The Human Trisome Project is a ground-breaking research initiative into Down syndrome and researching the medical complexities that can accompany having an extra 21st chromosome.
I first heard about the vision for this project at a Global Down Syndrome Foundation medical round table discussion at the NDSC Convention a couple years ago - exciting to see it's up and running now!
The mission of this project is to "...significantly advance our understanding of several major medical conditions and human biology in general, enabling the developmental of novel diagnostic and therapeutic tools to serve not only individuals with Down syndrome, but also the billions worldwide who experience conditions affected by trisomy 21."
This research will be the larges and most comprehensive of its kind helping to answer the questions of why people with Down syndrome are predisposed to diseases like Alzheimer but seem to be protected from some kinds of cancer.
They are currently enrolling anyone between the ages of 6 months to 89 years.
They are enrolling:
- people with Down syndrome
- people who have a family member with Down syndrome
- healthy people who don't have Down syndrome
Basically anybody and everybody can participate in this important research project.
Click here for more information and click here to get involved.
Showing posts with label awareness. Show all posts
Showing posts with label awareness. Show all posts
Monday, October 30, 2017
Sunday, October 29, 2017
If I Could Go Back
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.
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.
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.
Wednesday, October 25, 2017
Medical Research in Down Syndrome
Down syndrome continues to be the most common genetic disorder and the least funded. There is so much to learn about the connections to the 21st chromosome and research is so important.
It's important not just to the individuals with Down syndrome and their families - but it is important in the general population as well. There is a huge connection with Down syndrome and Alzheimer and potential cures for Alzheimer can help the general population. There is also interest in researching in why people with Down syndrome are less likely to get certain cancers - like breast cancer - or more likely to be diagnosed with leukemia, but have a higher rate of survival.
Frank Stephens, a self-advocate, testified on Capital Hill regarding the importance of funding for Down syndrome research. It's important for his voice to be heard.
As he states, people with Down syndrome are "...a medical gift to society, a blueprint for research into Alzheimer, cancer, and immune system disorders."
You can also watch the testimony of Michelle Sie Whitten, Co-Founder, President, and CEO of the Global Down Syndrome Foundation.
What can you do as families? Have you registered with DS-Connect: The Down Syndrome Registry? You can connect with researchers and health providers and possibly participate in certain clinical studies.
It's important not just to the individuals with Down syndrome and their families - but it is important in the general population as well. There is a huge connection with Down syndrome and Alzheimer and potential cures for Alzheimer can help the general population. There is also interest in researching in why people with Down syndrome are less likely to get certain cancers - like breast cancer - or more likely to be diagnosed with leukemia, but have a higher rate of survival.
Frank Stephens, a self-advocate, testified on Capital Hill regarding the importance of funding for Down syndrome research. It's important for his voice to be heard.
As he states, people with Down syndrome are "...a medical gift to society, a blueprint for research into Alzheimer, cancer, and immune system disorders."
You can also watch the testimony of Michelle Sie Whitten, Co-Founder, President, and CEO of the Global Down Syndrome Foundation.
What can you do as families? Have you registered with DS-Connect: The Down Syndrome Registry? You can connect with researchers and health providers and possibly participate in certain clinical studies.
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.
Sunday, October 22, 2017
Guardianship Thoughts
Last week I watched a webinar about the Beyond Academicss Program at the University of NC Greensboro.
Last year I blogged about how impressed I was with their program after talking to them at the NDSC Convention and this webinar just reinforced to me how much I would love for Kayla to attend their program, or one very similar to it.
Just a few examples of the success their graduates have had compared to people with intellectual/developmental disabilities across the nation:
61.5% were employed compared to just 35% across the nation
54% lived independently/semi-independently compared with 36%
77% had checking account and wrote their own checks compared with 29%
92% completed volunteer/community service in last year compared with 19%
100% registered to vote compared to 62%
There was a lot of great information shared on the webinar but something stuck out to me that I didn't realize, or hadn't thought of before.
