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Born This Way

When I first heard rumors of a television show featuring young adults with Down syndrome, I was curious.  Having worked with this population previously, I wondered if the show would really be “reality” for most of our families.  The first episode aired in 2015 – we were so excited!  I remember learning more and more about each cast member as that first season went on…new names and faces to the public.  I also remember there was much discussion as the show began about the abilities of the cast members – particularly their good speech and articulation – and how that related to the community of people with Down syndrome.  There was much “buzz” about how Down syndrome would be portrayed, and if the general population would even be interested in the lives of seven young adults with Ds.

That first season was, indeed, very well received.  The show, and cast members, grew in popularity, especially in the Ds community.  Cast members were featured at events – from Buddy Walks to fundraisers; black tie photo shoots, to behind the sales table; photo ops and autograph opportunities. Elena, John, Sean, Cristina, Rachel, Steven and Megan became names we were familiar with.   We got to meet all the cast last year at the NDSC conference in Orlando, and expect that many, if not all, of them will be in Sacramento this July.  It seems the show IS a hit.  Ratings were good enough to warrant a second, and now, a third season.  Twitter on Tuesday nights is filled with “typical” people commenting how much they love any particular cast member.  The best thing is reading the comments about how they relate to these young adults and their issues, and what advice they might offer. #morealikethandifferent ☺

Caleb featured in Vintage magazine with cast of Born this Way

Flash forward to last Tuesday night, and the first episode of Season 3.  So exciting!  (Especially at our house, with the latest Vintage New York City Magazine issue “Dreams” and that connection now!)  The show has progressed, in my opinion, and I love the direction they are going.  Early episodes focused more on introductions and lighter issues.  Tuesday’s episode had discussions on healthcare, dating and living situations.  The relationships have grown and evolved.  I love hearing from the parents, who are still quite involved in most cases.  And I love seeing the interactions between all of them, and knowing that just as things in our lives don’t go perfectly, theirs don’t either.  BUT, there are usually many different options as solutions.  The families work through problems, and solve them as a team.  

Rocco new cast member with Down syndrome on A&E
Sean from born this way and Caleb ad NDSS conference

As a parent, and someone still very involved in the Down syndrome/disability community, I’m happy that the general population is learning (sometimes right along with us) about the issues that face our families and loved ones with Ds.  I’ve always been one to “look ahead”, and the show gives us an opportunity to do just that.  We watch with one eye towards the future, and learn lessons.  Some lessons to begin working on now, and some to be tucked away for a bit further down the road.  With the addition of young Rocco (age 3, and adorable!), the show is now also offering that vision to brand new parents.  (I personally think they should add a certain 10-year-old’s point of view, but that’s my opinion.☺)  “Born This Way” is helping to change perceptions and stigmas; giving people vision, hope and a sense of belonging in a broader community…helping to make inclusion in life more of a reality to everyone.  

Follow me on Facebook and Instagram and let me know your thoughts on the show!

Peace,

Karen

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Awareness Raising in Public 2.0

Following up on a post from May, about Down syndrome in public (Awareness/Education), where I talked about our experiences out in public – shopping, playground, you name it.  Sometimes, it can be awkward.  Sometimes, people can be rude, let’s just put it out there.  Staring, pointing, comments, name-calling….it can happen.  Your best defense is to be prepared.  

I’ve hesitated on this post, for a few reasons.  We’ve been fortunate enough to not have this happen too much to us.  Although we have had the staring and comments, I can’t think of any time when someone was flat out rude and mean-spirited; whether it’s my Spidey-sense, avoidance of mean people, or just good luck!  I feel as if this topic is very specific as to the unique circumstances of each situation.  I also feel like this topic could morph into about five other topics, including education, awareness/advocacy, behavior, social-skills, and inclusion. But let’s start with a scenario…

Say it finally happens.  You’re out shopping at Target (who we love for inclusive ads!), and decide to have a snack at the food court.  There’s this teenager, a couple booths down.  He won’t stop staring at your toddler, who happens to have Down syndrome.  He’s about 15.  He keeps staring, and it’s really starting to bother you.  What do you do?  Let’s look at your choices.  

