thespecialparent.comSpecial People Parenting Special Kids

on the issue of waivers… the Geraldo Rivera Live on the Fox News Channel is going to be doing a show on this tonight at 10pm eastern. Sorry for the short notice but hopefully you can catch it on DVR at the very least. It promises to be a good episode with people like Chris Burke (Life Goes On) and Timothy Shriver (Special Olympics) and Clay Aiken (American Idol) weighing in on this issue. For more information read Patricia Bauer’s excellent coverage on this episode.

and all thru the house the only quiet was that one little mouse! And that’s because he couldn’t get a word in edge wise for all the ruckus from excited children! It’s pretty amusing actually – It’s the first year that our youngest actually gets it and Katherine is quick to show her vast knowledge of everything Christmas – be in decorating trees, making presents, wrapping or the tradition of feeding Santa. She’s quick to remind him she’s the authority on all things Christmas.

It’s also interesting the difference in the two Katherine’s that I see. Katherine is quick to succumb to her innate desire to be a child and the center of all attention. Just envision the shining star over a manger in Bethlehem…..kinda like that But when given the opportunity to rise to the occasion she can really surprise. Maybe that is the key – being given OPPORTUNITY.

I’m the first to admit – I find it hard to believe my kid is 17. She’s still my babygirl! LOL I do however TRY to give her opportunities to act her age wherever possible. Not that I’m perfect about that. We’re blessed however to have a woman who comes in to help us – because of Katherine’s behaviors in large measure in addition to working with Katherine on her behaviors and helping us handle her when she’s out of control, she helps Katherine with all types of things. Getting her behaviors under control, activities of daily living and life skills – things she will need to be a productive member of society and to hopefully have an opportunity to live on her own.

Katherine’s helper/worker/support person is paid for by a medicaid waiver. For those of you who have one for your loved one you know what a blessing it can be. For those of you who have someone on a waiting list you know how important it could be. For those of you who do not have or know about medicaid waivers let me give you the basics in a nutshell. A waiver as described in the Merriam-Webster’s dictionary as “the act of intentionally relinquishing or abandoning a known right, claim, or privilege ; also : the legal instrument evidencing such an act”. In this case it means that in certain defined circumstances medicaid will allow individual states to abandon certain rules for granting medicaid payments for things it wouldn’t otherwise pay for or waive certain requirements (such as financial ones) to give states flexibility to allow medicaid coverage. The waivers differ from state to state. You can find out more about waivers that may be available to you in your state by checking here.

The waiver would be a wonderful thing *IF* people who needed one could get one without waiting on a list for YEARS. The other major problem is that while waivers are federally funded – they are managed by the state and are not transferrable so once you have one you either stay put or – and it’s a big or – you start the whole process over. When I tell you that starting over is not desirable – just trust me on that.

Waivers are actually a pretty cost effective measure too – keeping Katherine at home costs the state FAR less than if the state needed to pay for her to be institutionalized.

Its for this reason I’m hoping some of you will be willing to go over to change.org and support an intiative for waivers being fully funded. You can get directly to this initiative by clicking here. Some of you may have seen the widget I place on the page the other day.

I hope that you all have the best of holidays – whatever it may be that you celebrate. Holidays are for families and bringing out the best in people. Waivers are like a present you get to have everyday – it gives those of us blessed enough to have one for our loved one the ability to have them living at home or other settings our loved ones approve of -  giving them opportunities that you and I just assume we will always have. For us, Katherine’s waiver means everyday is a blessing and an opportunity for her to grow and rise to that occasion.

I came across this on one of my listserv’s and thought it was useful information for some of you.

Hello, my name is Maria Dellapina and I am writing to inform you about an opportunity to enhance the lives of the children we spend our lives advocating for.

I am a mother of an nine-year-old daughter with Down Syndrome and have
struggled through out her life to fit her properly in eyewear. Being an
optician for over 25 years, I was constantly searching for frames that fit
her unique needs. After realizing early on that I was fighting a losing
battle, I took it upon myself and my experience as an optician, to design
and create a special line of frames that dramatically enhances her abilities
to function in eyeglasses.

I am proud to say that recently I was able to partner with a manufacturer
who has developed my design into a workable frame for children with DS and
other special needs. SPECS4US Inc., Superior Precision Eyewear for Children
who are Special, is my vision to bring specially formated frames to enhance
the life of not only my daughter, but the lives of all the special children
struggling with this problem every day.

