New logo 

News from PKS Kids
November 2013






Face2Face 2014
Save the date! 
June 2014, Chicago, IL
 
We are excited to announce the dates and location for next summer's conference. We aren't ready to announce registration details yet, but this will give you an idea for travel plans!  Please do not book your rooms at this time.  Thank you.

June 19-22, 2014 at the Chicago Hilton Indian Lakes Resort!  www.indianlakesresort.com  
Toy Talk
for the mouth...The Z-vibe

 

The DnZ-Vibe� is a vibratory oral motor device specifically engineered to improve a variety of speech, feeding, and sensory skills. 

The vibration will provide a new level of sensory stimulation to increase oral focus and to draw more acute attention to specific movements of the cheek, jaw, lips, and tongue. 

PKS Awareness Day
 
December 4 of each year is designated as Pallister-Killian Syndrome Awareness Day!  In the past families have hosted awareness parties, done a local fundraiser, spoke at events, and contacted their legislators to get an awareness day designated in their state.   


We now have PKS shirts (short and long sleeve for both kids and adults) and bracelets available to purchase at this link:  http://pkskids.bigcartel.com/  !!

  

 

More PKS logo items coming to the store over the next few months!

Financial Steps for Families with Special Needs
 
"What will happen to my family member with special needs when I am gone or no longer able to provide care?" This question haunts many families. Fortunately, there are steps you can take to help assure the long-term financial security of a loved one with special needs:

1. Start Planning Now

Whether your loved one is four or forty, you never know how long you will be here. Of the more than 10 million people with developmental disabilities in the United States, fewer than 20 percent of their families have made any financial preparations whatsoever.

2. Discuss who will provide care

Who is available to help? Don't assume that other family members will take responsibility. Discuss the topic openly, so that each member can decide what role, if any, he or she will assume. Remember, these decisions often involve a lifelong commitment.

3. Don't put assets in the name of the family member with special needs

It may disqualify your loved one from future financial aid and could also trigger reclaiming of past benefits, especially by Medicaid. This is why it's often recommended to avoid outright gifts or naming the individual with special needs as a direct beneficiary in your will and life insurance policies.

4. Consider establishing a Special Needs Trust

If properly drafted and irrevocable, a Special Needs Trust can help maintain eligibility for public programs. These assets are considered separate from those of the family member with special needs. The trust also provides professional money management of assets and funds for your loved one's care.

5. Select guardianship carefully
Your f
Your family member's future guardian will be selected for a number of qualities - financial discretion, knowledge of care, likes and dislikes, as well as a genuine interest in the person's future. The guardian should be able to make decisions as needed and according to the Letter of Intent.

6. Arrange funding

A Special Needs Trust is of no value without funding. Since assets cannot be removed from the trust, it is often recommended that minimal funding take place during the parent's lifetime. Instead, many people purchase life insurance on the parent, naming the trust as beneficiary. It's also possible to make the trust the beneficiary of wills, annuities and qualified plan assets. Other family members and friends who want to help out can be encouraged to put money directly into the trust.

7. Draft detailed written instructions in a Letter of Intent

A letter of intent should include general information and background about your loved one, medical history, present and future housing arrangements, daily living skills, favorite leisure activities, rights and values you want to preserve, legal papers and their location, circle of friends and professionals, final arrangements and whatever else will help caregivers enable your loved one.

8. Don't forget other family members, such as other heirs, especially other children

Provide for them in your will and with life insurance. This is vital because assets in a Special Needs Trust cannot be removed except for the benefit of the special needs individual.

9. Be aware of differences in state laws

Medicaid, for instance, is a federal program regulated and managed by the states. Guardianship laws and eligibility guidelines used to qualify for benefits differ across states' borders.

10. Seek professional advice

Many people will want to help, but few are qualified in this complex field. Find specialists with an expertise in special needs planning, including attorneys who specialize in special needs situations.

