The Day After

Friday, 1 November 2013

Another October has come and gone. Another 31 for 21 finished.

Thanks to everyone for participating in the annual blogging challenge for Down Syndrome Awareness Month.

I know some people express that it gets harder every year to blog every single day in the month of October; especially about Down syndrome specifically. I know it feels like you've come to a point where you've said (blogged) all there is to say about Down syndrome.

But please don't be discouraged. From the beginning (Tricia) said that every single day didn't have to be a post that was Down-syndrome related; and that still stands today. The point of the challenge is just that - a challenge to yourself to blog every day. If you miss a few days - it's ok! - the blog police are not going to come get you!

And even if you feel like you've said all there is to say - just remember, you never know who all is reading  your blog. Every day there is a possibility of a new family getting a Down syndrome diagnosis and they might stumble across your blog. You never know who you are reaching. You never know who might come away from your blog that day with a better understanding of life with a child with Down syndrome.

Maybe it's time to change the name to National Down Syndrome Awareness and Acceptance Month. I know there is some consensus in the Down syndrome community that awareness has been raised and we don't need to raise anymore awareness; that people are aware and what we need to be advocating for is acceptance.

I agree about acceptance, but I'm not so sure the intentions behind awareness have been fully met. Yes people are aware of Down syndrome. They know of Down syndrome, but there are still stereotypes. There are still misconceptions. There are still negative and false assumptions about people with Down syndrome.

For the new parent receiving the diagnosis of Down syndrome are they really aware of what that means today? Or do they still have an outdated image in their mind of what Down syndrome was years ago?

Has the right kind of awareness been raised outside of the community? The kind of awareness that paints a more accurate picture of the capabilities of people with Down syndrome? Or are people still not aware about Down syndrome until they have a reason to be - until they have a loved one with Down syndrome in their lives.

I don't claim to have all the answers, but I don't think we can totally stop the campaign to raise awareness either. I think we need to expand that campaign from awareness to include acceptance though. Hmm... should I start a change.org petition to get "Acceptance" added on to that monthly designation?

Since today is also the day after Halloween here are a few Halloween pictures of The Supergirl, The Pirate, The (not-so-bandwagon) Red Sox fan, and The Civilian!

 

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Ten Years In

Thursday, 31 October 2013

I've been doing this for ten years now.

I've been a parent to a child who has Down syndrome for ten years. A decade's worth of experience, yet I feel like I have no great wisdom or advice to give.

I experienced the roller-coaster of emotions upon realizing that my first born child has Down syndrome: through being in a fog, to guarding myself, to depression, to acceptance, to moving forward. Yet there is no way I could write a memoir.

There is nothing in my experience that would be overcoming anything and coming out the other side unscathed.

Even though everyone has their own story, there is nothing in my story of having a child with Down syndrome that would stand out.

I had no major turning point, but rather a slow day-by-day grasp of finding my footing of being a new mother and a mother to a child with a diagnosis.

I have one vivid memory of an 'a-ha' moment. Kayla was a newborn and I can't remember if we had our 2 week visit with the pediatrician at that point or not. I just remember trying to find something, anything, on Down syndrome. Something that would give me a glimpse into what this meant and what to expect.

I was in my room and picked up the Mayo Clinic Complete Book of Pregnancy and Baby's First Year that was sitting on my dresser. I found the section on special needs and Down syndrome. I can't remember a thing that was in the book about Down syndrome, but I remember it was the first time I came across Emily Perl Kingsley's "Welcome To Holland."

I know people either love or hate this poem. But for me, in that moment, it was what I needed to read. Maybe it was because I found it on my own and I didn't have it thrust in my face from so many people right after Kayla was born.

By the end of the poem I was crying (I'm sure postpartum hormonal fluctuations played a role in that, too).

Yes, when I read the line, "But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland." it spoke to me. It opened my eyes that I couldn't sit around and be depressed because I would miss out on the experience of being a new mom; the experience of this beautiful, adorable baby in front of me. So it did help give me perspective.

But here I sit after 10 years and I've heard over and over the usual cliches about being a parent to a child with Down syndrome and find that I can't identify with most of them.

I don't feel that Kayla was sent here to teach me a lesson. There is nothing that Kayla does with the intent and purpose of teaching me, or the world a lesson. She is simply a child, living her life. She does not exist so the world can learn from her.