I have fitted a dozens of children in the frames, and have seen tremendous
improvement in the lives of all of them. Parents are e-mailing and calling
me to express their gratitude for enhancing the quality of their children’s
vision and ultimately their day-to-day lives.

As I am only one mother attempting to advocate for such a large community, I
would appreciate your help in spreading the word to those I might not be
able to reach. If your organization produces a newsletter or maintains a
website, I would like to ask your support in publishing the following
information below to reach your community.

If you would like to speak with me directly, have any further questions or
would like a sample article ready for print, please feel free to call me at
1-800-586-1885 or email me at info@specs4us.com. Please check out my webpage
www.specs4us.com, to learn more about my cause. Thank you in advance for
your time and support.

Sincerely,

Maria Dellapina

Founder SPECS4US Inc.

Well ain’t that the truth! We’re in the clear on the kidney. Apparently what was seen on the ultrasound was some kind of shadow or something and her kidneys are FINE. The past week has been pretty amazing. The thought that there could be something really wrong rocked me to my core.

It made me think about what I would do if it were really bad, what if it were finally something we couldn’t defeat and put in it’s place. There are some special parents who have to face that reality. I think they are probably the most amazing of special parents. The strength it would take to get through something like that…..I don’t think I’d have that in me.

It made me think of an article my husband had pointed out on MSNBC a couple of months ago that kind of ties today with yesterday in terms of posts. It’s a tearjerker so if you’re at all inclined to tears I recommend a box of tissues before you set out to read it (I needed a few). It tells the story of Robbie and his strong parents Jeanne and Steve. Jeanne and Steve found out during the pregnancy that baby Robbie had Trisomy 18 and would not likely live much past birth. While I loved the story of Jeanne and Steve, I believe that what they experienced is not different than what most people will experience during their pregnancy when the medical establishment discover disability in a fetus. I won’t belabor the point but it’s critical that there be a change in attitude and more than one group is trying to do just that for these special parents who are parents for far too short a time.

PerinatalHospice.com is a good example of the movement to support parents in what must be the most heartwrenching of decisions ever needing to be made. What I like about this is it gives parents a choice. It’s all well and good to say there is a choice, but to say there is a choice which is to terminate or continue the pregnancy with little or no support. No one should have to go through that alone.

There is also an author, Amy Kuebelbeck, who has a book out called Waiting for Gabriel which discusses cherishing whatever life your child has. And isn’t that really the point? Isn’t that what each of us try to do whether our child has 1 minute, 2 hours or 75 years? We want our special kids to make the most of their time here on this earth and with us. These parents don’t have any choice but to make the most of every minute, every second they have with their small, precious bundles.

Thinking there could be something ticking like a time bomb, growing on Katherine’s kidney made me think about things like that – had I made the most of the time we had together? Had I made the most of her life and maximized what she could have done, experienced, loved? I like to think I’ve done a fairly good job….I also think like just about everyone else I could do better. I’ve been given a real gift, one that so many others would kill to have. I want to make sure I don’t waste it. I just hope I remember that feeling. I hope that it doesn’t take something like a potential tumor to make me remember that and be faithful to that.

My hope for those reading this is that they can take this experience and live life as it should be lived – as every moment is precious and should be given it’s all because none of us know when it could all be gone. Today I was blessed. Today I got another moment. I hope you all get many more moments.

…and a cup of coffee

Every Sunday I hope to offer you my version of the Sunday paper with articles from the past week or two, relevant or uplifitng (or both), on various issues within the special needs community.

‘High School Musical’ production takes social inclusion to new level

One of the most successful Disney movies ever has been adapted to stage and performed by thousands of high schoolers across the nation but none possibly as inclusively as this one.

Stars shine at special needs talent show

Children at a local Ohio high school put together an amazing talent show ‘featuring’ Trace Adkins, Jerry Lee Lewis, Avril Lavigne and Soulja Boy.

Zambians pledge stronger voice in disability advocacy

A learning exchange between officials in Zambia and The ARC of the Twin Cities of St. Paul will increase advocacy for the disabled in Zambia.

Yoga’s appeal broadening to disability community

The ability to adapt this form of exercise to a multitude of disabilities makes its application almost universally beneficial.

