Stories of Hope

Autism, The Diagnosis

It was 2001, We were living in Phoenix Arizona and I had recently turned 21. In recent months my son had stopped eating all the foods he loved so much and he also stopped talking. He had begun making humming sounds and flapping his hands when he was excited and would constantly so repetitive motions. People kept telling me that boys usually developed slower than girls (my oldest is a girl) and that he was fine.

Months had passed and things did not progress. He began vomiting upwards of 20 times a day and sleep was sparse. I scheduled and appointment to be seen and get some answers. It was August, I had to take him to the Maricopa County Hospital to be seen. I remember sitting in the waiting room. I was so nervous. Then an hour passed and he began getting cranky and after 2 hours of waiting we were called back.

They sat us in your typical Room with an examining table and a desk with a PC. The Doctor entered the room and after speaking with her for a few moments I realized how detached from her Profession she was. She acted like bei there was below her. She asked me a series of Questions about my sons development and what recent changes he has made then left the room not closing the door behind her.

She returned to the room after about 10-15 mins and upon walking into the room she told me "I think your son is Retarded." I was shocked. "Retarded" is no longer a proper diagnosis. Who even used that term as a modern diagnosis? He went on to explain that she purposely left the door open so see if he would try and wonder out of it and he didn't. WHAT?! SERIOUSLY?! I was beyond angry. I had a few choice words for her.

I took him somewhere else and had gotten the proper diagnosis, Autism.

Anonymous
Tinley Park, IL

Falling through the cracks

My story starts when my son was about 3. I knew something was off. I kept asking the dr.s. they would reply he is fine. He started school. They put him in the iep program. Was in the special teaching and speech. The add on to his special learning every year. By the time he was in the sixth grade he was in modified classroom. Which made the other kids hateful. Still no one would listen. At 18 he was finally diagnosed with mixed receptive expressive disorder. The dr who did this didn't give him any kind of testing other than talking to him in his office nothing more. This came from a psych dr. Who do I need to take him to?

Susan lowe
Salem, MO

Ava's Journey

My Ava is 6 and just received her diagnosis and she is an amazing little girl. She is taking the world in day by day and each day I see the light shine that much brighter in her eyes. The diagnosis does not mean the end of your dreams for your child, it simply means the dream changes slightly. She sees the world from a different window but I meet her halfway and we walk together learning how to make the world make sense. She has overcome so much in her life so far that the sky is the limit. When she was 6 months old she lost everything due to seizures and we were told she would not walk talk or be able to do much. She is doing all that and then some!! The first thing you learn with a child with autism is that the only limits are the ones you set. Celebrate the little things as they turn into big things. She is a loving caring little girl who has hugs and kisses for me and her family. I was so sad at first when I knew she was autistic. We knew far before she was diagnosed something was not right so we did what we had to, we were sad, we cried, we worried, but we made sure she got the help she needed. Be your child's advocate, their voice, their strength but be their mom or dad who just lets them be a kid. I guess the point I am making is a diagnosis is not your child it is simply a word, and that word does not prevent your child from developing into what they will be. Ava has made me a better person and she is my inspiration and she is my hero, she may not speak a 1,000 words quite yet but she tells her story if you listen. My Ava may have autism and she may not be "normal" in some people's eyes but those who walk to the beat of a different drum make waves!!! <3

Anonymous
Casper, WY

Embracing My Amazing Son, Bradley

My son Bradley was diagnosed with Pervasive Developmental Disorder, NOS at age three. Initially, I prayed for God to take away Bradley's autism. I knew God was powerful enough to remove Bradley's autism if it was His will. Bradley's symptoms weren't severe, but I worried about his future in public school with learning challenges and possible ridicule from classmates over symptoms like hand-flapping. After a year of hard work with speech therapy, occupational therapy, physical therapy, private tutoring, application of these services in our home, and the birth of my second son, we were seeing gradual improvement in Bradley's communication, social skills, and focus in learning.

Public Pre-K was approaching and I was concerned about how the next year would go for Bradley. It was then that I realized that my prayer for Bradley's autism to be taken away was the wrong attitude to have. God doesn't make mistakes. Bradley is perfect the way God has made him. It wasn't Bradley that needed to change, it was me. My prayer life changed to focus more on God helping me become a better mother and advocate for Bradley by helping him in every way I could. I am a licensed therapist and psychology instructor for a community college in Texas. While Autism Spectrum Disorders were not previously my area of expertise, I have made it my mission to become as educated as possible in understanding and treating Bradley's autism.

Bradley is now 5 years old and continues to make improvement in all areas. I am thankful for the work God is doing for Bradley through me. I am now working to educate my family and community by blogging about Bradley's strengths and challenges and embracing him for the wonderful and amazing little boy he is.

Jodie Hutchinson
Boling, TX

How my 8 year old took the news that we FINALLY got a diagnosis after 5 years.

