Stories of Hope

Grace

When Grace was a baby my instincts knew there was something wrong, but the health visitor kept telling me "just give her more tummy time". It wasn't until we moved that our new health visitor showed some concern, Grace was 14 months old and unable to stand and sit unsupported and Grace was diagnosed with "hypotonia" and she started physio. She also had to have many tests . With a year of intense physio she could finally walk with aids. At 3 years old she starting "hand and head rubbing" and would have tantrums, which i thought was frustration because she wasn't able to talk.She started nursery and we noticed her behaviour was "different", she didn't mix very well with the other children, would get very anxious about the smallest things. Was she just shy? We were referred to an OT, Grace had sensory issues. We were then referred to a clinical psychologist who suspected autism but would not diagnose until she was 6 years old. Our neurologist referred us to genetics to have micro array tests, the results were a small duplication on chromosome 4q. So Grace is now 6 and after years of "not knowing" we had the ADOS test and the results....moderate autism.We had feelings of relief yet sadness. But..... Grace gives us such joy, her funny quirky ways and sense of thinking makes us smile every day.Her need to act out "lady gaga" singing at the top of her little voice (with actions and sometimes a pair of tights on her head) makes us laugh.The cheese sandwich she has to eat every day, her "mr fox" who has to go to school with her everyday,the hours it takes for her to get to sleep and then still climb into mummy and daddys bed every night, her fussiness and refusal to try need foods but her love of strawberries and cucumber (with every meal!),her love of swings and stories of fairies, her need to fully undress every time she needs the toilet (even socks!) Grace is grace and we simply wouldn't have it any other way :)

Anonymous
townsville, Australia

My miracle

January 29, 2004 my life changed for the better. God blessed me with the most lovable, interesting, fun little boy ever. By the time he was 8mths old I was amazed by how he loved it when I turned the weather on & would listen to everything the meteorologist had to say, till this day he still loves the weather & tells everyone he wants to be a storm chaser.His 1st birthday came around I noticed he wasn't trying to walk and didn't take his first step til he was 14mth. In Kindergarten,he started having a hard time. He came home crying saying his teacher didn't like him and that she would never let him play with the other kids. I went up to his class to surprise him one day before lunch and saw that he was on the other side of the classroom with his desk in the corner.We had his 1st parent teacher conference the first thing she said to me was," I just don't know what we're going to do with your son he's always drawing when I tell him to do his work and he acts very strange I've never seen anything like it" she had the most disgusted look on her face I felt like crying but was furious at the same time. So, after that I took matters into my own hands and searched for a child psychologist and didn't get him seen until he was in 1st grade and finally found out that he had Aspergers, I felt relieved. Gavin loves Spiderman, tornadoes, movies and most of all Jim Carry his favorite actor! he wants to meet him and knows almost everything about him from where he was born, when he moved to L.A. and got his big break. All in all I love my son with all my heart. I have been through alot of obsticles and crying because I didn't know how to help him and tons of patience when he gets upset and throws fits, I wouldn't change him for the world!

Patricia Finlen
Round Rock, TX

Because of Ignorance.

My son Nicholas was diagnosed with Asperger's Syndrome when he was 11. I had spent the previous three years trying to find out why he refused to talk with anyone at school even though he was being bullied daily. The bullying continued. He was the perfect target, the others knew he wouldn't tell. When he finally gained some inches and pounds he put a stop to the bullying himself. Judevine's "Buddy System" and Nick's two friends James and Ed were what helped him get through to graduation.
After high school his friends helped him get jobs, first at J.C. Penny in maintenance then at Walmart pushing carts. The cart pushing was perfect for him even though Nick is smart enough to pursue any career he wanted. He was contented doing something that involved the same thing everyday, He met a girl, Jenelle; and fell in love. They are still together and it's been over six years. He nearly lost her due to his embarrassment and refusal to tell her. He left her with me crying one day over his cold attitude. I explained to her that he has Asperger's Syndrome, a high functioning form of Autism making it impossible for him to feel empathy. Because she cared about him she stayed with him, which has not been easy at times. Many of her friends and family don't understand why she puts up with his outbursts of name calling or never wanting them to go anywhere. This makes it even harder.
Nick did not put Asperger's on any of his applications, and it cost him his job when he was fired for something that a simple conversation could have cleared up. Inappropriate language. That was in 2009 and he has not worked a full time job since. He still refuses to tell anyone, he says they'll treat him like a "retard". Not a nice word but probably accurate of some ignorant people. I think he's wrong.
Society's ignorance, and his fear; keep him from being able to move forward with his life. And I don't know how to help.

