying to improve on her score, and maybe her ranking, each time.
So remember Regional? Her high score of 113? She blew by that score.
She scored a 151!! 151 people! This is from someone who scored 36 on her first tournament and 6 tournaments later she had a 151! To say I was shocked at 151 is an understatement - I was hoping for maybe in the 120s, but not expecting 151. She also wasn't dead last in the ranking categories either. 21 girls finished below her for over all girls, 3 below her for all 7th grade girls, and 5 below her for middle school girls.
She received her first sports letter and pin for archery :)
This was taken last week while she was at Camp Victory Junction - I love this shot of her!
A quick shot while practicing at home:
I'm glad this has been such a positive experience and I'm so glad she had this opportunity to participate; I can't wait for the upcoming season!
Last year she signed up to be on the archery team at school. I knew nothing about what this would entail. I've never been to an archery tournament before - I didn't know anything about the tournaments, how they work, how they are run; and I didn't know how Kayla would handle all of that. Shooting at a tournament is different than shooting for fun at camp.
The coach for her school team is a phenomenal coach. Truly, he's awesome. I don't know if he's ever coached a student with an intellectual disability (and pairing that with ADHD), but he treated Kayla as if she was capable; because she is capable and she can learn. He expected the same of her as he did everyone else, while also recognizing her limitations ("when she slows down and concentrates she's right on target!"). He is patient and encouraging and he just gets each of the archers individually. He learns their strengths and weaknesses. I'm so glad he sees the potential in all archers. And I do mean all. I have seen him give tips to archers on other teams after being at the line and watching them shoot.
We also found archery, and SCNASP, to be accommodating to her needs.
When I say they've been accommodating I don't mean in the way of giving her extra arrows, or allowing her to shoot at only 10 meters instead of both 10 and 15 meters. No one felt sorry for her or gave her allowances because she has Down syndrome.
The accommodations were simple things like requesting she be on the left side of the lane so she can draw her arrows in front of her instead of having to reach behind her.
Other than that she follows all the rules of a tournament just like everyone else and she learned all the rules and routines. She waits on the line for the whistle, once the whistle blows she nocks her arrow and shoots 5 arrows, she hangs her bow up. She stands back and waits for everyone to finish and listens for the 3 whistles to go retrieve the arrows from the target and put them back in her container. She gets her bow off the rack and stands at the line waiting for the whistle to begin the next round. I'm so proud of her for learning all of this to be able to participate in tournaments.
Her next tournament she finished with a score of 76! I couldn't believe how much she improved on her score from her first tournament and I was hoping that by the end of the season she would break into that 100 mark.
This happened at her 3rd tournament. She cracked 100 with a score of exactly 100. I was so, so excited and proud of her for reaching (what I considered) a milestone moment (score).
The middle school team didn't qualify for State (or National) so it was just 2 more local tournaments to finish the season. Or so I thought.
At the beginning of summer her school team was asked if they would like to participate in the World tournament with another local school. The other school's team qualified for World, but didn't have enough archers to make a team to take to Orlando. So a handful of archers from Kayla's school, including Kayla, participated with this other school at the World tournament.
So remember Regional? Her high score of 113? She blew by that score.
She scored a 151!! 151 people! This is from someone who scored 36 on her first tournament and 6 tournaments later she had a 151! To say I was shocked at 151 is an understatement - I was hoping for maybe in the 120s, but not expecting 151. She also wasn't dead last in the ranking categories either. 21 girls finished below her for over all girls, 3 below her for all 7th grade girls, and 5 below her for middle school girls.
She received her first sports letter and pin for archery :)
This was taken last week while she was at Camp Victory Junction - I love this shot of her!
A quick shot while practicing at home:
I'm glad this has been such a positive experience and I'm so glad she had this opportunity to participate; I can't wait for the upcoming season!
Monday, October 17, 2016
In Beth's Words
I met Cindy through her blog Adventures With Beth. Beth is her adult daughter who has Down syndrome. I enjoy reading about Beth's life ... I remember when we (several bloggers) celebrated Beth's job and a new relationship (as well as you can celebrate over the internet!).
Since Cindy was much father ahead on the parenting journey with Beth than I am with Kayla I liked getting a glimpse into their lives.
I asked Cindy if Beth would like to guest post on my blog for 31 for 21 and give her perspective as an adult with Down syndrome - what life is like for her. I'm happy to report that Beth was willing to share about herself on my blog! Here are Beth's words about her life:
Hi,
My name is Beth. I met my boyfriend Nick, at bowling alley and kissed (giggle!) and hugs. He’s a great guy I met. We talk about marriage and our futures. Where we live. He came to 4th of July parade. He sat next to me. He hang out in my room. We watch movies like Full House and Joseph. (Joseph and the Amazing Technicolor Dreamcoat.) He came to my birthday with his parents.
I like to sing and do art at karaoke with my friends. I sing like Cheetah Girls and Christmas songs, Cats. Oh yea and Les Mis and Phantom.