  1. You continue to notice him, but don’t say anything.  You don’t really know what to say, and no one else has noticed, so really, no harm, right?
  2. You glare back.  He sees you, but keeps staring. Eventually, he looks away.
  3. You decide to do something.

As we’ve progressed on this journey, my responses have varied.  When Caleb was little, I’d go with A. In our case, Caleb was usually being loud or inappropriate.  The fact that he had Ds might have been a reason to stare longer, but it was really his behavior that started the ball rolling.  I may have “advanced” to option B, staring back.   I usually won (ie. Stubborn), because he or she ended up looking away, but, really, did I?  Unless it’s just someone being rude, and no hope educating them, really thinking about what I should do and say brought me to option C.  

Before responding, you’ll need to decide how much time you have.  Do you have time to Educate?  To help raise Awareness?  If not, a simple “please stop staring” or “can I help you?” usually works.  But if you have time, take the opportunity to educate this person.  Will it take you out of your comfort zone?  Most likely.  At least for the first few times.  But I promise you, it gets easier.  Size up your audience – is it a teen?  Adult?   In the scenario above, I might ask the young man if he knows someone with Down syndrome, and based on his response (or lack thereof), try to tell him some things about Caleb.

You might have your “Elevator Speech” ready about Ds; include a few facts (maybe your kid’s name, if you up to it, that he or she has Down syndrome, how people with Ds can do most anything with enough guidance and support, how your life is really fairly typical – check out www.ndss.org for more facts).  Think of some things you didn’t know before your child was born, and add those in.  Tell them what all your child participates in, or what interests they have.

I find that if people really don’t want to know anything about Down syndrome, it will be pretty obvious quickly.  But if they do, here’s your chance to really help advocate, in a subtle way; that life with a disability is not so different.  People with disabilities shop at stores, eat at restaurants, enjoy playgrounds…just like typical people.  Opening up the conversation allows people to get a glimpse into our lives, to share our stories, for however brief a time it may be.

Who knows, you might end of changing someone’s perspective as a result!

Peace!

Karen

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Sticks and Stones

“Sticks and Stones can break your bones, but words can never hurt you.”  Honestly…who ever came up with that?  We all learn early on that words can hurt you – just as painfully as a slap on the face sometimes. The truth is, words can sting, and feelings do get hurt when inappropriate ones are used.

When our daughter was younger, I knew a woman who worked with youth regularly. She taught me a lot about intentional language, just by observing her, and the care that she took with her words. She was one of the most deliberate people I had ever met. She had known the power of language; the sting of words misused. I knew her before Caleb was born, but since his birth, have learned firsthand that same power; that same sting. Before he came along, I’m embarrassed to admit that I was guilty of using a few terms that make my skin crawl today.  March 15, 2007, it all changed, and became much more personal.

When you love someone who has challenges, the importance of language, and words, is brought to the forefront, especially if the person you love has intellectual/developmental disabilities. Words like the “R-word” can seem like daggers; they hurt my ears, like nails on a chalkboard. Sure, it’s easy to say there’s nothing meant by it, that it’s all in jest. But when those types of words come to represent people you know and love, it’s not a joke anymore. Telling someone not to take it personally, to “lighten up”, is easy when it’s not your child, your sister, your uncle, your friend.

As Caleb got older, I became aware of not only the hurt that slang terms can cause, but the importance of “people-first language”. People with Down syndrome are just that – people with Down syndrome. They aren’t “downs”. They aren’t Down syndrome kids. Just like people with, say arthritis, aren’t “arthritis people”, they are people who have arthritis. Proper use of people-first language is important. It places the individual before the condition – whatever it may be. Down syndrome is also not a disease, it’s a condition. People don’t suffer from it, they simply have it. Kathie Snow, with Disability is Natural, has a terrific page on this topic.   (Note, some disabilities such as Autism may prefer Identity-First Language).

