There are certain days you never forget. The day you marry.  The birth of your children.  Another date I will never forget is September 10, 1987. Not because it was my 10th wedding anniversary but because that was the day we learned our nearly 1 year old son, Ryan, had tuberous sclerosis complex (TSC). Like most of you, I had never heard of TSC.  I was told it is a genetic condition – so I not only feared for the health of my infant son, I immediately thought of my two older sons.  Any diagnosis your child receives is horrid – but when they say “genetic” – it suddenly is magnified beyond belief!

For parents raising children today, whenever you have a question, you run to the Internet and find many resources to help you.  In 1987, we hit the library.  And we found little information on TSC and what we did find was decades-old research that spoke of institutionalizing your TSC child due to profound mental retardation, uncontrollable seizures, and even worse. 

We also found the National Tuberous Sclerosis Association (now the TS Alliance) and learned that this condition is characterized by benign tumors that can grow in many different organ systems.  Most common are the brain, heart, lungs, eyes, kidneys and skin.  We learned that individuals with TSC often experience varying degrees of seizure activity, Autism, mental health concerns and mental retardation and that TSC brings a wide spectrum of manifestations – from extremely profound to very mild.  We knew of no other family member with any of these manifestations and to our knowledge Ryan just experienced a genetic mutation causing TSC.  Ryan’s TSC has brought skin, brain and kidney tumors, seizures, Autism, ADHD and cognitive impairment.  The TS Alliance was a lifeline of objective information and a great support, helping us to stay on the leading edge of research and meet and become friends with many families who share the same bond.

As Ryan grew, he met nearly all developmental milestones on target; however, when the terrible twos hit they were terrible beyond belief.  And by the time he was three or four… they didn’t disappear… they magnified.    A growing boy with unpredictable and violent outbursts made family life challenging to say the least.  There were no easy answers with Ryan… our parenting techniques were by far the most difficult I had ever experienced but with hard work the outbursts disappeared and a kind young man emerged. 

When Ryan was 17 we went searching for a place for Ryan to succeed, to be physically and socially active… and we found it!  Special Olympics!  Ryan joined a basketball team that first winter and we knew we had found a perfect fit for the rest of his life. 

Ryan began competing in the Special Olympics all year long.  In 2010 he was selected to participate in the National Special Olympics Games in Lincoln, Nebraska.  This was a remarkable experience for him!  He traveled with his teammates and coaches via plane, stayed with them in a college dormitory and competed in the Pentathlon and 400m run.  He brought home several medals, a new found confidence… and a big smile! 

Each year Ryan competes in the State Summer Games.  You’ll find him once again on the track at Central Michigan University trying to bring home a gold medal this May!  Off the track, you’ll find him having a great time hanging out with his friends and the volunteers who make this all possible. 

As a parent of a special needs child, I would like to leave you with a few things I’ve learned through the years that apply to all parents.  1)  Trust yourself. You know your child best and you are your child’s best advocate.   2) Get help!  You are never alone and there are many, many resources available to you if you just seek them out.  Look everywhere:  Physicians, Educators, Universities, the Internet and Library, Service Agencies and most importantly – other families!  3)  Find a way to allow your child to find success.  Whether it is music, dance, art, drama, or athletics – each of us needs to find what makes us happy and successful.

The most important bit of “Mom advice” I would like to leave with you is one I am reminded of every time I travel by plane.  “Remember to put on your own oxygen mask first before assisting others.”  Take care of yourself.  Find time to relax and recharge.  Your children deserve a Mom who is strong, happy, rested and ready to take on whatever comes their way.

Picture – Track & Field teammates:

Ryan Groves (participated in 2010 Special Olympics National Games in Lincoln, NE)

Molly Hincka  (participated in 2011 Special Olympics International Games in Athens, Greece)

The post Parenting Against the Odds: Raising a Special Olympics Athlete appeared first on AKAMom Magazine.

AutisMate, a new iPad app from SpecialNeedsWare for those with autism, stands among the most respected and innovative options to help children develop communication and behavioral skills despite the challenges of autism. Individuals are given a comprehensive set of tools to navigate life with ease, providing for the lifelong learning, development and changing experiences of those across the spectrum.

While most autism apps on the market focus singularly on promoting one expressive form of communication, AutisMate recognizes the unique nature of every case of autism and works to first build comprehension on a personalized level to unlock a more varied set of expressions and needs. It allows children with autism along with their caretakers and teachers to easily import personal images, video, audio and other information into a visual scene-based platform.

To save time and effort, users also have the option of uploading videos, stories, and schedules geared specifically for autism from a vast content library. A GPS feature allows scenes to change according to the user’s location, making the software even more intuitive and applicable in real-time. This platform grows with the user and caters to his or her unique needs.

SpecialNeedsWare Co-Founder Jonathan Izak created AutisMate with his 11-year-old brother with autism in mind. He wanted to develop an app to help children like his brother communicate and learn tasks in the simplest way possible.

“Watching my brother grow up with such difficulty motivated me to create a tool for him and others that helps them communicate more comfortably and independently,” Izak said.

Co-founder Ankit Agarwal puts together the colorful puzzle pieces of SpecialNeedsWare to create an intuitive interface that promotes a user-friendly experience.

“AutisMate is groundbreaking,” Agarwal said. “It currently stands as the only augmentative communication app that integrates behavioral learning into a holistic approach.”

While other communication devices tend to offer unfamiliar and generic stock images to promote verbal learning, AutisMate simplifies the platform by enabling teachers and caretakers to define familiar scenes for the user and layer potential actions over an individual image.

Additionally, AutisMate acts as a reliable companion for caretakers. The user friendly platform effectively eliminates the often stressful task of trying to communicate with a child with autism. It enables a parent to spend more time nurturing, educating and enjoying their time with their child.

The research-supported app has already helped hundreds of users to fully express themselves and improve connections with their families. Many users have expressed their support for AutisMate and shared stories of success and progress. One testimonial that SpecialNeedsWare has received is from a mother of a 7-year-old boy with autism: “I recently used [Autismate to help my son] understand what would be happening at a hospital visit to have tubes put in his ears (a procedure he had done before and had gotten very upset).This last visit he was calmer and cooperated really well! Thank you so much for providing a tool that gives me a way to help my sweet, loving son find understanding by allowing him to ‘think in pictures’.” 

You can learn more about AutisMate at www.autismate.com. To purchase the app on iTunes, click here.

The post Research-supported autism app tackles behavioral and social challenges appeared first on AKAMom Magazine.