My 8 year old has been recently (and Finally ) diagnosed with Aspergers last month. It has been a 5 year battle and he has been home schooled for the last 2. My husband and I sat him down and tried our level best to explain it to him. He seemed to have got it for the most part, let's face it, after 5 years and being home schooled, he had a small inkling something was up. After we spoke to him, he just looked at us and asked to go swimming. That was it? Alright :D , we had more ready, but nope. Xan wanted to go swimming. Dig that boy
We have an underwater camera that takes pretty cool pictures and he and his siblings had a blast that day just snapping the coolest, and yes, goofiest shots! A Couple of days later we were looking at the pictures and I said " Xan, you are all Blue, That is the color for Autism.". He looked at me ( With His BIG Blue Eyes) and says "huh, that's cool. Blues MY Favorite color!.". So we made this (Luckily he has a comp. savvy sister) and told him what we were writing,and it has become one of my most favorite pictures of my youngest of 6. Thought this might brighten your day and make you smile, as it does me.

Anonymous
Coosada, AL

My Angels

I have three on tone spertum of autistic they have a chromosome deletion, ate below level of schooling. We work with them the best we can since no help from anyone wouldn't change a thing they are perfect

Melissa Barba
battle cteek, MI

little Noah

My son Noah has been amaizing in my life. We knew from the day he was born something was different with him. July 1st we got Noah autism spectrum disorder diagnosis. I knew it was coming however still didn't fully underatand. I must say understanding autism in a child who has a number of other medical issues has been a challenge. However not one I'm.not willing to over come daily. I'm glad we have one answer to Noahs medical issues. Everything else., including his liver disease might never be answerd. Now we can have the teachers work with him in school better. And start learning parenting tips to help us become the best we can for Noah. Our oldest son Jayms, I would like to say, has been amazing for his brother. He trys every day to be underatanding and each day his love for Noah grows stronger.I hope I can only continue to teach both my sons to be respectful young men whom are underatanding to others. Decreasing the chance of bulling and or neglectful of other kids who are in need of friends. Someone once told me, nothing can prepare you for the challenges you will face when you become a parent. At the time you never think you will be the one going threw some of the stuff we have. However I am glad, to this day, I know I'm not prepared but I am motivated threw my children to never give up.
Thank you for reading our story

Amber
Calhan, CO

The day I woke up and embraced life

I have been thrown around and used as a lab rat my entire life. No one could understand my problems. Until one temp. doctor read ALL of my journals and told me that I was a pitch perfect case of aspergers.
My contactperson started to think about it and everything just fell into place.
I found myself for the first time in 32 years, all my issues and problems had a name!

Since then I have been getting help with my difficulties and I embrace the interests I have. Now I am trying to give back and I will give 10% of every piece of jewelry/wearable art that I sell in my etsy store. I am an artist and I am accepted for that. If I can give back so that others can get the diagnosis faster, especially girls and women since no research is done on us.

Blessings//Veronica

Veronica Jonsson
Lycksele, Sweden

About Noah !!!!

My sons name is Noah he is now 4 years old.
I started to notice a little after 18 months that Noah stopped saying words like "mama" "dada" and that his eye contact when you were speaking to him, he wouldn't look at you. I waited awhile prior to calling the dr thinking maybe it was just a phase he was going though, I would sit with him daily saying " say mama" I was so torn inside .
I called the dr and they sent me to birth to three and also to the children's hospital to get the evaluation for autism.
We got started with the birth to three program and they qualified him for autism services, at this time is was about 9 months that we were going to have to wait to see the children's hospital. Birth to three came in 5 days a week 2-3 hours a day, he received speech , behavioral services , and OT.
Meanwhile all this was going on I went back and thought where did I go wrong? Did I eat something? Was this my fault? My guilt was overwhelming. Between myself and my husband and the team from birth to three we gave Noah everything he needed. Now at 4 years old Noah talks , goes to the pre- school program he still receives OT and has an aide on the bus and when needed in the classroom now. He's come along way and we are so proud of him. Being told your child has Autism is not easy and thankfully my family has really come together. I'm thankful everyday for all the love and support we have and continue to receive.
Thank you for allowing families to share their stories I think it helps every parent hear the different stories.

Brittany Auxier
Lisbon, CT

I was 15 years old when Autism changed my life, forever!

In 1982 my mother, a school psychologist told me she would be taking over the direction of the summer camp serving children with autism in High Falls, NY; Camp Huntington. I was 15 years old back then. And I was frightened at the thought of living that summer with people with disabilities. My mom explained to me that I would not be working directly with the campers. Which made me feel safer. Of course, as life would have it, one of the counselors didn't show up and I was asked to help out in one of the camper groups of teenage boys with Autism. This was the first time that I heard the word autism. I had no idea what autism was. I dove right in to helping my co-counselor with six campers and all of their daily needs and activities. Each camper had an amazing and rich personality. I was fascinated by how interesting, energetic, smart, creative and playful they all were. And while they clearly had their moods and desires to be left alone at times to do their own thing, they clearly had an emotional connection with me that made me curious and connected to them. They were different than me but also very much the same. I loved working with those campers that summer and I cherish every memory! I've remained at that same program for the last 31 years, and as life would have it, an interesting turn of events last November 2012 I was able to purchase the program and am now the new owner. It's an honor to continue to guide this very special program forward and to do as much as we can to serve the needs of our campers; to give them dignity and a fun playful environment that is safe and motivating so they can continue to have incredible summers. Come visit us to see some real magic! Www.camphuntington.com.

Daniel Falk
High Falls, NY