Stories of Hope

We Face Our Challenges Together

We've known our son Krisjon was exceptional since he was about 18 months old. He had many interesting quirks. One thing that stood out was he had no desire to connect with anyone outside our home, including aunts, uncles, and even grandma. Because his twin brother was a social butterfly, this had family members perceiving him as the "mean twin" or the one that "doesn't like anybody".

As the boys grew, their personalities couldn't be more distinctive. My roots as an early childhood professional have always encouraged me to embrace individualism, so I wasn't concerned that one son enjoyed traditional toys and the other preferred manipulative items such as empty bottles, string, tape, etc. I viewed it as unique and creative!

What did pique my interest was the social aspect. Krisjon did not seem to understand personal boundaries. If I held him he would slap my cheeks with both hands or headbutt me in the stomach, not comprehending how much it hurt. At age three, he was still reserved about interacting with others, was often frustrated with fine motor activities, and was extremely active (running back and forth through the house, spinning, jumping off beds, etc).

Our initial suspicion was he may have ADHD - it runs in the family. After learning a little about ASD, my partner and I discussed this as a possibility as well. We voiced our developmental concerns to our pediatrician around Krisjon's third birthday. At age four, he was diagnosed with Autism Spectrum Disorder.

It has been a little over a month since our official diagnosis. Though it took a few weeks to get in order, he will begin ABA therapy next week. We are still on the waiting list for OT. At home we are working with him on aggression towards others and connecting with individuals outside of our home. We are also focusing on handwriting and other milestones relevant to starting school.

Our family is just embarking on our autism journey. Though we are uncertain of the challenges we may face, the one thing that is certain is we will face them together.

Kris O'Neal
Hampton, VA

My Life With High-Functioning Autism.

I'm Dave Belk,Age 47 from Charlotte NC.Hometown:Greensboro NC.Have one parent,Mother.Widowed as of 9-20-09.Diagnosed with High-Functioning Autism at Age 15.Had it for 31 years.My early life was full of ups & downs.Had a virus at toddler age,Nerve in right ear was cut off.Had tonsillectomy at age 6.Later life was fitted with eyeglasses at age 12.Been examined,studied,& tested to really find out what makes me function right.To this day I face with positive & negative sides of my autistic handicap.Also had MRI brainscans at Duke Medical Center In Durham NC.& at UNC Hospitals In Chapel Hill NC.Have a fine family & some friends from past to present.My hobbies are:Railroads,Fire Engines,Ambulances,Sports,Music,TV/Movies,U.S.Travel,History,Comedy & Nature.In the past 3 years I put my autism to the test by driving old steam locomotives in Petersburg WV,Roanoke VA.& Bonsal NC.Had some good instructors to show me how the components work & to keep my eye on the rails at all times.Did fairly well & earned my 1st certificate of recognition.Looks like I'm on my way to bein' a good student train engineer.Have the historic uniform to prove it.I'm not quite ready for larger locomotives.But one day might get another chance.I attend Autism meetings & once a year conferences to learn more on about brain disfunctions & how it would help me to become a better person as I grow older.To this day,First Responders need to learn how to interact with autistic people no matter how mild to severe the autism is.Case in point:1998 & 2002.Greensboro NC.& Spencer NC.Even museum personnel need to listen.We need to get involved people.Autistic clients shouldn't continue to be treated this way.Hope one day,There'll be treatment for Autism.I speak & walk for Autism as I stand for it.I like bein' a state spokesman/recipient.Hope you'll meet me soon & learn of my life with Autism.For now,I rest my case.Good bye till next time.

Dave H.Belk
Charlotte, NC

My work of ART...

When I was pregnant, I would rub my belly and tell my mom, "You know, this is a special baby..."

I had no idea how true those words were...

We moved from FL to AZ when he was 8 months old, and what a trip that was. My friends in AZ were the first ones to point out his developmental delays and "odd" behaviours, suggesting that he may be Autistic. I pointed out how unstable and traumatic his life had been up until that point, did they really expect for him to be "normal"?

We got the official diagnosis when he was 4...

It has definitely been a struggle, but nothing in life comes easy. At 13, he is still non-verbal (although knows some sign language), and his biggest frustration is his inability to communicate with people...that, and being told "No"...

Autism, to me, is a jump in the evolution of the human mind...and they are still stuck in the primitive body (and world). I tell my boy that I know why he doesn't talk...he has the secrets of the universe locked in his head, and he's not allowed to tell anybody yet.

He's an AWESOME person, and definitely my greatest masterpiece!!!

I Love You, my Beautiful Boy!!!