The bottom line:

Creating a financial strategy for a family member with special needs can be demanding, time-consuming and frustrating. But your effort will be worth it down the road, both for you and other family members. Above all, the preparations you make now can help assure your loved one with special needs will be financially secure when you are no longer able to provide for them.

Life insurance products usually assist you in coordinating all the work that has to be done with your attorney and CPA. There are specialists that can assist you with the creation of trusts and estates. One of the advantages of life insurance is that a cash surrender value builds up that can be used for any expense approved by the trustee.

An annuity is a long-term, tax deferred investment vehicle designed for retirement. Earnings are taxable as ordinary income when distributed, and if withdrawn before age 59�, may be subject to a 10% federal tax penalty. If the annuity will fund an IRA or other tax qualified plan, the tax-deferral feature offers no additional value. Not FDIC/NCUA insured. Not bank guaranteed. Not insured by any Federal Government Agency. There are charges and expenses associated with annuities, such as deferred sales charges for early withdrawals.
 
 --Michael Stern

 

PKS Kids Recipe book  
Recipe books for sale $10.00 each! (plus shipping)
 
 
Email Christine here to order.  
What a great gift for teachers and family members!!
Family Giving Grant  
We are here and would 
love to help! 
Having a child with special needs can be challenging for many reasons.  Not having access to the equipment due to insurance or other obstacles can be overwhelming.  We are here and would love to try and help. 
YOU CAN MAKE A DIFFERENCE
Interested in fundraising?  Contact Juliet

            

Have you submitted your child's picture and story for our website?  Please take a few minutes to do that by emailing to [email protected]

 
Follow-up Links

Sincerely,

Your PKS Kids Board

 

BOARD OF DIRECTORS

Board Chairman:  Mike Zane
Board Members:

Cammie Gray  Kim Hudson

Gretchen Peters                              

Nicole Schmidt

Kate Hettiger                                  

Christine Strahm

Juliet Dawkins

 

Greetings!
Last newsletter we gave you insight to one of our oldest PKS Kids, Lauren.  In this issue we share another older child's story, Ricky, a continuation from Lauren's story told by her friend and classmate, financial planning for parents of special needs child and more.  We know it's one of the busiest times of the year and we thank you for reading our latest news and all the support you continue to give PKS Kids!

Ricky's Story

Ricky's Story

"We don't believe your fetus is viable ... you need to seriously consider terminating the pregnancy. You need to prepare yourselves to pick out a name and a burial plot... "

This is what we heard when we were given the results of an amniocentesis at 36 weeks in early October 1995. We were informed that our child had a genetic defect - Pallister-Killian Syndrome Tetrasomy 12p. We remember hearing that our child was most likely malformed with a diaphragmatic hernia and had zero chance of surviving childbirth. We were shown every conceivable worst case scenario for the information available back then, quoted the "challenged" infant mortality rate, given the impossible odds for raising such a child, warned of the unbearable emotional and financial burden we would face along with the dire prediction that we would be ostracized by family and friends if we chose "... to have this child."

Two weeks later, at 9:39 AM Ricky arrived via cesarean section. Four weeks later he was rushed to the ER with vomiting and high fever ... he had bacterial meningitis. There were no veins available that could withstand the long term IV use required to administer the antibiotics. Ricky needed an operation to insert a broviac catheter in order to receive the antibiotics, but the Doctors hit a wall because his esophagomalacia was preventing any intubation. A specialist was rushed in with the hope that he could solve the dilemma and save Ricky's life....

... now here we are 2 months away from Ricky's 18th birthday and his life has been remarkable. Yes, there were plenty of tough times - surviving a dozen aspiration pneumonias because his epiglottis doesn't close quite right; the onset of seizures in the middle of his sixth year; dental reconstructive surgeries every two years from his eighth birthday on; biannual fittings for a soft Boston back brace to deter the kyphosis from accelerating; most recently a bronchoscopy was performed to find out why extubations have been so difficult - he has an oval shaped esophagus; and yet with all of that going on, his life experiences are enviable.

