All posts by Joan Reffner

Tikvah Layeled’s 24 Hour Helpline Provides Immediate Support for Parents & Caregivers

Tikvah Layeled Help

Life doesn’t take a break. Things come up in our lives 24 hours a day, every day. Problems don’t wait until it’s convenient for us. That’s why Tikvah Layeled provides 24 hour support to caregivers and parents of children with cerebral palsy.

There are many facets to the disorder associated with CP. Some are not always evident and care for a child with CP can be challenging and confusing at times, but parents, and even caregivers, need to know they are not in it alone. They can draw upon the years of experience provided by the caregivers at Tikvah Layeled.

Parenting is difficult enough, but for parents of disabled children it can seem like there is nowhere else to turn. For the dedicated caregivers at Tikvah Layeled, they understand this. Advice, compassion, and a sympathetic ear, can go a long way in providing support in times of need. Caring for a child that is suffering can be a painful experience for any parent, but help is available around the clock, all year round.

When questions come up, whether they are related to therapy or to the specialized equipment that is used to assist children with CP, referrals, information and advice are all available. In addition to the many counseling sessions, therapy and fun activities Tikvah Layeled regularly provides children, sometimes a phone call is all it takes to answer questions or advise a parent who is feeling overwhelmed. Tikvah Layeled provides that support around the clock. Sometimes all we need is a word of encouragement.

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Rehab Equipment That Changes How We Age

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While we may think health clubs are solely the domain of the young and fit, they are actually anything but. People of all ages have returned to the gym so that they may lead healthier, longer lives. This includes 43 percent of the nation’s seniors. While this is certainly good news for gyms wishing to increase their memberships, as well as for the seniors themselves, there are some challenges to this seemingly win-win situation. One obstacle is the fact that most exercise equipment found in gyms was designed for people aged 18 to 35. They are often high impact machines that offer high resistance and were made to build young muscles.

To serve an aging population, low impact and low resistance equipment is needed to ensure that elderly gym users can exercise safely. Since falls are a main contributor to injury in seniors, any exercise that strengthens muscles and improves balance is desirable. To address this issue, companies like HUR, a maker of health and fitness equipment, uses their patented and award-winning exercise equipment to help seniors get fit and stay that way. Using smart card technology, HUR machines record activity and provide feedback to the user so they can improve and measure their progress. These machines also utilize low-impact technology that offers close to zero resistance, which enables weak or injured people to recover faster and strengthen muscles quicker.

This type of exercise equipment is changing the way we age and helping all of us live longer and healthier by improving the quality of daily life.

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A Teen Carries his Brother 57 miles to Raise Awareness for His Disability

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Hunter Gandee came up with the title of “Cerebral Palsy Swagger.” It’s an amusing and quite understated title that doesn’t quite do justice to the 57-mile trek he undertook this past June to help raise awareness for the brain disorder. Leave it to a modest fifteen year old to downplay the his role in this admirable accomplishment.

Hunter was inspired to undertake the journey by his little brother, Braden. Braden, who suffers from CP, went on the journey too, strapped to his big brothers back. It’s been a means of travel for the eight-year-old his whole life, so Hunter decided this was the way he would complete his three-day walking campaign.

The trip was well-documented on social media as the pair of brothers made their way across southern Michigan. Plenty of well-wishers, friends and family showed up and voiced their encouragement. Local fire and police departments were more than happy to provide special escorts as the brothers made their way through their towns.

The trek began in Lambertville, MI, where Braden attends a local school. Over 500 hundred of his classmates accompanied them on their first steps. The journey ended in Ann Arbor at the University of Michigan Rehabilitation Center where Braden underwent a previously-scheduled surgical procedure.

Despite the modesty of his “Swagger”, Hunter was moved by the journey he and his brother made. The positive attention and support they received was more than he imagined and it gives him hope that his generation can do more to raise awareness of cerebral palsy and better understand those who live with it every day.

