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My beautiful boy

“We must be willing to let go of the life we planned so as to have the life that is waiting for us.” Joseph Campbell

Ethan was born a beautiful, healthy baby boy and it wasn't until 16 months old that we started to notice he didn't seem to be developing as he should be. For a long time I wanted to listen to the people who told me everything was fine, they develop at different rates and maybe it's his ears. But I knew he was showing more and more traits of Autism. When I compared him with other children his age I could see the contrast in development so I avoided playgroups and placed him in a controlled world of mostly him and I where I didn't have to explain his behaviour. I didn't have to explain why he couldn't communicate or why he flapped his arms and squealed. I didn't have to explain why everything had to be on the floor and placed in a particular way and why he got so distressed if you touched it. I avoided the shops because it was too upsetting and even leaving the house became difficult when he decided he would only be carried. The good diet he had turned into dry, beige finger foods no matter what I tried to get it back. Every plan and routine crashed and burnt until I accepted that life has to be lived on Ethan's terms no matter how much I feel like I'm failing. Cookies aren't the breakfast of champions but they're better than nothing. An 11pm bedtime isn't the 7pm I'd planned but atleast he's sleeping through. The hardest thing is that he's so vulnerable and that I don't know what he will and won't be capable of but I'm learning to be grateful for the smallest progression or achievement. Above all I know that he's a wonderful, happy, healthy boy who is adored and with the right help he'll get there in the end :)

Natalie Lynock
Birmingham, AL

Sunrise Gives Hope for Better Days

Where I live, I get to enjoy beautiful sunrises nearly everyday. As the Mom of a 27 year old Autistic Man who doesn't communicate with words and still has some pretty challenging behaviors, the sunrise helps me to "forget" yesterday and gives me hope for positive things to come with each new day.

Anonymous
Golden, CO

A child with a great mind...

“I wish I could be in Xaria’s head for at least 5 minutes to know what is in her mind…" This has been my wish since she was diagnosed with Autism.

Xaria was striking every developmental milestone you can read in books until the age of 1. After that, I notice that everything stopped; speech, socializing, stopped eating certain foods, and she wouldn’t respond to her name. Xaria started to have meltdowns and wouldn’t even get out my side. We went to Puerto Rico to see my parents and it was very difficult to see her grandparents trying to engage with Xaria but she wouldn’t even get close to them. Xaria cried all the time that we were there. I expressed my concern to the pediatrician in which her response was that listening to both language (Spanish and English) probably was creating some confusion and delaying her speech. I started doing my own research using the signs - “toe walking”, “hand movements”, lack of engagement, and lack of speech… and there it was, everything was linking to Autism. We decided to take her to a Neurologist Clinic and 3 days before her third birthday, Xaria was diagnosed with Autism.

At that moment, I made it my mission to minimize her “Autism signs” for her to have a chance of a better life. I developed a work plan that included an entire team of therapist such as ABA, Speech and Occupational Therapy, Sensorial Integration Therapy to provide service at daycare. The purpose was to have an aggressive approach while increasing her socialization skills. Over the weekends, Xaria had Vision Therapy, and Horseback riding. In a short time after this, Xaria started to be more social, meeting milestones, started saying key words and pointing at things. Four years later, Xaria is in a contained regular classroom, obtained art awards, spends her summers with my parents in Puerto Rico, and answer different types of questions in English and Spanish!!

Xaria has taught me more than what I have taught her because Xaria is and always be a child with a great mind.

Xaymara
Chicago, IL

Happy Birthday Kelsey!

Happy Birthday to my beautiful, sweet and wonderful daughter, Kelsey! I have loved you since the day we met in that Russian orphanage 10 years ago. You have a sweet spirit and energetic personality that draws people to you. I am especially proud of the young lady you are becoming with your extraordinary ability to connect with people of all ages. At only 11 years of age, you are already a dancer, gymnast, cheerleader, swim team member, pageant queen, author, fundraiser, volunteer and advocate for the developmentally disabled. In addition, you have personally raised thousands of dollars to help sick and/or special needs children and their families. There has been no barrier, associated with being on the autism spectrum, that you have not been able to successfully overcome.

This past year, more than 2 million people have read the posts and articles about your life and your achievements. More than 30,000 autism advocates and parents of children with special needs children have responded and are currently following your various activities and accomplishments through social media. You are a shining example of the potential that exists for every special needs child and I am looking forward to the great things that you will accomplish as an adult. You also represent the value of every child, regardless of the circumstances of their birth, and the right each has to be adopted and loved. I love you!

Carol Norris
Bonaire, GA

Autism's unseen struggles/Piper's story

I am the mother of a beautiful 4yr. old named Piper. Piper was only born 4 weeks early, but had major issues at birth. She did not cry til she was 5 weeks old. Had weak trunk muscles, heart issues and would not eat. After overcoming her initial medical problems. all seemed well. I mentioned to the Dr. a few times that she cried a lot and we could not seem to soothe her no matter what we did. She ignored our questions. I was hooked up with Early Intervention Program. She received SP, PT, and OT. She walked/talked at 18 months. Her behavior would get really bad, to the point no one wanted to keep her, not even the most loving members of our family. When it came time for pre-school screenings, the psychologist asked me if she could do a test for Autism Spectrum . She tested 10 out of 10. Everything we were experiencing now made sense. We found a wonderful daycare that has embraced her differences and works well with her. But her behavior gets worse as time passes and we worry how long she will be able to stay. Getting her dressed can be a daily struggle depending on her mood for the day. Routine task can take three times as long to complete. Our insurance will cover Autism starting in January. This is a blessing for our family as we want to get her in a clinic that just started recently. We are currently trying a sugar free diet, which is helping some. I think the most important thing for anyone to know about my child is that she needs to be Loved. Just as all kids with Autism do. The most important thing that we parents need to learn is the best way to deal in a loving manner that creates an environment where they do not feel so different than everyone else. Giving up on her, is never an option. AS hard as it can be, I will Love her and fight for a way to help her.

lisa falwell
altavista, VA

I Am Me

My name is Mary and here is a poem that I wrote about living my life as a person with Asperger's Syndrome:

Many people have feelings, emotions-

From happy to mad but I'm a different person.