Ricky is quick to smile, loves his music and has a belly laugh that is most contagious. Best of all, he loves to travel. He flew to Las Vegas to see his sister get married in the landmark Little White Chapel right on the strip; his next flight was to San Diego for his oldest brother's wedding at sunset on the Pacific coastline; 8 months later he was off to San Francisco for his older brother's wedding with the promise of a cable car ride. (We live in Pennsylvania). He flew to the Big Island of Hawaii and saw the black sands first hand before heading over to Maui to show off his charms to the local ladies at the Luau in Lahaina.

He has vacationed a half dozen times in the Outer Banks, visited the Pocono's and Williamsburg Virginia and most recently added Virginia Beach to his vacation repertoire. However, one of his most exciting excursions was to the capitol building in Harrisburg where Ricky was both witness and participant for the passing of State Resolution 252* recognizing December 4th as Pallister-Killian Awareness Day. Ricky was seated directly on the Senate floor to the immediate right of the podium as the resolution was presented, voted on and passed. (Check out the pictures on Senator Greenleaf's website.)

Ricky 17th birthday highlight was a solo ride in a hot Red Corvette with the top down of course, coordinated by his Aunt Betty and driven by his Uncle Drew. His Godfather never misses his birthday and his Godmother calls him every week. His grandmother keeps him in her daily prayers and his nieces and nephews all enjoy playing alongside Uncle Ricky. His cousins from Sicily visited last year and now they want him to come out for a visit. If we can work out the logistics ... maybe a cruise for his 20th birthday is the way to make it happen!

From the moment Ricky was born, we promised ourselves that we would let Ricky live his life to the fullest - no expectations and without limitations. We wouldn't decide for him what he could or couldn't do and not let him try because of it. He continues to amaze us with his zest for life and although he has never spoken a word, he can look right into your heart to let you know "I love you". We are glad we listened to our hearts and chose to give Ricky life.


Follow-up to Lauren's story, by her friend Megan.
 
 

 

 

I first met Lauren in 1991 when we were in 2nd grade.  I was a new kid in town and I remember my first few months just being terrified to go to school and trying to make friends.  Lauren was in my class and seeing her everyday was always a highlight.  The previous school system I had come from didn't have students with disabilities in mainstream classrooms, so there was very little interaction.  It was a bit of a curiosity for me to have this girl in my class who couldn't communicate (little did I know back then that she can communicate her wants and needs just fine!) and had to have help with everything.  I can honestly say though - knowing Lauren has been the best life lesson I could ever ask for.

 

My best memory from that year is also my fondest.  Our wonderful teacher, whose name I can never remember, would include Lauren in so many things that we would do during the day.  Everyday, she would read a story to us while we sat on the floor.  Lauren would always be perched in the back, on the floor with us, while two people got to sat on either side of her.  She would always, during some point in the story, lean over and lay her head on one person's lap. The first day that happened to me was probably the highlight of that year, but doesn't even come close to the best thing that happened.  During that year, Lauren was working on feeding herself with the help of her aide.  While we would be working on math problems or science or reading in class, she would be working on picking objects up, moving them around.  About halfway through the year, she had started getting really good at picking up an open cup and bringing it to her mouth to take a drink.  It was empty, until one day, her aide put orange juice in the cup.  Our teacher had us stop what we were doing and watch Lauren.  She was regarding the cup with interest, trying to figure out what was different.  Finally, after a few minutes, she reached out, grabbed the cup, brought it to her mouth, and drank the entire cup of orange juice, all without help.  Our entire class erupted in cheers!  We were all so proud of her. We had watched her work and persevere through frustrations (of which there were many) to do something that many of us take for granted everyday.  Just thinking about it now and how that felt brings a tear to my eye.