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Not Letting it Get in Her Way – How Jewel Kats Turned Her Disability Into a Strength

 

Ditzabled PrincessJewel Kats is a lot of things, disabled is just one of them. It’s what she does with her disability that is so inspiring. She takes it and turns it into a source of inspiration for others. Her web comics series, DitzAbled Princess, has steadily closed in on 200,000 hits since it launched in early 2013. In the strip, co-created with Katarina Andriopoulos, Jewel in comic character form, shares her observations about her life with readers, many of whom are disabled. Her audience, disabled or not, enjoys her quirky take on life’s many trials and tribulations and the comic team have amassed enough strips for a collection, DitzAbled Princess: A Comical Diary, published by by Marvelous Spirit Press.

In the strip Kats shares her life with complete strangers and provides inspiration and a positive role model for those, particularly women, with disabilities. She is not immune from taking jabs at herself either, such as enjoying the perks that come with her disability (getting out of housework and flirting with her paratransit drivers). That’s the lighter side, of course, there are many times when Kats has been made to feel like less than a person by ignorant, if well-meaning, strangers.

Kats is a self-described former teen runaway who has in fact come a long way as an advocate for the disabled, especially teens, who may feel a lot of anger and resentment towards their disability. She wrote a syndicated advice column for disabled teens that enjoyed a six year run in Canada. She also authored seven books before her interests turned to comics. Whatever her current passions and creative pursuits are now, whatever they maybe in the future, Kats will continue to thrive and inspire those to overcome their disabilities, and like her, turn negatives into positives.

Why Shouldn’t These Children Just Feel “Regular”?

For children born with cerebral palsy there are many challenges they will have to overcome. Physically, the child with CP may have difficulties with simple motor skills. The child may have trouble with speech, mobility, holding utensils — even feeding themselves may present obstacles for them on a daily basis. Cerebral palsy is a condition the develops either before or at birth and results from damage to the brain. While some mental impairment is not uncommon, many children are fully aware of their disability. They know that they are different from other children and this can become more pronounced as the child grows older and comes into contact with the outside world. It is important then that these children are made to feel accepted and loved by parents, teachers, caregivers and other children. This acceptance will better equip them for the challenges they have been presented with in life.

When a child with cerebral palsy feels that they are just a regular kid, this will boost their confidence and self-esteem and better prepare them for the future. Though they may get frustrated by not being able to perform the same physical activities as other children, they are as capable in many other ways, and they can achieve anything they set their minds to. Encouragement, support and love will make this possible.

New Tax-Friendly Savings Plan for Families of Children with Disabilities

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The Achieving a Better Life Experience Act, known as the ABLE Act, was designed to better help families care for family members with disabilities. The bill, signed into law by President Obama, allows families to create tax-free savings accounts in order to help them finance the costs incurred when caring for family members with special needs. ABLE is similar to educational savings plans that allow families to save money for college tuition. It is estimated by the National Disability Institute that there are 58 million individuals with disabilities in the US and ABLE will help them save money should they qualify for an account.

Once ABLE is fully enacted, families will be able to save money in accounts without having to pay taxes on the earnings. The way the previous law was set up, there was a limit on the amount that families could accrue in savings before losing certain federal benefits. Typically, if a family saved more than $2,000 in a savings account they were at risk of losing public benefits like SSI and Medicaid. This discouraged them from saving for future medical expenses. The new law will remove this obstacle so parents can deal with the long-term healthcare needs of their children.

While the law may eventually differ by state, the plan will cover any child that was disabled before the age of 26 and will not affect Medicaid eligibility. For parents of children with disabilities like cerebral palsy, this will help them plan for future care which can include expenses like housing, transportation, assistive technology, personal support services and even legal fees.

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A Canine Companian for Children with Cerebral Palsy

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Service animals have been helping people with disabilities for many decades. From guide dogs that assist the visually impaired to companion animals that provide emotional support, this service has helped people with both physical and intellectual disabilities and impairments cope with the challenges of everyday life. Children especially can benefit from the help of service animals and children born with cerebral palsy are no exception.

