Stories of Hope

Ryders Story

My son Ryder was Born October 2006 on my Mother in law and Sister in laws birthday. he was a healthy 9lb 3oz baby boy. he met all his milestones on time, talked and walked on time, and when he got to around 18 months, lost all these skills except walking. He was inverted, wouldnt answer to his name, would play with his cars on the window for hours. I got him evaluated and he was diagnosed with PDD NOS. I was relieved because I knew there was an answer to this horrible event in my life. I vowed to fight for him to get whatever help he needed. He fought for a long time to be normal, he is my inspiration because hes worked so hard to accomplish what people take for granted.Waving,social skills, feelings.I cried many many times from stress and not being able to help him or understand whats going on in his head. why wont he listen to me? why is he so angry at times and so hyper?II am very proud to say he will be graduating his preschool(for autism) and going into regular kindergarten this year, hes talking sentences and a lot of words, he loves playing with his sister, he even has a dinosuar toy he calls "abby" after his new little sister, and cuddles her, rocks her, and feeds her. A lot of people can learn from ryder because he never gave up. he worked hard the past few years 6 hour days while other kids his age played. I love him so much and all the fustration and the hard work has made me just love him more. He is the best thing thats ever happened to me.

natasha
east islip, NY

God gave me a gift

i had my son at the age of 21, At that age you are trying to find who you are let alone trying to be a parent. my son was born at 38 weeks witch i thought was early but by time he turned one he was still not talking or using simple words,(like mama dada) everyone told me i that it takes time. Deep in my heart i knew something was wrong. Here was this little boy who never cried or fussed like other kids. i thought i was lucky to have a "good" baby, then when he got sick he never showed it. When he had ear infections it was so hard to tell until the pus came out of his eyes. he got tubes in his ears at two years old. That helped but then when he still wouldn't talked we began to question why. We got of hold of the early intervention who began to give us hope and understanding why my little guy was different. His actions show the signs of autisim and aspergers. He still hasn't be formly tested for it but the sings are there . I'm begining to understand why God gave my this little gift. my son is a gift god wanted me to have.
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melissa
yankton, SD

The Story of Heavan and Our Families Struggle With Autism

Heavan was born 4 weeks premature with a heart condition. She was in NICU for 4 days and on heart medication for the first 11 months. Around the time she came off the medication, her personality had begun to change. She would scream for no reason, wouldn't make eye contact, and was only content being held tightly in a dark, quiet room.
We were told that she was probably just having withdrawals from her medication and to wait. Months of dealing with the constant screaming, crying, and aggressive behavior were wearing us out, and now the doctors said they didn't have an answer. I would cry for hours, wondering why I couldn't help her.
After two years of just "dealing" with her behavior, her pre-k teacher suggested we get her evaluated. She hadn't said a word at school in 4 months. After being evaluated we were told she was dealing with Sensory Integration Disorder and mild Autism. The diagnosis was devastating. We just had our third baby and having 3 children under 5 was stressful enough. But we eventually find a light through the darkness.
We moved to Texas when Heavan was 4 and found a wonderful therapy center. It took another year and several mis-diagnoses before we learned Heavan was indeed Autistic. We also learned our youngest had Sensory Integration Disorder. We were taught how to brush her, do joint compression, and triggers to avoid. Heavan is now a happy, healthy 7 1/2 year old. She's in the gifted program at school with an IQ of 138. She has a best friend and she's learning what her triggers are and coping skills. Don't get me wrong, we still have meltdowns, screaming, and days that nothing goes right.
Heavan has Autism... but Autism no longer has Heavan, or our family.

Rebekka Reilly
Texarkana, TX

Kaylene's Story with Autism

My name is Kaylene and I am 7, when I was a toddler I could talk a few words and play with others with ease, then one day at about 18 months of age, I stopped talking and preferred to be alone. I really did not want my own family to be near me. I completely isolated myself from everyone. I can not explain why.

Fortunately by the age of 22 months my parents had learned I was diagnosed with Autism and began early intervention. Now I do talk more and I do want to be around others. I struggle with my own peers. I enjoy the games they are playing but I really do not want to join, just play near them. I am so happy that I am engaging with my brother and my mom and dad, it feels like a reunion.