Labour leader Gary Parent wins United Way Award

Gary Parent says he is humbled to receive this national award for doing “the right thing”

This prom is an enchanted evening

Everyone from parents to teachers to janitors kick in to make an ‘Enchanted’ evening for these special kids

U-46 holds first prom for special needs kids

Tuxedo rental: $150. Boutonierre: $10 Tickets for two: $50. The chance to attend a very special prom? Priceless.

…five shoe, six shoe, seven shoe – Heavens Sake NO MORE!!!

Sounds like a cute rhyme that preschoolers say to learn their numbers but for me it was a little ditty about buying shoes for Katherine yesterday.

Katherine has never been a shoe horse – when you wear an orthotic, fashion via shoes is never something you really consider. As a youngster it wasn’t so bad, sneakers are sneakers are sneakers – as long as Katherine could get the favorite color of the month it was fine. Then you become a teenager. And every girl has some sweet pair of wedges, espadrilles, pumps, flip-flops or some OTHER fashion must have that would have Katherine falling on her face, breaking an ankle along the way.

Just about a year ago now, Katherine went through a heel cord lengthening. It was a difficult decision but for us – but for Katherine it has been one of the best decisions we’ve made on her behalf. Her gait is greatly improved, her mobility far better than it has been in years. It is because of this that shoes have even become a part of the discussion again. At her checkup this past week she mentioned to the doctor that she wanted “party shoes” and after some discussions about type and length of wear party shoes it was!

So off we went. We needed summer shoes for her anyway. The boots she wears during the winter would soon become oppressive in the Atlanta heat. Katherine can burn through the sole in most sneakers in 2-3 months max. The doctor sent us to a shoe store called McMahan’s in Decatur, GA (which if you need shoes that fit well and are well fit for adults – sorry I don’t think they have children’s sizes, look no further). They were meticulous in their pursuit of the perfect solution for Katherine.

Let me mention at this point that we have known for some time now that Katherine’s feet are not the same size. They have not been for years. The foot that has been affected by her stroke has atrophied and has not grown at the same rate as her other one for many, many years. We have compensated for that by using inserts in her shoe to fill up the space.

This has worked pretty darned well – up until yesterday when the nice (and did I mention patient) man working with us was quick to comfort me in the knowledge that Katherine has stopped growing. (how comforting that is is up to interpretation but that’s a post for another day) He also explained to me that her feet have grown since she was measured in November and her feet are now officially 3 sizes and one width different from each other. We now have a size 6 medium foot and a size 9 wide foot.

If you are doing the math the little ditty I started this post out with is starting to become clear. I would for the record at this time to say what incredible respect I have for parents with 4 children who all need shoes at the same time. I thought I too would have a stroke. I thought when my husband saw the charge hit the card he’d give me whatever stroke I didn’t give myself. . .

Then I looked at Katherine walk in these properly fitted shoes. I literally cried. Not big heaving sobs but little silent tears that just roll down your cheek without notice when the love in your heart just starts to pump the water in your tear ducts. It was the single largest improvement I have seen in her since we made the decision to do the heel cord lengthening.

Last night my beautiful 16 year old baby young lady went to a school dance in her properly fitted party shoes that had been given a little extra help and a little extra stability by a talented man who lives in the basement at McMahan’s Shoes. My heart was pushing the water out of the tear ducts for a second time that day as I got yet another shot of how very quickly they grow up and relished the feelings I’m sure every “normal” parent feels when their kid goes off to a school dance for the first time.

While she dance the night away I just held on to the pair of shoes that would never know the joy of dancing with my daughter but were worth every dime we spent on them.

First of all – Happy St. Patrick’s Day!! As a proud irishwoman I can’t let the day go by without acknowledging it!

Today I wanted you all to become aware of a piece of legislation introduced by former presidential candidate Senator Chris Dodd. It is called the Disability Savings Act of 2008. According to Senator Dodd’s website the purpose of this Act is:

To encourage individuals with disabilities and their families to save private funds for disability-related expenses to supplement, not supplant, benefits provided by other sources (including Medicaid and private insurance) so that people with disabilities can maintain health, independence, and quality of life.