She has not taught me to be more patient. Although I should be more patient, it is a 'lesson' that I've just resigned myself to not getting. I do get irritated and impatient with her; just as I do with Lucas.
 
I don't feel that having a child with Down syndrome has changed me as a person. I am still the same person I was before I gave birth to Kayla. The only thing that has changed is that I'm more aware of Down syndrome whereas I had no connection with it before her birth. Giving birth to her did not cause some seismic shift in my personality, in the core of my being. I am who I am and that didn't change just because my daughter was born with Down syndrome, anymore than it changed when I gave birth to my son.

I don't feel that having a child with Down syndrome has made me a better person or parent. I fail at being a parent every single day.

I can say that I can't imagine my life without Kayla, but it has nothing to do with Down syndrome. It has to do with the fact that she's my daughter and once someone important is in your life, of course you can't imagine life without that person in it. I can't imagine my life without my husband, my siblings, my parents, my son. It's not Down syndrome that makes me say I can't imagine life without Kayla in it.

She's a blessing in my life, but not because of having Down syndrome. Again, she's a blessing simply because she's my child, she was a very much wanted first-born child. She's a blessing because she's my daughter and I always wanted a daughter.

She hasn't taught me the meaning of unconditional love because she has Down syndrome. I would love her unconditionally if she was born without Down syndrome and I know she, and Lucas, love me unconditionally because I am their mother. Down syndrome doesn't play a part in understanding what unconditional love is; it's unconditional because we are a family.

My journey is not extraordinary. It's a journey like hundreds and thousands of parents, all doing the best we can with what we have and what we know.

There is nothing special and there are no great life lessons to be learned from my journey.

So, no memoir from me (there are some great ones out there though!). The single piece of advice I could give a new parent of a child with Down syndrome can be summed up simply and it is live your life. Live your life with your baby the way you planned to before you received that diagnosis.

Having a child with Down syndrome does change some things (school decisions, employment, independent living, planning for the future in a more precise way) but it doesn't change everything.

You have a baby with Down syndrome, and just like that old TV show ... Life goes on.

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Politely Cutting the Line

Wednesday, 30 October 2013

About a month and a half after school started we had a special-review IEP meeting. We discussed how the accommodations and modifications were working out, went over her progress thus far, and in general see if there was anything else the school team could be doing to help make sure Kayla would have a successful year.

During this meeting her teacher told us how all the kids really like Kayla and she gets along with everyone.

She said the kids all like Kayla so much, that when she goes up to sharpen her pencil she cuts in line and they let her. They don't say anything to her, but she knows if another classmate cut in line the students wouldn't let it happen.

Her teacher has been making sure it doesn't happen either and reminds Kayla she has to go to the end of the line.

I talked with Kayla about this when I got home.

Me, "Kayla when you go sharpen your pencil in class are the other kids sometimes in line already?"
Kayla, "Yes."
Me, "And you just go to the front of the line?"
Kayla, "Yes, I sharpen my pencil."
Me, "But Kayla you're not supposed to cut in front of the line. You need to wait at the end of the line."
Kayla, "I say excuse me!"

Well there you go. Maybe the other kids aren't being polite when they cut in line.


 

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Not Suffering From Down Syndrome

Tuesday, 29 October 2013

There was a discussion today on FB over a comment saying that people with Down syndrome suffer.

The reference to suffering from Down syndrome is seen in articles (the last 2 paragraphs) and websites describing the condition.

Here is the thing though: Down syndrome is not a disease. It is a syndrome. And this syndrome is a set of symptoms and/or characteristics indicating the existence of a condition.

Down syndrome is an extra chromosome. That extra chromosome does not cause the people who have it to experience pain from the extra chromosome. Pain would equal suffering. You do not suffer from the extra chromosome.

Yes, there are a list of potential health problems that can be associated with Down syndrome, but are not unique to Down syndrome; they can also be found in the general population.

Individuals with Down syndrome may be at a higher risk for certain health conditions, but not all people with Down syndrome will have every potential health condition listed. There are some people with Down syndrome who don't have any other health problems at all.

Kayla is relatively healthy. She doesn't have too many of the associated health conditions.
- She had a small ASD that closed on its own and a small PDA that was closed with a cardiac catheter
- She's had 4 sets of PE tubes in her ears
- She has Celiac Disease
- She has some vision issues and wears glasses
- She was recently diagnosed with mild/moderate sleep apnea and will probably need her tonsils taken out as a first plan of action

Who is to know if Kayla would have had any of those issues if she didn't have Down syndrome? Joe has had his tonsils and adenoids out and he still snores!

