Stories of Hope

Dealing with Lack of Autism Awareness

Emma is 6 years old and was dx'd with PDD-NOS. She has expressive language issues and sound sensitivity and is also a very bright and kind child. She is in mainstream first grade with support as needed. She is excelling in school and performs above grade level in reading and math. She likes horseback riding, swimming lessons and goes to art school in the summer. She loves traveling --- her favorite places so far are Disneyland and Alaska. She LOVES Minnie Mouse and also cats!

One problem is dealing with neighbors who don't believe in some of the features of autism. They put their basketball goal in line with our ONE window and kept hitting our window with basketballs. This turned out to be a big sound sensitivity trigger for Emma. We tried to talk to the neighbors and explained about Emma. We asked if they could please move their basketball a few feet out of line with our window. They said "Nope" and told us to either put plexiglass on our window or move if we don't like the sounds of kids playing. They just don't understand sound sensitivity :( The worst part is not too long after that, the Dad lined his kids up and had them bat baseballs directly at our window. At that point, we decided a nice fence was prettier than plexiglass.

It's sad it's come to this -- I've done a lot of thinking about how to handle this. These neighbors have also been ugly to another family down the street with a special needs family. The best solution I've come up with is to advocate about autism awareness (sound sensitivity IS real). How do you deal with evil neighbors? You don't -- you ignore them and go on your merry way. The world is a BIG place :) That's what we're teaching Emma and her sister.

Emma continues to do great -- she's smart, funny, kind and brave. She's working hard and each year just gets better and better for her :) We love you Em and we're so very proud of you!

RGP
Pearland, TX

All Things Are Possible

Patrick, now 25 years old, was diagnosed moderate Autism at the age of 18 months. We did not know what was in store for us, this was new to us. I was happy to find an answer to why his communication was lacking, why his activity level was extremely high and why he did not interact with others. His diagnoses was a step into a journey to help him.
Early intervention is the key to brighten their horizons. Immediately Patrick entered preschool and the process of learning to listen and follow directions which was a challenge. I worried what if he just ran out of the door! I asked for help, I asked to help and I placed my hands on all information that I could. What is the goal? I knew he had to survive this world, to become an adult and to live on his own one day.
With schooling in place I then had to find his interests, another key. Patrick started violin lessons at the age of five and followed my piano, chorus and band at school. Slowly Patrick was into a regular classroom by third grade. Patrick was known now, for his autism and for his musical abilities but still did not have any friends.
As a parent it was not easy but had to be strong for his future. Patrick has earned a 2 year degree in Architecture is now completing his second 2 year degree now is Pharmaceutical Technologies next month! I was never able to complete college and he now has surpassed me!!
Patrick is getting married this June! Patrick is a wonderful man, honest, trustworthy, devoted and willing. I am excited to see what else Patrick has in store in his future. Goals met and still being met. Goals to be independent, smart and able to handle to world. With the help of a teachers, church and my unwillingness to stop trying, everything became possible for Patrick. Autism does not mean a down hill life it opens doors that I never thought imaginable. All things are possible even with Autism!

Jill
Bailey, NC

Her Brother's Keeper

Nick had not been diagnosed very long when we became pregnant with our daughter, Skylar. We worried. How would Nick adapt to the change a new baby would bring? How would Skylar develop a relationship with a sibling who was significantly speech and sensory impaired? It hasn't been easy, but one of the most satisfying events of my life has been watching the relationship between my children grow and deepen. Having Nick a part of our family has made us appreciate things, I think, other families may take for granted. We all remember when going to a movie, a wedding, a family vacation.....unthinkable. We are all better people for having Nick in our lives, but I think my children have benefited the most from each other. She helps Nick navigate the world in a way that I cannot as his mother. He has taught her compassion.

So, all that worry so long ago was for naught. One day my heart will take its final beat (to steal a line from a Foo Fighter's song), but no worries. My children will be in good hands. Each others.

By the way, this picture was taken at my niece's wedding this weekend. Nick is 18;Skylar is 14, and they tore up the dance floor. Nothing like a little Wayne Toups on a Saturday night!