Cerebral palsy is a neurological disorder which affects muscle coordination and body movement. Many sufferers have difficulty walking, talking, writing or feeding themselves. Mental impairment often times accompanies these physical challenges which creates even more difficulties for these children. Using a canine companion to assist a child can help them become more independent, which will help improve their self-esteem. With a little help from their four-legged friends, kids with CP can better deal with everyday tasks. A dog can assist a child with mobility — they can literally lean on their canine companion to steady themselves — and these animals can be trained to help children regain their balance. Canine companions can also be trained to bark and alert family members when the child is having a seizure during the night.

As any pet owner can attest, their animals often have a calming effect on them. This can help with anxiety or panic attacks and canine companions do the same. One parent of a child with CP has used crowdfunding as a way to raise money for the training of these animals so that more families have access to the services of canine companions.

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A Mom’s Message for Acceptance of Children with Disabilities

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For a 37-year-old mother of a child born with a rare genetic disorder, strength comes in helping people understand that these children are not so different from others. Despite having to deal with a difficult pregnancy and a daughter given little chance of survival by doctors, Lissette Lent learned to be hopeful as she has coped with her daughter’s disabilities.

As a parent of a disabled child, Lent saw firsthand how other children, even parents, reacted to her daughter, Maggie Hope. Lent wanted to send a message of acceptance that would resonate with kids and adults alike. To help parents and teachers educate their children how to deal with differently-abled children, Lent wrote a children’s book, We’re Not So Different After All and launched a Kickstarter fundraising campaign to help publish it. Lent hopes that someday the book will be common in libraries of elementary schools across the country.

Lent feels that a lack of understanding is the core to the problem and not insensitivity. She feels education is an important step in giving people the tools they need to deal with disabled children. She wants to help start conversations and to let kids know that it’s OK to ask questions about disabilities so that they can understand that these children are not so different from themselves. She also wants to give disabled children, and the parents who love them, hope and strength in overcoming these challenges.

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With Therapy and Loving Care, Children With Disabilities Thrive

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Children born with disabilities face many challenges in their young lives. Being born with physical or cognitive impairments puts them at a great disadvantage in terms of mobility, development and learning. Through loving care and physical therapy, however, these children will not only function in their everyday lives, but thrive as happy kids who will grow and mature into independent adults.

There are many types of therapy available to children with disabilities. Physical therapy is an important aspect of treatment. This form of treatment is designed to help the child develop movement and increase motor skills. It can help with posture and balance and help strengthen muscles. It can improve the child’s coordination which is a big challenge. Speech and language therapy helps the child communicate with others, which is important for development. Play therapy helps the child develop skills while participating in fun activities and occupational therapy helps the child perform everyday tasks so they can function to the best of their abilities.

As important as these types therapy are for children with disabilities, there is no substitute for the loving attention of parents, educators and caregivers. Emotional development is as important as physical development and a combination of therapy and loving care vastly improves the child’s chances at becoming a happy, independent person.

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Teaching Children with Cerebral Palsy to Write Well

For children with cerebral palsy, handwriting can present a challenge. The decreased level of coordination they experience can make it difficult for them to form letters, and weakness of hand muscles makes writing tools harder. As frustrating as this can be, with the help of parents, educators and caregivers, handwriting can be accomplished in a fun and educational way.

Strengthening exercises can help with the child’s grip. Encouraging proper posture will also assist with control and special larger writing tools will allow for better grip. Adults can also help the child learn to write well by placing their hand over the child’s while they write, guiding them through the process. As they make progress, this guiding hand can be reduced back to the wrist, then the elbow until the child is able to write the letters independently.

Visual motor skills can be developed by having the child form letters out of clay or other materials so they will be better able repeat the patterns in writing. Tracing existing patterns has also proven effective in helping children learn the shapes of individual letters. Many children with cerebral palsy experience visual impairment as well and may need to be given extra time to practice with smaller writing tasks.