Stories of Hope

My JennaBug

My Jenna was Born in 2003 and immediately i knew something was special about her. Born without a "Suck reflex" she was taught how to eat slowly. She was delayed in Gross motor and fine motor significantly not walking till 18 months old. At the age of 2 she would walk from the front of my house to the back for two+ hours and if you tried to stop her she would have a meltdown, Her food could not touch, and if she did not wanna be touched you knew it. I took Jenna to KKI for them to just say she has ADHD that she did have signs of PDD-NOS but because she gave eye contact and walked up to a person smiling she did not fit. The struggle to find where my Jennabug belongs has been a Long and hard fight. She is now 9 1/2 and her doctor says she is indeed on the spectrum. After being kicked out of 2 schools and being placed in a special program we are STILL fighting to get a complete diagnosis. She is a very loving and bright young lady smiles all the time and loves her two little brothers I wouldn't trade her for any other girl in the world.

Jessica Smith
Glen Burnie, MD

My Joey

I always knew Joey was different, I just did not know why. He did not have any developmental delays. In fact, when it came to language he was leaps and bounds ahead of other kids. By age 2 he knew all his letters and the sounds they made. When he was 2 1/2 he threw a toy across the room and when he was reprimanded for doing so, he replied, "But it was defying gravity!" At age 3 he was reading.

But as thrilled as we were with all of this, we were also very concerned. He had sensory issues. He hated wearing clothing of any kind. He was a very picky eater. And certain sounds bothered him so much that just the sight of a hand dryer in a public restroom would send him running away screaming!

And then there were the meltdowns! Screaming violent fits like nothing I had ever seen before and I was a preschool teacher. Those meltdowns got Joey kicked out of two preschools.

I had Joey evaluated for the first time when he was two and they said, "Yes we see some things, but he may outgrow them." Finally when he was 3 1/2 he was diagnosed with Aspergers. At first I was relieved to finally have an answer, but then depression set in and I cried and cried.

Finally I realized this diagnosis was not a curse. It was a blessing. I educated myself on parenting a child on the spectrum and I became an advocate for my son.

He is 6 now and in a special program at our public school called Making Connections. It is a self contained classroom for children with high functioning Autism. He still has rough days, but it is getting better.

Diane
Tomball, TX

My amazing and everchanging son, Keegan

My son Keegan is 1 of 4 children. He is my only son, and the youngest. He has 3 older and (awesome) sisters, Kaylee, Kristen, and Kendra. I knew Keegan was different from the start and I was right. We found out early on that Keegan had Autism. To be honest I was relieved. At first I thought my son just didn't like me, but when they told me he had Autism, I was elated. I knew at that moment he liked me he just didn't know it yet. Keegan has had some excellent people in his life who have helped him become the awesome person he is today. Keegan enjoys bugs, video gaming, and playing the trumpet. When Keegan grows up he wants to be a museum curator, or a gamer. He is almost a straight A student, but he struggles with algebra. I am proud of what my son has overcame, and what he is going to overcome in the future. I couldn't be more proud to have been blessed with an Autistic son named Keegan James Walters.

Robin Walters
Anderson, IN

Different, but not less..

We always knew Ayla was different. During her first year, she had colic, and never really slept much. As she got older, it was apparent that something was not right. At family gatherings she seemed tense, and often withdrawn. She did not speak, and was often having fits because she could not talk to us. During social times at day care, she was withdrawn, and lashed out at other children. We also started to notice things that seemed were not appropriate for her age. She could count up to 10 and backwards, and count up to 20. She could count in 10's, new her entire alphabet, colors, and shapes. She did not really play with toys, but would rather read books.
At three years old, our day care suggested she showed signs of Aspergers. After several meetings and discussions with our school district, we suspected (and accepted) that she may be autistic. We found a wonderful preschool that does early intervention, and so began her 28hrs a week of therapy. After two months she is already speaking, using three to four word phrases, and has begun to play with a little girl down the street. She is also memorizing the books we read to her, and reading them back to herself.
We still have many challenging times. The meltdowns have increased because her understanding of her environment is increasing, but she still has not figured out how to put words together to express herself. She has also began to show signs of sensory issues, such as hand flapping, head shaking, and finger twirling. I still catch her at times playing by herself at school.
Even with these challenges, it is because of having a great program, a proactive and aware school district, that Ayla has finally begun to come out of her shell, and show signs of this beautiful little girl who loves to sing, dance, and laugh. And because of my wonderful wife, my loving parents and great freinds, I am able to push through the harder times and see my child for the beautiful person she really is.

Travis
St. Louis, MO

I'm quirky, but I'm always ME.

My name is Candi Brooks, and I have high-functioning autism. I'm currently a college student majoring in Physics and Astronomy. All my life I've been misunderstood and considered "odd". Anyone who knows me even a little bit, knows that I'm nerdy, and most of the time downright eccentric. When I'm asked the question, "How are you?", I like to come up with a new response each time...two of my favorites are, "I'm Astonishingly glorious", and "I'm standing in the eye of the storm". Sometimes when I'm bored during a class lecture, I will pass the time by tallying how many times the professor says "um", or counting the number of people with blue shirts. The other day I was in Target and I walked past a person looking at a box of crayons, so I walked over and said, "The distinctive smell that you experience upon opening a box of crayons comes from stearic acid--which is the formal name for processed beef fat." Although some of these things are considered "inappropriate", these are the things that make me, ME. I'm writing this story, because I want people with and without autism to understand that it's okay to be yourself, and it's okay to be different. Don't try to impress others, just be REAL. I'll leave you with one of my favorite quotes, "I am in competition with no one. I run my own race. I have no desire to play the game of being better than anyone, in any way, shape, or form. I just aim to improve, to be better than I was before. That's me and I'm free."