Dictionary.com defines suffering as: to undergo or feel pain or distress

Even with that small list of health issues; Kayla still wasn't/isn't suffering from any of those. She might have been suffering from a headache from eye strain before getting glasses, but she never expressed it if she was.

Many adults with Down syndrome do have dementia and/or Alzheimer's disease when they get older. It is more correct to then say that they are suffering from Alzheimer's disease (although it could be simply stated as saying they have Alzheimer's instead of suffering from). The 'suffering' would be referring to the condition/disease and not Down syndrome. 

You don't suffer from Down syndrome in and of itself. But some of the specific medical conditions that someone might also be diagnosed with could cause pain, and then suffering, if not treated.

Interesting that Dictionary.com also says, "It is better to avoid using the words suffer and sufferer in relation to chronic illness or disability. They may be considered demeaning and disempowering. Suitable alternative are have , experience , be diagnosed with."

Exactly. Kayla has Down syndrome, she does not suffer from it. 


 

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21 Life Experiences

Monday, 28 October 2013

21 life experiences that Kayla has had. Some of them are big life experiences (becoming a sister! flying to another country!) and some of them are little things (going sledding after a blizzard!) but they all add up to enjoying life, living life, and experiencing life.

1. Putting her feet in the ocean for the first time.
2. Flying to Denmark. Twice.
3. Taking a ferry to Sweden.
4. Enjoying the aftermath of a blizzard.
5. Going to an NFL game.
6. Having fun at the Boston Children's Museum.
7. Hiking a mountain.
8. Throwing out the first pitch at a Charleston RiverDogs game.
9. Going to Disney. And Sea World. And Sesame Place.
10. States Kayla's been to, or through: NM, AZ, TX, OK, WI, MO, IL, IN, OH, WV, VA, MD, DE, NJ, NY, PA, CT, MA, NC, SC, GA, FL.
11. Roller skating and ice skating.
12. Sledding at White Sands National Park.
13. Visiting a pumpkin patch and jumping in to a pile of hay.
14. Spending a weekend at Victory Junction camp.
15. Mastering the monkey bars.
16. Climbing a tree.
17. Participating in a dance recital.
18. Tea Party/Slumber party birthday.
19. Becoming a big sister. 
20. Giving yourself an oatmeal facial.
21. First job experience as a hostess at a restaurant.

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Down Syndrome Cognitive Test

Saturday, 26 October 2013

When you enter the land of IEPs you'll find your child having to go through a number of tests and evaluations. These are to determine which one of the 13 categories the child falls in to be eligible for special education services. In some states and school districts you can opt out of the actual IQ part of the test and just rely on other assessments to evaluate, but in other schools its not as easy to opt out.

These standardized tests really don't seem to truly show a child's abilities; they don't seem show an accurate picture of your child either.

A few years ago neuroscientists at the University of Arizona developed a battery of tests to aid in the assessment of cognitive abilities of people with Down syndrome. What's different about these tests is they are a series of computer exercises that are not language dependent.

Down syndrome affects 3 major parts of the brain: the prefrontal cortex, hippocampus and cerebellum. The tasks that are on these tests hone in on particular functions of the brain regions.

"The hope is that the test battery is a way to figure out, for any given child, where they fit developmentally within each of these particular domains. The battery will give us a handle on understanding that profile so you might be able to target an intervention in a specific way for a given person."

Right now these tests are useful for clinicians and researchers to use as a before-and-after tool for assessing interventions and figuring out which therapies might work best. Drugs are being developed and tested in phase 1 clinical trials for cognition intervention and the use of assessment tools like this will help with research studies.

I'm not sure how wide-spread the use of these tests are yet; the articles I found were from 2010, but if these tests seem to more accurately show the cognitive abilities of people with Down syndrome, because in large part of not being dependent on language demands, I wonder if there is anything in the works to use this test in a school setting for educational testing. It seems like schools would get a lot of value from this battery of tests and that the results would be more reflective of the individual student's abilities.

You can read the full report of the Development and Validation of the Arizona Cognitive Test Battery for Down syndrome in the Journal of Neurodevelopmental Disorders.