I’ve learned that even the most “educated” people can use outdated terms and inappropriate language; some might be professionals – doctors/nurses, educators, therapists, etc.  Correcting them is, in my mind, a responsibility to not only my child, but all the other clients they have.  Other people are harder.  Some people have used it for years, even other parents, and I tend to cut them some slack.  Given the fact that I myself use “Down syndrome moms” at times, I think it’s just a shortcut in speech.  I will, however, use “child with Down syndrome” in my reply to them – hoping they get the hint.  Older people; especially older relatives, who grew up in a different era – that’s even harder.  “Downs” typically gets a pass from me, but mongloid (yes, I’ve heard that) or retarded kid (that too) gets a correction from me, ie. “please use person with Down syndrome’, that term isn’t used anymore.  

It’s hard the first few times, if you’re not used to speaking out about things.  It might be your first taste of “advocacy”.  But it does gets easier.  Awareness days, weeks, and months are perfect times to send reminders to friends and family – whether it be a general email on the condition or disability, or a social media post.  October is approaching, and as Down Syndrome Awareness Month, it’s a great time to help remind people that language matters! #peoplefirst #wordsmatter

Peace!

Karen

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Down Syndrome Awareness Month – 2017

Down Syndrome Awareness Month

Buddy Walk bringing Down syndrome awareness

It’s almost here!  Our favorite month, Down Syndrome Awareness Month, happens in October each year.  Bring out the blue and yellow, and the celebrations!  Ever since Caleb was little (well, he was 7 months for his first DS Awareness Month!), I’ve tried different ways to help raise awareness.  Topics and activities have changed throughout the years, as I’ve learned more, but also as our family and extended family have learned too.  

My first attempt at “DS Awareness Month”, along with many others, was social media-based.  Sharing information, stories, fun facts and our own family’s journey have been a few things I’ve done.  Our first year was all about the basics – facts and information about Down syndrome.  There are many sources to pull from, including both the National Down Syndrome Society and National Down Syndrome Congress websites, along with other support groups.  Questions that our family and friends had, like “What IS Down syndrome?”, “Are there different types of Ds?”, “How will it impact Caleb?”, and many more were answered on my Facebook Page.  I tried to include links to other helpful sites, including those mentioned above.  

As we grew – Caleb in age, and us in knowledge – I started to expand the vision a bit by sharing stories of older individuals with Down syndrome and what they were doing.  Accomplishments large and small were celebrated – from heading off to college, to swimming across the English Channel, to helping in various volunteer roles.  Some of the more notable individuals with Ds that are around today were not so visible 10 years ago!  So, some digging was in-order.  Doing just that though, opened my eyes to the many individuals out there, living life and enjoying fellowship, participating in their communities and sharing all their gifts and talents.

A few years later, I began sharing our own family’s story.  How Caleb progressed from those early days of medical appointments and therapies, to the beginning of his school journey.  I included photos and quotes from his teachers and others we knew from our area – church, friends, and even the grocery store 😊

Also big during October are local Buddy Walks, are ours were no exception.  We spent many fall days on the sands of Jacksonville Beach with blue and yellow banners, posters and ribbons, celebrating all those in our local group with Down syndrome, and their families.  These are such great inclusive opportunities for the community too!  Friends, sponsors, volunteers – all get a chance to come out for a day of fun and festivities.

Don’t forget to celebrate at school and/or work if you can!  Blue and yellow cookies or cupcakes are always a hit.  There are so many great t-shirts out there these days too.  Remember to include some information, and even ways that people can get involved by volunteering (or donating!).

In our ten+ years of helping to raise awareness, we’ve been mindful that doing just that also helps to lead to acceptance AND inclusion – all things that we, as parents, should care deeply about.  Remember especially that young people out volunteering or just learning more information about those with Down syndrome will soon be out in the workforce, and might be a voice for more inclusive environments there as well.  If nothing else, sharing information about Down syndrome is fun!  It’s wonderful to see those posts and photos of our beautiful children highlighted throughout the entire month.  

So!  Consider yourself challenged!  Get creative, and Get Ready!  October will be here before we know it! #downsyndromeawareness #dsawarenessmonth #theluckyfew

Peace,

Karen

Karen Prewitt is a Disability advocate
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“Function-ability”

I guess “function-ability” is a word? Not long after Caleb was born, we started getting questions about his “functioning level”.  What level was he? Could he get better? Was he high or low-functioning? As a brand new special needs mama, I had no idea how to answer this. He was a baby! We were doing everything we were supposed to be doing – therapy, tummy time, massage, play dates – but I had no clue how “able” he was or would become or how to even know that.

baby with down syndrome during therapy session

In our fast-paced, get-it-done-now world, the question is: What is your ability level and how quickly can you accomplish a task? I guess in the business world, this is the norm. People expect production, and if you can’t keep up, well too bad… The problem arises when a sense of an individual’s worth, or contribution to society is judged upon these qualities.

