Stories of Hope

PAINTED BLACK AND BLUE

Growing up, my son appeared to have no disability at all. It was not until you spent some time with him that you begin to realize that he is definitely a unique character. In school, some teachers would claim that he was a gifted writer with a very creative mind. Other teachers would claim that he was clearly psychotic. These situations may not seem to relate but I learned that they do. You see, my son had the most difficult time understanding our language. I learned that how you spoke with him would create a wide range of reactions that may make him appear gifted or psychotic or anything in between, depending entirely on you. Here is a little story that I hope will show what I mean.
One summer day while I was at work, my son called me.
"Mom, I hurt my finger when I jammed it in paint."
"Oh gosh honey, I am so sorry you hurt yourself." I had exclaimed, as I am frantically trying to figure out what he means. You see, we don't have any cans of paint laying around and even if we did, how could he have hurt himself on the paint. I cannot just ask him what does he mean, because I will confuse him with my question. How could he hurt himself on paint? Think logical. Think like him. How is paint a solid? On the wall? It seemed like a long shot, but I had to ask, so I did. "Was the paint on the wall?"
"Yes," he said, "When I was running down the stairs, I jammed my finger in the paint on the wall."
This was not a perception I had ever heard in my life and yet, my son gives me these unique perceptions on a regular basis.
The moral of this story: Never assume you know what an autistic child means. Always keep your mind open and logical.

Myrrena Schwegmann
Denver, CO

Madison

On May 7th, 2011 our sweet little girl Madison was born. A beautiful little blue eyed girl, she stole our hearts from the beginning. It wasn't until after her first birthday that I started to notice some things that seemed different. She wouldn't respond to her name, she seemed hostile and upset at the slightest changes, and social situations became very overwhelming for her. Simple routines like going to the store, ended in screaming meltdowns. People would smile or speak to her and she would cry and pull her hair or hit me until we would leave. I thought maybe she was just scared of strangers and it was a phase that would pass. But it didn't pass. It got progressively worse. I found myself in front of a computer researching, not knowing that what would pop up would be the start of an emotional rollercoaster. There in front of me, I finally had the answer-Autism. Each sign I read, Madison exhibited. I felt my heart break. Would she be able to lead a normal life? Would she spend her life struggling? I had a lot of questions but no answers.

In public, people would say rude and hurtful things about her. Pointing, stares, and whispers became an ordinary outing. I was looked at like a horrible mother who wouldn't discipline her child. Even told by some she was a spoiled brat.

On November 1st, 2013, we received the official diagnosis. Madison had a moderate-severe form of ASD. While each day is a new challenge, Madison has come so far. Every milestone she accomplishes is much more bittersweet to me now because I know the struggle behind it and how hard she worked to reach it.

Madison is sweet, smart, and funny. Full of love and compassion for others. She loves animals and nature. She loves to study and analyze the world around her with such an innocence I'm in awe of and admire. I love her with all my heart. I'm her protector and advocator. Her biggest fan. I'm her mother and she is my Angel.

Emily Keith
Starkville, MS

My Autistic Princess

Coming into this world you had it rough as you grew I noticed you were something special not DIFFRENT in 2008 at 3 years old I swallowed my pride to find out what was going on. The doctor told me you had autism I cried thought it was my fault didn't know what to do scared for what kind of life you would have. 7 years later my baby talks runs made student of the week a handful of times. The first 10 IEPS broke my heart but she overcame every obstacle that gave me hope I live in a small town where autism has no voice I created a page to do just that gives single mothers & childrenwith children with autism a voice for acceptance. The best daughter a mother could ask for she makes her own toys knows some good jokes a Michael Jackson dancer can read everything they said she wouldn't be able to do she has done with mommys help and love

LaSHaunda
fairfield, CA

By beautiful smart Corran Ocean

At two days old Corran rolled over by him self it was amazing! At a week old he got jaundice and it seemed to me as the mother he changed after that. He did not roll over again until months later. Corran was always such a calm happy baby and Him being the first born I did not notice he was different until later down the road. Corran also played different with toys then the other children. At home he could organize his toys by type and line them up. He could also find the on off switch on any toy. He was also a late walker, and never actually crawled. It seemed like one day he just decided to walk and he did like a pro, it was kinda odd. At the age of 3 and 1/2 I had to have answers so we took Corran to see a developmental pediatrician for he was still not talking. Corran was then diagnosed with high functioning autism or previously known as Aspergers. The doctor stated that his autism is very isolated to his communication skills. Corran is now 4 years and two months old. We have been taking him to special education pre school. His teachers love him, but He is still not talking. We recently put him on a vitamin with a Chemical Found In Broccoli Sprouts called sulforaphane, a powerful antioxidant. He has been taking the supplements for about two weeks now. Corran's teachers and his father and I have noticed a big change. He seems more Alert like his social part of his brain is just waking up from a long nap. We have more eye contact and he is I think trying to talk and communicate more, for example trying to sound out words. We love and adore him so much I can't wait to see what that little handsome super sweet heart has to say. The day he talks my heart will burst with happiness it will be like winning the lotto. I just want to hear him say mama.

Jackie S
kingman, AZ

Being a Teen with Autism

It’s hard being a teen, going through puberty and such. But being a teen with autism is even harder.

Ever since I was 4, I was diagnosed with Severe (non-communicative) Autism. Today, I’m 13 with High-Functioning (able to communicate effectively) Autism. Because of 2 years of therapy with a team of 6 therapists, ending when I was 6 years, I’ve been acting well since then. For me, it’s hard for me to act my age, but I behave like I’m supposed to.