I am a very active little girl who enjoys all that life has to offer. I still have a lot more to learn about sharing and playing with other kids my own age, and well I still struggle with communication. I do suffer from unexplained tantrums, but all I would like out of life is to be accepted for who I am. I want to grow up and go to college and try to live as normal a life as possible. Please accept me for who I am and not feel sorry for me.

My autism is nothing to feel sorry for, I see life in a more positive way than most people. I enjoy flowers, swinging and running and sometimes I even enjoy school. I especially enjoy camping! Autism does not limit me from the joys in life, my parents expose me to everything.

Anonymous
Fresno, CA

The Artist and his sister

As difficult as it may be, any outside the spectrum have not a clue what goes on everyday. Many may read about it, many may see it but to live with someone that has autism is a challenge in itself. My brother and I are close, but not enough to be able to go out with friends and hang out as typical teenagers may do. His OCD tendencies stop him from having a fulfilling life, he never will be able to drive a car, get a date or drink at the proper age. David, my brother, has severe autism, to the point without his medication he would be stuck on the stair case of our home or bang his head to the point were a seep of blood may crack. Living on a nudest beach may be his calling, but to have to constantly tell him to pull his pants up can be annoying. Clothes to him is an extra layer of skin he feels the need to peel off, especially in front of others not use to him. His seizures are terrifying, his banshee cries causes the house to rattle but when David is calm he is a sweet, gentle giant with a natural talent for the arts. Starting off on a clean sheet, his work takes off by starting from the foot, to then the torso and sometimes leaving it half finish to work on it later. While mimicking the voice of Dr. Claw, David will be working hard to finish his design in his timely fashion, adding the small bits of color and dark tone to bring his drawings to life. My brother gives me hope for his future and for mine. There is no excuse to not break down the brick, live happy and stay smiling.

Amy Chiappiniello
stratford, CT

Appreciate every day...

Expecting b/g twins, I couldn't be more excited. My son would be a star linebacker, and my daughter the first female NFL coach. Before their 2nd birthday the rug was pulled out. My son was diagnosed with autism. Not knowing anything past "Rainman" I had horrible visions of what he would become. What I didn't recognize is that his journey would take me down paths I'd never imagined were possible.

They told me to be prepared to put him in a home as an adult; they told me he would never speak; they told me to give up on my own son. And I thank them, because today, at 6 years old, I recognize that they gave me the drive to prove them wrong. I learned that his perspective is untouched by outside influence and his determination never fails. He couldn't talk - I worked on his diet. He couldn't stay on task - I worked on his focus. For all of the things he couldn't do - I found a way to make it happen for him. He needs comfort when facing the unexpected, he needs to stim when he feels overwhelmed, and he needs me to advocate for him. These are things I can never lose sight of.

So parents, wear autism as a badge of honor and not a mark of shame. You never have to worry about your child lying to you; they won't steal your car in the middle of the night at age 16 to be with their friends; they won't intentionally inflict harm on another living soul because they operate on a totally different level than the rest of us. And most importantly, you KNOW that the love and affection they show you is pure, and for that you have the advantage.

Donna McNaught
St. Augustine, FL

A Ray of Sunshine

At 23 I wasn't ready to be a mother. My story is unusual one, and one that most people don't believe. I carried my oldest son all 9 months without knowing I was carrying him. Easter Sunday in 2005 I gave birth to a baby boy, alone in my home. I had no phone, and no way to get in touch with anyone. My husband came home after Easter Dinner, to find me and our little boy. We were rushed to the hospital and looked over. He was fine, while I had a little scratch and an infection, with a fever that wouldn't go down. for the first 2 years of his life, we just thought he had ADD, but after 3 more years of wondering, and with him starting school, we knew there was something special about him. We had him tested in Feb in 2011 and he was diagnosed as a high functioning Autistic. Since then we have learned that even though he is Autistic that he is still like any other child. He has fears, he loves us, and he goes about with a smile that is always like a ray of sunshine for all the world to see. I pray everyday that people will not stare at him and wonder what is wrong with him, or that we are bad parents, but understand that our son is special in so many ways. My heart goes out to all the parents that read this and hopefully it will give them some faith and hope that they will find people that will understand what we are all going through.