 

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Boogie Board

Friday, 25 October 2013

I don't know what it is about this Boogie Board, (sorry, link fixed!) but Kayla loves it.

It's not electronic, it's not battery-operated (there is a sealed watch battery that never needs replacing), there are no apps for it, no cartridges for it, no on-off switch.

It's simply a writing tablet with a stylus. Kayla loves to write, or more accurately doodle. I hate to say scribble, but I've mentioned before how much she struggles with handwriting. She loves having a pen and paper but she won't (usually) spontaneously write decipherable words, much less even letters, on her own.

She likes to make lots and lots of circles all over her paper. Which is why I got her a Spirograph Design Set so she could make cool designs with all those circles (but of course she doesn't use this as much as I thought she would).

But this Boogie Board? Loves it! Maybe it's how easily the stylus glides across the board. Maybe it's the fact that with the press of the little button at the top of the frame it instantly erases everything and you have a clean slate. I don't know what it is, but she's using it to do more writing than she did previously. Oh she still does a lot of doodling with it, but she independently writes more words with it than she does with traditional pen and paper. I've caught her several times copying down the title of books, or words from pages of the book. She'll ask me how to spell things and write them down. We've practiced math on it. She likes to have it in the car when I pick her up from school to go to vision therapy.

This is not a paid ad, or review. I saw it in some magazine (can't remember which one) and suggested it to my sister to get for Kayla's birthday. Lucas likes it so much that he might be getting one for Christmas.

Maybe this writing tablet/stylus tool might be useful to someone else out there who has a child who struggles with fine motor skills and writing. Maybe they might find the stylus easy to use as it glides across the board. Or you can use your finger too!
It also comes with a magnet so it could be hung up in a locker too.

I didn't expect Kayla to like it as much as she does; I was hopeful, but not expectant ... but it's probably her most-used gift ever!

 

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Impressed With Her Flexibility

Thursday, 24 October 2013

Kids with Down syndrome can be extra-flexible. I think this is a result of having low muscle tone/loose ligaments.

When Kayla was a baby/toddler people would often comment on her flexibility. I'm talking about being able to raise your legs straight up in the air almost touching your ears.

Lucas is impressed with Kayla's skills and has commented on this several times over the past few months. If he's trying to get by her in the van she swings her legs around and up for him to go across instead of bending her knees and bringing them to her chest.

A few months ago he was trying to find the words to explain this to me and he came up with: "Disability people can do something that not disability people can do! Watch Kayla, see how far her legs go up? Wow! Mine can't do that!"

(Before anyone says anything, yes, I realize that was not People First Language; however, he's 5 years old. He was trying to figure out the words to use to explain what he was thinking. The PFL will come with time. I modeled it for him by saying, "I don't think it's necessarily that people with disabilities can do that, I think it's more likely that people with Down syn can do that because they can be more flexible.)

I thought it was cool that he thought it was cool that she could do something that he couldn't, because she has Down syndrome.

My kids humored me and re-enacted Lucas trying to get by Kayla and Kayla raising her legs, so you can see that flexibility in action.

Make a video - it's fun, easy and free!
www.onetruemedia.com

This doesn't have anything to do with being flexible, or having Down syndrome, but Lucas noticed something else Kayla can do that he can't (yet!). She can pick him up and carry him, but because she's still taller than him, he's not able to lift her up. He thinks that's cool too. "I can run faster than Kayla and Kayla is stronger than me!"

And since Kayla had those Shoulder Buddies I mentioned in the previous post about sensory issues, I did a quick video of what she likes about them. 

Make a video - it's fun, easy and free!
www.onetruemedia.com

 

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Sensory Processing or Just Her Thing?

Tuesday, 22 October 2013

Most of us have some sensory issues in some capacity. Whether it's a certain something we don't like to touch, or a certain texture of food or drink we don't like to taste. For instance Kayla likes apples and applesauce but she doesn't care for apple pie/apple crisp (or any pie for that matter). I don't think she likes the soft texture of the apples when they've been baked.

A lot of kids with a disability are sometimes also diagnosed with a sensory processing disorder.

Kayla's never been diagnosed with this and we've never had any real concern about it, but sometimes I wonder if she does have something sensory going on that maybe impacts her more than we realize. Or not. Maybe these things are just little quirks like we all have.

