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World Down Syndrome Day 2018 – 3/21

In less than one week, World Down Syndrome Day will be celebrated!  March 21 (3.21) is significant as it represents the third copy of the 21st chromosome – Trisomy 21, most commonly known as Down syndrome. This will be the 13th year since its inception in 2005, when the French Association for Research on Trisomy 21 (AFRT) chose this symbolic date to hold activities that would help raise awareness of people with Down syndrome.  Along with the European Down Syndrome Association (EDSA), and Down Syndrome International (DSI), the date was adopted to support awareness and “well-being” events for people with Down syndrome. It took a few years before the United Nations came on board (in 2012) and declared March 21st “World Down Syndrome Day”.  

Since that time, awareness events and celebrations surrounding this date have grown significantly. You might not be aware, but there is actually a website dedicated to this event!  was created, and is maintained, by the Down Syndrome International group. It shares the history of WDSD, global events, merchandise, and even tips on fundraising. Take a peek to see how other countries celebrate – there are some interesting events! Everything from tea with the Parliament (Australia) to movies (Columbia) to art galleries (Luxembourg) to cooking demonstrations (Macedonia). Here in the States, many Down Syndrome support groups have parties, walks or other events surrounding the date, and encourage their families to share stories, and advocate for their loved ones (or themselves).  More events seem to be added each year.

But what to do if you can’t find something to do close by your location? There are still plenty of ways to party! Check social media for businesses that put out t-shirts, hats or other apparel (although time is limited now). Crazy socks are a biggie! Wearing colorful and/or mis-matched socks has somehow come to represent this day – perhaps to recognize how unique our loved ones are who wear their extra chromosome proudly. Random acts of kindness have also developed into a way to celebrate, first begun by the International Down Syndrome Coalition. Some families print up cards to hand out as they do good deeds, letting recipients know about WDSD, and post photos of their activities on social media. Participants can be family members, friends, or the individual with Down syndrome themselves.

The National Down Syndrome Society (NDSS) is once again hosting their “Racing for 3.21”, a virtual event, which encourages participants & advocates to “move for 3.21 miles on March 21 to celebrate World Down Syndrome Day and raise awareness for the Down syndrome community.” See their website to register.  The National Down Syndrome Congress (NDSC) is featuring different quotes and photos each day, leading up to the 21st.

Another way to raise awareness among friends, families, co-workers or schools is to bring in blue and yellow treats (the colors that represent Ds). Share a fun fact about your family member on a slip of paper tied to a wrapped baked goods. Wear blue and yellow shirts, socks, ties, or bows that day. Let your local newspaper or television station know about the day, and how you plan to celebrate. Share your story! Post three facts about Down syndrome to your followers, friends and fans. (Some common facts: there are three types of Down syndrome, one in every 700 babies in the US is born with Ds, Ds occurs in all nationalities and economic levels.)

Most of all, have fun! The goal of WDSD is to help raise awareness, advocate and celebrate. Any way you can manage to do one, two or all three, helps to bring Down syndrome into the conversation. March 21st is quickly approaching! Get your plan together, get out there and have fun!

We’d love to hear how YOU plan to celebrate. Please let us know!

Peace,

Karen

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School Communication and IEPs

It’s that time of year again…IEP time. Lord knows we had NO CLUE what this term meant eleven years ago. We learned…as IFSPs morphed into IEPs when Caleb turned three. Word on the street wasn’t good, and we dreaded that first go-round. So many parents of kids with special needs hear “IEP” and shudder. For most of them, it’s not a pleasant experience. Sitting in a room filled with professionals telling you how delayed your child is doesn’t make for a great day, or week.

Thankfully, we’ve managed to have positive IEP experiences. Whether it’s because he had great teachers and therapists to help advocate for us or because we were prepared (with drafts), I can’t think of one bad IEP day. We’re lucky, I know. I hear from so many parents that steel themselves for this day. I’ve seen the glasses – coffee mug for “IEP Preparation” and wine glass for “IEP Recovery”. Parents who bring treats to their student’s IEPs in hopes that it might go smoother. Although I’m sure the team appreciates getting fed, having a productive session has more to do with your preparation than it does having donuts on hand.  I posted a couple of blogs last year with some helpful tips.  IEP Prep part 1 and IEP Prep part 2

Having a Vision and Mission statement can help. Having an Advocate can help. Getting up to speed on Wrightslaw can help. All these things are great IEP tools in your kit, but we’ve found that nothing works better than to keep communication going throughout the year with your child’s teachers and therapists. SO IMPORTANT.