Darla Powell
Williamsville, MO

A friend

I was diagnosed with Asperger's syndrome in 7th grade. I had never been very good at making friends and I was teased a lot for a speech impediment. I didn't understand why everyone else seemed to be able to make friends. Even the troublemakers and weirdos seemed to have friends, but I could never seem to find someone to even eat lunch with.
It took me until I was 19 years old to finally feel like I had a true friend. I met this person online and we became friends over the internet and then the phone and finally in person. Our friendship seems like a strange and even dangerous story, but for someone like me it was the only way I was able to find a friend.
Now, through our friendship, I finally have hope and autism doesn't seem like such a bad thing anymore. I am actually grateful that I have autism because it has made me a stronger and more caring person. I see people judging others all the time and choosing to distance themselves from them, but I am willing to give everyone a chance because I know what it's like to be alone. I wish everyone could know what it's like to feel isolated so that they would reach out to others more. Even though it's hard for me to talk to others, I always try to help everyone feel included so that no one else has to feel like they can't have a friend.

Julia W
Pleasant Grove, UT

My Story

Hi, My Name is Hugh, I'm 15 years old and I have High-Functioning Autism.

I was Born in 99, since then my Mum suspect that I had Autism, I was 4 then got official Diagnostics. I went to Holy Trinity Primary School in my town. Their was two Special Needs units in their, that were I was.

Throughout my 7 years at that school it was very normal and simple, but when i went to Secondary School.

When I was In 1st year I was lonely, I was by my self, alone, no friends, (well that was I thought). In second year I started to Hang out with a few people, in 3rd year it was the same....Then this year, 4th.

This School year (2013-14) has been the best in my life, I have made loads of friends, I won a award in November (For my life) and I became more popular.

So its all good :)

(P.S. Sorry about the photo, I can't find a good photo of me :/)

Hugh
Cookstown, United Kingdom

My inspiration

My mom is not only my hero, but also my inspiration. I'm a 28 year old Aspie, diagnosed in 1996 at the age of 10 (turned 11 that same year). Even with that diagnoses, my mom refused to let it limit me. She had mainstreamed me up to that point and continued to mainstream me. She always believed that I can do whatever I want to do. She treats me more as a gifted and talented person verses someone who is disabled. Because of her belief and encouragement, I was able to go on to get a university degree and to get a job where my Asperger's is able to be utilized. My bosses there have the same belief system in regards to their employees as my mom does with me-that if we want to learn something, we should be able to. Because of that job, I learned how to knit and crochet and now plan to one day open my own shop selling knitted and crocheted items.

Because of her belief in me, I view my Asperger's not as a disability, but a part of me that helps me be the best I can be. Without her believing in me and supporting me, I likely wouldn't have gotten that university degree, the job, learned how to drive, or get the social skills needed to be in the outside world. I never would have gotten the confidence to be me.

Melissa
Flint, MI

Little Bear

Zachary or Z was diagnosed with Autism about 5 years ago. At the time, he was 10 years old and I was concerned that he could not be diagnosed anymore. When he was a baby he was going through all the developmental steps as he should and when he started to talk, it stopped. Zachary was about 1. He regressed in his development. Luckily, his middle brother has special needs (VCFS) that affected his speech, so we knew to call the program that he was in for therapy to get Zachary help.
The therapists never brought up Autism. The first anyone uttered that word was at our church VBS and Zachary was 3. The next I would hear about it was when Zachary was in kindergarten. The school was able to continue with getting the aide needed to keep him within the special ed department, so we didn't pursue it. It wasn't until the magnitude of his melt-downs changed, the realization of the cognitive disability and worrying about his future (as we had to start thinking about his brother's future) that the need for a diagnosis was needed to be able to open doors easier, if he needed them to be.
Although I already knew, I cried when I read the diagnosis because it became real. Z (he can't stand the sound of his name) is graduating 8th grade and is being confirmed. His melt-downs are still hard to deal with but are not a frequent as they used to be. People ask what he is like when he melts down and I tell them that Z gets as big as a bear. But that big bear turns into the sweetest little bear when he is calm and has always been my little bear.