Carla Jordan
Starks, LA

Don't Let Anything Hold You Back

In my first year of what's known as mainstream school, I always felt I was different somehow. I often didn't know what to say to my classmates and when to start talking, I felt like an outsider when they laughed at me for not fully understanding what they were telling me. When I started secondary school however it all became clear when I was told I had autism.

Autism is often likened to being in a different country where everyone else speaks a different language where you only understand very few words. Watching old family videos I could see it effected my ability to communicate with others around me or even talk.

Fast forward to the present day. I am writing this story the day after my graduation ceremony where I received a Second Class Bachelor Of Arts Honours degree in Media Culture and Production which took me three years of hard work and motivation to achieve. This is my biggest achievement to date since I remember being told that I would not have been able to cope with GCSEs at secondary school; this didn't stop me wanting to do GCSEs with my friends and achieving twelve after two years of hard work. I then went on to college and achieved my A Levels.

None of that would have been possible with all the right help and support! So therefore I would like to thank the following people; Mum and Dad for their undying love, support and guidance even when things were tough, my sister Emily for being a best friend, my grandparents for being there to talk to and the delicious cakes of course, to all the learning support assistants (Felicity, Jilly Bull, Lois, Clio and Claudia) I had during education, my cousin Emma and all my friends who have accepted me!

One message from me is don't let anything stop you from achieving your goals!

Charlotte Whittingham
Romsey, United Kingdom

What Will I Do With My Brother One Day?

My "little" brother is 50 yrs. old and lives in my childhood home with my Dad. My Dad is getting on and having some health issues. When I was a child, my little brother was frustrating, funny, strange and awkward. His autistic behavior brought on bullying and laughter from many people. I learned to protect him from the bullies and expand my sense of humor to embrace the laughter rather than be hurt by it. I also built up my confidence by proudly and proactively explaining his mannerisms to the masses before they could feel afraid, angry or confused.

But then I moved away to college, got married and started my own family. The distance became immense. I was no longer comfortable with his inappropriate staring and his lack of hygiene due to his fear of showers. I could no longer stomach his bizarre habits of picking up trash from the streets, or eating food from the trash, or filling his cup with hot scalding coffee all the way to the actual top of the cup. In vain, I would sweep into town a few times a year and try to clean up his act and change him, all to no avail. The distance became protection.

After my Dad is gone, how will I provide my brother solace, safety and comfort while doing the same for myself? These questions haunt me. Could he live with me? In the words of the band he obsesses over, (Hall & Oats), "I can't go for that, no, no can do..." I need to face my shame and truly begin to answer the question... what will I do with my brother one day? It's a very big question indeed.

Summer Bailey
Newport Beach, CA

Ivan my 10 yr old son

Ivan is my son 10 yrs old tomorrow nov19.He didn't meet any of his mild stones my pcp had me start EI I wasn't a fan. I wasn't even concerned till he start school with 15-20 words. About 4-5 weeks after school started his teacher told me I should start FIGHTING for an IEP.Why should have to fight if he need it. Needless to say now in 4th grade on 1st grade level I'm still fighting to keep this IEP. So I go back to Dr and explain that Ivan is meeting mild stones half his age and he's has melt downs and he still can't dress, bath himself he has some sensory things going on and that his classmates pick on him, I explained to Dr that over summer we had a graduation party for my son and I told my son don't leave Ivan alone my farther in law calls me and tells me they can't get Ivan to stop crying and what was wrong with him I asked where's the boys he said they took a walk I said that's what's wrong my farther in law didn't understand he knows his grand farther but cause I wasn't there and his brothers wasn't either Ivan got very upset he cried for 4 hours,Dr told me it's not abnormal for children to pick on other children for being immature. I got upset, but didn't blow a fuse till the doctor told me my son is JUST a slower learner.I could understand if he was a little behind but not half his age. Ivan works hard and is very smart if you listen to him.He goes on you tube and listens to the same video over and over everyday. He's my teacher he teaches me every day. I can't afford for a good dr and it's going to take 8-12 months for a new one at Hasbro.