We try to meet with Caleb’s teachers right after school begins, just to make sure everyone is on the same page. A lot can happen during the summer! Time for growth and working on independence skills. Traveling and camps can be opportunities for social and communication growth. August is a good time to look over the IEP goals that were set in the spring to make everyone is on the same page and see if anything needs “tweaking”.

Caleb’s school does a good job with daily communication reports. He gets grades for each class and comments with anything that might need explanation. On the flip side of that form is a graph with three of his IEP goals that he/they are focusing on in particular, with grades on those as well.  We use an app (Remind) for texting back and forth with any questions.

Every nine weeks with his progress report, we set a meeting up to review the report, discuss anything new (or old), and see how we can keep a good school/home flow going. That consistency is important! Things we might talk about include behavior (yes!), communication, academics, social skills – just about anything. We have a tutor during the week too, so looping her in on all this communication is important too. She’s updated on any changes to his IEP, new strategies, and such. #ittakesavillage

Flash forward to the spring, and yet another IEP rolls around. BUT! We certainly know that at any time during the year, we can modify/amend his IEP if goals are consistently being met, or for another reason. His draft IEP comes about a week ahead of time – enough time for David and me to take a look and talk about goals for him that we’d like to see. It’s also a good time for the two of us to talk about any other goals we might have outside of school– socially, chores, life skills, etc.

Caleb is eleven now and entering Intermediate in the fall (middle school). Sooner than later, our hope is that he will be a participating member of the IEP team, sharing his own input and some goals. This is called “Self-Determination”, and can help him to work towards greater independence, improve his critical thinking skills and help him to look ahead too.  We are new to this part of the journey, but thankful for mentors and advocates in our lives who can share their knowledge with us for these next steps.

Remember that IEPs are a big piece of the puzzle, but so many other factors can come into play as well. Make sure you are using all your assets to make a solid plan for your student.

Peace,

Karen

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Letting Go…a little bit

Nervous Nelly. That’s a term our mom used to use when we were kids. I’m not sure anyone actually still uses it, but it describes me perfectly earlier this week.

I like to think we encourage Caleb to do things outside his comfort zone – new experiences and new places – so eventually he’ll feel more comfortable in these types of situations. But this week, the tables were turned, and it was my turn to put on my big girl pants.

Caleb’s done a lot of camps. He loves camp! So, we signed him up for several them this summer. Mostly familiar places, but a new one too. An inclusive “sports camp” at a local university. Our school had sent out information about it during the spring and we thought we’d give it a try. We missed the Parent Meeting night because we were traveling, and I totally forgot about it – until Sunday night. I scoured the information packet to see about details and contact info. We packed up Monday morning and headed to camp, thinking we’d see some familiar faces from school.

There were a LOT of kids. And the camp has been going on all summer, so most of the kids knew each other. Not us. There was no one we knew. No familiar faces. Caleb seemed fine, he was ready for a fun day at camp! I, on the other hand, was a nervous wreck. All the groups were based on age, so off he went with the other Jaguars, the shortest of the bunch. I explained to his counselor that this was his first time at camp without any of his buddies. “He’ll be fine!”, he assured me, and I wanted to believe him.

Now, Caleb is not a “runner” but he will wander. If something catches his eye, he’ll just kinda slip away. The campus is huge. Lots of new things to explore and places to get lost. And did I mention that we didn’t know anyone? I sent up a thousand prayers as David and I walked back to the car. As we drove home, I wondered if we should just go back and bring him home. I admit it. I even went back during lunchtime, just to check on him.

He was fine, happily eating lunch with everyone else. His counselor said he was having a great day, and even tagged some kids out in dodgeball (😁😁). He’s crushing on one of the female college student counselors already, and the girls in the group have kicked into mother-hen mode. But he’s playing with the guys too – which makes my momma heart happy. It was tough to get him to turn around to say goodbye when I left, he was deep into video games with the other guys.

So, this week has been a learning experience for this momma. Caleb is getting older now, and there will be (and already are!) times when I need to start trusting him. It’s SO hard, guys! So hard. And I know I have to do it, for his sake. To let him try and succeed. To let him try and fail and learn some lessons (always safety first though). To let him start spreading his wings – maybe just a bit 😊 As much as I might miss my little boy, I’m proud of the big kid he’s becoming. And as many lessons as he learns, I’m learning right along with him.

Peace!

Karen

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Kicking off DSAM

Kicking off Down syndrome Awareness Month 2018 “DSAM” in a completely different way than I ever have before. So many thoughts about where our lives are now as a result of Down syndrome, and where they might be headed. 

