The New R-Word

Today has officially been set apart by r-word.org as the day to spread the word to end the word.

The fabulous Ellen created this video, and I think it does an amazing job of explaining WHY the word is offensive. Too many people think we're being too sensitive and need to just relax instead of running around telling people to stop using a word. I doubt any of them would have a comeback for this: 

My favorite part starts at about 1:10....

"It's just slang!" you might say. 
"It's just a joke!" 
"I'd never actually call your son a retard." 
Thing is, every time someone uses the word "retard,"
they spread the idea
that people like my son are
stupid, dumb, slow, incompetent, pathetic losers.

Thank you, Ellen, for giving us something to answer the question of WHY we are so adamantly opposed to this word. Let's all spread the word. The new R-Word is RESPECT!
 

7 Lessons

 

This post from the blog Wrestling With an Angel by Greg Lucas touched my heart and made my day. I hope it might be uplifting to you as well....

The tragedy of disability is not disability itself, but the isolation it often creates. This was one of the most important lessons our family had to learn. Sadly, we learned it the hard way. But hard lessons often lead to great insights and over the past few years we have had the wonderful opportunity to gain great wisdom from several families in many different communities.

While there are still many discoveries to be made along this journey, here are at least 7 helpful insights gleaned from the community of disability that have made a powerful difference in our family.  

1. God is both sovereign and good. When you are given a child with a severe disability, it is essential that you see God’s sovereign hand at work in your family. Scripture declares that your child was not an accident or a tragedy, but wonderfully and purposefully knit together from a blueprint of God’s plan that was designed before the foundation of the earth. (Psalm 139:13-17; Ephesians 1:3-12). Disability is not a curse; it is the goodness and grace of God magnified in ways that many typical families never get to experience.

 2. You have been brought into this community for a purpose. I was very slow to realized the purpose and potential of our family’s suffering and hardship until I began sharing our experiences. 2 Corinthians 1:3-7 came alive during that time. Suffering brings us into the intimate presence of God where the sweetest comfort occurs. But we are not comforted to become comfortable; we are comforted to become comforters. Every single episode in our family’s experience with disability was an equipping of God’s grace to be shared with those in desperate need of His comfort.  

3. Disability magnifies our vision for joy in the smallest things. Most families living with disability will testify that some of their greatest victories have been those moments typical families often take for granted. I remember the first time our son used the bathroom in a public restroom (at the age of 17). We had just walked into Walmart and Jake took me by the hand and led me to the men’s room. He pulled his pants down and tried to pee in the toilet. He missed the toilet completely, peeing all over the seat, the floor, the wall and the stall. But he didn’t pee in his pants! We were laughing, clapping, cheering and praising God in a urine covered stall of a Walmart restroom. Most people cannot comprehend the enormous victory of that day, but disability often gives us 20/20 vision to see the things that others seem to miss. This is a wonderful gift.  

4. Community brings much needed perspective As said before, the danger of disability is isolation. The danger of isolation is idolatry (yes, our disabled children can become idols). The blessing of community is perspective. We all need perspective to wake us from the potential of self-pity and self-centeredness.

Just when you think no one on earth could possibly have it more difficult than your family, you meet a single mother with severely autistic twin boys. And just when the single mother thinks she can’t go on, she meets a grandmother trying to raise a 10 year old girl with fetal alcohol syndrome. The grandmother watches as a young couple attempt to nourish their unresponsive child through a feeding tube between seizure episodes. These families are learning something extremely valuable from each other--perspective turns our inward focus to outward community. And within community, disability become ministry.  

5. Outspoken men are often minorities. While this is not always the case, oftentimes when it comes to family leadership, women seem to be the most outspoken advocates for their disabled children. A mother’s tenacity may seem like the most natural response to a child’s disability ("Mama Bear" is not one to be messed with), but when this tenacity stems from a father’s detachment or disillusionment, it can create a lopsided weakness in the family structure. A family living with disability needs a father of certain dependability. This dependability is often best cultivated and strengthened through other masculine men in the community of disability.

6. When marriage takes second place to disability, it ends up in last place. It has often been said, “The best way to love your children is to love your spouse.” While very few couples would admit to neglecting this truth in principle, many neglect it in practice. Good intention, without deliberate application, leads to marital deterioration. The relentless care of a disabled child, added to the care of other typically developing children in the home, added to working overtime to pay medical and therapy bills, added to stress and depression and weariness, leaves little time for marriage maintenance. A marriage that is not properly maintained is like a car leaking motor oil. Sooner or later the cylinders will seize, the engine will blow, and the damage will be beyond repair.

Do whatever it takes to make space in your busy schedule for quality time alone with your spouse. Men, don’t wait for your wife to seek this; lead the way. It could be as detailed as planning respite care and adding a date night every other week, or as simple as ending every evening sitting on the couch laughing (or crying) about the day's events. Aside from daily intimate time with the Lord and His word, this will be the single most important thing you can do to protect your family from becoming the alternative sad statistic.