She does not like having her hair brushed. Sometimes it's because of little snarls or tangles, but I condition her hair and I spray it with de-tangle spray. There are times she acts like it's the most painful thing in the world to have her hair brushed.

She also will not keep anything in her hair. When she was younger I could put barrettes in (not that they'd stay in very well because of her fine hair, but I could still put them in) and put her hair in ponytails. Not anymore. No ponytails, braids, barrettes, or hairbands. Some mornings she'll tell me "yes" that I can do something with her hair, but she usually doesn't come home with her hair the same way.

Last year I bought her a few of those shirts that have the necklaces attached. She would come home with the necklaces in her backpack. She's doing somewhat better this year of leaving the necklaces alone.

Belts on her dresses? She constantly unties them and then fiddles around with the belts to the point of distraction until those, too, come off.

She won't keep on any other type of necklace, rings, bracelets or watches. She seems to like jewelery ... she'll get excited about something, pick something out of a treasure box, but she simply won't keep it on. She got a watch for Christmas last year and several times would ask for it on but less than an hour later she's asking for it to be taken off.

She has come home from school with 3 of these rubber band bracelets and 1 ring. She excitedly shows me that so-and-so gave her this one and so-and-so gave her that one. She'll wear the bracelets; briefly. Back in her backpack they go. I've tried encouraging her to wear the bracelets by saying that's what the other girls in her class are wearing (as if I was ever the fashion-conscious girl growing up - not!), and telling her how nice it was that so-and-so gave her a bracelet and she should wear it to show her she's wearing it. Some mornings she'll head off to school with it on, but it's in her backpack by the time she comes home. In other words, she doesn't like to accessorize!

She loves things like paintbrushes, leaves ... anything feathery. She likes just holding them in one hand and brushing it across the palm of her other hand. She likes pretending many things are paintbrushes and that she is painting.

Sometimes she'll get a hold of a pencil and just walk around all afternoon with it. And then there is the thing that she does with the erasers on the pencils that drive me crazy.

She absolutely loves these Shoulder Buddies. Or more specifically the hair. She'll brush their hair over and over and over on the palm of her hand. Or brush the air with them. Or shake them out and then mold the hair over and over and over again.

She also picks at her nails, and the skin around her nails. Her fingers look bad, but I can't get her to stop something she doesn't seem to be aware of doing.

What kind of sensory quirks or habits do your kids have?


 

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3 for 21: 3 Favorite Posts

Monday, 21 October 2013

Monthly blog hop (3) on the 21st: A Down Syndrome Blog Hop.

This month's blog hop: 3 favorite posts related to Down syndrome (your own, or from another blog). 

This first one is a two-part blog post. I originally posted Hope and Normalcy as a result of reading a blog by a doctor talking about giving a Down syndrome diagnosis and that he can not parents there is any chance their baby will be normal. My follow up post Hope and Normalcy Part 2 was in response to an anonymous commenter who said, among many things, that her husband said he would divorce her if she didn't have an abortion. He wasn't equipped to have a child who wouldn't have a chance to grow up normally which meant at a high level of intelligence.

The second one isn't specifically about Down syndrome, but it is about Kayla and how sometimes, you just gotta believe in what you see.

The third one is a light-hearted, somewhat tongue-in-cheek, post about the perks of having Down syndrome. Perks like a free, life-time pass to the National Parks.


 

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The Sibling Age Gap

Wednesday, 16 October 2013

When Joe and I started talking about when to try for a second child we envisioned having them relatively close in age. While the age gap between them isn't that large (4 years 7 months to be exact), there are times I wish they were closer in age; like now that Lucas has started school.

I thought it would be nice for them to grow up going to school together, but that's likely not to happen beyond elementary school.

Because Lucas was born in February he didn't start school until this year; because Kayla repeated Kindergarten she is in 4th grade this year, otherwise she would be in 5th and this would be their only year in the same school.

I know that students with disabilities can stay in school until they are 21, or maybe 23 in some states, but I don't know exactly how that looks and I know each state does things differently.

Does that mean when they are 18 and a senior they walk across the stage w/the classmates they've been with for 4 years and then return back to their high school to do it all again with the next group of seniors? And then do it again after that? Or do they just walk across the stage the one time with their classmates but keep going back to school for the next 3 years? To do what? Take all the same classes? Go to another separate part of the school to work on life skills? Take 3 more years for a job-type class? I have no idea and I haven't looked too much in to it since things could be different by the time Kayla is in high school.

