Stories of Hope

JAPSROCKS - DEFYING AUTISM

On 22nd December 2007, a bouncing baby boy was born in the sunny hours of Kisumu town - Kenya, he was named Daryle Jason Ochieng Audi (JAPS). In April 2011, the sad news that he has AUTISM (a disorder that affects social and communication skills) hit to the core and turned around his family's life completely....but alas!...he has refused to allow "that condition" to get in his way...if a 5-year old can defy autism, what stops the rest of us from tackling every little situation that comes our way...I will share Japs story every week because he simply ROCKS the universe. Follow his journey of life with autism.

Karen Nancy
Mombasa, Kenya

My Miracle

May 20, 2006 I was blessed with an early but beautiful daughter who I named Ahijah. My sister became my nannie and life was getting back to normal. From the beginning she struggled sleeping at night. Because she spent so much time in the beginning of her life in the neonatal ward, I was advised to have some music lights on for her to fall asleep to create a familiar environment. Things seemed normal and she began to grow as any baby would.

At 3 Ahijah was still not speaking, she was pointing at objects that she wanted. She would scream whenever loud noises or voices (talking or laughter) were in ear shy. At 4 she started twirling, echoing and the most challenging for us head butting. The triggers were all different, but the reaction of running into a wall, sitting on the floor and banging her head or running into me (head first) was the same. My sister concerned for her niece encouraged me to see pass my denial and seek professional assistance. I will always be grateful to her for saying what others would dance around, “Nicole there is something wrong, but you are not alone!” Ahijah was diagnosed with autism when she was 4.

Ahijah still has a hard time with some social skills and can be very emotional. Often extremely sensitive to others she does not pick up on social cues, thus she is not a defender of herself but of others. Ahijah has a passion for art, music, singing and dancing. She loves using the laptop and her iPad she is very loving. As a single mom I try very hard to create an environment of consistency. My family could never imagine our lives without this very special little girl; she is a burst of sunshine. Have faith, and don’t live in denial.

Nicole Bowen
Las Vegas, NV

Racing With Autism

To look at my son Austin, you wouldn’t think he is any different than other 14 year old kids. Spend time with him in a school setting and you will see he is going to have a lifetime of struggles ahead of him …he has Autism. Along with this major disability he also has fine motor skill issues packaged with high anxiety levels. We all know school is tough enough when you are a teenager – I can’t imagine what it must be like for him on a daily basis. He is continually picked on, teased and ridiculed while at school. Everyone has heard the saying “kids are cruel” and after witnessing what Austin has to go through everyday, truer words have never been spoken. To help Austin try and “fit in” we attempted various sports and activities, anything he would be good at or at least enjoy. Everything failed miserably. Then one day we received a flyer in the mail for an ‘arrive and drive’ go-kart program from Goodwood Kartways which was 20 minutes from our house. It took several weeks of convincing but Austin finally decided to try it. Then aged 7, my son sat in a go-kart for the very first time and for the very first time in his life I saw he was genuinely happy. When he left the grid for the first time I remember hoping that this would work and we would find something he enjoyed. It didn’t matter to me if he was good at it I just wanted to be able to give the kid something he hadn’t had in his short life….acceptance. He finished eighth that day but retained a smile for days afterward. Incredibly that was the only time he would miss the podium all year. He finished the season third overall against kids that were four years older than him on average. Since then he has gone on to win 3 championships and is has become one of the best racers in Canada. As Austin says...Just because you have Autism it doesn't mean you can't do great things.

Jason Riley
Uxbridge, Canada

My little boy, Tino.

Tino is usually a happy little 4-year-old boy. He didn't show any signs of autism until he was about 2. He would rock on the couch, get caught up in movies, wouldn't talk or show much interest in communicating, and had problems falling asleep at night. I didn't know what autism was then, so I didn't know what to look for. I wasn't exactly sure what was wrong with my son, if anything. I thought maybe he was just going to be a late talker.

Over the next 2 years, Tino's symptoms got worse. He started hand flapping, jumping, lining up toys and objects, sorting foods by color, and became obsessed with animals and books. Right before his 4th birthday, I decided to make an appointment with the local early intervention to express my concerns about Tino's speech delay. There, I was asked if my son had been tested for autism.