These accounts would work similarly to a 529 plan. It allows family members to put aside money to supplement care needed for education, medical services, job training and transportation. The money saved in this program will not jeopardize government program support for individuals with special needs.

With a cap of $1 million Disability Savings Accounts (DSA’s) will have certain tax benefits as well:

• Funds expended from the DSA for specific services such as education, medical services, employment training and support, transportation, and other related services will be tax-free.
• Interest on accounts with a balance of $250,000 or less is tax free.
• Low income earners will receive a refundable matching tax credit of up to $1000 for their contributions to the DSA.

Funds from college savings plans and special needs trusts for the same beneficiary can be rolled into the DSA without penalty.

The theory is that these accounts would be far easier to set up than say a Supplemental Needs Trust and therefore make available an avenue for planning for special needs individuals without the need to consult an attorney which can be cost prohibitive. Disability would be determined by the Social Security Administration or the Disability Determination Service of a state and would have to be under the age of 65.

Senator Dodd acknowledges the difficulty of passing a piece of legislation like this during an election year. He told the people gathered for this announcement that he needed a co-sponsor from across the aisle (meaning he needs a Republican) and that he needs significant support. Actually he said he needed an army of supporters and then added “And you’re my army”

He absolutely does need an Army if we stand any chance of getting this legislation passed. Be a part of the army. If you have a US Senator representing you that is Republican, suggest they support this by co-sponsoring this important piece of legislation. Regardless of who represents you in the US Senate (you can find out at votesmart.org) contact them asking them to support this incredibly important piece of legislation.

I’ll update you as I can regarding it’s movement through the Senate. Seems to me it only benefits everyone to have this passed. Let’s start marching forward now!!!

…and a cup of coffee

Every Sunday I hope to offer you my version of the Sunday paper with articles from the past week or two, relevant or uplifitng (or both), on various issues within the special needs community.
The case for increasing the number of Medicaid waivers
Opinion piece eloquently explaining the need for increasing available medicaid waivers in Virginia which should be reprinted in every state in the union.

Art as an outlet; ‘Living Creatively’ exhibit recognizes ability, not disability
44 artists featured in the 3rd annual ‘Living Creatively’ exhibit all live with disabilites but it it is their artistic ability that unites them.

Hip Hop Baby
Candi Carter develops family friendly ‘hip-hop’ music to teach preschool concepts to help son who was born with chromosome disorder and finds it helps others with special needs as well.

Exercise Group to special needs young people in Hemet
Exceptionally Excited Kids is a nonprofit organization serving individuals with special needs from age 2 through 25.
Rylee’s Rally to help children with special needs
Deborah Davis organizes Resource fair for parents of special needs children with more than 30 vendors who supply a variety of products and services.

Local basketball team headed to Special Olympics championship game
Inspiring story about Naples, FL  basketball team undefeated and heading to Orlando for the state championship

14 percent of U.S. Kids with special needs
Twenty-four percent of families with a special needs child report a parent had to stop working or reduce hours to care for the child. Numerous other findings in a survey by the Health Resources and Services Administration

In my article on January 26th of this year I talked about the use of positive reinforcement in the use of Applied Behavioral Analysis. I specifically talked about an Exceptional Parent magazine article which highlighted something called the Appreciation Station. I told you I was going to get one and try it out with Katherine and report back. So here we go.

I ordered this station and it arrived quickly. While I have to say the picture is of course accurate it does not do this product justice. In person it’s incredibly bright and inviting as was evidenced by BOTH of my kids reactions to it. Excitement doesn’t begin to describe the joyful chaos that ensued as we pulled our very own appreciation station out of the box. Both children couldn’t wait to touch and explore it’s every graphically pleasing detail. It’s well packed and has quite a bit of starter materials to set you on your way. The DVD included gives you a good basic overview of the components and the differing ways in which to use them.

Since our youngest is really still too young to start with this (at least for a few more months) we decided that for us the best way to utilize it was to make each color a different level of achievement as Diana Low, founder, described in the DVD. From my years of experience in knowing what are things that motivate Katherine, I made a list of ‘rewards’ that I felt would be exciting to her and then I made decisions about what each reward would be worth. I made coupons up for each of the rewards and put them into their corresponding capsules (we went from left to right with far left being the lowest value). In the lowest we have stickers, temporary tattoos, (which by the way I thought had no chance of motivating Katherine and is what she looks for the most at this point).