I think this is a question almost all SN parents get – whatever the challenge might be.  People are curious about what they don’t know. I think when our kids are still young, we can answer honestly “we just don’t know yet”, and leave it at that. Not all kids with Down syndrome (or any other disability) are the same. They can’t be put into a box labeled “Down syndrome” and move on.  Just like typical kids, there are so many variables that enter into the picture. Prenatal care, other health issues, diet, exercise, therapy, social interactions…the list goes on for environmental and physical issues that can impact children’s growth and development.

Not to mention “Splinter skills” – a term I wasn’t familiar with until Caleb came along and we were participating in Early Intervention. Simply put, this was a means to say he was doing some things better than others – according to any scale or measurement. He wasn’t progressing neatly down the graph, but bouncing here and there, trying to keep us on our toes.

My feeling has always been one that places individuals with Down syndrome along some type of spectrum of abilities, similar to those with Autism (or “typical people”!).  There are kids who will excel in almost any arena – “Her speech is great!” “Her physical ability is tremendous!” She does so wonderfully with social interactions!” But I believe – just like anywhere in society – these individuals are not the norm.

Handsome boy with Down syndrome loves his toothbrush pillow

If I had to guess, I would say Caleb is somewhere in the middle of the graph – with a number of great splinter skills (social! 😊) and physical perhaps. We still struggle with a number of things, and our motto is the same as it’s been from the beginning – “We are working on it!” 😊 So if you are a parent of a young child, take a deep breath when someone asks you this question. They really might just curious, might not know what else to say, or might just be annoying (!). A simple “we don’t know yet” or “we are working on it” will most likely suffice. Just keep in mind all those qualities that can’t be measured – friendship, empathy, compassion, love – are just as important, if not more.

Peace!

Karen

Karen is a wonderful person, mommy, runner and disability advocate.  Make sure you follow her on InstagramFacebook and Twitter.

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. . . .my wonderful mother used to always say – the Golden Ages are not so Golden

I now understand what she was talking about. 

When we were very young, we could hardly wait until we could drive and become independent – life was exciting, full of wonder – curiosity – and the unknown and we lived it in a state of lightheartedness and mirth–we felt wonderful and hoped it would never end.  Then came our 20’s; we had completed our education and felt that we had experienced everything we needed to know.  We were in the best physical condition – belong to a gym, went dancing frequently, were employed, started traveling and had a wide circle of friends. Life was Good! 

Our Social Life was great and through our friendships I met the man with whom I intended to spend the rest of my life.  A person who became my best friend, confidant, and the love of my life.  We got married and had 4 children, Could Life be any Better?

As the children were growing, and in our parental role, we became more involved in their lives – school, scouts, athletics, dancing, music, acting, and, of course, there was our own personal lives.  Can’t forget religious training.  Through all this confusion, I realized that I loved this life we had built together; however, we did look forward to date nights out.  We were proud of our children and were pleased that we also enjoyed them, and they also loved being home with their siblings and parents, and of course bringing all their friends over.  – total Chaos.

The kids are grown now and have moved on in their own lives, had children of their own,  and extended families.  We now have a total of seven Grandchildren.  We thank God for our Blessings.  We are Mom and Dad, Grandma and Grandpa, and once again involved through our grandchildren in activities, school musicals, sports, chauffeuring, and enjoy sharing their experiences.  We also share the past with the kids, great stories and great memories.   We thoroughly like Horsing around, feeding them meals that they attribute to “Grandmas is the Best”, but maybe not so healthy!  Doting on them when they feel under the weather, cause their parents have to work, and giving them credit for their accomplishments – grades, awards, promotions!  That’s what grandparents do when they are retired. Besides, it is very gratifying to be wanted and needed.