At first I was terrified. Not for me, but for him. I remember crying worrying about how this world would treat him, or how tough it is going to be for him. It has only been 6 months since he was diagnosed, but I can honestly say that I have learned to look at the positive side of things.

Autism does not define my son, but is only a part of who he is. He still has obsessions with animals, and can probably name all of them, but that's what makes him my little Tino. Autism has its ups and downs, and not every day is a good day. But I like to think that's what makes those good days and sweet moments so special.

Tino is usually a happy, very affectionate boy. Despite having autism, he loves to cuddle, give hugs, be tickled, laugh, and sometimes give kisses. Kisses are pretty rare with him, so when he does give them, they are that much more special.

Brenda
Eugene, OR

The Night The Stars Aligned, Magic Happened

It was a Sunday night under the lights in Windsor Stadium when the stars aligned for a fun battle of an INARIA Division All Star Team of Players with Autism from the Windsor Essex County Special Stars Soccer League who played a game of soccer against a pro soccer team named the Windsor Stars. Laughter and fun was the name of this game. It was exciting, fun and thrilling. Everyone of the 300 fans in attendance were cheering crazily and having a great time. Pat Prestia was referee of the game and was calling all kinds of crazy penalties against the Windsor Stars while laughing and having fun. The Windsor Stars Coach Steve Vagnini and his whole bench of players were laughing and yelling to me Patrick Roberts president of the Special Stars how much did i pay the referee, we all laughed.The CBC Windsor TV reporter Lisa Xing said she was leaving after about 10 minutes from start of game. She stayed for the entire game. She said she was having too much fun. Players were heard yelling excitingly this is the best day of my life and can we do this next year. Respect and compassion was the utmost with the Windsor Stars who were having so much fun as well that they were saying as they were leaving the field we got to do this every year. The game ended in a wonderful 6-6 tie. Every player got their jersey's signed by all the players. I had a player who didn't really want to play in the game before the July 28,2013 night, but turned out that he was having one of the best days of his life. They say with Autism kids that things are better with same routine, but I say push their boundaries and comfort zones so they can realize that they too can have so much fun socializing in areas they have no control of and experiencing what life has to offer. When stars align wonderful things can happen, Thank you Windsor Stars.

Patrick Roberts
President
Windsor Essex County Special Stars Soccer League

Patrick Roberts
Windsor, Canada

Inspiring!

The first 11 years of my son's life were filled with struggles, fears, doubts and so much more. What was wrong with my little boy? We were told we were bad parents, didn't discipline enough, disciplined too much and the list goes on.
A caring friend (who was the principal of my son's school) suggested we have him tested for Austism. Testing was the best decision we made. Ryan was diagnosed with Aspergers and our world changed. We weren't bad parents! We now had a name and some direction on how to help our son.
Ryan knew he was different; we told him he had Aspergers. Once we all knew, we could work together to help him. We started meds to help behavior and organizational skills difficulties. There were rough times. It hasn't been easy. He spent all of 8th grade scraping by with grades because he was watching his friends and learning social skills. He has worked hard...he is now 17 and will be a senior in the upcoming school year.
He is second in command of his schools JROTC program and has plans to join the navy after graduation. Everyone knows he has Aspergers.
He has a close group of friends who "have his back". They say he is wierd, but that's ok and it's ok with Ryan that they describe him this way.
We have learned that his brain works differently. We learned how to communicate with him. He is the light and joy of our lives. Some people think he is disrespectful, but it's his candid way of expressing himself. He understands empathy, but doesn't have much of his own. He always stands up for the underdog. He says there was no one to stand up for him and he wants to change that. He has his driver's license and took his first solo road trip this summer. All his meds have been discontinued.
For all the parents/families out there, there is hope. Be diligent and "fight" for your child. Your know them best, trust your instincts! There is light at the end of the tunnel!

Sherry
Bell, FL

Our amazing little guy

Aiden was diagnosed with autism on his 4th birthday; concerns came about the time when he was still a toddler,flapping his little hands all too often as time passed we realized he was not speaking very much, at nights he would wake up crying and screaming for hours at a time, some times running up and down the hallway as if he was looking for something that would give him comfort and relief, we are very thankful he has not had any meltdowns such as those in almost two years now.