7. A child with a disabled sibling is anything but typical. I have borrowed (and adopted) the term “typically developing child” from my good friend John Knight. It is clear and accurate language in the proper context. But the more time I spend with siblings in families touched by disability, the more I realize these kids are anything but typical (per se). I have watched in awe as siblings have stepped into difficult situations rivaling the heroic status of soldiers, firefighters and police officers. I have seen awkward, backward teenagers discover their extraordinary gift and calling as compassionate caregivers. And many times when I began to feel pity towards one of these typical siblings I have felt the faint nudge of the Lord scold me with, “Pay attention, I’m doing something incredible in the life of this child as I conform them into the image of my Son.”

No school, public or private, can teach the deep lessons of life like the school of disability. I can say without hesitation that my sons will be better men because of their relationship with their disabled brother. Living with Jake has not only prepared them for the worst of trials, it has equipped them with a profound sensitivity to recognize the intentional hand of God in the smallest, most unsuspecting, details of life.

What an extraordinary gift their brother has been!

These lessons are not even close to being exhaustive. They are ongoing and ever developing all around us. The desperate search and refreshing discovery of each nugget of wisdom brings strength to our family and equips us to be poured out into the lives of others.

 If you are reading this and happen to be new to the community of disability, welcome to the family! It is a wonderful, glorious, breathtaking journey that will open your eyes to the most precious things in life as it draws you closer and closer to the most precious truth for eternity.

Honoring the Spirit of Advocacy

In honor of one of the greatest examples of advocacy, I'd like to wish you all a Happy Martin Luther King, Jr. Day. He taught us not to stand still when we see injustices, but to always be brave, step forward, advocate, and strive to ensure the world treats everyone justly. As I have come to know many of you, I see this spirit alive and thriving! So today, I honor you as well.

Sparkle Effect

I saw this article on the ams vans blog. It made me smile, so I had to share it!



Sarah Cronk, the creator of the Sparkle Effect, a non-profit organization that helps high schools around the world create inclusive cheerleading programs, was awarded the $100,000 as part of VH1′s Do Something Award. The award recognizes teens who promote social change, and Sarah’s organization aims to help teens learn that individuals with disabilities are capable of great things. Just 18-years-old and cheerleader herself, Sarah created and coached the first inclusive cheerleading team that includes both students with disabilities and without disabilities when she was just 15-years-old!



Sarah started an inclusive cheerleading squad—the Spartan Sparkles—at her high school after noticing the struggles of her brother, who has autism, to fit in and find social outlets. Her brother was befriended by the school’s swim team captain, and Sarah saw how this simple act of inclusion changed her brother’s life for the better. A cheerleader herself, she wanted to help other kids with disabilities like her brother’s have a better high school experience and enjoy sports and other extracurricular activities that they had not been able to enjoy.



The Spartan Sparkles cheerleading squad, which performed at sports games along with the regular squad, was a huge success. In 2009, the program reached capacity, and instead of congratulating herself on a job well done, Sarah wanted to expand the program. She then created the Sparkle Effect with the goal of helping other high schools create similar inclusive sports programs for teens with developmental and physical disabilities. The Sparkle Effect provides mentors, support, training, grants for uniforms, as well as a free starter kit for schools and organizations who want to start inclusive sports programs.

Map of Sparkles Cheer Teams Across the USA

“Students at all the schools have reported that cheerleaders who are on the squads who have disabilities are being included outside of the squad,” Sarah said in a video that aired during the VH1 show. “People are more willing to talk to them at school. It puts the spotlight on their abilities rather than their disabilities.”

The Sparkle Effect now helps over 50,000 students with and without disabilities understand the importance of inclusion. The Do Something Award will help the program expand and reach even more teens, so that a new generation of people will be able to understand that abilities are more important than disabilities.

Three cheers for Sarah!


Sources:
http://www.disabilityscoop.com/2011/08/23/teen-inclusive-cheerleading/13790/
http://www.huffingtonpost.com/sarah-cronk/the-sparkle-effect-when-e_b_929193.html
http://www.dosomething.org/
http://www.thesparkleeffect.org/index.php?pg=18

Awareness

(Inside Text..."Hope Your Holidays Are Special"