To be eligible for the program students have to be their own guardian - the parent(s) can not have guardianship.
I'm not sure if all programs have that requirement - and it's not mentioned on any of the ones I looked at on Think College, but I imagine the same would be true for any of them.
It does make sense that if you're sending your child away to a 4-yr residential program like this that you would not have guardianship of your child, but it was not something I had given a thought about.
We still have a few years left before we decide if we're going to pursue guardianship of Kayla or not. I know I don't want to have to do that, but it's something we really need to research and figure out what we're going to do. If having guardianship impacts her ability to attend a program like this we definitely need to take that into consideration.
There are some options to not pursing full guardianship though. ABLE South Carolina has an informative video about Supported Decision Making: A Family's Perspective.
This is something we will be exploring as a possibility for Kayla.
Last year I blogged about how impressed I was with their program after talking to them at the NDSC Convention and this webinar just reinforced to me how much I would love for Kayla to attend their program, or one very similar to it.
Just a few examples of the success their graduates have had compared to people with intellectual/developmental disabilities across the nation:
61.5% were employed compared to just 35% across the nation
54% lived independently/semi-independently compared with 36%
77% had checking account and wrote their own checks compared with 29%
92% completed volunteer/community service in last year compared with 19%
100% registered to vote compared to 62%
There was a lot of great information shared on the webinar but something stuck out to me that I didn't realize, or hadn't thought of before.
To be eligible for the program students have to be their own guardian - the parent(s) can not have guardianship.
I'm not sure if all programs have that requirement - and it's not mentioned on any of the ones I looked at on Think College, but I imagine the same would be true for any of them.
It does make sense that if you're sending your child away to a 4-yr residential program like this that you would not have guardianship of your child, but it was not something I had given a thought about.
We still have a few years left before we decide if we're going to pursue guardianship of Kayla or not. I know I don't want to have to do that, but it's something we really need to research and figure out what we're going to do. If having guardianship impacts her ability to attend a program like this we definitely need to take that into consideration.
There are some options to not pursing full guardianship though. ABLE South Carolina has an informative video about Supported Decision Making: A Family's Perspective.
This is something we will be exploring as a possibility for Kayla.
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."
Saturday, October 14, 2017
The Road We've Shared
The Road We've Shared (TRWS)"...focuses on caring for and supporting people who have Down syndrome and are over the age of 18..."
Kayla is 14 and it hit me recently that in 4 short years she will be 18. How is that possible already? I'm not ready for my child to reach the age of adulthood already. I'm glad this website/online community is available for parents and caregivers who have (adult) children with Down syndrome as those experiences present a different set of challenges than when our children are under 18.
The main focus area of TRWS are: Policy/Advocacy, Health/Research, Elder Planning, and Social History/Outreach.
A new initiative TRWS started at the beginning of this month is Life After High School - New Online Courses for Adults with Down Syndrome.
This new project includes these goals, among others:
- Allow self-advocates to the be the experts
- Provide opportunities to form friendships based on common interests
- Course materials that allow for a wide spectrum of abilities
- Support continued learning into adulthood
Registration is open for the first two courses - "For the Love of Musicals" and "Let's Get Ready to Rumble."
If you have an adult child with Down syndrome, or are a caregiver, check out The Road We've Shared!
Kayla is 14 and it hit me recently that in 4 short years she will be 18. How is that possible already? I'm not ready for my child to reach the age of adulthood already. I'm glad this website/online community is available for parents and caregivers who have (adult) children with Down syndrome as those experiences present a different set of challenges than when our children are under 18.
The main focus area of TRWS are: Policy/Advocacy, Health/Research, Elder Planning, and Social History/Outreach.
A new initiative TRWS started at the beginning of this month is Life After High School - New Online Courses for Adults with Down Syndrome.
