Book #17: The Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About the Extraordinary Highs and Heartbreaking Lows of Raising Kids with Special Needs
When magazine editor Denise Brodey’s four-year-old son Toby was diagnosed with a combination of sensory integration dysfunction and childhood depression, her life was flipped around. Trying to make sense of her new, occasionally hectic, life has been hard, but she’s found comfort with parents just like her. The ones who have the same chaotic life as her share how they cope on the hard days, and embrace the amazing days that come with raising a child with special needs. You’ll find solace and community in The Elephant in the Playroom.
Looking for some inspiration or maybe just struggling? Filled with commonsense advice, and a seemingly endless guide, you might just find just what you need in our 11th book, on our list of 30 days-30 books.
Ellen Notbohm, who also wrote Ten Things Every Child With Autism Wishes You Knew, teams up with Veronica Zysk to take the words “No, I can’t” out of your vocabulary. They have 1001 great ideas to help you find a new way to help teach and raise children with Autism or Asperger’s, and to help change that no, to “Yes, I can”. This book is a treasure trove of ideas waiting to be used, so why not try some out? You won’t be running out of ideas any time soon.
You don’t always expect to find much on a hog farm besides the usual tractors and mud and the animals.
Born on a hog farm in Davenport, Iowa, Abbey Curran spent more time with sheep than she did playing with the Barbie dolls as young girls normally do. Her clothing choices leaned more towards jeans and her parents never cut her much slack when it came to chores, the life of a typical farm girl. But for Abbey Curran, life was made a little bit more difficult when she was diagnosed with cerebral palsy at the age of two.
Despite her disability Abbey Curran was determined to succeed, and it was this determination that helped her become Miss Iowa in 2008, and to go on to compete for the title of Miss USA. As a woman with a disability Abbey Curran understood the difficulties young girls with special needs and disabilities faced, and she wanted to give them the opportunity to participate in pageants just like she had. The Miss You Can Do It Pageant was born.
Girls, and people in general for that matter, who are born with disabilities often have a hard time participating in normal activities sometimes. They don’t have the same opportunities as those without disabilities. The Miss You Can Do It Pageant allows girls age 5-25, with special needs and challenges, a chance to participate in a pageant. The pageant takes place in Kewanee, Illinois, and attracts girls from all over the US. Contestants can enter online at missyoucandoit.com until July 1st, where the first 50 to sign up and submit a money order and their photo, have their spot secured for the contest. The girls are given a real competition where they compete in casual wear, evening gown, and interview segments.
The pageant drew the attention of Ron Davis, who created a documentary that follows thelives of several girls as they prepare for the pageant. The documentary airs throughout July on HBO Family East and West and is available On Demand. This year the Miss You Can Do It Pageant celebrates its 10th Anniversary, and takes places on Saturday, July 27th at 5:30 pm.
One of America’s favorite pastimes is baseball. The Miracle League brings the sport to children and young adults who have disabilities. The idea for the Miracle League came about in 1997 when Coach Eddie Bagwell invited his team member’s sibling, who had a disability, to play on their team. The ball kept rolling in 1998 and the Coach continued to invite children with disabilities to play baseball. The first year produced 35 players. By 1999, the team expanded to more than 50 players. It was during this baseball season that the team knew they had something special and had to continue to grow; there was a need to open the door to other disabled children to participate in team sports. The Miracle League was formed and in April 2000, a fully accessible, custom-designed sports complex was open for business.
The complex was funded by a non-profit, the Rotary Miracle League Fund, Inc., whose objectives are to raise funds to build accessible complexes and to help bring Miracle Leagues across the country. The Miracle League was the first of its kind so it created a model of its own. The kids can wear uniforms, every player bats once an inning, players are safe on bases, all players score runs before the inning is over, and each team and player wins every game. The community comes together as “buddies” to assist players.
Since 2002, the popularity of the Miracle League caught the eye of local and national media attention. They were featured in local papers and television networks such as NBC, ABC, FOX, and other Atlanta affiliates. Nationally the Miracle League was featured on CNN, MSNBC, Fox Sports, and HBO’s Real Sports. Editorial pieces include People, Family Circle, Rotary International magazines, Paula Deen, TIME, Sports Illustrated, among others. The Miracle League also won many awards including the prestigious Martin Luther King Humanitarian Award and being inducted into The Baseball Hall of Fame in 2006.
There are 250 Miracle League Organizations across the country including Puerto Rico, Canada and Australia. To find out if a league already exists in your community or to start a league, contact Diane Alford Diane@miracleleague.com or Stephanie Davis Stephanie@miracleleague.com at the Miracle League World Headquarters located in Georgia, office 770-760-1933.
This is no ordinary league; they do extraordinary things.
Becoming a parent is the biggest responsibility a person can take on. It is a natural part of the parenting process to plan for and envision the future for their kids even before they are born. Sometimes life doesn’t go as imagined. Parents are given the news that their child has a special need. With this, come feelings of isolation and being alone and not knowing where to begin searching for support and assistance.
Diagnostic testing, specialty care, prescription drugs, therapies, assistive technology and accommodations, medical equipment, and other health-related services cause families financial hardship. More often than not, at least one parent has to cut back on working hours or quit their job to provide care to their child. There are many grant programs across the country that is available to assist families with alleviating the financial burden.
Kaufman Children’s Center compiled a list of grant sources to assist parents in securing funding for various therapies, medications, and equipment. The list includes organizations such as Easter Seals, Astra Zeneca, Children’s Charity Fund, and Believe in Tomorrow.
For a full list of available grants and programs, please click here to open the PDF.
All children deserve the chance to reach their full potential. These resources are designed to help kids with special needs and their families enhance their quality of life.