Nobody likes to be talked down to or treated like they are invisible, but it happens everyday
to people who have disabilities or use wheelchairs to get around. It is not typically done on purpose, but is often because of the lack of knowledge or lack of interaction with someone who has a disability. More often than not when you first meet a person who has an obvious disability, maybe they are in a wheelchair, or maybe they are blind or have vision impairments. You become a bit uncomfortable, you are not sure what to say. Sometimes pity, fear of the unknown, general awkwardness and a lack of understanding makes you shy away from being cordial.
One of the ways to get past the social awkwardness is to know how to act or what to do in an unfamiliar situation, so educating yourself and others about disability is very important. I think it should be started at a very young age. I wholeheartedly believe in inclusion.
Inclusion is part of a much larger picture than just placement in the regular class within school. It is being included in life and by using one’s abilities in day to day activities as a member of the community. Inclusion is being a part of what everyone else is, being welcomed and embraced as a member who belongs. Inclusion can occur in schools, churches, playgrounds, work and in recreation. It is my hope to see people like my beautiful granddaughter who lives with Cerebral Palsy be more accepted and understood by society. I think I speak for most people who are touched by someone with a disability, when we see things in stores, such as Barbie in a wheelchair, or the occasional book that explains to children that being a little different is o.k. that they are people who are accepted by others and they are people just like you, who have feelings just like you, and they have a purpose in life, just like you do. That is why I decided to design a couple of Christmas cards that show children enjoying themselves at Christmas time, opening gifts and helping to decorate the Christmas tree. It is my way of raising awareness and acceptance. If I can get these cards out for Christmas, people will send them across the miles to their family and loved ones embracing and accepting disabilities and soon, we will be spreading awareness all around the world!

If you are interested in these cards, please contact harrold.janet@gmail.com
Orders are being taken through October, cards printed on November 1st and in your home by Thanksgiving.

Just A Little Reminder

Sometimes words and actions can be hurtful. Being the grandmother of a beautiful little girl who just happens to have C.P. I am reminded everyday how words can be hurtful, more often than not these words are not meant to be offensive, or hurtful, it is simply the lack of understanding.

So I thought I would just subtly remind people to choose their words a bit more carefully. I can’t tell you how many times in a week, Hailey comes up in conversation (well, hundreds of times actually, after all I am a proud Grammy). Very often when I happen to see or hear from someone that I haven’t heard from in years or perhaps it just comes up in general conversation that Hailey has C.P. It never fails, the dreadful words slip off their tongue effortlessly and without much thought “...Oh, i’m so sorry, that must be so difficult, is this something that she will grow out of” or how about this one...she will never have a good quality of life. Though I am well aware that her quality of life will be compromised, the reminder is unnecessary and I chose to focus on challenging her everyday and promoting her independence. These are the kinds of things that will benefit her best. I’ve heard people say that people with C.P. and other disabilities are not normal, and I can’t help but wonder who decides what “normal” is.

As defined in Wikipedia... In behavior, normal refers to a lack of significant deviation from the average. The phrase "not normal" is often applied in a negative sense (asserting that someone or some situation is improper, sick, etc.) Well, Hailey is not improper at all. Actually her actions happen to be more proper than the people who ask these silly questions or make these remarks without thinking them through. Now, don’t get me wrong, I am not saying that I didn’t do or say similar things before Hailey was born. I had no idea what to say or how to act around others who had a disability. But now I know better, and I want you to know better too.

Always be aware of the impact your words can have on others.Teach your children that it is o.k. to talk to people who have a disability, otherwise you are not only sending my child the wrong message, but your child as well. I think it is all in the education, it is the process by which society deliberately transmits its accumulated knowledge, skills and values from one generation to another, so please, pass it along.

Special Needs Trusts

Last week Marcus took what I consider to be a big step in our financial planning. Among other things, we set up a special needs trust for Samantha. Two years ago a friend, and financial planner, suggest that we do that for Samantha. At that time, he was working with a family who had a special needs daughter. When the parents died, the daughter received some inheritance money, thus disqualifying her from the benefits she was currently receiving. He said it became rather messy to work out. I kept that information in the back of my mind...but recently it's been inching its way up to the forefront of my mind. I've felt this nagging feeling to look into special needs trusts...and ultimately, we set one up. I can't tell you the relief I felt after doing this. While we were with the attorney, I felt a load come off my shoulders. I feel like it was worth every penny spent for that attorney (who happened to give us an incredibly deal), so we could feel that peace and security for Samantha's future.



So, what is a Special Needs Trust? Money set aside for your special needs son or daughter.

Why is it important to set one up, or at least investigate it? In the event of your "untimely demise" (that's how our attorney put it...yikes!), this money would be set aside for our child. If that money exceeds the amount allowed in order to qualify for SSI, Medicaid, etc...it doesn't matter. It's still protected and isn't used against your child in obtaining those services. However, without the Special Needs Trust, if money is inherited by your child, that becomes a part of his/her assets and can, and usually, disqualifies him/her from receiving other benefits -- such as the already mentioned SSI, Medicaid...but also food assistance, specialized housing situations, etc. Those benefits that they may already receive may be cut off if that money isn't protected by a special needs trust.