 

I wasn't always in Lauren's class in elementary school, but I was usually able to spend some time with her most days.  We had a program that started in the school that would bring "normal" kids together with the kids who have disabilities in the afternoons to share time together, go on outings, but mostly, to learn about each other.  I do believe this program, which continued into middle school, was a huge catalyst in the drive for understanding.  I believe the reason there was very little bullying when I was going through the school system was because we did have a community of educators who cared, who wanted everyone to accept each other no matter of differences because everyone is first and foremost a person who has a family who loves them.

 

During middle school, we moved to block scheduling, so there wasn't really a set class for Lauren to be in since we all moved around so much during the day.  Any time I was able to get away and spend time with her and others, I did.  Lunches away from the cafeteria.  Separate little field trips.  My "normal' friends and I tried to maintain that contact because it was important to us.  We loved Lauren, Danna, John, Stephanie, and Lauren because they taught us what was important - to slow down, appreciate what you have, and to love everyone without conditions.  These years are fondly remembered with sleepovers, birthday parties, impromptu trips, shopping (Lauren LOVES the mall), and lots of chocolate.

 

Another great memory I have is from high school, I think.  Lauren's family invited me to go with them to Shenandoah National Park one fall day.  Somehow, I didn't have soccer that day, so I was excited to go.  On the way, we stopped to get lunch.  They bought both me and Lauren a large chocolate shake.  Now, Lauren and I both LOVE chocolate and I thought it would be fun to race her to see who could finish theirs first.  BIG MISTAKE!  Once Lauren has chocolate in her hands, she WILL NOT let go of it until it is done.  She starts in on her shake and I'm trying desperately to match her.  I think she finished first, but barely; I was close to the bottom, but, unlike me, she didn't have a raging stomach ache from trying to finish that so fast.  In fact, I think she was laughing at me.

 

But the best memory of all was graduation in 2003.  I was asked to walk Lauren across the stage to get her diploma.  I was so excited and so nervous.  I didn't want her falling off the stage after all.  The day was full of excitement, everyone getting ready to graduate and there was that electricity in the air, the knowledge that this part of your life was done.  How bittersweet is that day.  When the ceremony finally started and we got through all of the speeches, I went to the back to get Lauren so that she would be ready when her name was called.  That walk across the stage was probably one of the best moments of my life.  We got to the table, our principal handed her her diploma that I helped her hold, said some wonderful things to her, and we turned to moved forward so I could move her tassel.  I looked up as we turned and the entire hall was full of people standing, clapping, and cheering.  This wonderful girl, who taught me so much about how to live life to the fullest, was smiling ear to ear and getting a standing ovation from the community who embraced her..  And with that, it took quite a bit of cajoling to get her off the stage.  Girl likes her well-deserved attention!

 

After graduation from high school, I left for college in another state.  I had fully intended on working with disabled children in the local school system, only to learn that they didn't have a program for them that included them in any way and also doesn't have the funding to do so.  I was dismayed, but persevered and was able to work with a 5th grade teacher for 3 years, with each year having a child with a disability (autism, hearing impairment, and speech impairment) in the classroom for part at least part of the time.  It still wasn't the experience I was used to and I talked to the principal of the school.  This was when I found out that, along without having the funding to get enough aides to even remotely have kids in mainstream classrooms, there was no push for it.  Parents didn't want their kids in the mainstream classrooms, so they were always segregated.  It made me sad for all of the kids who missed out those special times that I had with Lauren.

 

Lauren was a big part of my life growing up.  I spent a lot of time at her house and out with her family.  One summer, they even let me stay there for a couple of weeks, accepting me as one of their own.  That's how I know Lauren's parents and sister are special - they look out for others as well.  They are some of the most caring people I've ever met and are the perfect family for Lauren.  I am so thankful everyday that they were brought into my life.  And the timing couldn't have been more perfect.

 

I am currently a Peace Corps Volunteer living and working in Morocco.  I'm not sure what's next, but I do know that I can't wait to get home and see the people I have missed.  Maybe I'll be able to surprise Lauren like I did for her 21st birthday!