thespecialparent.comSpecial People Parenting Special Kids

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.

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There are many children with a diagnosis of ADHD, some concurrent with other issues. A new study from the American Heart Association however is showing that a basic test should be done on our kids taking stimulants for their ADHD.

The American Heart Association believes that all of the estimated 2.5 million children taking ADHD medications should have an EKG to rule out problems. This test should be done on children both who have been taking the medication for some time as well as those who have just started. No one believes at this time that the medication is causing heart disease. It is believed that somewhere in the neighborhood of 1 in 50 of children being treated for ADHD may have a previously undiagnosed disease. For some reason children with ADHD are 3 times more likely to have heart problems.

This MSNBC/Today Show video is well worth watching if you have a child taking ADHD meds. Please take a minute to point it out to a friend who has a child who is taking these meds if yours isn’t. It’s information that should get out there. While it’s not reason for panic, it is most certainly reason to check with your pediatrician or prescribing physician. An EKG is an inexpensive, non-invasive procedure that takes only minutes but could absolutely save a life.

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Governor Palin,

Congratulations to you and your husband and happy birth day to Trig Paxon Van Palin! With that, we take this opportunity to also welcome you to the amazing country of Holland. You’re very familiar with the Italy tour (having four older children) and I want to assure you that your time in our little part of the world will be very different than your tour of Italy but as your statement already seems to recognize it will be no less thrilling albeit with different challenges, milestones and achievements.

God has indeed entrusted you with this beautiful soul. It speaks volumes because it takes a truly special person to be a special parent. That’s not to say we’re a bunch of saints by any stretch. We all have our share of foiables. Just by way of example, as a rule special parents suffer from depression at a higher rate than parents as a general category. We won’t all have the same foiables but we all share one thing in common – a fierce love of our child and a determination to maximize their potential for success and independence in the future.

You’ll find that it’s not always so easy to achieve that. There is the medical labyrinth, the educational labyrinth and the governmental labyrinth. Oh and the stigma labyrinth, the hyperactive worry and oh never mind. In the end game it all pales in comparison to what joy you are having right now holding that precious bundle you gave birth to.

My mother often said to me – much is expected of those to whom great things are given. I certainly hope you’ll abide by that. Being the Governor of Alaska gives you an incredible opportunity to advocate for your son and the greater disability community. To often those in government really don’t understand why changes are required. You will be in that unique position to not only understand the needs of the disability community better than most but more importantly, you actually have a position that gives you the ability to affect change with your access so many of us could only hope for.

Of course it’s only conjecture at this point that Trig has down syndrome but your statement makes it clear he has some special needs.

Trig is beautiful and already adored by us. We knew through early testing he would face special challenges, and we feel privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives. We have faith that every baby is created for good purpose and has potential to make this world a better place. We are truly blessed.

We certainly wish you all the best and hope you’ll lean on those of us who have already started on our journey in Holland for the love and support we will gladly give. Trig, you are already blessed, little angel, to have parents who recognize what a privilege they have in being your parents. I’m pretty sure your parents are right that you have great potential to make the world a better place. For now, just rest easy knowing you will be loved by not only your family but the greater family you’ve just become a part of and don’t even know it yet.

Much love to you and your family.

picture courtesy of KTUU TV Alaska

Thanks to Michelle to pointing out this beauty’s birth!

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I found this blog because the mom, Nancy found me. What a blessing that was!! Nancy is mom to Jack. Jack is a child who has a visual impairment which leaves him legally blind. I’m sharing with you an comment I left on one of her blog posts because I felt the post was that powerful!

Wow! Thank you so much for this honest accounting of what’s truly a very real part of being a parent to our special kids! The reality is we all want to minimize the stigma any of our kids get subjected to whatever their disability. Not wanting your son to use a cane is just a tangible symbol to what we all are worried about – our kids being treated the way everyone else is.

I’ve added you to my blog because I think parents will do well to read another parents’ very honest perspective on parenting a child with special needs. Thanks for being so willing to share with such candor and honesty what so many of us go through but might otherwise be afraid to say.