But right now I don't want that for her. I don't know what it will be like when she's in high school, but I don't want her to go through the motions of walking with her class at age 18 and then just continue to go back to the school for the next 3 years. I don't know what all the answers are though.

IF she does do something like that, then I guess it would be possible for she and Lucas to be at the same high school at the same time.


But as of right now they'll only have one more year of being at the same school together and riding the same bus together. (Unless we hold her back to give her another year in elementary school before transferring to middle school - but I'm not sure I want to do that either given that she's already repeated a grade and would then be 2 years older than her classmates).


When she starts middle school he'll only be in 2nd grade. And when she's finishing high school he'll be finishing middle school.

I don't know why this feels so important to me, but it does make me somewhat sad. I wish that she would have her brother with her through the school years. Just to have that familiar face and someone on her side. And there's probably a part of me that was hoping he would be there to 'watch over her' - keep an eye out for her.


Overall I just wish all this school stuff and decisions and placements and transitions didn't have to be so hard.

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Girl Scout Fun

Tuesday, 15 October 2013

I recently signed Kayla up for Girl Scouts (as if we don't have enough going on!) but a friend of mine convinced me to give it a try. Her 2 daughters are in this troop and Kayla knows them too.

Another opportunity for Kayla to get out, be social, and make new friends.

Last weekend we had our first event/outing with the troop (pumpkin patch) and Kayla had a great time. Looking forward to next month's trip to go ice skating!

 

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Down Syndrome Termination Rates

Monday, 14 October 2013

Ever since Kayla was born I've seen/read an often quoted stat that about 90% of babies with Down syndrome are aborted. That statement is very misleading though; sometimes I would see it more accurately portrayed with the words *prenatally diagnosed.*

Simply saying 90% of ALL unborn babies with Down syndrome is misleading because it doesn't take in to account the percentage of diagnoses that were made at birth or the percentage of cases that were suspected (such as my own) by a screening test but not confirmed by an amnio or CVS.

I have been guilty of using the "90%" figure in the past, but I at least would make sure to say that was of prenatally diagnosed pregnancies.

However, even repeating that statistic was harmful because it leads women who do get a prenatal diagnosis via amnio or CVS to believe that virtually all women in that situation do abort; and that it is probably the most acceptable decision to make.

In reality the 90% statistic is not accurate. Not even 90% of pregnancies that were prenatally diagnosed with Down syndrome is accurate. Recent research has shown the percentage to be much lower.

24 studies done across the US between 1995-2011 show the weighted average is about 75% of those who get a prenatally confirmed diagnosis via amnio or CVS. And only about 2% of women in the US get an amnio or CVS, so that 75% only applies to that small group of women ... and only those women who get a positive diagnosis. (**Natoli et al. 2012. Prenatal diagnosis of down syndrome: systematic review. Prenatal Diagnosis. 32, 142-153.) (Termination rates for other countries are higher though).

The Down Syndrome Guild of Greater Kansas City has put out a great file on dispelling the 90% myth and why it's important to stop using the 90% statistic. But I can't figure out how to attach the PDF so I'll cut and paste this part of the file giving credit to the DSG of Greater KC.

This myth also infects our culture leaving many people saying in public forums, "If the vast majority of people terminate a pregnancy when they find out the baby has Down syndrome, then Down syndrome must be really, really bad." This leaves parents of children with Down syndrome feeling like they have to justify their decision to continue a pregnancy when questioned by those around them. Fundamentally, this myth risks creating a culture that is less likely to accept and value children with Down syndrome, and it's based on false information.

So if, like me, you've also quoted the 90% rate, please know that recent research shows 75% of prenatally diagnosed pregnancies is more accurate.

 

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What I Didn't Know

Saturday, 12 October 2013

I really don't remember what was said to me by the doctor, who after examining Kayla, came to talk to us about some characteristics she had and that he suspected Down syndrome.

I already knew the moment she was born and I looked at her face and in to her eyes that she had Down syndrome.

I wanted him to dispute what I suspected, but he didn't. So while he was talking to us my mind went blank. I didn't register all that he said. It was a short conversation. I don't remember being alarmed by anything he said, I don't remember anything particularly negative that he said either. I think he had a somewhat neutral to positive tone. But I couldn't tell you what he said.