I think life is good and all (because life is good), but living with autism is hard. The reason why it’s hard is because we are more aware of the world around us. But other than that, it’s just being a teen that makes it hard. You can experience depression, you can get acne, you have to take care of yourself. That is not even 1/3 of the things that make it hard for us. Especially for the autistic people, including me. (Of course, I’m not going through depression.)

In other words, even though I’m autistic, doesn’t mean I’m not like the other teens. It just means I’m a special type of teen! <3 the autistic.

Anonymous
Calgary, Canada

He sees love and harmony

My 12 year old Dominick diagnosed with autism since the age of 2. He also has developmental delay and epilepsy. I used to be in denial of his condition until one day I realized yes he doesn't speak or does not notice his surroundings half the time, but now I enjoy him for him he's beautiful and loves everyone through his eyes
He forgives and loves you more everytime you try to correct him. So I am not here to talk about his struggles but to talk about how lucky I am to have him.

Anonymous
Harlingen, TX

"I have what?"

I've shared a little bit of my story before. Some people have asked me to write about how my diagnosis of High Functioning Autism, aka Asperger's came about; so here we go.

Just a few months before being diagnosed, my Mother passed away. I was struggling with depression and my wife accompanied me to our family doctor. I was referred to a Psychologist for help with grieving. After a few secessions, I decided to write down a list of traits that I thought were a bit eccentric. I told him that I'm uncomfortable with social situations, I don't like to be touched, certain textures make me uneasy, hypersensitive to senses, difficulty understanding emotions... he asked me to take a facial recognition test. I bombed it. I was shocked! Next, I answered a series of questions that mapped my answers on a chart. One side of the chart said Neurotypical and the other said Asperger's. My line was heavily on the Asperger's side.

After a few more secessions, he officially diagnosed me with Asperger's. I remember leaning back on the couch and the confusion that I'd become accustomed to began to give way to answers. For the first time, things weren't so cloudy and started to make sense. I began to embrace it. After all, there are some pretty recognizable people who have been thought to have had Asperger's; such as Dan Aykroyd, George Washington, Henry Ford, Howard Hughes, Albert Einstein, Mark Twain, Bob Dylan, Robin Williams... a pretty well rounded group. While I've certainly have my fair share of meltdowns, Autism has actually helped in some cases. If you're just diagnosed, it's not the end of the world. You haven't changed at all!

Resources for Adults are extremely limited especially considering 1 in 68 people are affected. The Temple Grandin School in Boulder, Colorado has been one of the best places that I've found to learn more about Asperger's. Youtube is another place I go when I want to find more of our people. Also, believe it or not, writing about it helps, too! Hope to hear from you soon!

Scott Gudmundson
Fort Collins, CO

Michai's story

Michai was born at 39 wks during my last trimester he had a hard time growing and had to be delivered in order to save him. He was 4 lbs 12 oz at birth. Each milestone that he should have been reaching at certain stages in his development was delayed I just thought that he would catch up soon enough. Deep down I knew something was different with him at his 2 yr checkup with his doctor she noticed some things that seemed to be off so she recommended that he be seen by a specialist. Well while at the doctor's office he showed signs of Autism (PDD).I was so scared of this label because I didn't understand it.So I started to educate myself on it and on my son..I learned so much from it all Michai has went through 2 yrs of therapy and now is in a school that is geared towards children with the same needs as him...He is thriving there he is starting to say words on his own without prompts.He can now listen to commands and do what is needed of him although we still struggle with a lot of things like going to places that are unfamiliar but now there are less tantrums because I know his triggers and can adjust things to help ease the situation. He has taught me patience and perseverance..I was scared but I am not anymore now I see the bigger picture that my child is a one of a kind person with so much to teach us all about life and love and I know he will be OK... Being the mother of this extraordinary child is a blessing and such a privilege I am so grateful to be called Michai's Mommy....

Jonika
READING, PA

My Beautiful Little Pageant Queen

I adopted my daughter, Kelsey, from a Russian orphanage when she was 14 months old. I knew she had special needs when I adopted her and a couple of years later, she received the diagnosis of Pervasive Developmental Disorder (PDD) which is on the autism spectrum. We have not allowed that diagnosis to hinder her life options and subsequent achievements. She is currently a 4th grade special education student at the local elementary school. In addition, she is a member of a regional swim team and cheerleading show team. She has also taken dance and gymnastics classes since she was two years old.

Last weekend, she was crowned as the 2nd alternate in her age division at the AGG 2014 Christmas National Pageant in Pigeon Forge, Tennessee. The large full-glitz national pageant had over 120 girls (11 in her age division) competing from throughout the country. This is a HUGE accomplishment for her. This was her first experience on a national pageant stage in front of several hundred people and certainly will not be her last. The journey to this national pageant started three months ago, when Kelsey decided she wanted to participate in pageants. Since then, she has spent her weekends competing in 10 pageants, almost always as the only contestant with special needs. Amazingly, she has won eight pageant titles and raised over $1,500 dollars to support organizations like the Breast Cancer Research Foundation, Susan G. Komen Foundation, Shriners Children's Hospitals and the Empty Stocking Fund. Kelsey wants to continue to compete in pageants and help others in the process. Someday, she says she wants to start her own charitable foundation that can help children and families who need assistance. My beautiful daughter has a kind heart and big dreams. I am proud to be her mother.

Carol Norris
Bonaire, GA

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