This new project includes these goals, among others:
- Allow self-advocates to the be the experts
- Provide opportunities to form friendships based on common interests
- Course materials that allow for a wide spectrum of abilities
- Support continued learning into adulthood
Registration is open for the first two courses - "For the Love of Musicals" and "Let's Get Ready to Rumble."
If you have an adult child with Down syndrome, or are a caregiver, check out The Road We've Shared!
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.
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!
Tuesday, July 18, 2017
The Twelve Mile Bike Ride
I've been chronicling Kayla's journey to becoming an independent bike rider and two years ago she finally started riding a bike.
The year following that we didn't do much bike riding out as a family, but Kayla would frequently ride her bike around the block and gained more confidence and independence. Finally we took a family bike ride was off of our street/block and through a different part of our development. It was about 2 miles and I don't know what took me so long to do that with Kayla. For some reason I kept thinking that although she was riding around our street, she still wasn't ready to venture beyond that. All went well and we did that multiple times last year.
Because we live in the South where it's warm pretty much year round, we found ourselves taking our bikes out to an actual bike/running/walking (paved) trail on Christmas Eve day when it was near 70 degrees. This was the first time we took our bikes out of development ... and one of the things I had been longing to do while waiting/hoping/wishing Kayla would learn to ride a bike.
We had no set goals or predetermined spot along the trail where we planned to stop and turn around. We just figured we would ride a bit until Kayla got tired and then turn around. This particular trail actually ends up at Kayla's school ... about 6 miles from where we started. We mentioned that to Kayla, not with the intention of biking out there, but just as a point of reference - Hey this goes to your school!
Well, that was all the motivation she needed and the goal was set: she wanted to bike to her school. Of course the context of six miles means nothing to her. She was on the Running Club at school last year and part of their run would take them on this trail, but no where near where we were starting, it was only out near the school and back. But since the trail looks similar most of the way through, Kayla kept thinking we were closer to her school by saying that's where they would run for Running Club.
Anyway, we made it out to her school and what I was afraid of happening did happen. She was done. There was no motivation to go back the six miles we just came to get back to our van. We just started pedaling to go back when it started, "My legs are tired." Not that I blamed her. I think we were too ambitious thinking we could do a 12.6 mile bike ride our first time out as a family. But we had no choice, we had to bike back the way we came.
Joe was able to distract her and make her forget about her tired legs and we were once again off. A few more complaints here and there, but overall she did great on the way back. Until that one time she decided to stop. She came to a dead stop with Joe biking right behind her. He was behind her because a couple was walking on the opposite side of the path. He crashed into her bike with his handlebars going into her back. Of course there were tears, lots of tears. I worried about her getting back on her bike and just knew she wouldn't after that; yet we weren't quite close enough to our van for it to be a quick walk either. This was the moment of truth - would she quit after the crash and refuse to get back on? Or would she get back on that horse again?
Joe was able to calm her down and thankfully the tears dried up and she did it. She got back on her bike and we finally made it back to the van.
I was so proud of her for completing our first bike ride out on a trail, and just over 12 miles at that!
The year following that we didn't do much bike riding out as a family, but Kayla would frequently ride her bike around the block and gained more confidence and independence. Finally we took a family bike ride was off of our street/block and through a different part of our development. It was about 2 miles and I don't know what took me so long to do that with Kayla. For some reason I kept thinking that although she was riding around our street, she still wasn't ready to venture beyond that. All went well and we did that multiple times last year.
Because we live in the South where it's warm pretty much year round, we found ourselves taking our bikes out to an actual bike/running/walking (paved) trail on Christmas Eve day when it was near 70 degrees. This was the first time we took our bikes out of development ... and one of the things I had been longing to do while waiting/hoping/wishing Kayla would learn to ride a bike.