I read a post from a friend the other day saying that she knew another mom who would not be celebrating DSAM this year. She couldn’t celebrate something that had brought some many other issues along with it. And it’s true. Down syndrome can bring a whole host of related issues with it. Just here on Instagram in the last few weeks, there have been parents watching as their children head off to heart surgery, eye surgery, tonsil surgery or others. Friends whose children have been dual-diagnosed with autism, ADHD, even leukemia. Parents dealing with behaviors, therapies, insurance companies or school systems. Older children who find that “cliff” after graduation, and deal with lack of employment or transportation or decent living situations. It’s a hard road at times, and these are many reasons parents fear Down syndrome. These are all real issues and cannot be rainbowed-and-sunshined away.



But here’s the thing. This is what makes me, as a parent and advocate, get up every morning and do what I do. And so many others as well. Because even though these battles don’t need to be fought if people with Down syndrome didn’t exist (ask Iceland), how much less would our society benefit from having them included? What have we, as a community, been shouting for the past year since that news came out that #lifeisbetterwithyou ? How do you measure the intangibles that people with IDDs bring to our living?



This is why our family celebrates DSAM and always will. Because life IS better with Caleb in it. I can’t imagine how much less our world would be without the gifts that he not only possesses, but shares so freely with all he encounters. The challenges, and celebrations, of Down syndrome are real. We choose to see that half-full glass. Happy DSAM!



Peace, 

Karen

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Promises Made

In our church service last week, we had a baptism. A brand new beautiful baby girl whose mother grew up in our church family. Our congregation made a promise that day, to support this young family as their child grows, to encourage this family’s church journey, and to help educate this little one in the faith. It’s a promise that’s made to every child baptized in our church, including Caleb, a little over eleven years ago.



It’s a promise that’s been kept too. Our church family and leadership (and David and I) have worked to include Caleb in all aspects of church life. It’s not always easy, I know that. Church programs depend heavily on lay people for their programs. Men, women and sometimes teens who might not know how to help an individual with limited verbal skills or capacity for understanding some of the concepts of religion. We are grateful for these folks in our lives, who are living out their promise – not only to Caleb, but to all the children, some with other ‘unique needs’ in our church. I know that it’s not the case for many with differences who struggle to find acceptance in church.



A prominent organization posted the other day that they hoped their event, involving churches and people with special needs, would be a starting point for people – for churches – to realize that faith is for all people. That acceptance, inclusion and love need to be more than one night’s experience. “I hope so”, I wrote, “Church should a place, of all places, to find welcoming and caring people. Many people with ‘differences’ still find themselves on the fringe – unable to connect or find acceptance. I hope and pray these participating churches use this event as the start of their ministry to people with unique abilities, or to grow theirs if they have one.”



And yet, many report that they are unable to find a welcoming situation, and some even, exclusion. One study reports that almost 1/3 of special needs families said “they had left at least one church because their child was not included or welcomed.” Additionally, they had kept their child from participating in a religious activity because support was not provided, or they had been expected to stay with their child during the activity. Families desire that churches become more knowledgeable about disability; more training and education to support the growing population of those with special needs. *

Which left me with a Pandora’s box full of questions.
•What does it really take to get a special needs ministry off the ground?
•Do churches really need to have a separate ministry program for people with extra challenges? Why can’t everyone just worship together?
•Who takes the lead? The parents? The church leaders? The congregation as a whole?
These are all questions that I’ve prayed over in our 11+ year journey. I’m sure circumstances are different for each church, for each person. Some might need just a few accommodations to be included; some might need more. The point is, churches need to DO THEM.

I imagine that our faith denomination (Presbyterian) is not the only one that asks its members to participate in the bringing up of children and youth. To make promises. Promises on a Sunday morning that are meant to have a far-reaching effects. Promises that need to be kept regardless of ability level (or economic or status level for that matter). Promises of support and encouragement and education. And most of all, promises of love…in faith.

Peace,

Karen

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Occupational Therapy

Amputees 

Brushing your teeth is one of those things you never think about until it’s difficult to do, like after the loss of use of an arm or hand. The stability provided by the Toothbrush Pillow is one of those simple things that can make all the difference. Pride and independence remain intact.

 Parkinson’s

The loss of motor skills brought on by Parkinson’s, Arthritis, or Stroke changes almost all elements of life. Routine tasks, like brushing your teeth, become difficult. The stability provided by the Toothbrush Pillow is one of those simple things that help restore the pride of accomplishment and independence.