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About Karen – My Journey for Disability Awarness and Advocacy

Hi there! I’m Karen, happily married, mom to two, and step-mom to two. With kids ranging in age from 9-38, and one with special needs, we’ve seen most, if not all, of it. Caleb, our youngest, was born with Down syndrome. We were surprised, but soon decided that working on awareness and advocacy was the road we were headed on. We jumped in, and never looked back. Almost 10 years along in our journey now, and we’ve made new friends, met some amazing people, and have a whole different respect for the term “ability”. A bit about me…. I’m originally from near Chicago (DeKalb, for those who may know it). Graduated from NIU a while ago(!), decided I really did hate snow and cold, packed up my car and moved to FL, where I’ve been happy in the sunshine for almost 30 years now. I’m a lifelong runner, and love to see people with all abilities involved in sports and fitness. We love to travel, and hope to get some miles in this year. I’m a conference-junkie. Love learning new ideas and strategies to help PWD live life to the fullest. I’m hoping to share a bit of disability-related information that I’ve learned along the way with the folks who follow The Toothbrush Pillow (which Caleb uses and loves!) and help a couple great causes as well. Use DISCOUNT CODE: CALEB
Save 10% off your purchase and Toothbrush Pillow will donate 10% to Reece’s Rainbow
Upcoming topics include:-Tackling the IEP -tapping into local resources -medical information and resources-school-related topics -hygiene and self-care skills -helping your child be independent 
Would love to hear what topics you might be interested in too, if not list above.

❤

Karen

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Hygiene – Keeping Kids Clean & Brushing Teeth!

Keeping clean is tough enough for any kid.  Add special needs to the mix, and it can be quite challenging.  Whether your child is two or twelve, keeping up with good hygiene practices is important.  We have also found that practicing those independent skills while they’re little can be a huge help in the long run.  It may mean sacrificing some time & energy now, but the payoff can be significant.

Bathroom tasks can be made easier with the help of visual schedules.  The bathroom walls might not be quite as pretty as usual, but visual cues are helpful, and, for most of our kids, make more sense than verbal commands.  When Caleb was small, we started with potty training and tooth brushing.  We made 4-5 step visual schedules and placed them appropriately.  We even made “personal story books” to reinforce at bedtime (or anytime really). 

If needed, we began with hand-over-hand to get those muscles trained in the proper technique.  We graduated to mom or dad demonstrating the task and had Caleb follow afterward.  It takes time!  Patience is so important, in so many things we do with special needs kids.  Once they’ve got a few skills mastered, try another!  We added showering about age 6.  It was slow-going, but happy to say we’ve got an independent shower-er now.  ☺

Personal care skills are important for everyone.  Make sure you let your children have opportunities to try and build them up for success with tools like visual supports and personal stories.

Here is Caleb using his Toothbrush Pillow! 

Peace,Karen

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Benefits of Therapeutic Horseriding

Many children, youth and adults with disabilities can benefit from therapeutic horseback riding and/or hippotherapy – both different in their own ways.   Our focus today is on therapeutic horseriding, which our son has done for almost 7 years now.

Caleb - Horse Back Riding Down Syndrome Therapy

Therapeutic riding instructors work to partner the needs of each individual participant with specially trained horses chosen for their calm temperament.  Programs are customized around the needs of each rider and include a variety of activities, exercises, and games on horseback.  Riders work to strengthen muscles, improve balance and coordination, learn to follow instructions, increase the ability to focus, and improve communication skills.  The goal is to provide an emotionally and physically enriching experience for the riders, as well as teach them how to ride a horse!

Equestrian therapy is particularly applied to patients with ADD, anxiety, autism, dementia, delay in mental development, down syndrome and other genetic syndromes, depression, trauma and brain injuries, behavior and abuse issues and other mental health issues

Developing emotional connections to the horses provides an additional therapeutic dimension to the program.  Developing relationships with the volunteers and instructors can help as well. In addition to these intangible benefits, therapeutic riding can also provide:

