Stories of Hope

My son and Autism

My son was diagnosed in the Autism Spectrum at 2.5 yrs old. I knew that would be his diagnosis because I have worked over the years with some folks who have autism. He had the sterotypical behavior of lining up things, even objects that don't go together, he wouldn't turn when you called his name, yet in every other respect he appeared to be very intelligent and physically rugged and coordinated. He climbed ran away, dropped to the ground and screamed if he didn't want to come, he was obsessed with water and tried to run into any body of water, the ocean, puddles, ect. He didn't care if it was freezing cold out! Now he is 5.5 and has changed dramatically, he has had OT and Nurtured Heart Bev Therapy. He speaks in full sentences, can read a little and is very expressive and loving. He often spends much of his time pretending though, he has elaborate stories in his head, which he frequently acts out. I call him, "the actor." The positive change in my son is that he spends his time happy, rather than frustrated. He uses language to communicate rather than tantrums. He interacts with other kids and calls his playgroup, "my friends," though he hasn't yet identified a friend. He interacts in school, but remains in special ed, not because he lacks academic progress, but due to distractability. His report card said he is profoundly involved in his self talk, which I know very well to be pretend play which he engages in when he would rather be in the pretend world than doing what is asked of him. I'm so happy my son has progressed to have the skills that he does, but this continues to be a major concern.

Ellen
Edmonds, WA

Jonny, my baby brother

This is Jonny, he is seven years old. He has PDD, personality development disorder. We found out when he was about one and a half years old. Since then he has not been able to put a piece of food in his mouth and chew it. He is very smart, and very loving. He taught himself how to write, and he is so good at computer games. He can put a smile on anyone's face. He has a lot of stuffed animals and they each have a name. He talks to them as if they were real. It is the cutest thing ever. Even though i am no longer living with him anymore, i do miss him everyday. I miss his goofiness, i miss his beautiful eyes.. but most of all i miss trying to help him eat. He drinks milk, and has yogurt occasionally. This can get very frustrating at times because we want him to get all the nutrients and vitamins he needs. I hope and pray everyday that he will sit down to eat a slice of pizza, or have a bowl of cereal. He is my favorite person in the world, and i love him with every single inch of my heart. I would do anything for him, and i love him more then any of you can imagine. I hope and pray everyday that people that don't have a sibling that is autistic or a child that has special needs, will bring them selves around one that does, because they are so heart warming, and i promise they are just like everyone else.. they just don't know that they are.

Kayla Warning
Batavia, IL

My life with Aspergers is getting better each day

My name is Rachel im 17 and I am unofficially diagnosed with Aspergers. My life has been a constant struggle with my self. When I was younger I never talked or had alot of friends. My mom tried every therapy she could think of. When I was 14 my therapist told my mom she thought I had Aspergers. My mom didnt tell me untill I was 16 because I wasnt ready to know until then. I think knowing gave me some closure but i didnt need to know something was wrong with me to succedin my life. I have had a 4.0 grade average since Sophmore year, Igoing to graduate in 4 months ,I have friends to eat lunch with, Im in love with an amazing guy, and I have overcome most of my quarks. I love my life and I have my mom to thank because If she hadnt pushed me I wouldnt have made it this far. I love you mom , thanks for never giving up on me.

Rachel
Houston, TX

Never give up

When Tyler was 3, I asked his Doctor if he thought Tyler may be Autistic. I was answered no, and told not to be one of "those" parents. When Tyler was 5, his kindergarten teacher called me, and asked me if I thought that he may be on the spectrum. She noticed regression in speech, and ability to function at school. I answered yes. We were sent to neurology, who diagnosed him with Tourettes. We were then sent to psychology, where he was diagnosed with OCD and PDD. They sent us back to the same neurologist, who at this point told us that our son did not have tourettes and that he was playing us with his OCD. We were again sent to psych who told us that our child was fine and we were just being overprotective parents. After feeling like I had no control, I myself contacted an Occupational therapist and had him tested for sensory integration. The results were astonishing to some, but not to me. Sensory Processing disorder, Sensory integration disorder, Dyspraxia, and Sensory Defensiveness. She made a call to a pediatric specialist, and within a month, Tyler was diagnosed additionally with Aspergers. I was told by many at that time that he would continue to regress, going backwards into his own world. I refused to listen. Tyler is now 13. He is still under the care of that specialist. He is a very high functioning middle school student. He plays basketball, and baseball. He is brilliant in science, and math. He has friends, and likes to tease the girls. He picks on his little brother, and can play you a song on the trumpet just by hearing it. He is an asset to our family, and I am thankful that he is my little boy.

Shannon Avery
Casco, ME

Michael: My Inspiration

My old friend's little brother, Michael, was diagnosed with Autism shortly before his second birthday. After I found this out, I did a lot of research on Autism, and decided to meet Michael. When I met him, he didn't say anything. That's when I learned he also has Verbal Appraxia, which is the inability to speak. This recent Halloween, I was with Michael and his brother's house sitting on the couch with Michael. He was playing on a Blackberry practicing words. He wanted me to see what he had wrote. What did he write? "You look pretty." I miss Michael since his brother and I are no longer friends, but the thought of Michael still makes me smile and the simplest words he typed to me still live with me everyday. I love and miss you, Michael.