Anonymous
Providence, RI

Goofy girl

Katie is a happy 10year old girl. She's funny, creative, loves to draw, bubbles and play video games.
When she was in preschool, they said she had a developmental delay because of her lack of speech skills for her age. Things in school weren't easy for her and she had some massive melt-downs.
When they brought in a specialist for her in 1st grade, she was finally diagnosed with autism. She had been recieving speech therapy already, and other special classes, but was stuck in the special education room most of the day.
She is very social, and this made her very upset, so much so that I was called almost daily because of the melt-downs she had. I finally had had it with that school after many broken promises.
We moved before she started 4th grade, and she hasn't looked back since! She is in a normal classroom with kids her age almost 70% of the day, she LOVES it! The move was made easier for her due to that her grandma works at the school.
She gets one on one attention from the teachers, and has improved so much since we moved. The teachers love her, and so do the kids. She is so much happier and has come a long way, she amazes her teachers with her progress, even though she's not at her grade level.. She is improving every day! I am so proud of how far she has come!
She has taught me a lot, and I hope she can have a successful, full life when she grows up.
She told me wants to be a good mommy just like me when she grows up.. That made my whole life!! I am blessed with the most awesome kids!!

Gayle smith
Oakland, NE

She chose me

From the moment I found out I was expecting I knew I would do anything for my child. I would fight endless battles and move mountains, as I'm sure many parents would as well. But in our case that willingness became more than necessary. My love for my daughter has motivated me to make things happen and accomplish more than I ever thought possible.

I found myself a single mom to my daughter by the time she was 4 months old. I was so in love with her though, my relationship status didn't matter. I still felt more complete than ever before. Around that time I started noticing little differences in my daughter. Although she was a happy baby with a smile that made it worth waking up for, she often seemed fussy or discontent. She loved constant movement and insisted on being worn almost all day. As she got older I could tell certain settings made her uncomfortable. Anywhere busy, loud, or bright upset her. As did other kids. She seemed on the late side to many physical milestones. A huge tip off for me was her resistance to eating solid foods. While other kids her age were talking, she was still silent.

By the time Angelina turned a year old I knew something was different. After voicing my concern for many months I told her pediatrician that I would not leave his office until we got a referral for an evaluation- something he was hesitant to do because of her age.

By the age of 15 months I had a word to all her behaviors and quirks that were so unlike her peers. Autism. Though a diagnosis gave us answers it has been anything but easy since. Getting treatment for a child her age with resources in our area has been challenging at times, but I have fought to get her the help she deserves. Many days it feels like when we make progress in one area, we regress in another. But through all of this I continue to celebrate her strengths and differences as who she is.

Becca
Gorham, ME

My little hero!

Hi my name is La Toya and my son has been diagnosed with Austism. It was a long time coming when he was little he would spin for hours, line things up neatly, hide things so that when he went back to that place he would find it. He also was nonverbal until he was four years old. He is now eight and doing well socially, and physically. He has major academic issues but working thru them.

My story is positive I wouldn't be the person I am if I didn't have trials and tribulations. I'm a single mother with a child with a disability and refuse to let any of that hold me or him back. Yes we have difficulties on a daily basis but we don't give up.

I love the fact that there is some many ways that parents of a child with a disability can express themselves. I thank you for the opportunity to speak!

La Toya
Syracuse, NY

Life is never boring with Daniel

I posted my story months ago. I had to do a follow up. Due to PDD-NOS my husband was on guardianship with the county. He won the case but was still on guardianship with his grandma. He asked me to marry him October 1,2013 and began his 10 hour journey to me. He walked, took a cab and waited 8 hours for a plane from Denver to KC, Mo. We eloped that same day; I've never seen a man so excited in his life to get married.
His autism gives him an amazing brain where he is always thinking. He thought of a way to get to me and I helped too. He never forgot me; his love is so true.
When we were separated he was the one always coming up with the plans to see each other! He has many gifts and talents that ordinary people do not process. He is not afraid to take chances. I am so proud of him. I am ready for a lifetime of adventure. Life is never boring with Daniel.

Anonymous
Kansas City, MO