Please do us all a favor and go visit Nancy’s website and this particularly great post by clicking here.

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…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.

Students with needs discover their talents
Program in Mamaroneck, NY helps teens with a variety of special needs plan for their futures to ensure they have the basic life skills they will need after leaving school

Students raising money to help Gilbert teacher
Students are fundraising to help special education teacher Juan Reyes offset the approximately $600-700 annually he goes out of pocket to provide for his students with special needs.

Synagogue to hold service for special needs children
Syangogue holds service for special needs children and their family. Serving West San Fernando and Conejo valleys

Disability Advocates want name change for Missouri state agency
Advocates lobbied at the Missouri state capital to have the words mental retardation dropped from the state agency name

US Airways helps special needs dogs
US Airways is helping to train service dogs with their puppies in flight program

Family shocked by MD’s speed over 11 year old
Muscular Dystrophy’s impact on an 11 year old boy and his family

Three documentaries put faces on autism
Realistic portrayals of autism hit the big screen with Autism Every Day, Autism: The Musical and Her name is Sabine

Little Horizons Produces Early Childhood Education DVDs for special needs children
Fun with the ABC’s allows special needs children and able bodied children to have fun side by side while learning their ABC’s

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Today is World Down Syndrome Day. Did you know that today was specifically chosen because Down Syndrome (trisomy 21) is caused by a triplication (3) of the 21st chromosome (21) hence 3/21. Brilliantly subtle if you ask me. I learned this by reading an article written by an Australian Senator Sue Boyce. As the mother of an adult daughter with Down Syndrome it’s understandable why this is an day of interest to her. It is a well written piece worth a read. Please check it out by clicking here.

Unfortunately it is true that for every well informed individual in power, there must be someone in another position of power who attempts to undo that goodness and intelligence with small mindedness. Apparently University of North Carolina’s Professor Albert Harris is that opposite force to Senator Boyce’s sound voice. I am guessing you are all wondering on this special occasion remembering Down Syndrome why I would include an article such as this. It’s just this very reason that I’m including it. You need to read it as much as you needed to read the one by Senator Boyce. Click here and read it.

We’ve come a long way. It’s not that many years ago where a World Down Syndrome Day would never have stood a chance. For all that progress, we have an incredibly long way to go. Make no mistake that just like Keith P. Jones said – Disability is the final frontier in civil rights, the last great struggle. Professor Albert Harris’ irresponsible statements in a science class prove that very point. Celebrating days like World Down Syndrome Day to me is summed up wonderfully by Senator Boyce:

The theme chosen for this year’s World Down Syndrome Day is “Aim High Enough”.

It’s from a piece of advice that an old villager gave Langdon Down and that he passed on to his medical students: “My lad, you take your aim; be sure you aim high enough. That’s the thing – aim high enough.”

As a society, we owe it to ourselves to ensure that we are never satisfied that we have aimed high enough in supporting people with Down syndrome into the mainstream.

For more information you can visit the National Down Syndrome Society

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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!!!

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…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.

School’s Basketball team adds special needs children
Middle School Basketball team in California shows what the true meaning of sportsmanship is with inclusive basketball team

No Dental Care for Special Needs Patients
Adult special needs patients in Cork, Ireland are going without even basic dental care because of the lack of anesthesia services

Profile: Melissa Piotrowski teaches music to special needs students
22 year old Melissa Piotrowski takes a love of music and shares it with special needs children

11th Berkshire Disability Day planned
Event is a day of celebration and education to increase community awareness of the accomplishments of those with diverse abilities. Showcase of available services also planned.

Book transports child with special needs
Photography teacher Joe Baltz has his students create a 16 page book starring a child with special needs.