I work at Little Caesars. I help them fold their boxes. First I set my alarm my phone for the time when I finish. I sign in. I go to fold boxes.
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Since Cindy was much father ahead on the parenting journey with Beth than I am with Kayla I liked getting a glimpse into their lives.
I asked Cindy if Beth would like to guest post on my blog for 31 for 21 and give her perspective as an adult with Down syndrome - what life is like for her. I'm happy to report that Beth was willing to share about herself on my blog! Here are Beth's words about her life:
Hi,
My name is Beth. I met my boyfriend Nick, at bowling alley and kissed (giggle!) and hugs. He’s a great guy I met. We talk about marriage and our futures. Where we live. He came to 4th of July parade. He sat next to me. He hang out in my room. We watch movies like Full House and Joseph. (Joseph and the Amazing Technicolor Dreamcoat.) He came to my birthday with his parents.
I work at Little Caesars. I help them fold their boxes. First I set my alarm my phone for the time when I finish. I sign in. I go to fold boxes.
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Friday, October 14, 2016
Victory Junction Family Weekend
One of the nice things about living in SC is being close enough to attend Victory Junction!
Kayla has attend camp the past few summers and Lucas attended once for the sibling session. (Unfortunately for Lucas that was the last year they had sibling camps - he really liked it there!) The past couple of years while Kayla has been at camp, Lucas and I have stayed in NC for our own little vacation together exploring museums, the zoo, and geocaching.
They also have Family Weekends in the Spring and Fall for the whole family to attend. We've been fortunate to have attended a few of those as well!
We just went last month, and a bonus was that friends from our area were also selected to attend that same weekend. It was fun for the kids to be able to hang out.
One of the things I like about this camp is their ability to accommodate special diets; ie gluten free since Kayla has Celiac Disease. It's so nice not to have to worry about packing gluten-free food for her since it's all provided.
We had a fun family weekend getaway with activities like bowling, fishing, boating, horseback riding, archery, dance parties, and the ever-popular Stage Night.
I think the highlight of this trip was the archery experience. We all got a bull's eye by popping the balloon ... that was pretty exciting! Speaking of archery - Kayla is on the archery club at school this year; I'm happy for her and can't wait to see how she does.
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Kayla has attend camp the past few summers and Lucas attended once for the sibling session. (Unfortunately for Lucas that was the last year they had sibling camps - he really liked it there!) The past couple of years while Kayla has been at camp, Lucas and I have stayed in NC for our own little vacation together exploring museums, the zoo, and geocaching.
They also have Family Weekends in the Spring and Fall for the whole family to attend. We've been fortunate to have attended a few of those as well!
We just went last month, and a bonus was that friends from our area were also selected to attend that same weekend. It was fun for the kids to be able to hang out.
One of the things I like about this camp is their ability to accommodate special diets; ie gluten free since Kayla has Celiac Disease. It's so nice not to have to worry about packing gluten-free food for her since it's all provided.
We had a fun family weekend getaway with activities like bowling, fishing, boating, horseback riding, archery, dance parties, and the ever-popular Stage Night.
I think the highlight of this trip was the archery experience. We all got a bull's eye by popping the balloon ... that was pretty exciting! Speaking of archery - Kayla is on the archery club at school this year; I'm happy for her and can't wait to see how she does.
The theme was An Evening In Paris; wear something black and white with a splash of pink!
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Thursday, October 13, 2016
National Down Syndrome Adoption Network
Last year I blogged about the National Down Syndrome Adoption Network and the crucial role they play in helping connect parents who are placing their children with Down syndrome for adoption to families who are looking to adopt children with Down syndrome.
The NDSAN maintains a registry of families who are home-study ready for adoption in the U.S.
Stephanie Thompson, the director, recently put out a call seeking more families from the state of North Dakota who are home-study ready for domestic adoptions and would like to be on their registry.
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The NDSAN maintains a registry of families who are home-study ready for adoption in the U.S.
Stephanie Thompson, the director, recently put out a call seeking more families from the state of North Dakota who are home-study ready for domestic adoptions and would like to be on their registry.
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Wednesday, October 12, 2016
Survey for Hispanic Parents of Children with Down Syndrome
Julianne Whitleigh is a Master's in Genetic Counseling student at the University of Maryland School of Medicine.
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Her graduate research project is on the difference in experiences in medical settings for those who speak Spanish (or English as a second language) and those who speak English as their first language as it pertains to receiving a diagnosis of Down syndrome.
This project aims to study the satisfaction with the new diagnosis experiences as explained to Hispanic parents of children with Down syndrome.
The survey, which should take 20-30 min, is available in Spanish and English and focuses on the experience with the first in-depth discussion about the Down syndrome diagnosis. The hope is to use the information gained to help doctors and genetic counselors provide better care to Hispanic families with children with Down syndrome.
No identifying information will be collected on the survey.
If you'd like to participate in this study click here.
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