  1. Improved Gross Motor skills-using the large muscles of the body to guide the horse.
  2. Improved Fine Motor skills-using smaller muscles to direct the reins, using hands to do any skill while on the horse, helping tack and dress the horse, etc.
  3. Increased Core Strength-using those tummy muscles to sit up straight and help maintain balance!
  4. Increase Communication skills-working with not only the horse-giving directions and other subtle cues, but communicating with the volunteers, instructors, and any other participants in the lesson.
  5. Increase Self-Confidence-sitting atop a large animal takes some guts!  If you’ve never ridden, take a lesson and see for yourself.  Not only getting up the nerve to ride a horse, but actually taking command to guide these beautiful animals…it’s very exciting for most participants.
special needs motor skills and outdoor therapy

If you might be interested in therapeutic riding for your child, look for one in your area.  Local disability organizations might have a list, or just google “therapeutic horseriding” and see what comes up.  I know it’s been a huge benefit to Caleb, and he continues to ride after seven years!

Peace,Karen

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IEP Preparation – Part 1

Spring, to parents of kids with Special Needs means many things.  Awareness days, and months.  Opportunities to get your busy little one outside in the fresh air.  Spring Break, travel, family, holidays.  But it also means “IEP season” is coming.

If you have a child with special needs, most likely your student has an IEP.  Many children transition from Early Intervention programs at age 3, and move from an IFSP (Individualized Family Service Plan) to an IEP (Individualized Education Plan).  This plan contains details on goals written specifically for the student, and measures to track progress.  It can be a difficult document to decipher, and it’s always helpful to have a second set of eyes to help parents look it over.  Input from therapists, teachers and anyone who interacts with the student should be included somehow.  These professionals help to make up the student’s “IEP team”, and all should be assisting the parents in navigating the process.  

Ideally, the student’s IEP should be reviewed on a regular basis, but no less that once a year.  Progress reports can be helpful in keeping the goals of the IEP at the forefront, as well as keeping the lines of communication open between teachers, therapists, and parents.  

When Caleb was entering the school system, we were, along with many parents, concerned about the process, and unsure of the role of the IEP.  What should be his goals?  What were his strengths, and what did he need help with?  What type of learning situation would work best for him?  Everything was brand new for us.  We relied on input from his team to guide us.  

boy with down syndrome starting school - IEP

We had friends with older students who suggested we write a Vision and Mission Statement for Caleb, to help steer us in the right direction.  This document is now almost seven years old, and we still refer to it!  We were able to put down on paper the things that, as parents, were important to us.  It’s been tweaked along the years, but the overall general goals are still intact – to love the Lord, to be a productive member of society, and to have a rich, full life with friends and loved ones.   The same really, as we wanted for our “typical” daughter.  The only difference is really the road to get there.  

To be continued…

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IEP Preparation – Part 2

In part 1, I covered the beginning of our IEP journey. Having a Vision and Mission statement for our son was a huge help to keep us focused on long-range plans. Having a supportive team (teachers, therapists, other family) is also helpful. What else is needed?  

special needs IEP Down Syndrome Advocate

As parents of a student with a disability, you will find yourselves as your child’s advocate in many situations, including school. Having some ammunition in your back pocket never hurts. Take some time to learn about your child’s educational rights. IDEA, FAPE, LRE, RTI….these are all terms to be familiar with.  Know that your student is entitled to the Least Restrictive Environment (LRE), meaning to start with the best scenario of inclusion. That will look different for each student of course, but many students are automatically placed in the Exceptional Student Education (ESE) or “Self-Contained” classroom, without a trial run at the General Education classroom. Make sure to visit the Wrightslaw website.  Its full of great information, online courses, and materials to order.

Other suggestions to get you started  – consider finding an advocate to help you along the way, at least in the beginning. Look to local, state, even national organizations for suggestions. Know your student’s strengths and area that need improvement.  Talk with your IEP Team for suggestions.  Learn what well-written goals should look like. Ask for a draft IEP to review with your Team before the official meeting. Make sure to document correspondence.

When it comes time for the IEP meeting, follow the advice from the great book from Wrightslaw, “Emotions to Advocacy”.  Take off your parent hat.  Put on your advocate hat. Keep in mind that what you will be discussing is the best-case scenario for this student (even though it is your child).  Be calm and rational.  Raised voices and hot tempers don’t do much to advance your case.  Take your time with each page.  Ask questions if you don’t recognize acronyms or terms.  Make sure you agree with everything before you sign off on the document.  Last, but not least – remember that you can call for an IEP meeting anytime during the year!  If you student is hitting goals early, change them.  Keep that expectation bar high!