We had no set goals or predetermined spot along the trail where we planned to stop and turn around. We just figured we would ride a bit until Kayla got tired and then turn around. This particular trail actually ends up at Kayla's school ... about 6 miles from where we started. We mentioned that to Kayla, not with the intention of biking out there, but just as a point of reference - Hey this goes to your school!
Well, that was all the motivation she needed and the goal was set: she wanted to bike to her school. Of course the context of six miles means nothing to her. She was on the Running Club at school last year and part of their run would take them on this trail, but no where near where we were starting, it was only out near the school and back. But since the trail looks similar most of the way through, Kayla kept thinking we were closer to her school by saying that's where they would run for Running Club.
Anyway, we made it out to her school and what I was afraid of happening did happen. She was done. There was no motivation to go back the six miles we just came to get back to our van. We just started pedaling to go back when it started, "My legs are tired." Not that I blamed her. I think we were too ambitious thinking we could do a 12.6 mile bike ride our first time out as a family. But we had no choice, we had to bike back the way we came.
Joe was able to distract her and make her forget about her tired legs and we were once again off. A few more complaints here and there, but overall she did great on the way back. Until that one time she decided to stop. She came to a dead stop with Joe biking right behind her. He was behind her because a couple was walking on the opposite side of the path. He crashed into her bike with his handlebars going into her back. Of course there were tears, lots of tears. I worried about her getting back on her bike and just knew she wouldn't after that; yet we weren't quite close enough to our van for it to be a quick walk either. This was the moment of truth - would she quit after the crash and refuse to get back on? Or would she get back on that horse again?
Joe was able to calm her down and thankfully the tears dried up and she did it. She got back on her bike and we finally made it back to the van.
I was so proud of her for completing our first bike ride out on a trail, and just over 12 miles at that!
Monday, June 05, 2017
Better Late Than Never
Last Memorial Day, not the one that just passed, but the one in 2016, Kayla had a dance recital. That's how behind this post is - a whole year!
She did great with her recital the previous year - Coppeli - and I couldn't wait to see her shine again, and she didn't disappoint.
I didn't take any pictures of her dancing like I did before (it's easier to enjoy and actually watch her dance without concentrating on getting pictures). I did take a few before/after photos though - and her costume was so beautiful on her last year!
After her recital I posted this on Facebook:
"Proud mom tonight! Kayla may not be the most graceful dancer, she may be a step behind, or a beat ahead ... but she gives her all and she dances with joy. She dances with so much joy it radiates off her face.
At intermission someone came up to us to tell Kayla how well she did and that she told her husband that she just loves watching her dance because she smiles no matter what. The final dance production was a father-daughter dance and she had the best time. After the dance a lady came over to me and said that Kayla was her favorite of all the dancers during the father-daughter dance and it was such a joy to watch her dance.
Another lady came up to Kayla and asked if she could shake her hand - and said how great it was to watch her dance with such a big smile on her face the whole time.
On the way out a couple other people topped to say how precious she was dancing with her dad and how much they enjoyed watcher her dance because of how much fun she was having."
I had to keep my emotions (tears) in check because I know Kayla wasn't the best dancer - with her form or mechanics - but that's not what they noticed. They noticed her effort, her joy, and how much fun she was having just being up on stage dancing.
My mother-in-law took a couple of videos, but I don't know how to post them directly on my blog. She uploaded them directly to FB so I don't have a youtube link or anything to imbed on my blog and don't know how to get a video off FB. They videos are public, but I imagine you'd still need a FB account to view them.
Anyway, here they are:
First video of father-daughter dance
Second video of father-daughter dance
We took a break from dance classes this year, but yesterday we were reading one of the American Girl stories and the character takes ballet and Kayla said, "I like ballet best." I asked her if she missed going to ballet and wanted to take classes again. She said yes, but made it clear it was to happen AFTER camp - nothing stands in the way of her summer sleep-away camp!
Guess we will get back in to the dance routine after summer!
She did great with her recital the previous year - Coppeli - and I couldn't wait to see her shine again, and she didn't disappoint.