AMC Theatres and the Autism Society have teamed up to bring families affected by autism and other disabilities a special opportunity to enjoy films in a safe environment on a monthly basis with the “Sensory Friendly Films” program. Movie titles include Epic 2-D, Monsters University, and Despicable Me 2.
The auditoriums dedicated to the program have its lights up, the sound turned down and audience members are invited to get up and dance, walk, shout or sing. Families will be able to bring in their own safe or special dietary snacks, and no previews or advertisements will be shown before the movie.
The idea for the program began with a request from a parent with an autistic child for a special screening at AMC Columbia Mall 14 in Columbia, MD. More than 300 children and parents attended the first screening.
AMC Theatres now offers the program at many locations nationwide. These include metropolitan areas such as Philadelphia, New York, Dallas, Los Angeles, and many more. To see if there are such movie houses in your area, check AMC’s website for a complete list of nationwide theatres at:
Sports can be an integral part of the life of a special needs child. It fosters personal growth, exercise, builds confidence, and builds interpersonal and communication skills. Soccer is one sport that can help provide these building blocks. US Youth Soccer offers the TOPSoccer program, which is an outreach, community-based program for young boy and girl athletes with mental or physical disabilities. The disabilities include Autism, Down Syndrome, Muscular Dystrophy, Cerebral Palsy, sight or hearing impaired, and traumatic brain injury. Players are placed according to ability, not by age. Player development is the goal of this program rather than competition. According to the 2010 US Census Bureau report, there are approximately 56.7 million people in the United States with some form of disability, school-aged children aged 5 to 17 make up 2.8 million.
US Youth Soccer is the largest member of the United States Soccer Federation. US Youth Soccer is comprised of over 600,000 volunteers and administrators, and most of its 300,000+ coaches are volunteers. The organization spans across America making up 55 member State Associations; one in each state, and two in California, New York, Ohio, Pennsylvania, and Texas. TOPSoccer programs are already in place in some US cities. Contact your local US Youth Soccer State Association office to get involved. If the TOPSoccer program does not exist in your community and there is a need, a program can be created.
What did US Youth Soccer have to say about why America needs the TOPSoccer program?
“TOPSoccer was formed to perpetuate the US Youth Soccer mission statement which is, in part, “to foster the physical, mental and emotional growth and development of America’s youth through the sport of soccer at all levels of age and competition.” There are thousands of children with disabilities who need, and can be provided with, the opportunity to play soccer through the TOPSoccer program.”
Visit the US Youth Soccer website for more information about the TOPSoccer program, to find a local association, or for info to bring the program to your hometown.
Weighted blankets are often used to provide an additional sensory input for a special needs child and tends to be used as a soothing tool for sleep. They are also useful for teens and adults prone to stress. The theory behind the product is that the blanket provokes the release of neurotransmitters such as serotonin or dopamine much the way a hug would. They have shown benefits to people experiencing sensory integration disorder, anxiety, Asperger’s Syndrome and other similar conditions. The concept is broad enough that even those people who have no special needs can benefit from improved sleep quality or a decrease in stress.
Weights tend to scale with a person’s weight and height; there are products for infants at 20lbs (a 3lb blanket) to a 40 lb Queen weighted blanket for an individual of 200lbs or more. Manufacturers recommend that a blanket be measured by 10% of the person’s body weight plus 1lb – 5lbs.
Naturally, weighted blankets tend to run higher in price than standard quilts or bed covers because of the fill. Look for blankets made with polypropylene filler (small plastic beads or pellets) that are non-hypo-allergenic with evenly distributed weight. Many Occupational Therapists are familiar with such products and it would do well to consult with one before purchasing.
There are a surprising number of manufacturers that sell weighted blankets and other similar sensory products including the following:
“Advocating for your special needs child is one of your most important jobs. It can feel overwhelming and intimidating, but if you remember that you know your child — and his needs — better than anyone, it gets a little bit easier to fight the good fight.”
Abbi Perets and her husband learned quickly when their son was in the NICU that they needed to speak up for him. Now that he’s six years old and in kindergarten, there’s a lot that he can do for himself — but he still needs them to fight for him frequently. Here are six critical ways Abbi and her husband have learned to advocate for their son.
1. GET ORGANIZED
Even if every other aspect of your life is cluttered and chaotic, you must create an organized medical file for your special needs child. You really do need every piece of paper that relates to his disabilities, services, needs, and so on. Keep the current year’s papers readily accessible in print and digital format, if necessary. Make a monthly stop at an office supply store and use their machines to copy and scan all your information quickly and efficiently. Commit an hour each month to reviewing your files and ensuring that your paperwork is in order.
2. EDUCATE YOURSELF
When you have a child with special needs, you have to educate yourself on a host of topics other parents never encounter. It’s unfair — but they don’t get to hang out with your awesome kid, so it all evens out. At any rate, you need to learn about your rights, what you can and can’t get for your child, any new therapies that might help your child, and lots more. Be willing to learn, ask questions, and keep asking until you understand. You don’t have to blindly agree to what a doctor, therapist, or school official tells you — you know your child better than anyone else. Continue reading "6 Ways to Advocate for Your Special Needs Child"→
In the two years since the debut of the iPad, schools have found how beneficial the new technology can be to children with special needs and students with learning disabilities. A student with autism can let his teacher know that he is hungry and what he would like for lunch. Touch screen apps can help kids with fine motor difficulties, while eBooks let students read at their individual reading levels without worry of ridicule from classmates. Many schools across the country are purchasing iPads for their students with special needs and learning disabilities, and are finding that students are more motivated and more self-confident using this technology, despite their educational challenges. Continue reading "Tablets, iPads Revolutionize Education for Special Needs Kids"→
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