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Tuesday, October 17, 2017

Sometimes it's Not About Down Syndrome (Repost)

This post is another repost from a story I shared seven years ago.

Last week Kayla and I went in to Boston's to pick up the gluten-free pizza I ordered for her.

Kayla, being Kayla, was all over the place. Ok, not too bad this time actually, just up and down from the bench and being very talkative. So the employee at the door couldn't help but notice her.

Several minutes later the pizza was finally ready and we were on our way out.

This employee, an older teen I think, or in her young 20s (I'm not good at guessing ages!), made a comment to me about Kayla.

She said, "She reminds me of my friend's niece." I said something like, "oh she does?" She replied, "yeah she looks like her."

If you have a child with Ds and someone makes a comment like that, 99.9% of the time they are trying to tell you they know someone with Down syndrome.

As I told my mom later - it's like a 'code' phrase to say "Oh I have a sister, cousin, friend etc, that looks like her" or something along those lines.

So it felt only natural to me to reply, "Oh she has Down syndrome too?"

The employee said, "Umm, no. She has blue eyes, blond hair, and the same kind of haircut." (we had just come from getting Kayla's hair cut shorter.)


Guess I learned a lesson - it's not always about Down syndrome when it comes to my child...and that's nice to know.

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."

Sunday, October 15, 2017

The Big, Red, #8 Buoy

Last month we went to Hilton Head for a quick weekend getaway.

We went to the beach for a couple of hours to walk around and for Lucas to use his metal detector. Beaches are supposed to be prime spots for metal detecting, right? We've struck out every time. I think he's found a penny the handful of times we've been to the beach. At that penny was actually found at the playground right before the beach!

It was still a nice, albeit windy, day out for a walk on the beach. On our way there we stopped for a quick geocache find.

Then we continued on to Coligny Beach and stumbled upon this:

As we were walking we noticed a crowd of people around this big red thing in the distance and everyone taking pictures. We got a little closer and could tell it was a buoy. Definitely not something you see on a beach every day!

I wondered to Joe why there was a buoy on the beach? Where did it come from? What is it doing here? I recently read about a boat that washed ashore somewhere in FL from Hurricane Irma (or maybe it was Maria), and wondered if a hurricane brought this ashore in Hilton Head.

So Joe turns to what else? Google. It didn't take long for him to discover that this Coast Guard Buoy #8 did indeed wash ashore from Hurricane Irma. They are still trying to figure out how to remove it (13,000 lbs!) and return it to Port Royal Sound.

A short break on bench swings after the walk on the beach.

Another geocache found on Hilton Head at Jarvis Park...

And some beautiful scenery at Jarvis Park; it is a really nice park with a large walking trail and beautiful views.

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!

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!)

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!

Wednesday, October 11, 2017

When Life Gives You a Rainbow

It's not every day you see a rainbow, but when you do, they sure can be a mood-lifter.

The vibrant colors appearing out of place against the blue sky and white clouds. How can you not ooh and ahh over one?

That's just what Kayla and I did today, and yesterday, too. Rainbows two days in a row! Yesterday we were only able to glimpse a small part of it. Today we saw almost the whole thing. It really was beautiful.

Kayla spotted it first - and she was so excited. "Mom! There's a rainbow!" and sure enough there it was. We spotted more of it on our way home - both of us squealing, "Oh look! there it is!"

Kayla took a few photos as we were driving home. Instead of 'stop and smell the roses' it was 'slow down and admire the rainbow'.

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.

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.

Sunday, October 08, 2017

Free National Parks Pass for People with Disabilities

I've shared this before on my blog, but it's worth sharing again for those who may not know about it.

People with disabilities can get a free National Parks Pass. The Access Pass is a lifetime pass available to US citizens (or permanent resident), who have a permanent disability - regardless of age.

The pass can be used at National Parks, National Wildlife Refuges, and many National Forest Lands.

The pass admits the pass owner and any passengers traveling with them in a vehicle at per-vehicle fee areas, or the pass owner and 3 additional adults where per-person fees are charged.

The passes can be obtained, in person, at a Federal recreation site (please see what paperwork you'll need to bring with you) for no fee. If you request the pass by mail there is a $10 fee.

Another opportunity to obtain a free National Parks Pass is through the Every Kid in a Park initiative. Every child in 4th grade (including students who are homeschooled) can receive a free pass good for one year.

Here is the link for families to print out the pass for their 4th grader, and here is a link where educators can print passes for each of their students.