Wrightslaw also has a course to provide training for those interested in special education advocacy.  Their website says this course is for experienced advocates, law students, new attorney’s or any attorney who is new to special education law.  Here is the application and details.

having fun at school thanks to a parent advocate and successful IEP

It may seem like a lot to begin with, but it will become more familiar as time goes by. Keep in mind that your student will be in school for many years. Knowing their rights will help both you and them.

Peace.

Karen

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World Down Syndrome Day

Ah, March.  March didn’t mean a lot to us 10 years ago.  We were anxiously awaiting the birth of our “bonus baby” in April, and busy getting his room ready for the big arrival.  Little did we know that he had a surprise waiting for us, and that March would come to mean a LOT to us in coming years.

Boy with Down Syndrome for World Down Syndrome Day March 21

Caleb arrived 3 weeks early, on the Ides of March (the 15th), 2007.  We found out the next day that our family was one of “The Lucky Ones”, as families who have children with Down syndrome have been nicknamed in recent years.  The year after his birth, we started to hear talk of a celebration of sorts on March 21st.  Something about 3/21, and its significance in the world of Down syndrome advocacy groups.

Apparently, in 2005, the French Association for Research on Trisomy 21 (AFRT) decided to choose this symbolic date to hold activities that would help raise awareness of people with Ds.  Along with the European Down Syndrome Association (EDSA), and Down Syndrome International (DSI), this date was adopted to support awareness and “well-being” events for people with Down syndrome.  It took a number of years before the United Nations came on board (2011), to declare March 21st “World Down Syndrome Day”.  

Since that time, awareness events and celebrations surrounding this date have grown significantly.  Most Down Syndrome support groups have parties, and encourage their families to share stories, and advocate for their loved ones (or themselves).  Some families wear crazy socks, some wear custom t-shirts.  Some hold parties, and some do kind deeds in the name of their family member (or themselves, if they happen to have Down syndrome). Blue and yellow cookies and cupcakes are shared at work and school, worn on bracelets and hair bows, even shoelaces.  Walks and runs are held, advocacy days as well. If you are interested in participating in an event to celebrate WDSD2017, please check the website of a local Down syndrome association, or even that of a national organization.  The National Down Syndrome Society (NDSS) is hosting their inaugural 2017 “Racing for 3.21” that day, 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.”  

March 21st, World Down Syndrome Day, is a wonderful time to enjoy our “second family” – those who are also in “the Club” – and share with others that there are certainly many reasons to celebrate Down syndrome, and all it brings to our lives. We’ll be wearing out blue and yellow that day-hope you will be too!  #theluckyfew #worlddownsyndromeday #wdsd2017

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Facts about Down syndrome for WDSD:

World Down Syndrome Day is less than a week away!  It’s amazing to me to see how this day of celebration has grown and evolved over the past few years.  And heartwarming to see that people can actually celebrate it, instead of being ashamed of it. When we started on this journey 10 years ago this week, I knew very little about Down syndrome.  I knew a couple front-service clerks at Publix with Ds, but had no idea what their lives were like.  Since that time, I’ve learned so much, and keep learning new things all the time.  

One of the first things I learned was that Down syndrome can happen to anyone.  Rich or poor; black, white or yellow; educated or not; faith-oriented or not…Down syndrome is all-inclusive in its selection process.  

Another basic fact is that there is not just one type of Down syndrome.  There are actually three!   Trisomy 21 is the most common, when prior to, or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate.  As the embryo develops, the extra chromosome is replicated in every cell of the body.  Trisomy 21 accounts for 95% of cases of Ds.  Translocation Ds occurs when the total number of chromosomes in the cells remains 46; but an additional full or partial copy of chromosome 21 attaches to another chromosome.  The presence of the extra full or partial chromosome 21 causes the characteristics of Down syndrome.  Translocation occurs in about 4% of people with Ds.  Mosaic Ds is the final type, accounting for just 1% of people with Ds.  This occurs when there are some cells with 47 chromosomes, and some with the “typical” 46.  It can be important to know which type the individual has, and so Caleb was tested at birth with a “Karyotype” – a test to “identify and evaluate the size, shape, and number of chromosomes in a sample of body cells”, and was determined to have Trisomy 21.  