In the prime of my Golden Age, I prioritize my health by reading everything about “Diet, Exercise and Keeping Young.”  Some sticks and some may be forgotten or never applied. Of course I share this knowledge with Family and Friends.   I work out regularly, cook healthy foods ( we all are Ova Vegetarians), and harass my husband about making good choices in food when not home with me.  I realize that my calendar is dotted with Doctors Appointments for my spouse and me ( just as it used to be for my parents.)  Mind you, we are truly healthy.  Thank goodness for Medicare!!!

My biggest sorrow is my large circle of friendships has become much smaller.  Though I am very active  in Exercise Group, Card Groups, Bunco, Women’s Group and staying in touch through our Electronic Age with friends of past, I am constantly reminded how FRAGILE LIFE IS – I have lost many friends in the past years, which causes me to be more aware of my own Mortality.  Though I tease that I expect to live till 102, I really fear living without my partner and love of my life.  Not too many nights go by without these thoughts.  And, surprisingly, being as healthy as I am, our conversations amongst friends still include discussion of joint pain, knee replacement, arthritis, blood pressure, heart, stroke, etc.   There is no getting away from “Age.”  As long as my mind is not affected – I will stay happy!  “Who did you say you are???”

I am sure that you can identify with my life.  It has been wonderful and I wouldn’t change one minute of it.   

Keep Walking, Eating Healthy and Brushing your Teeth; there is a correlation of gum and teeth disease to Heart Attacks and Strokes.

Until next time!

Dee

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What 2017 Means to a Person in her Golden Age

As the old year passes and we celebrate the coming of 2017, I thought I would share with you what the Holidays mean to a person in her Golden Age.

As we decorate the house with our lights and respective decorations, we realize that we do it out of habit, even though we know that we don’t have young children oohing and awing at the sites of the lights, stockings, animated toys and such. Yes, we will probably have our family over, but not in the grand style that we used to do, and no longer does the whole family get together at the same time. Each family now has more than one perspective parent to satisfy. We celebrate with different sets of family every other year. It saddens me, because my memories always bring back the past when we were all together, children, extended family, and also my parents. GOOD OLD DAYS!

We go shopping for specific desired gifts, but that, too, is no longer revered as it was when the children were young. It is their parents turn to give them what they wished for – – we just fill in with incidentals and look forward to the grandchildren enjoying what we purchased for them.

We treasure the moments that we can spend with our own children and with the grandchildren, because the time passes and the grandkids are growing up; they will be gone too soon. Our home is no longer filled with the noise of laughter, teasing, and giggles, nor the pleasures of seeing the faces of the children when they view the gifts left Christmas morning (though it used to take us all night sometimes putting together the mechanical toys;) however, we are blessed to be included in the morning festivities by going to our family’s home for brunch and being shown what the grandchildren received. Their excitement and happiness makes our happiness.

I have no complaints, only wonderful memories. My husband and I have our health and the continued love of our family, so we look forward to the adventures we will experience in year 2017. 

By the way, we gave a Toothbrush Pillow to one of my card playing group, a wounded warrior from the Viet Nam era, and he loves and uses his gift.

I wish you and your family blessings for the new year.

Dee Winter

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All about yoocan, the world’s first empowerment site for people with disabilities and their families

We are so excited to be working with the amazing people at Yoocan and be an official Yoocan Community Partner.  They have created a world wide platform through their website, store, and social medial to empower people with disabilities and their families.  We are so excited about this relationship, and can’t wait to share even more with our customers.  Below is just a bit of info on Yoocan, but I urge you to take a look at what they are doing, see links below to their site, store (where you can find a Toothbrush Pillow and so many amazing products for people with disabilities) and social media.

All about yoocan, the world’s first empowerment site for people with disabilities and their families

Yoocan Community Partner

Yoocanfind.com was created in 2016 to be the leading empowerment source in the world for ideas, tips and solutions to make the life of people living with disabilities better and more inclusive. The goal of yoocan is to showcase all the incredible things that people with disabilities are doing.  From skydiving, to running marathons, to becoming Paralympic athletes, this group of people is accomplishing so many incredible things. yoocan’s mission is to focus on what people can do, and not what they can not.