Heather
Sheboygan Falls, WI

How Autism Affects Me

By: Olivia, 10 yrs old
Having a sibling with autism can be hard sometimes. I have a 4-year-old sister named Haylee with autism. She can’t do things as well as other kids her age can.
Haylee has therapists that help her to learn. When I come home from school, a lot of times there will be a therapist helping her. I don’t mind! I just know that they are helping making it possible for me and my family to be able to talk and do other things with my sister someday.
Sometimes other children think that it’s funny that she can’t do as many things other kids can or that she makes noises that you wouldn’t usually hear from a 4-year-old. I have to stick up for Haylee. She is just different than most kids and that is OK because everyone is different.
Haylee loves to play. One of her talents is wearing me and my family out!!! She loves to run around and then you have to chase her. She LOVES to swing as well!!! If you were to push her for a day, she would swing for a day. If you where to push her for a week, she would swing for a week!
She also loves school. She goes to the same school that me and my brother do. My brother and I ride with her on the special education bus because we don’t want her to be alone.
One of Haylee’s favorite things is her iPad. She goes where the iPad goes! It can be hard to take it away sometimes. Sometimes she gets special privileges with it. I know that it can sometimes seem unfair, but we can do things that she can’t or isn’t allowed to do.
Autism has different effects on everyone who has it. We don’t know why Haylee has Autism; we just know that everyone is special and unique in their own little way.

Shayleen
Fairfield, OH

Sweet 16th to my severe autistic daughter

Would just like to share a short Praise for my sweet daughter Taylor, she is getting ready to turn sweet 16, she is a very sweet, kind, loving, big heart, wonderful person. She has very little speech, communication of no more than a 3 year old, she is such a great girl, Its rough sometimes but I love her so much that I look over the hard moments. Hopeing she has a great 16th birthday, she has to go to school for LIfe Skills class's over and hour there and a hour back, since our home based school doesnt offer any classes that would benefit her. She doesnt have friends like a normal 16 year old, she does take up with people (some do not except her) its sad to say but some of our own family do not except her and treat or like a human being or love her the way she desrves. I would do anything and everything to help her that I can. I am going to make her sweet 16 birthday as special as I can make it, she likes to color and say abcs, and listen to music (loves certain artist :) I pray for her every day, I Pray for all kids, and adults that suffer from autisum,, they have feelings,hearts, just like everyone else, I wish people would just stop and think of what they go thru, and How everything effects them weather you think it does or not..HAPPY BIRTHDAY MY SWEET PRECIOUS TAYLOR....MOMMY LOVES YOU SWEET ANGEL! I call her my Angel because I know God sent her to me for a reason! God Bless You All.............

jessica white
Bunker Hill, IN

My sister and our story~

My name is Brenna, I have a sister who has a form of Autism. Her name is Amber. Forgive me for not knowing the name of what she has. From the time we were kids, it was hard for me to understand why my sister had more attention from our parents than I did. It sparked a lot of anger inside of me, even into my high school years I hated talking about my sister. Anytime someone came up to me and asked me about her, I would give them short answers like "She's good. Doing well. I'll tell her hi." and then I would walk away. I know I probably sound like someone who deserves a hard slap to the face, but, this is how I truly acted.

It still bothers me to this day, that many people still come up to me, asking about her. But I've learned to live with the fact that she is different, in a very special way. She's slow, finds things funnier than most others would, opens up to people far to easily, sometimes still annoys me when she is curious about anything and everything and repeatedly asks about it. And I admit, sometimes I still yell at her without thinking about it. But I do apologize later and we make up. I wouldn't change her for any amount of riches in the world. She's my sister and I love her very much.

We still have our ups and down, as I am almost 21 and she is currently 27. I understand that she takes things in slower and sometimes I have to take a deep breath and talk things out with her. She gets frustrated and cries over the easiest of things. And those are the times I've learned to sit down and explain things slowly to her, so she understands what is going on. And those are the times that seem to help her the most. Things may still be bumpy between us, but, we are are still siblings, sisters, and nothing will ever change that.

Brenna Swab
Brockway, PA