Alzheimer’s, Down’s link sheds light
Researchers at the Byrd Alzheimer’s Center and Research Institute say they have recently learned some important new things about the link between Alzheimer’s disease and Down’s Syndrome

My baby, right or wrong
Woman chooses not to test unborn child for Down’s Syndrome and the reasoning behind her choice

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…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

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Brain injury awareness month

March is Brain Injury Awareness Month. Not all of our children are born with special needs, some of them develop them in relation to unfortunate circumstances. Some of these circumstances are as unavoidable as they were unfortunate. Others are all the more unfortunate because with education and safety measures could have been prevented. The Brain Injury Association of America through the Brain Injury Awareness Month hopes to be a part of that education process.

According to the CDC, a traumatic brain injury (TBI) “is caused by a blow or jolt to the head or a penetrating head injury that disrupts the normal function of the brain.” The top three causes for TBI are

• Falls – 28%
• Motor vehicle-traffic crashes – 20%
• Struck by/against events – 19%

Many of these events might be preventable with the proper education about safety. I grew up in a time long before seatbelts were mandatory, car seats were standard, or kids wore helmets when riding their bicycles in the neighborhood. According to the Journal of Head Trauma Rehabilitation rates of TBI related hospitalization have declined nearly 50% since 1980. This can be attributed to injury prevention programs and laws requiring safety devices such as car seats and helmets.

The sad reality is that traumatic brain injuries (TBI) in children ages 0-14 whether mild or severe contribute to 435,000 emergency department visits annually according to the CDC. Of those 37,000 have a TBI significant enough to warrant hospitalization and over 2600 of those end in death. Traumatic brain injuries contribute to a substantial number of cases of permanent disability annually. Helmets.org says that anywhere from 45 to 88 percent of cycling related brain injuries could be prevented with helmet usage.

The Brain Injury Society posts these facts about head injury:

• Two million head injuries occur each year in the United States. Brain injury causes between 70,000 and 100,000 deaths each year.
• 500,000 people will require hospitalization each year as a result of brain injury. Every year 70,000 – 90,000 people will suffer life long physical, intellectual and psychological disabilities as a result of their injury.
• Brain injuries are the most frequent reasons for visits to physicians and emergency rooms.
• A brain injury occurs every 16 seconds; a death from head injury occurs every 12 minutes.
• 7,000,000 head injuries occur annually in the United States
• 1 in every 220 people in the US is suffering from the effects of a head injury
• A severely injured person with a brain injury typically requires between 5-10 years of intensive rehabilitation with long-term follow up.
• Brain injury kills more Americans under the age of 34 than all other causes combined and has claimed more lives since the turn of the century than all United States wars combined.

Given the very serious consequences of brain injury it’s easy to see why education and prevention are so very critical. The changes that occur with brain injury can be significant. The Brain Injury Society lists the major symptoms which can vary greatly. Some depends on where the injury is and the degree of injury. They are:

1. Cognitive impairments: May be very mild to exceedingly severe. They include memory deficits (short or long term), difficulties with concentration, slowness, thinking, attention, perception, communication, reading, writing skills, planning, sequencing, and judgment.
2. Physical impairments: Speech, hearing, vision, and sensory impairments, headaches, dizziness, vertigo, lack of coordination, spastically of muscles, paralyses to one or both sides, and seizure disorders are often seen.
3. Psycho-Social/ Behavioral/ Emotional Impairments: Such impairments include fatigue, mood swings, denial, self-centeredness, anxiety, depression, lowered self-esteem, sexual dysfunction, restlessness, lack of motivation, inability to self-monitor, difficulty with emotional control, inability to cope, agitation, excessive laughing or crying and difficulty relating to others.

There is no cure for traumatic brain injury, only correct rehabilitation and development of compensatory skills, sharpened strategies and heightened techniques for the traumatic brain injured recovering individual.

Living with Katherine I know from each of these issues. While Katherine’s injury was not a traumatic one but rather an acquired one (from a stroke) I can tell you that the devastation a brain injury holds for not only the person who has one but the family and friends who are likewise affected. It is astronomical. Katherine’s injury is from birth so while devastating, maybe it’s not quite as devastating as dealing with each of these issues and their impact on someone who previously was otherwise unimpaired.

Hopefully you all will take the time to check out both the Brain Injury Association of America’s website information for Brain Injury Awareness Month and the Brain Injury Society.

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