There are currently over 1,000 storytellers from over 100 countries in the yoocan community. The popular Instagram page @yoocandoanything has over 25,000 followers, sharing 1 unique story of a person living with a disability each day. Each story conveys strong emotion and ultimately, the reader is left with a feeling of empowerment. Comments on stories include praise and words of encouragement as well as others who relate and kindly offer advice.

The yoocan community views each and every person that has shared a story or follows their page to be a part of the yoocan family. Check out yoocan today to share your story, get empowered and maybe even make some new friends!

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Therapy Begins

As the creators of the Toothbrush Pillow are finding out (new parents of a little one with Down syndrome), therapy for our children is a world in and of itself. Talking with Lee (co-creator of Toothbrush Pillow) the other day took me back to those first months with Caleb, trying not only to figure out what Down syndrome was, but how it would impact him physically and cognitively. We found out about “Early Intervention” and that story began for us, and him.

Since we didn’t have a prenatal diagnosis, contacting our state’s Early Intervention program took some time. I had to catch my breath, digest all the medical information, and enjoy him for a bit before we dove into the routine of weekly therapies. Since we weren’t assigned a social worker at the hospital, it was information from our local Down Syndrome Association, and in talking with other parents, that clued us in to Early Intervention.  Four months after his birth, the “Early Steps” team visited our home for an evaluation.

Having raised a “typical” child previously, I had no idea what to expect. And since there were 17 years between our two kids, I had a hard time remembering what a baby should even be doing at 4 months of age. It was a fine “check to the gut” when I was informed that he was already behind in his skills, and was indeed a candidate for the Early Steps program. But as hard as it was to hear those words, and see those graphs, I knew deep down that therapy would help him become his best.

Early Intervention is a national program, mandated through IDEA (Part C).  Each state has its own version of it, and its own set of laws that govern their program.  Children ages birth-3 can benefit, and must complete an evaluation to be deemed eligible to participate. In the case of children with Down syndrome, the condition-related delays warrant services in most cases. Down syndrome often manifests in low muscle tone throughout the body, and cognitive delays. Other issues may be present – vision, hearing, cardiac, etc. that will come into play. Each child is different – each will have a unique plan. Once the evaluation team has completed their assessment, this plan can be developed, to work on strengthening those areas that need help, and keep delays to a minimum.

In Caleb’s case, we needed it all! Physical (gross motor), Occupational (fine motor), and Speech/Language were all incorporated into his plan. Additionally, we saw a ITDS (Infant/Toddler Development Specialist) who looked at his overall progression – the areas listed above, as well as his social and emotional growth. Did he recognize his family? Did he interact appropriately? Those and other not-so-evident skills were the objects of Ms. Beverly’s visits.

At last, we had our plan! Our IFSP (Individualized Family Service Plan). was developed, and at just five months, our little guy was headed to see his first therapist (and still a good friend today), Ms. Megan, his Occupational Therapist. PT, ST and ITDS began shortly afterwards, and we were soon in a groove with the six-seven different therapies each week. Some came to our home; some we had to drive to the clinic. Early Intervention is usually designed to be a home-based program, but the availability of therapists might make office visits a necessity.

One of the benefits of being in the Early Intervention program, for us, was the knowledge his therapists shared with David and I. Learning proper positioning for rolling over, sitting, crawling – you name it. The importance of crossing mid-line. How to position the spoon so he learned how to eat correctly. With a typical child, you take that all for-granted. There were many lessons learned, and we loved the support and encouragement these ladies gave us. There were hard days, for sure. Days when I thought he’d never walk or talk. Therapy is work, but it can be fun work with the right help and proper techniques.

Early Intervention therapies are recommended for most children with Down syndrome. Your family’s lifestyle, other children in the home, and schedules will play an important role in how it happens. Your other children can be great “therapists” too, through play and interactions. We certainly found our Early Steps program to be beneficial. Would love to hear how you find your state and local program’s effectiveness.

We “graduated” from Early Intervention when Caleb turned 3, and headed into the school system (another post for another day!). We had a difficult time saying “so long” to the wonderful ladies who helped us in the first part of our journey. Thankfully, we still get a chance to see them every now and then, and it’s fun for them to see his progress.  We will always treasure them!

Look for more information about Early Intervention on the NDSS website or by visiting the Early Childhood Technical Assistance Center.