I know many other parents had a different experience in which the tone was largely negative focusing on all the potential medical issues that may or may not affect their child.

No one knows anything about what their child will be like after they given birth. Whether they have Down syndrome or have the typical 46 chromosomes. No one can tell anyone else what life will be like with their child and I understand that.

The things I didn't know then ... Kayla's personality, her quirks, her likes and dislikes, her abilities are what made it somewhat harder at the beginning. Even though rationally, I know that no one could tell me those thing about Kayla, just as they couldn't tell me about Lucas.

But what would be nice to hear along with the Down syndrome diagnosis would simply be that you will take your baby home and live life ... no, not just live life, but experience life with your child. And that experience includes frustrations, challenges, joy, and love.


I'm re-sharing this post I wrote 2 years ago for Parents.com; Having A Child With Down Syndrome: What Nobody Tells You.

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Buddy Walk 2013

Friday, 11 October 2013

Last weekend we participated in our 11th annual Buddy Walk. It seems odd to say 11th annual when Kayla is only 10, but we walked in our first one the year she was born, 2003, when she was just shy of 3 months old. Technically this was our 12th total walk since we participated in two walks in 2009 when we lived in MD.

From what I can remember of each of the 12 walks ... we've always had a nice, sunny day ... except one time. That cold, rainy day from the Northern VA walk. I'm talking coats, scarves, and gloves kind of cold!

I guess when you've lived in NM and SC the walks usually end up being warm/hot and sunny. And add humid to the mix when you're on the east coast! Last weekend was no different. Although there was some rain that day, it seemed to have rained all around the area ... except Daniel Island where the walk was held.

Kayla enjoyed snuggling up to this sweet baby (and she kept trying to wake him up!) He was born at Holloman AFB, NM ... just like Kayla was!


Our team, minus my mom who stayed under the shade!


Kayla's BFF


At the end of the walk: red, hot, and sweaty!


With the band:
 

Future drum major?
 

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Class Presentations About Down Syndrome

Thursday, 10 October 2013

A commenter in yesterday's post asked if I did a presentation to Kayla's class when she was in Kindergarten. (I couldn't find a way to contact you directly, so I'm doing a post about what I've done for the past few years.)

I know some parents send a letter to all the parents from their kid's classroom at the beginning of the year. They explain their child has Ds and what that means for them, and that they are still part of the classroom etc. I know for the parents that have sent it they always say it is a very positive thing and they usually get many responses back. I've never done the letter. I've always had mixed feelings about it. I don't want to single Kayla out even more by having a letter go to her classmates' parents all about her and her diagnosis. Although I can see how it could open the lines of communication between her classmates and their parents. It's just that no other parent in the classroom sends out a letter about their child and what issues they may or may not have in the classroom.

I didn't speak to Kayla's class when she was in Kindergarten. No specific reason! I think mainly it was because I didn't know what to say and I'm not comfortable speaking in front of a group of people ... even if they were only 5 years old! But I realized that never gets easier for me - whether they are 5 years old or 10 years old!

Several years ago the NDSS offered a kit called "Everybody Counts" and it included a VHS tape (that's how long ago it was created!), a poster, and teacher lesson plans and activity sheets that were separated by grades. In 1st grade I gave Kayla's teacher the VHS to show to the class and the teacher materials. In hindsight, I probably should have been in the classroom when the teacher showed the video and not have left her to do it alone and handle any questions that came up, but for some reason I wasn't there. I figured it was a cute, short video on a friendship where one child has Ds and the other doesn't. The teacher said they did have a little discussion afterwards and it went well. The video - My Friend Isabelle - is online. I think this would be very appropriate to show to a Kindergarten class.

The NDSS doesn't have this kit anymore but they do have a "Get To Know Me" poster and accompanying lesson plans for grades K-2 and 3-5.

In 2nd grade I finally got up the nerve to speak to Kayla's class! I emailed the teacher this photograph of Kayla's chromosomes and she put it up on the smart board. I talked to them about the chromosomes in our body, what they mean, and pointed out that Kayla had that extra one on the 21st chromosome. I talked a little bit about how that affects her. Then I read the book Meet Annie. Each page describes something about Annie - her likes (baby dolls and balls), getting in trouble (for eating a cookie before dinner), being afraid (of the dark), sometimes messing up and needing help, and asks a question of the reader. "Do you sometimes get in trouble too? Are you ever afraid? Do you need help?" When I read this book and asked those questions I also asked it to the class so they were participating and raising their hands about what they needed help with, what their favorite food was etc.