Why is it good to set up a Special Needs Trust early? Good question. Because, I was planning on doing it later...when Samantha was older and when we were actually getting a real income (doesn't that sound pleasant?!). Setting up a Special Needs Trust early is smart for a couple reasons (that I can remember anyway). One: You never know what will happen tomorrow. As much as we like to think we are invincible, if being a special needs parent has taught me one thing, it's that life doesn't turn out like you plan. So, you plan for the unplanned...er...well, you get what I'm saying. Two: The money set aside in a special needs trust doesn't count against YOU or your other children either. For instance, say you have child #2 who wants to apply for financial aid for college. If you have $50,000 sitting in a separate account that you have set aside for child #1's care, that may be considered money that the parents have and can disqualify child #2 from getting assistance. HOWEVER, if you have a Special Needs Trust set up for child #1, even if you have $5,000,000 in it, when child #2 applies for financial aid, he'll still qualify (well, possibly if the other criterion fit). Say YOU are going through a rough financial spell. No work. No money coming in. You receive food assistance for a period of time. The money in the Special Needs Trust is NOT counted as personal assets. That money is protected. You still have to declare you have it (gov't needs to know all that stuff), but it's not looked at as personal assets -- because really, it's not. It's for your child.

What can the money be used for? Pretty much anything that isn't already be taken care of by other benefits. So, for Sammy, we're using the money from her trust for therapies, perhaps orthotics if her insurance denies them...transportation expenses to Now I Can in September...Based on Samantha's situation right now, we could use her trust money for pretty much anything it seems. But we've reserved it as a place to hold for those "special" expenses. And hopefully, over time, it will grow. As we save for each child each year, we'll put a little bit in her trust. And as she receives gift money for birthdays or Christmas -- if there isn't anything that I feel like she needs right then, I'll put it in her trust until I remember that super awesome sensory toy that I think she'll love.

So, the money is accessible? Yes, it would be pretty pointless if it wasn't. The money that is put into the trust is accessible all the time. It's not held for your child until you die. The money is there to be used. You can freely add to it and take from it. Make sure, however, that you keep receipts. At anytime, you can be audited. So, keep track of things. But you don't need to be crazy about it. Your Special Needs Trust will be under a different account. If you have a debit card from the account and pay everything for your child that you plan on the trust money paying for, you'll have bank statements that have it all documented I assume. It may take some simple organization in the beginning, but unless you are planning on purchasing everything for your child with the trust money, it's pretty easy stuff.

What happens if I outlive my child? (sigh) Who wants to think about this? But, it's a reality, right? And something that we need to know in the event that this happens. In terms of your money, you choose where they money would go. Most parents choose to have the money go back into their own account in the event of the above mentioned question. However, you can put in the trust terms and conditions that the money is to go to a charity, divided evenly among siblings, etc. It's up to you. Now, in terms of your heart, I'm not sure what happens. And I dread even the thought of it.

Like I said, our experience setting it up was easy, fast, and made me feel secure. Nice. Run out and set up a Special Needs Trust? Maybe if it's on your mind already. If not, definitely consider it. Do your research. Ask other special needs parents what they've done. The consensus from all financial planners I know (and I know a surprising amount) all say it's one of those "definitely do" items when it comes to financial security in the future for your child/children. Even if you only start with $100 in the trust, you're beginning the process of setting up security for when you are gone.

Americans with Disabilities Act celebrates 20th anniversary

It was 20 years ago that President George Bush Sr. signed the ADA into law. This groundbreaking legislation gave people with disabilities full legal equality with their non-disabled countrymen.

The ADA is a civil rights law that prohibits discrimination solely on the basis of disability in employment, public services, and accommodations. It protects any individual with a physical or mental impairment that substantially limits one or more life activities. This year 54 million people - 19% of the population - has a disability and are helped by this law. I could do a dance I'm so happy that this law was passed!

What has this law changed? There is better accessible transportation options, wheelchair-accessible buses and curb cuts. There is access to sign language and printed materials for deaf individuals. There is Braille in public areas, on hotel doors and elevators. And, while the unemployment rate for individuals with disabilities is still a staggering 75%, there are more people with disabilities in the workforce today.

Many people have benefitted from this law including those who are not disabled at all. For example, curb cuts are great for moms with babies in strollers and for children riding bicycles on the sidewalks. Closed captioning is often used on tvs in gyms so the members can exercise and follow along with a show of their choosing. These are just a couple of examples of how inclusion often benefits everyone and not only the disabled individual.

I know not everyone is happy with the speed of progress since the ADA was passed and that we have more work to do, but for today I am celebrating the people who fought so hard to get this law passed and the progress we have made toward including people of all-abilities into every aspect our society.

Louder Than Words

The award-winning 'Talk' portrays a society in which non-disabled people are a pitied minority and disabled people lead full and active lives. Jonathan Kerrigan plays a business executive whose negative preconceptions of disability are dramatically shattered. This is definitely worth your time if you haven't seen it already....