Whatever type it is, Down syndrome affects individuals globally – increased chance of having associated conditions (heart, intestinal, hearing, optical, etc.)  Parents are encouraged to use a pediatrician well-versed in Down syndrome, in order to know what to look for, and be able to refer to specialists as needed.  Cognitive function is considered below average on standard IQ tests.  But those of us who know people with Ds know that they have many other gifts that tests don’t show!  Physical skill development is usually affected (motor-planning), and so babies and children are encouraged to see therapist to work on skill progression.  When he was little, Caleb saw four different therapists, named below.

  1. Physical Therapist-working to help him with gross motor development.  Beginning with lifting his head, to rolling over, sitting up, crawling…and finally (3 year later!) WALKING!  Climbing, jumping, and running are also skills that PTs can help with.
  2. Occupational Therapist-working to help with fine motor skills.  Pushing, pulling, holding utensils, eating, writing, tying shoes, typing, hand strength development, even sign language, etc. are all under the OT umbrella.
  3. Speech Therapist-this is typically the “biggie” for our kids.  Speech is hard.  It requires lots of motor planning, and some knowledge of what words mean.  Kids with Ds typically have smaller mouths, and can have larger tongues, making it harder all the way around to produce good, clear speech.  
  4. Infant/Toddler Development Specialist (ITDS)-this person oversaw all of the above for Caleb, as well as social/emotional development.  How was he interacting with peers?  Was he showing emotion?  Could he read cues for engaging with people?  

How common is Ds?  Some statistics quote 1/700 live births are individuals with Down syndrome, others say that is overstated, based on new prenatal testing.  Regarding of the exact numbers, Down syndrome is the most common chromosomal condition.  According to studies by Dr. Brian Skotko et al, there were approximately 206,000 people with the condition in the States in 2010.  Prenatal testing has proven to be more accurate and can be done much earlier in the pregnancy than previous, which has led to, unfortunately, more terminations.  Getting valid, up-to-date information about a life with Down syndrome to doctors and staff is critical.  

Why is it called “Down syndrome”?  The name happened as a result of a physician, Dr. John Langdon Down, who was actually the first person to realize that there was a group of people who had similar features and characteristics.  Features such as: a smaller head, flattened face, short neck, up-slanted eyes, low-set ears, enlarged tongue and lips, and sloping underchin were among those included in his descriptions.  In the mid-1800’s, he had worked in an institution where a number of these individuals resided.  As his papers were published, and noticed, the medical world began to use the term “Down” syndrome to describe these folks, and the name stuck.  As an aside, I love the article Mark Leach has written in recent years, bemoaning the fact that his name was Down, and not Amazing ☺

What’s the life expectancy of someone with Ds?  When I was in college (way back in the 1980’s), people with Down syndrome were not expected to live much past their mid-20’s. This was prior to advancements in medical treatment, especially in the treatment of heart conditions that up to 50% of people with Ds can have (or more).  Thankfully, medicine has progressed, and now, individuals are living into their 50s, 60s, and even older.  I posted just last month the oldest man on record with Down syndrome celebrated his 77th birthday!

These facts are just the tip of the iceberg, as far as information about Down syndrome.  There are many terrific resources online to refer to. Both NDSS and NDSC have pages dedicated to information about the condition.  Local support groups often have educational sessions, and staff on-hand to help with questions.  Facebook also has a number of great groups with topics related to Down syndrome.  I hope you might have learned something new today.  Please celebrate with us on March 21st the fact that people with Down syndrome are, indeed, AMAZING.  We don’t need a doctor to figure that out for us.  

Peace,

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Advocacy!

On my personal Instagram Page, I recently shared a bit about getting involved in Advocacy. It’s not as scary as it seems!  Most days, I’m happy to consider educating others about Down syndrome in the grocery store, or in our local schools, or tweeting about issues relating to disability, as “Advocacy”. But at times, larger topics call for larger measures. The Buddy Walk on Washington (where our family is headed for next week) is one of those times. Families and advocates from across the county will gather in Washington DC for a day on the Hill. A chance to meet face-to-face with elected officials, and let them know the issues that are top on our list. This year, those issues will include proposed improvements to ABLE accounts, the DS Congressional Task Force, and Education issues. 