Carla
Jacksonville, FL

Conner's story

Conner was born 2 weeks early....he was seemingly a very healthy baby at birth. I noticed a few things, like how easily he was to startle, that he didn't seem to sleep well, that he cried a lot.. I thought that this was all normal newborn stuff..I started to breastfeed, he didn't take well to it, his suck wasn't very good, and he would scream and cry when ever he would come off the breast. Bringing him home wasn't any easier, I cried as much as he did. 2 wks of trying to nurse failed miserably. He didn't gain well, he didn't nurse well, he screamed at everything, and I mean screamed like he was in pain.There was no different cries....

as he grew he was always late or on the verge of late for milestones. He still didn't sleep well. He was obsessed with ceiling fans, floreresent lights were calming. He didn't like loud noises, would cry when we went out, got over stimulated easily Not to mention the bowel issues we dealt with on a daily basis.

at 15 months he wasn't pulling to stand, he wasn't cruising, It was then that he was referred to therapy. He was diagnosed with low muscle tone (hypotonia), that effected more then I realized. At 24 months he wasn't speaking, back for another eval, this time with speech......

He had and still has severe sensory disorders, he wasn't potty trained until age 5 due to bowel issues..At age 6 he was finally diagnosed with Aspergers syndrome, after 2 years of testing and complaints from his school...He didn't make friends, he wasn't able to understand how kids play, he doesn't like change of any kind, He was very rigid on his routine, He craved and needed one on one attention from the teachers to learn. He would have meltdowns, or most often then not, would just completely shut down, and sit doing nothing..

we now homeschool, he's come a long way, but there is still so far he needs to go....Some things have changed, more then some has stayed the same.

Beth
Milton, FL

My Blessing .

Abbie was born a healthy bald headed , blue eyed baby girl . She stole my heart the first moment I looked in her eyes . She turned over on time . She didn't set up until she was almost 7 months old .She didn't walk until she was 18 months old . Around age 2 I noticed she was different . She would bang her head on things and have extreme fits of anger . Me not knowing what was wrong with her I just thought she had a terrible case of the terrible twos. She couldn't talk very well . She would point instead . I took her to the doctor and was told nothing was wrong with her , but in my heart I knew something wasn't right . One day when she was 3 I took her to the park and there was another little girl there about the same age . It was then that i saw that she didnt know how to play with her and she was interested in her , Abbie wasn't diagnosed until the age of 4 . We where told that she wouldn't amount to anything in her life . This alone broke my heart . I cried and blamed myself . Then I realized that my child was still the same child with a diagnoses . Abbie went to public school for 4 years where she slipped through the cracks . She wasn't learning anything . My child couldn't read nor write . We pulled her out of public school after she was being abused and mistreated . She is now home schooled and she has progressed in many ways. She is very smart , she reads and writes . Her vocabulary is huge . She is learning so much . Not only is she smart she also has a huge heart . Her love for her family and her friends is unconditional . She loves with her whole heart .

Anonymous
Gastonia, NC

Autism is Unique

Most stories start with “we knew right away something was different” or “we knew something was wrong when we weren’t hitting milestones.” Our story is different. It seemed like the issues that we were dealing with were all typical: biting in daycare, frustration when over stimulated, strict routines, fixation with certain toys. Nothing hit a trigger for us until Kindergarten. The first day of school went terribly wrong! In the first 2 weeks of Kindergarten, A.J. had several meltdowns, punched a principal and was spending more time in the office than he did in class. He was written up, paddled and suspended all within those first couple of weeks. He was quickly labeled a bad kid. I knew something was wrong and soon A.J. was diagnosed with ADHD. Kindergarten and first grade were hard! We were blessed with a great teacher for second grade; she had patience and loved our son. He began to prosper and we were beginning to pinpoint his triggers. Then, I was given a project at work for Autism Awareness. Everything I read was describing my son! I talked to our pediatrician and he was referred for an Eval. He was diagnosed with Autism/ADHD at 8 years old. But, I wasn’t sad, I was relieved! There was a reason; there were answers. It was reassuring to hear much of what we had learned to do on our own, was right. He. is doing great now in third grade. He made A/B honor roll and received a citizenship award! Like Autism, our story is unique. The details of what happened during last three years would bring tears to your eyes; but, our story has a happy ending. I won’t say that all our hard times are behind us, but the path is smoother. There are a lot of people who are not educated about Autism, and they can ruin your day. For those they get it, it is a blessing! Since diagnoised, we are able to get the services that he needs. I am an advocate for talking about Autism. I wish someone had talked to me.