Peace,

Karen

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Preparing for Employment at an Early Age

Employment – For many people, their jobs are an essential part of their living. Jobs can be interesting, boring or somewhere in between. Jobs can speak about our interests and passions or can just be a means to an end (paycheck). My personal experience with employment has been a grab bag of both passion and necessity, alternating between non-profits (passion) and retail (necessity). BUT, I like to think that everything I’ve done in the past has prepared me for where I am today.

But what about those with disabilities? Statistics aren’t great. An article by Fortune Magazine in 2017, states that “Only 35% of U.S. civilians with disabilities between the ages 18 and 64 had a job in 2015, compared to 76% for people without disabilities”, according to a report from RespectAbility, an advocacy group for Americans with disabilities. Reports from studies done through Special Olympics, for those specifically with intellectual and developmental disabilities are similar, with an approximate employment rate of half the general population. My personal experience working with several organizations and agencies has proven these statistics to be true. Employment can be a tough nut to crack.

So many factors come into place, including preparing the individual for an employment setting, and the opportunity to have a chance at a job. Although impacting vocational opportunities might take a bigger village voice, we as parents can do what we can to help prepare Caleb personally. Whether it was because we were “older” parents with grown children, or my interactions with teens and young adults with IDDs (or both), we decided early on that we would start working with Caleb on a number of things to get him prepared for employment.

As I mentioned in a recent Instagram post, chores and daily activities help set the stage for employment by encouraging independence and “soft skills”. Soft skills can include many things – social appropriateness, communication, personal habits, ability to follow directions, interpersonal skills, teamwork, self-regulation, and more. Getting out and getting engaged in the community can be a great help in developing soft skills. It can be a lot of work on the parent’s end, for sure, but the payoff can be enormous. You can practice these skills at home, at school, with friends.

Another factor that can be so very important is interests! What does your child like to do? What things are he/she interested in? Do they like digging in the dirt? Trains? Cars? Playing with dolls? Legos? IMO, it’s never too early to start noticing those things and start the wheels turning in your mind about employment opportunities. Start thinking and exploring all those fields that might correlate to your child’s interests.

Caleb is ten years old. He’s shown interests in several things already, and our wheels are turning. He loves to help around the house. He’s very task-oriented and will work to see something completed. So how to turn that into employment? I look at perhaps an office job, where he has daily tasks and has a checklist. He also loves to be around people and entertain. Probably more of a hobby, but theater might be an option. He loves cooking! He has a blast in the kitchen, helping to make meals and desserts. He takes direction well and has a strong interest in seeing the finished product. #cookingwithCaleb might be just the thing for him. He loves to be outside in the yard, so perhaps working at a lawn-care service, or somewhere such as Home Depot’s garden department. He loves sports! Although he might not ever be a professional athlete (but then again, who knows!), he might work for one of the many sports teams we have here in Jacksonville, working with equipment or some other aspect of the team’s support system.

As times have changed over the past ten years, there has also been a huge increase in helping people with unique needs get training, skills and knowledge to be better prepared. Caleb’s school has a focus on post-education goals. There are other self-advocacy organizations here in FL to help as well. Florida SANDS (Self-Advocate Network D)  works to help individuals with issues and services. At their recent conference, a new curriculum was presented to help students explore their own likes and interests. The Explore Work Curriculum provides a “chance for people with all kinds of disabilities to think about what kind of work they might like to do and to explore employment options.” Short videos and questionnaires have been developed for young people to think about their interests, what accommodations they might need, and build confidence and self-assurance.

Post-secondary options are increasing dramatically as well. Visit the Think College website to see what’s out there in your area, what might be coming, training’s and resources (and a shout out to Ruby’s Rainbow featured there too!) Entrepreneurial options are increasing as well. Examples like Blake’s Snow ShackJohn’s Crazy Socks and Seanese  are all proof that self-employment might be worth looking at.

Starting young to develop good personal habits and interactions can never be a bad thing. As many of us parents have discovered, some of our kids need a bit longer learning curve to get to the end result. The good news is that options and opportunities are increasing. Helping your child become more independent can help lead to bigger things than just getting the laundry done 😊

Peace,

Karen