Advocate for Down Syndrome rights and inclusion and events for Down Syndrome

If you’re like I was at the beginning of our journey with Down Syndrome/Disability, getting involved in the political arena can be a bit intimidating. The easiest way to start though, is at the beginning. Find out who your legislators are by visiting the National Down Syndrome Society website and head to the Advocacy Alert page.  It’s easy to plug in your zip code, and let NDSS do the rest. In a second, you’ll have a list of local, state and national representatives. 

Next, take a couple minutes to familiarize yourself with the issues. On that same web page, NDSS lists, in chronological order, their most recent action alerts – topics that are important in particular to the Ds community. 

Then, write up a profile on your child and your family. What issues do you have to face daily?  What’s life like for you and for your child? What can they help with to make the road a bit smoother? Include a photo or two. If you get a chance, visit them in their home office during legislative breaks. Establish relationships (don’t forget those staffers too!). 

Advocating for himself

After you get your feet wet, you’ll find it’s not as difficult as you imagined. You might even be interested enough to sign up for your state’s Partners in Policy-making class, a six-month training on almost every disability topic there is! I’m a 2015 Florida PIP grad, and still have contact with my classmates today. 

Bottom-line is that parenting a child with a disability can sometimes require you to step out of your comfort zone, to do the best for your child. If you take some time to educate yourself and prepare, that first step won’t be quite so intimidating after all. 

Peace,

Karen

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Welcome to Holland

Chances are, if you have a child with a disability, you’ve had a chance to read Welcome to Holland.  Written by fellow parent Emily Perl Kingsley, she describes the shock of expecting one scenario, only to find that the flight plan has changed dramatically.  As a parent of a child with a congenital disability, it’s very similar.  You find out you are pregnant, plan to have a “typical” child, and discover you’re headed in another direction.  Maybe much different, maybe not so much.  Different, but not less.  Holland is beautiful in its own right.  But if you had planned on Italy, you might be in for a surprise.  The key is handling the news.  It’s hard news, no doubt.  Not many people plan to have a child with special needs.  Special needs adoption is different, yes.  But otherwise, there is a period of grief, of loss. We had it.  There’s no shame in it.  It’s different and unexpected.  Our grief wasn’t long for us.  I think being older parents, and having raised children who were adults, the news wasn’t so tragic.  We changed our flight plan pretty quickly, and can recommend some tips for new parents.

dad holding his son that was recently born with Down syndrome

Did you get the part where the airline attendant recommends putting your own mask on first, during the pre-flight instruction?  They’re right.  You’ll need to make your own health and well-being a priority.  If you can’t function, you won’t be as efficient and effective to help your child with their needs.  It’s hard to do, I know.  It requires planning and effort.  Teamwork from your partner, parents, family members, or community support.  It doesn’t take much time, but it is important to get out and get a breath.  Go for a walk, jog, or bike ride. Clear your head, and move your body.  Make sure you are eating good foods.  It will not only help you stay fit, but will help you stay sane ☺  

Do some research about your new location.  If you planned on Italy, you’ll need to pick up a guidebook for Holland.  Learn the new sights, and experiences.  Get to know the locals.  In other words, do a bit of research about your child’s disability. It’s not hard, with all the information on the internet these days.  Be careful to find trusted sources.  Search for experienced parents, online groups, local/state/national support groups, even people who were on that flight to Italy the same time as you were, and now find themselves in Holland too.  They are part of your “tribe” now.  They can help you discover all the new sights in Holland, and can even help you appreciate them more.