I didn't take any pictures of her dancing like I did before (it's easier to enjoy and actually watch her dance without concentrating on getting pictures). I did take a few before/after photos though - and her costume was so beautiful on her last year!
After her recital I posted this on Facebook:
"Proud mom tonight! Kayla may not be the most graceful dancer, she may be a step behind, or a beat ahead ... but she gives her all and she dances with joy. She dances with so much joy it radiates off her face.
At intermission someone came up to us to tell Kayla how well she did and that she told her husband that she just loves watching her dance because she smiles no matter what. The final dance production was a father-daughter dance and she had the best time. After the dance a lady came over to me and said that Kayla was her favorite of all the dancers during the father-daughter dance and it was such a joy to watch her dance.
Another lady came up to Kayla and asked if she could shake her hand - and said how great it was to watch her dance with such a big smile on her face the whole time.
On the way out a couple other people topped to say how precious she was dancing with her dad and how much they enjoyed watcher her dance because of how much fun she was having."
I had to keep my emotions (tears) in check because I know Kayla wasn't the best dancer - with her form or mechanics - but that's not what they noticed. They noticed her effort, her joy, and how much fun she was having just being up on stage dancing.
My mother-in-law took a couple of videos, but I don't know how to post them directly on my blog. She uploaded them directly to FB so I don't have a youtube link or anything to imbed on my blog and don't know how to get a video off FB. They videos are public, but I imagine you'd still need a FB account to view them.
Anyway, here they are:
First video of father-daughter dance
Second video of father-daughter dance
We took a break from dance classes this year, but yesterday we were reading one of the American Girl stories and the character takes ballet and Kayla said, "I like ballet best." I asked her if she missed going to ballet and wanted to take classes again. She said yes, but made it clear it was to happen AFTER camp - nothing stands in the way of her summer sleep-away camp!
Guess we will get back in to the dance routine after summer!
Friday, March 31, 2017
She's Thirteen, Not Three
This past Christmas I was at a crossroads with Santa. I also felt myself in a conundrum with wanting Lucas to believe for another year, but wanting to tell Kayla the truth. Lucas was highly skeptical so I knew it wouldn't last much longer. I blogged about him coming to terms with it, and wanted to include what I was going through with Kayla, but that blog post was already long enough.
Kayla is thirteen and in the 7th grade and hasn't questioned the story of Santa. She took the story at face value - Santa brings gifts and that was that. I don't remember when I found out the truth, or how old I was. I'm sure I didn't still believe when I was thirteen and I doubt Kayla's classmates still believe.
So one day, several weeks before Christmas, Kayla was talking about Santa and I just casually said, "Kayla, Santa's not real, ok?"
Kayla, "Santa is real."
Me, "Well you know all the Santas that you see at parties or parades? Those aren't real Santas, they are just people dressed up in costumes."
She replied back, "He's real at Christmas you know." I had to laugh at that.
The next time we talked about it she said, "Santa's fake" and I confirmed, yes, Santa is fake. He's not real. I wasn't sure if she really understood what I was saying or if she was only referring to the Santa at the Christmas parties.
Then there was the time Lucas was asking about Santa, again, and Kayla yelled out, "Santa's fake! Right mom?" oops!
Up until Christmas she seemed to just accept the "Santa's fake" line, but on Christmas Eve and Christmas Day she was back to insisting that Santa was real.
There is a certain kind of magical element to Christmas when you have young kids who believe in Santa, and it's fun to see their surprise and wonderment at receiving gifts they asked Santa for, but as kids grow up that belief eventually fades away and I'm not interested in keeping Kayla in a 'younger' mindset.
I'm not going to continue that ruse with Kayla just because she has Down syndrome.
I want Kayla to be taken seriously by her peers, potential employers, and by her community. If she is 25 years old and still believes in Santa, will they take her seriously? Will they presume her competent? Or will they think she is less capable? Will they continue to treat her younger than she is? I am not going to play along, or encourage my adult child, to believe in Santa.