Alyssa
Buffalo, NY

My son

I can;t imagine life without my son, it has been a constant struggle with my son since he was diagnosed with autism. Even though he can speak, I have to rely on visual cues and common sense to meet his needs. With the doctors has been a struggle to get answers(and they are out there), genetic testing comes up, no referals or "he shows no signs of a genetic disorder". I finally got a referal after 12 year to get some genetic testing done to find out that he has a genetic disorder that causes his autism. Chromosone 16 deletion, p11.2, a fairly new discovery, I had found out that I had given it to him. Not too much is known about it so I don't know what kind of support there is lr how to deal with it. Not everyone who has the deletion has autism, I lead a fairly normal life but I have not been diagnosed with autism and could possibly have very mild austic behavior, my son has reconizable autisic behavior because of the deletion. Everyone tells me it's not my fault, but the guilt I feel that I have given him a genetic disorder. I have only one child, as much as I love my son, if I had known my genetic disposition, I don't know if I would have gone the route of having him, and because I know now and have no other children I have not passed on my genetic disorder to other children.

Anonymous
vancouver, WA

MY VERY SPECIAL GIFT

MY VERY SPECIAL GIFT FROM GOD NAME IS NAYVEN ARMANI FIGUEROA, SINCE THE MINUTE HI WAS BORN I, KNOW HE WAS SPECIAL. HI IS 36 MONTH OLD, WITH SEVERE AUTISM AND DEAF FROM HIS LEFT EAR. BUT HI HAS FILL MY LIFE WITH LOVE, PACIENCE, CORAGE. NOW I, FEEL MORE STRONG AND I WANT TO DO MY BEST TO HELP HIM GO TRUE LIFE AROUND LOVE AND THE SUPPORT OF A GREAT FAMILY, WE ALL LOVE YOU NAYVEN.

gloria aguilar
philadelphia, PA

Step in the Right Direction Autism Dance Day

Anna Kennedy, mother of 2 sons on the autism spectrum ,autism campaigner and founder of Hillingdon Manor School, has announced the inaugural Step in the Right Direction Autism Dance Day for Friday 27 April 2012.

This new project aims to get large numbers of special needs and mainstream schools across the country involved in organising dance events to raise funds for autism. The events will be open to all, those with and without autism, and event organisers will be encouraged to involve parents, siblings, school governors and the local community.

In 2011, Mrs Kennedy produced the Step in the Right Direction DVD, in association with Pineapple Dance Studios, which highlighted the benefits of dance for those with autism.

Those interested in organising an event for Autism Dance Day should visit:charity website
http://www.annakennedyonline.com/autism-dance-day/

Latest Newspaper article http://www.thenorthernecho.co.uk/news/9501251.Dancing___s_class_act/?ref=twtrec

Anna Kennedy
London, AL

We are celebrating 10 Years of Autism Sunday in 2012

When we launched Autism Sunday from our home in the United Kingdom in 2002 we never ever thought that in 2012 we will be celebrating the 10th Anniversay of this event. We are parents and carers of Charin who is 16 years old and has autism. He is a wonderful son and we thank God for his life.

We are just parents and carers, we don't have vast sums of money for expensive public relations and marketing campaigns and that is why we are so amazed that this small mustard seed has grown into a huge big tree and it has become a global event. This is because Autism Sunday comes from the heart. For us, autism is a 24 hour job.

Life is hard but we thank God on a daily basis - for our son. He has changed our lives for the better. My son has made me get out of my comfort zone and campaign for autism. As his father I am so very proud of him - those little steps have become huge milestones. We take one day at a time but we have seen the progress he is making. He has brought us hope.

This year we are urging people to join us on the Autism Sunday 2012 Twitter Storm and celebrate the lives of 67 million people with autism around the world.

As far as we are aware autism has never ever been a trending subject on twitter and we hope that people from right across the globe will support all people with autism by using the hashtag #autismsunday on twitter. People with autism are very special and we think it is right to celebrate their lives.

Ivan Corea
London, United Kingdom

MI PRIMERA CLASE COMO TERAPEUTA

Al iniciar de mi carrera, me asustaba un poco la idea de tener en mis manos la responsabilidad de ayudar a ninos con autismo. Tuve 8 ninos de los cuales uno fue exitosamente integrado en escuela regular y otro tuvo un gran avance y fue subido nivel a mediados del ano. El miedo que sentia se fue desvaneciendo a medida que el tiempo transcurria. Eran ninos maravillosos!! tenian habilidades que ni sus padres sabian que tenian. Recuerdo que en la primera reunion con los padres pedi que me escribieran los objetivos que deseaban que sus hijos alcancen. Todos pidieron muchas cosas pero lo que mas me conmovio fue una peticion que decia: -algun dia quisiera poder escuchar la voz de mi hijo-. Con gran esfuerzo y trabajo logramos completar casi todos los objetivos del ano y otros mas que les pusimos a cada nino segun sus capacidades. Lo que mas me impacto fue cuando que en las siguientes reuniones con sus padres, todos estaban felices por los avances. La verdad es que al verlos sonreir, escuchar sus historias -le cuento que mi hijo me dijo mama- o -mi hijo sonrie mucho mas-, -ya dejo los panales-, etc. fue algo que me lleno de orgullo, fue algo que no puedo explicar, simplemente no tiene precio. Mis ninos ya van a cumplir 6 anitos y estan cada vez avanzando mas, los adoro! a pesar de ya no ser su terapeuta sigo viendolos y hablando con sus papitos. La oportunidad de conocerlos y el privilegio de haber sido su terapeuta ese ano, es una de las mejores cosas que me han pasado en la vida, no lo cambiaria por nada. Gracias a ellos me di cuenta que me encanta la carrera que elegi y lo que hago, lo hago con mucho amor.

Jen
Guayaquil, Ecuador