Each container at the lowest level also contains a paper with the words 1 point on them. She collects these to turn in for the upper rewards which each have a corresponding point value. While Katherine has a sheet that tells her what the possible rewards are at each level she gets totally excited about seeing what one is going to come out in her capsule!! I love this because I can structure which reward comes out based on something I might need to do anyway. For instance if we’re going to have a long day and I plan on having take out pizza or chinese that night – I line it up so that’s the reward she gets out of the capsule and Katherine gets a ‘reward’ out of it by choosing whether it will be pizza or chinese!! I also use it to make sure she doesn’t trade in her points and get “afternoon at the movies” on a Wednesday when the wait to redeem might kill the effect of the reward.

We’ve also got a new coupon that we’re implementing with Katherine with some good success. I call it the “Get out of Jail Free” card – which those of you who have ever played Monopoly will understand. Katherine calls it the Wipe Out Card. It’s a card she gets in the capsule which she can save until she has a day where she has a behavior issue. When she has the behavior – we use the card to remind her she has a chance to reverse things and still earn for the day. With the opportunity to know that if she pulls it together all is not lost for the day she frequently seems to be able to pull it together BEFORE it’s totally out of control and she’s allowed to ‘Wipe Out’ the episode and still collect for the day. She knows however that behavior that involves aggression, self injury or property damage can’t be wiped out. We are finding that Wipe Out seems to reduce our chance of reaching destructo mode by about 60% so for Katherine thus far it’s an incredibly valuable technique.

The lowest level rewards we use once a day but in the case of a particularly outstanding accomplishment I have occasionally recognized this with an additional token which is something like receiving an Oscar apparently (as far as Katherine is concerned).

As I think you can tell overall, I have found the Appreciation Station to be a WHOPPING success with Katherine. I look forward to implementing in in several months with her brother as well. The only real con I had is that at the start the capsules which hold the rewards were a bit difficult to open for Katherine. She had to give them to me to open which never really seemed to kill the joy for Katherine, but might in another child who had a physical limitation without the mental limitation. They have gotten easier with repeated use. I feel like the investment of $49.95 is incredibly well worth it.

I wrote to Diana Low last week to let her know I was going to be reviewing the Appreciation Station on The Special Parent. I was hoping I could get her to offer some incentive to our readers who might be interested in purchasing one. As my mom always said the worst they can do is say no. Hey I figured maybe she’d give us a few dollars off but she’s done even better than that – she has offered my readers FREE SHIPPING!! (A $10 value!) All you have to do is enter the code ‘PARENT’ where they ask for a promotional code. This is good for up to 10 stations so stock up day care centers and head start programs!!

Diana also has another product The Conversation Station which we’ve only just started to use and I’ll report back on in another week or two.

…and a cup of coffee

Every Sunday I hope to offer you my version of the Sunday paper with articles from the past week or two, relevant or uplifitng (or both), on various issues within the special needs community.

Police learn about autism to help prevent tragedy
Education of police officers and first responders with an awareness and understanding of autism and how to teack and live with those affected.

Hospital boss arrested over al-Qaeda attack by human boobytraps
The acting director of a Baghdad psychiatric hospital is arrested on suspicion of supplying al-Qaeda with women with Down Syndrome that it used to blow up two crowded markets in the city.

Balance is key for family of child with special needs
Guam woman writes about her balancing act in caring for her family including 8 year old Deborah with Down Syndrome.

Boy With Learning Disability Teaches Homeless Kids
12 year old Michael started a non-profit group to give laptops to disadvantaged kids and teaches them to use the technology.

Oklahoma’s only special-needs cheerleading squad competes this weekend in Dallas
A really uplifting story about a special needs cheerleading squad that is competing at the National Cheerleading Association Championships in Dallas this weekend.

Al Hammadi creates history riding Sharqi
A 15 year old created history when he became the winner of a long-distance horse race for persons with special needs.

When a Ramp is Not Enough – Addressing needs of disabled in disasters
The National Organization on Disability (NOD) have launched and emergency preparedness initiative designed to help those who plan for disaster understand and meet the needs of the disabled community.

Disability Issues Hit the Big Screen
Eighth annual London International Disability Film Festival features four days of films, documentaries, workshops and seminars from disabled actors and directors from around the world.