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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.

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.

Friday, October 20, 2017

Visiting Family in Wisconsin

Last month we went to Wisconsin for my grandmother's funeral. Initially I didn't think we would be able to make it because of the stress with dealing with the impeding Hurricane Irma. Thankfully that didn't impact out area too much.

The first of our 3 flights to get there. We were all smiles. By the end of the 3rd flight (one of those very small planes where we were sitting in the very back) I had almost lost the contents of my stomach and Kayla and Lucas were also feeling a bit queasy! Fun times. 

Kayla honed in on how difficult this was for my grandfather and she was constantly by his side trying to comfort him.

Even during the service she managed to sit next to him and as you can see she made sure he knew she was there for him. One of my cousins was sitting on the other side of Kayla and at one point she had her hand up on both of their shoulders (I didn't manage to capture that photograph though).

A little scenic spot we drove by when we went back and forth to our hotel; finally had to stop and take a picture. I imagine it looks even more pretty now with the fall colors on the leaves by this time.

A couple of funny stories from Lucas' observations.

My great-grandma lived on one side of my grandparents' house up until she died in 1989. I don't know the occupants of the house now, but that house will always be "my great-grandma's house" to me. I had also been explaining to the kids that their great-grandma was who passed away.

Lucas and I went outside to throw the frisbee and looking at what was my great-grandma's house he said, "They have a barn?" (It kind of does resemble the look of a barn).
I said, "No that's great-grandma's house."
L, "Oh so they lived in separate houses?"


I explained that it was my great-grandma's house and his great-great grandma's house. It was his great-grandpa (whose house we were at) mother's house.

A little while later as we were still outside playing, my great-uncle and his wife came out of my grandfather's house. This is my grandfather's brother - and he lives on the other side of my grandfather's house.

We chatted for a few minutes and then they continued walking and when Lucas turned around he realized they went in that house and asked me, "They live right there?"

Me, "Yes. That's great-grandpa's brother."
L, "So the people in these 3 houses are all related?!"

I laughed and told him yes, they used to, until their mom passed away. It's not a relative in that first house anymore.

I'm glad it all worked out and I'm glad the kids and I were able to be there with my family.

Thursday, October 19, 2017

Sam's Top Secret Journal

A Middle Grade mystery book in which the main character has Down syndrome?

Yes, please!

That's exactly what you'll find in Sam's Top Secret Journal - a 3-book series. (We SpySam's Secret Island and Memorial Day).

Sam, who has Down syndrome, is sometimes "bullied for the differences kids perceive in her." But the main story is how Sam and her brother "embark on their first big adventure...full of fun, suspense, and spying." 

The author (Sean Adelman) has a daughter with Down syndrome and the things Sam does in the books are based on his own daughter's abilities.

I'm not aware of any other fictional book in which the main character has Down syndrome - especially for Middle Grade books, so this is a much-needed book series.

I think Kayla will find this series under the tree this Christmas and it will be fun to read it with her and talking about how Sam also has Down syndrome - a character she can identify with!

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.

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!)