Don’t remain a tourist.  Get to know other supports outside of the tribe.  Meet the locals, the general population, and make sure they meet you…and your child.  Having supports, getting involved in the community, is critical.  You will meet people involved in education, politics, healthcare, and more.  Awareness of your child, and your child’s disability, is an important first step towards acceptance, and even inclusion.  People are used to what they are used to.  If you don’t introduce them to something unfamiliar, they won’t seek it out.  Step out of your comfort zone, and get involved.  As I told a friend one time, “You have to share, to help them to care.”

sleeping baby

Which leads me to my last point.  You don’t need to stay in Holland!  Once you have your base of support, look to other places to visit!  Start dreaming of Italy again, and how you can make it work.  Dream of all the things your child can do, be, and accomplish.  Find ways to make it happen.  Whether your dream is an inclusive school setting, sport and recreation, friendships, independent skills, employment, even living options down the line, figure out your travel plans to make it happen.  With support, guidance, faith and trust, you can travel almost anywhere you want to these days.  Things are changing for parents and individuals with disabilities, and expectations look different.  Our world is big, and small, at the same time. Make sure you and your child are a part of it.

Caleb going on an adventure - don't let any disability hold you back

Peace,

Karen

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Down syndrome in public (Awareness/Education)

So…before we had Caleb, we didn’t know many people with Down syndrome (Ds).  We knew some baggers who worked at Publix, and a couple distant family members, but no real personal contact.  We didn’t know what life was like with almost any disability, much less Down syndrome.  We used inappropriate terms (that’s another post!)  ☹  So when we had Caleb, and had to dive into the world of “disability”, some things were a bit awkward.  

baby with Down syndrome therapy

The first being our birth announcement.  Should we “announce” it?  This was 10 years ago, folks, and still not a lot of public awareness about Ds.  No World Down Syndrome Day, no models, no inclusive ads.  The only role model, really, was Corky (played wonderfully by Chris Burke) on Life Goes On, a TV show in the 90s.  In the end, we decided we wanted to tell people in person, so we didn’t say anything.  His picture was cute as could be.  I tried to pick one that didn’t “show” so much.

new born baby with Down syndrome

Out in public was a different matter.  New babies!  Who can resist?  I warily showed off my baby boy, looking for any sign of question on their faces.  The grocery store, doctor’s offices (lots of those), Target, and so on.  I wasn’t quite sure how to handle questions, but no one really said anything.   

The questions came later, when Caleb turned one, and wasn’t walking, talking, or interacting like a typical child that age.  I wasn’t ashamed that he had Ds, but for me, it really came down to TIME.  Did I have time to educate whoever was asking?  How do you fill a total stranger about Down syndrome in the checkout line?  How do you let them know that your life is “more alike than different”?  So, my standard reply when questioned about his lack of any particular skill was “we’re still working on it”.  It’s still my go-to today (tying shoes, good grief!).  

riding a bike is a big step for any child

As Caleb grew, trips to the playground became interesting. I hesitate to use the word “uncomfortable”, but really, that’s how some of them became.  Typical children didn’t understand why he wasn’t talking back to them; that he didn’t know how to swing just yet, or climb the ropes. I was sad, for a bit.  But that’s really where I had my first taste of advocacy.  I had to learn how to explain to people, both children and adults, that although he was delayed in some areas, it didn’t mean he wouldn’t get there someday.  That he could still communicate, but used a different method (signing) at the time.  That our lives weren’t unhappy, or sad, or less.  Our lives were just different.  I found some people got it, and some didn’t.  And as a parent, I felt I did the best I could to spread awareness in that moment, and move on with my day.  

You will need to have a bit thicker skin, you’ll discover, and be able to listen to some pretty interesting questions. But just like us, who didn’t know much about Down syndrome before our little guy came along, most of the general public doesn’t know much either.  Education is key.  Education and Awareness can lead to Knowledge and Acceptance, to Understanding and Empathy.  Not pity, but perhaps a brief glimpse into our lives, and that of our children’s.  Some people you will reach, and some you won’t.  To that end, we’ve learned to be gentler with people, and give them the benefit of the doubt.  There are jerks out there, yes-ha! But that’s just life.  

As time has moved along, I find that many people who have loved ones with Ds will be the first to ask questions, or talk directly to Caleb himself, as they try to figure out how to break the ice, and gauge whether the parent is interested in talking.  I do the same when I see anyone with Ds!  It’s a club, and a wonderful club at that.  We share similarities and trade stories about our kids.  I love learning more about their children, and hope that they learn from us too.  Having him has moved us out of our comfort zone on more occasions that one, but we’ve learned some wonderful lessons too.  I still certainly believe that we are one of #theluckyfew

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Peace,

Karen