Aiden still has a hard time with his social skills and does not do well around crowds but he loves the outdoors. There are only certain foods he will eat, no two days are the same for him but we dare not change anything about his daily routine.

Aiden has a passion for music, singing and dancing, he is musically inclined so its unbelievable the things he can do with musical instruments, loves using the desktop and his I-pad, he is very loving, tells us all he loves us everyday, says his prayers every night and loves to be tickled, he makes great eye contact when he wants to and he’s not to busy playing. He still has his moments but for the most part he is our little sunshine and we would not change anything about him because this is who he is.

Aiden is almost 5 years old; he will be attending PPCD classes in school for the 3rd year in a row, he has been blessed to have a teacher with so much patience, love and determination to help him learn. Aiden even started riding the bus home from school this past school year and he loved it.

We understand that his journey has just begun and he will be having many other goals to meet in his future but with family love and guidance there will be nothing to hold him back, so for all the parents out there dealing with Autisum, sleepless nights or meltdowns keep the FAITH, have love, understanding and PATIENCE.

Mary
Devie, TX

It was like someone flipped a switch

Our son was a normal happy child when he was little. He played with other children, laughed and loved to be hugged. When he was 5 and started kindergarten the teacher started to notice behavior problems. They progressively got worse and he stopped playing with other children and started obsessing. He no longer wanted hugs. Through the next few years he withdrew, became very anti-social and started throwing huge temper tantrums. The doctors first decided he was ADHD, OCD, Severe Anxiety. He started having issues paying attention and became disruptive. Around 8 years old he was diagnosed with Asperger's syndrome. We had an MT a TSS and he was on medication. None of it seemed to help much and we thought our happy little boy was gone forever. We couldn't take him shopping with us, he would climb the racks, run off and make a huge scene. The worst was listening to people whisper that we needed to get control of our child or he is a bad boy. One day our daughter overheard a remark someone made and simply turned around and said my brother is Autistic and walked away. I was extremely proud of her. We spent years with MT's, TSS's, counseling, fighting for an IEP and medications thinking we were never going to get anywhere. When he went into 9th grade I feared the change in school and schedule would set him back drastically. The beginning of October he started to loosen up a bit and then out of the blue he told me he had a girlfriend and he wanted to take her to Homecoming! I was shocked and almost didn't believe him. All of a sudden his awkwardness and his anti-social behavior were getting less. He kept making progress. He was making friends and doing well in his classes. He joined the lacrosse team with his older brother! Our son was back!! It was like someone flipped a switch when he was 5 and turned him off and when he was 14 they turned it back on. He was discharged from MT and TSS services.

Michelle
Lancaster, PA

a special bond

I used to work in a residential home for adults with autism. I had a special bond with one of the individuals Rachel. She had the heart of gold and a smile worth a million laughs. Rachel had another challenge besides being autistic, she was also nonverbal. Rachel and I connected right away and I took every shift I worked to give her that extra time that she looked for. I helped her overcome some challenges she faced so that she would feel more comfortable going out in public, I would take her grocery shopping, swimming, to the farm I lived on, antique tractor show, walks in the park etc. Rachel also loved car rides, when she would have a rough day she would also ask me for that car ride and she would play with the radio as she loved music and she would put her hand out the window and use the air on her hand for sensory calming. I loved working with Rachel. I formed a way to communicate with her and she understood that. When Rachel didn't feel good she would always come to me for comfort and I could always tell it in her eyes. Unfortunately due to some personal conflicts I had to leave the job, I always felt guilty as I didn't get to say bye to Rachel and explain to her. One of my coworkers Victoria worked with her in the day program and would give me updates and tell me how she was and would give Rachel messages for me and would tell me how Rachel would lighten up and she could tell Rachel knew exactly it was me. I got to see her once in the store after I left and she came to me as if I had never left. I miss her dearly now and wish that I could work with her again. I hope that she is well. Rachel is amazing and I will always fight for autism because of her. Love you Rachel where ever you maybe today.

Amanda
Oxford, MA

Caseys life with autism

when i was little i loved using my hands and taking things to be by myself to put them together and take it apart and do it again well i am 21 and have autism i have many struggles with everyday life but i am learning with the help of my mom to deal with the struggles

casey
hawkinsville, GA