Life is a big challenge but I love

being autistic me.

Shy, sensitive, different- I am me.

You cannot change me

For it's my nature

that autism is part of me.

Feeling different than others

because of my Asperger's

I've been struggling through it in the past

Never knowing when it'll finally last.

Nobody understands the struggle

It's worse than learning to juggle.

But no matter what I go through

I must remain faithful and true.

For I am me and you mustn't change me.

For it's my nature that autism is a part of me.

I am me.

Mary Hughes
Spokane, WA

Don't stop believing

I have wanted to be a mom for as long as I can remember. At 21, this dream finally came true and my beautiful boy, Keagan Raeh was born. He was such a happy baby, constantly wanting to cuddle on someone's shoulder. Around his second birthday, he began having horrible night terrors, behaving strangely, bashing his head into walls and floors, etc. His doctor kept saying this was normal, but mama knew better. At the age of four, during his preschool evaluation, our parent educator noticed the behaviors that concerned me. After much testing, he was diagnosed as developmentally delayed. It would be nearly two more years before he would be diagnosed with autism. The road has been bumpy and oh-so-painful, but this boy is amazing. He makes us smile and he truly enjoys life. Watching him overcome every obstacle is inspiring and I will never get tired of cheering him on. Nothing stops him and I do not think it ever will. He gets angry and acts out, but eventually figures it out. The pride on his face is priceless to me. I do not know where his journey will lead, but I know that he will be just fine. I hope that his beautiful soul will show people that autism does not have my baby, he has autism!

Dawn Gazaway
Nevada, MO

The beauty of nature as experienced by a child with autism.

As I TAKE MY 7 YEAR OLD GRANDSON ON A WALK AROUND THE NEIGHBORHOOD, I FEEL THE WARMTH OF HIS HAND IN MINE. I LOOK AT ALL THE BEAUTIFUL FLOWERS AND TREES.THEN I REALIZE THAT JR IS EXPERIENCING THEM IN A DIFFERENT WAY- WITH HIS SENSE OF TOUCH. HE LOVES TO FEEL THE LEAVES AND TREES ALONG THE WAY. HIS DAD (MY SON) ENCOURAGED HIM TO HELP WITH PLANTING AND HARVESTING THE GARDEN. HIS PUMPKINS WERE NOT VERY BIG, BUT YOU COULD SEE THE PRIDE ON HIS FACE AS HE HELD THEM. NOW HE HAS A LITTLE SISTER, AND I AM SURE HE WILL TEACH HER ABOUT THE JOYSOF SEEING AND REALLY 'FEELING' THE JOYS OF NATURE.

Marilyn
Parkton, MD

When Our Hands Can't Hold Still

As someone with Autism, I experience some of the repetitive behaviors a lot of us on the spectrum, one of them including the infamous hand flapping. My parents have tried to get me to stop, because "it looks weird", so I've wrote a poem, about it. I hope you all enjoy this little poem, called "Why Our Hands Can't Hold Still"

Does this look strange?

Do we embarrass you?

I'm sorry for what I will say,

But there's nothing we can do.

We may get excited,

We may get stressed out,

We may get frustrated,

But you can't tell what it's about

But sometimes our hands can't hold still

You just gotta accept that

We may clap or drum on the table

And our hands will almost always flap

Just always remember,

We are still human beings.

And like other humans out there,

We do things differently.

If it helps us cope,

Then let us flap our hands

If we can cope, there is hope

And we'll make you proud in the end

Jasmine Malone
Tucson, AZ

Autism and Moving Forward - Matt Jones

Hi there! I'm Matt Jones, a student from England, who has autism.

I was diagnosed from the age of two back in 1997. I initially found it very difficult to speak to anybody, even my own parents. I developed later than most children within my age bracket, and I suffered from extreme emotional problems, becoming very fragile in dealing with my emotions and social problems, especially since my grandfathers died when I was very little, and I remember witnessing one of them having a heart attack and being placed in an ambulance.

Up until a few months back, I never believed I could make it. I suffer from bouts of depression alongside my autism, and they still affect me to this day. I used to believe my autism was a hinderance to myself and others around me, including friends and family. It's not a hinderance.

You may not feel it, but you are important to somebody. You've made somebody's life much funner, much happier, and/or much more exciting. It took me a long time to realise this. Don't worry about naysayers, your autism is not your whole identity, it's just a small part of what makes you a great human being. If you're kind, compassionate, and caring, you're beyond anyone who considers themselves "normal" and bullies others for differences they don't understand. With the support of my family, and great friends (one in particular I hold very dear to my heart), I've managed to crawl from my dark pit of despair and have seen the light. To every parent out there with an autistic child you've raised with love and care, you're a superhero, and your child can achieve great things. I managed to achieve one of the highest English grades possible, and I'm really looking forward to continuing to write, a huge passion of mine. Don't give up, and remember, you'll be supported.

Matt Jones
Shropshire, United Kingdom
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