I'm not saying there is a right or wrong way on how to handle this, only this is how I feel and plan to parent my child.
People already have a tendency to treat her younger than she is.
How many parents have a typical 13 year old daughter who, when leaving a medical office, are offered a sticker?
How many parents have a typical 13 year old daughter who, when left in the exam room the nurse, or assistant, asks, "Would she like to watch Peppa Pig?"
No, she is not going to watch Peppa Pig - she's thirteen, not three. I realize she might not look like she's thirteen, but she's obviously not a toddler.
Yes plenty of older children/younger teens watch cartoons, but there is a difference between cartoons and preschool programming.
Yes I had a sticker book, two actually, when I was a kid. I still had those books when I was thirteen. I don't think I was still collecting/trading stickers at that age though - or if I was it was not on a regular basis and it wasn't with stickers from doctor's offices (which are, usually, more of the preschool character variety.)
Kayla is going to believe what she believes and I can't change it, or force her to not believe in Santa, but I won't encourage it and I won't continue to tell her Santa is real.
Kayla is thirteen and in the 7th grade and hasn't questioned the story of Santa. She took the story at face value - Santa brings gifts and that was that. I don't remember when I found out the truth, or how old I was. I'm sure I didn't still believe when I was thirteen and I doubt Kayla's classmates still believe.
So one day, several weeks before Christmas, Kayla was talking about Santa and I just casually said, "Kayla, Santa's not real, ok?"
Kayla, "Santa is real."
Me, "Well you know all the Santas that you see at parties or parades? Those aren't real Santas, they are just people dressed up in costumes."
She replied back, "He's real at Christmas you know." I had to laugh at that.
The next time we talked about it she said, "Santa's fake" and I confirmed, yes, Santa is fake. He's not real. I wasn't sure if she really understood what I was saying or if she was only referring to the Santa at the Christmas parties.
Then there was the time Lucas was asking about Santa, again, and Kayla yelled out, "Santa's fake! Right mom?" oops!
Up until Christmas she seemed to just accept the "Santa's fake" line, but on Christmas Eve and Christmas Day she was back to insisting that Santa was real.
There is a certain kind of magical element to Christmas when you have young kids who believe in Santa, and it's fun to see their surprise and wonderment at receiving gifts they asked Santa for, but as kids grow up that belief eventually fades away and I'm not interested in keeping Kayla in a 'younger' mindset.
I'm not going to continue that ruse with Kayla just because she has Down syndrome.
I want Kayla to be taken seriously by her peers, potential employers, and by her community. If she is 25 years old and still believes in Santa, will they take her seriously? Will they presume her competent? Or will they think she is less capable? Will they continue to treat her younger than she is? I am not going to play along, or encourage my adult child, to believe in Santa.
I'm not saying there is a right or wrong way on how to handle this, only this is how I feel and plan to parent my child.
People already have a tendency to treat her younger than she is.
How many parents have a typical 13 year old daughter who, when leaving a medical office, are offered a sticker?
How many parents have a typical 13 year old daughter who, when left in the exam room the nurse, or assistant, asks, "Would she like to watch Peppa Pig?"
No, she is not going to watch Peppa Pig - she's thirteen, not three. I realize she might not look like she's thirteen, but she's obviously not a toddler.
Yes plenty of older children/younger teens watch cartoons, but there is a difference between cartoons and preschool programming.
Yes I had a sticker book, two actually, when I was a kid. I still had those books when I was thirteen. I don't think I was still collecting/trading stickers at that age though - or if I was it was not on a regular basis and it wasn't with stickers from doctor's offices (which are, usually, more of the preschool character variety.)
Kayla is going to believe what she believes and I can't change it, or force her to not believe in Santa, but I won't encourage it and I won't continue to tell her Santa is real.
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