In 3rd grade I did the same thing with the picture of Kayla's chromosomes and a brief explanation. I also pointed out ways Kayla was like them, and ways that we are all alike and different from each other. I asked the class several questions like "Who has been on an airplane? Who has been overseas? Who likes popcorn? Who likes the beach? Who likes roller coasters?" Her classmates were watching Kayla to see which questions she raised her hand. The book I read last year was High Fives and a Big Heart. The book is written and illustrated by a 4th grade class about their classmate Jeffrey, who has Down syndrome. The book is the second book from Mikayla's Voice.

For this year I'm going to talk with Kayla's teacher about showing the video in yesterday's post, again showing the picture of her chromosomes (I think the visual of those being the actual chromosomes from inside her body is something neat to show the kids.) I am also going to use my explanation to Lucas in the "Chromosome Talk" about how the extra chromosome also means extra material in her brain and why it takes her longer to learn things.

Since the discussion about Down syndrome, and Kayla, includes the ways that it makes things harder for her to do, I think this year I am also going to make this about all the neat things that have happened to Kayla because she has Down syndrome, and some things that have happened but have nothing to do with Down syndrome ... but just let the moment be about her and let her shine.

Neat things like:
- Her pictures are in the British Journal of Hospital Medicine for an article on "The Eye and Down's  Syndrome (it is apostrophe s in the U.K.).

- Then those eyes became a bit more famous when she was the grand prize winner ($25K scholarship!) in Prevent Blindness America's Most Beautiful Eyes contest. She didn't win this because she has Down syndrome, but she does have beautiful eyes because she has Down syndrome. She has beautiful Brushfield spots in her eyes, and the almond shape is flattering on her!

- A picture of her was used in a poster from the Oregon Council on Development Disabilities for their I Have a Voice self-advocate/awareness poster.

- She's twice had her picture up on the Jumbotron in Times Square for the NYC Buddy Walk.

- She's thrown out the "first pitch" for the Charleston RiverDogs and befriended a (now former) pitcher.

- She was a model in the Global Down Syndrome Foundation's Be Beautiful Be Yourself Fashion Show and walked the runway with supermodel Beverly Johnson.

And a couple of neat things that had nothing to do with Down syndrome:

- She is in the National Military Family Association's pamphlet "Toolkit About Military Kids."

- Kayla (and Lucas) were in a back-to-school fashion article from the Lowcountry Parent Magazine.



This post is also linked up with the IDSC's Taking Down Syndrome to School blog hop.

  

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Just Like You - Down Syndrome

Wednesday, 9 October 2013

I shared this video last year, and am sharing again because the Down Syndrome Guild of Greater Kansas City did such a wonderful job with the Just Like You advocacy and awareness video.

It's nice to see the different sets of friends and hear them talking about their friendships.

I was thinking of sharing this video with Kayla's class - 4th graders. The video is 13 minutes long, do you think that age group will maintain interest in this video, or is it too long to show during my talk? I haven't yet talked with her teacher so I'm not sure how much time I'll even have in the classroom. I like to show a picture of Kayla's chromosomes and just talk about why she has Down syndrome and then a little bit about what that means for Kayla.

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Growing Up

Tuesday, 8 October 2013

Two pictures of Kayla from several years ago. She is 10 now. Double digits. Tween. Pre-puberty. Hormonal and emotional. Dependent and independent. Growing up.

It doesn't seem that long ago that she was our little girl. We didn't know what to expect ... and still don't. She is still showing us. She is still paving her way. She is still figuring out her place in this world; and so are we.

This first picture is a favorite of mine. A glimpse of the beautiful girl she is growing up to be.

This second picture is a favorite of Joe's. She'll always be his little girl...in the same way that all fathers think of their daughters.

 

There is a frequent mind-set that I've heard since Kayla was born ... the impression that kids with Down syndrome stay babies 'longer' and you get to 'enjoy the baby stage longer' and 'they don't grow up, so you'll always have a child.'

But it's not true. They do grow up. They get a year older every year. She was a baby, then a toddler, then a preschooler, and now she's 10.

Growing up ... faster than I want her to.


 

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