Happy with my ray of sunshine.

Sandra
Buena Vista, VA

A Letter From Brandon

My name is Brandon, I am 6 and I have AUTISM.

When I was born, I was a typical and active infant. I was an engaging, happy, babbling toddler until suddenly around 18 months. I became silent, withdrawn, and indifferent to my social surroundings. The only way I know how to describe it is it was as if someone came into my room one night and took a piece of my brain away. I stopped saying the hand full of words I knew, I didn’t make eye contact with other people, and I even stopped responding to my name.

The diagnosis was – “PDD-NOS” - Pervasive Development Disorder-Not otherwise Specified.

Basically it means that I lie somewhere on the line of Autism Spectrum Disorders –ASD. Thankfully, we found out early and off with the Early Intervention we went.

I need to continue to work on my social skills and social interactions. I need help learning the “give and take” of a normal conversation. I need to learn how to interpret what others are thinking and feeling and I am still not able to predict or understand other people’s actions. Basically, I need to learn how to be more social, but it’s hard because I like being on my own. Oh, and I also need to learn how not to get upset when things don’t go my way. When schedules and routines change, I need to know that it’s okay.

All I ask for is acceptance, inclusion, respect, and understanding --- with that; I truly believe the rest will fall into place.

I pray that one day I will get to drive a car, go to college, get married, have children, and hold a good job. Mommy and Daddy always say, “Through God, all things are possible”!

Love,
Brandon

Pam Newell
Houston, TX

My Boys

My 2nd son, Alex was diagnosed at 24 months with Autism. It was a few years before we understood how severe he was. He was non-verbal, never potty trained, completely in his own world all the time. In 2007, at the age of 7 1/2, he escaped from our home (something we were trying hard to prevent,as he was constantly trying to get outside),and drown in a lake near our home. Our 3rd son (Miles (4) who was only 3 months at the time Alex passed away) was diagnosed last year. He's much more higher functioning, verbal, somewhat social, but still has so far to go. I pray that he'll be independent enough to work and live on his own as an adult. I am now pregnant with our 4th son. I'm terrified. I stress and worry about what will happen. As much as we miss our Alex, it was a relief to be out of the 'Autism world' for awhile. Its so depressing to be back in it again. But, I've also so truly enjoyed our little Miles. After having a son that could never tell me what he needed,liked,thought or say "I love you", I cherish being able to talk to Miles. I love to hear "Goodnight Mom, I love you"-even if I do have to coax it out of him. I love watching him and listening to him and reading to him. It gives me a glimpse into what Alex might have been like, had he been able to tell me all his little thoughts. I pray for understanding for my little boy. I pray for his safety. I pray that there will be a cure, or at least a way to prevent this. And, I desperately pray that this new baby will be ok.

Carinne
Anchorage, AK

This Moment In Time

I remember being 28 in 2001, I was 8 month pregnant with a little boy. As I was waiting at the lab for blood work to be drawn a young mother of 3 spoke desperately out into the waiting room," Please stop staring at my son, he can't help it, he is Autistic" as she lovingly pulled the big boy out from under the chairs.
I never thought that small moment in time would stay with me forever. I didn't know what Autism meant but it wasn't long before I understood first hand. Ryan was my first child. I had no "typical" example first before him but I still felt something wasn't exactly right during development. By 18 months he was diagnosed.
Six yrs later, pregnant and at my 12 week ultrasound I saw I was carrying baby boy 2. My heart came into my throat. I knew it, at that very moment I knew. I held on to hope for many months.. not for me.. for him. At 19 months my Mikey was diagnosed.
My life has been forever changed. I have found beauty in so many little things that I normally would have taken for granted. From the sound of a buzzing florescent light bulb to the consistency of different pages of a magazine. The ability to look through my boys eye's without judgement of the world. I can't express how Autism has changed my life in such a wonderful way. At "This Moment In Time" I would give it all back for my boys to be considered "Typical" amongst this ~at times~ cruel social network of humanity.

Signed by Mommy's Heart <3

Dyan
Parlin, NJ