Alisa Logan
Benton, AR

An Uphill battle with an Amazing View at the Top

My daughter was diagnosed with autism at 17 months...it was reconfirmed when she was 21 months...she didn't talk, she didn't want to play, at times I didn't even know if she could hear me...once the diagnosis was unanimous, I immediately started to get all the information I could and all the help I could for her...she wasn't responsive to it at first, but once she started to continue with it, she excelled...as she started to speak more and more, everything about her changed...she was happier, she was more responsive...she's now 8 years old, been mainstreamed since kindergarten and is at the top of her class...she still has her meltdowns and still needs her space but now she interacts with her family and has even been able to adapt to a ton of new changes in her life...moving, a step-father with 2 step-siblings, and a brand new baby sister...although, it does take its toll on her, she has been able to adapt and cope better than I could have ever imagined.

Anonymous
West Jordan, UT

Welcome to My World

The story title comes from a project I did back in school around 20 years ago. I was surprised to see that they now use this expression in many writing. I claim the title as I came up with it. I have two beautiful girls, my youngest now 21 was diagionased with Autism when she was 3 years old.She is on the left of the picture i submitted. She is not only beautiful but smart, sensitive, and compassionate.

Its been a long journey and I encourage many parents to never give up, just when you think there is nothing else you can do for your child, something or someone steps in and you once again move forward. We had many behaviours over the years, with many behavioural programs put in place. Its been a long hard struggle, but well worth it.

Never give up, they call our children exceptional and yes they are. I was blessed with her older sister who understood, helped and loves her sister to the stars and back. There bond is unbreakable.

NEVER GIVE UP

Dolores B. Lindo
Sudbury, Canada

My Ash with Aspergers

Ashton was born on April 5th, 2006 and has always been a little different. I knew it even as a newborn. As he grew, his uniqueness began to show more and the rest of my family thought he would grow out of most things. The bigger he got, the more negative and defiant he got... along with more and more ticks and obsessive/strange behavior. The bigger he got... the more I knew I couldn't give him the help I knew he needed. After doing everything we could to help control his behavior, I toiled over sending him to a therapeutic foster teacher. I new something wasn't right.... but autism never crossed my mind. Even after being in therapy at least a year by then. He was a light switch. Sometimes his was loving and sweet, others it was like he was a different child altogether... angry,defiant and no fear or respect for authority
I ended up deciding to send him to his foster teacher with out very much support... and I felt horrible. But I needed someone else to see what I saw everyday. I was able to talk to him plenty and always let him know how much we loved and missed him, but we had to figure out how to help him be a happy child. After a while, my family came around to realize that he really was different. His foster teacher was our life saver. It took a while, but in the end, we finally figured out that Ashton had Aspergers with ODD/ADHD. He is home full time now
Everyday is a struggle, but now we have the knowledge and training to understand and deal with who he is. Now, he is usually much happier and very smart and more creative. Now, we have him in the proper classroom to help him learn better. Even though it is still rough behavior wise, there has been an amazing improvement and we are VERY proud of him and his support system has grown way beyond just our little family. Ashton has been my teacher...

Heather Cannon
Bowling Green, KY

Born Special & Unique

I was born in Dayton, Ohio on April 10, 1975. I started elementary school in the first grade and that's where I started having trouble understanding subjects at school, had trouble concentrating on schoolwork, and trouble interacting with people of all ages by being almost non-verbal and shy. So my mother took me to see a specialist and they diagnosed me with autism. So I was sent to special education a year later in the second grade. Special education had helped me a lot including speech, simple tasks, and helped me interact socially plus I took regular classes too. My favorite things in school was being a participant in Special Olympics, field trips, and being in the glee club which I love to sing plus I went to my senior prom. I graduated from high school in 1993.
I went through various churches by attending bible classes, singing in choirs, and I sang a solo in the Christmas program at one of the churches. Until I found one which they have a class for people with special needs. It's called ANGELS class at Abundant Grace Fellowship in Madisonville, KY plus my uncle also attends there. I loved everyone at that church and every year we had the benefit singing by singing Every Move I Make and raising money to put in our church camp fund at Camp Crestwood outside Louisville, KY. I even went to camp for 2 years in which they helped me be open and overcome my shyness by interacting with them, did fun activities, and I even showed them my talent by singing in the Talent Show.
My experiences in life had taught me to be a better person and stop being afraid of everything that troubled me but to speak my mind and become a better person. I'm planning to get a driver's license and my own car so I can drive myself to the store or anywhere I want to go and maybe do more volunteer work. I was born to be special and unique in my own way.

Kim Jackson
Hanson, KY