Candi Brooks
Pittsburgh, PA

Truly blessed

I am a mother of 6 children that lived after birth I had one girl she was my oldest and my help with her brothers
And she is special she and now for my boys my oldest boy had down's and some brain damage and heart trouble and he lived until he was 7 and he die after have open heart surgery and then a I had another boy he is autistic and he has extra bone in his feet and there are bone that never grew they are very small and to go on my next boy is what they call a auto autistic and he has heart trouble and a extra heat beat and boy three he is autistic and heat and the last boy I had is autistic and has heart trouble and he had what we call a on and off he can be going and all of the sudden shut down but they are great kids I had a doctor tell me at one time the I was truly bless because God give special children to the won he know will take care of them I have learn a lot from my kids and they come up with some good thing I ask one of my son on mother day what were they going to get me and my son said to me I made you a mother what more do you want this is the child they told me would never talk at my house it is like having a 8 grade and 5 grade and 3 grade and a Kindergarten in the house but I am truly blessed I also have a grandson who is autistic and they are the joys of my life I have learn that no matter what we going though to find the blessing you I hurt at work and I have try to show my kids they can doing anything they want to do So if you are going though the storm of life just remember the rainbow will come just look for the blessing

Anonymous
Youngstown, OH

Joshua's Journey: How Vision Therapy helped my son with Moderate Autism who is now Level 1 on DSM-V

Joshua had strabismus eye surgery in both eyes at age 22 mos.He also was not speaking well and was referred to the infants and toddlers program through the County.Between 9/2008 and 5/2009 he went to KKI and JH to take part in a study they were doing.Which showed dev. delays as well.Early in 2010 the SLP at KKI recognized he had dysarthria.Not only was his speech impaired but his whole developmental process was delayed.Between the ages of 3-4 he had ear infections which led ear tube surgery.The Dr. stated that Joshua was hearing for 4 years as if you were under water.He has been going to a local SLP for years now.In August 2010 he saw a Neurobehaviorist for dx.The dx was PDD-NOS moderate autistic.We were told that Joshua would live with us for the rest of our lives, probably not be able to hold down a job, and probably not function well in society.In the meantime,he saw the Ophthalmologist on 3-6 mos. intervals.At age 4 he needed glasses.When he watched TV he was 2 inches away from a 57” screen TV.I said to him, sit back and watch TV,can’t you see?We went back to the Ophthalmologist and I would ask “Why is he standing so close to the TV with his glasses?Is he not seeing right?The Dr. just said he’s a boy he will grow out of it!His Kindergarten OT had a private practice and we took him their during the summer.She recommended the Sensory, Integration and Praxis Test (SIPT) which would then give us a greater understanding where Joshua was.Results came back below avg.The OT recommended vision therapy.We had never heard of VT.We decided nothing ventured,nothing gained so we saw Dr. Benshir for a consult.She said that Joshua’s eyes were treatable and that it would probably be ~1 1/2 yrs.Joshua enjoyed playing basketball and T-ball but his running was not great,his balance was off and he would not look me straight in the eye.VT is not a cure for autism but assisted in making Joshua's potential to function so much better in and with life.

Michele Hillman
Westminster, MD

My sweet girl, Megan

The morning I received the news my daughter was autistic was extremely difficult. She had developed ahead of her peers and then regressed. Her dad and I just thought it was a phase. With the news, I grieved what I thought my daughter would have been...all the hopes and dreams we had for her. The speech therapist gave us a gloomy vision of what she would do in her life. She would never know us as her mother and father. She would never love us or have a real relationship with us. To say we were devastated doesn't even come close to describing how we felt. We then met with a psychologist and speech pathologist in an early intervention program. They told me to never put limitations on her. She has all the potential in the world and to just stand back and watch the miracle unfold. And that is exactly what we have done. Megan was non-verbal and is now extremely verbal. She used to not notice any of her peers and now she has a lot of friends her love her for exactly who she is. She used to have lots of sensory issues and has learned how to navigate through those difficult moments. She reminds me daily of what is important and how not to complicate my life. She is truly a joy in my life. I adore her quirkiness and uniqueness. I love her honesty and sincerity. I am so grateful to be her mother and feel honored to have this privilege. I have learned to never underestimate her. She astonished me often on her capabilities and her drive to succeed I any task she is given. I look in awe as she navigates her life and enjoy all the victories she has every day. Her life has already made an impact on so many and I know she has more work of healing an teaching left to do in her life. She has taught how to love unconditionally. She sees the possibility in all of us and loves us through all our imperfections.

Melissa Allen
Bend, OR

Autism: The change that broke the camel's back

Right now I am 28 years old female and have recently come to a place of acceptance of being autistic. Life has not been easy, that is for certain. But I wouldn't trade the difficulties for anything! You know why? Because I have learned so much! Life has blessed me with challenges that although have been insurmountable at first glance they have showed me how strong I am as a person and as someone with autism. I am very fortunate to be able to walk as my mother was told by doctors that I would probably never walk. I am also very fortunate to be able to talk and communicate verbally (even though my favorite form of communication is writing!). I want my story to get out there because I have started to become more vocal about this part of my life and I want others to be more vocal as well. I want other autistic adults like myself to share their story and to celebrate their uniqueness as I have been and will continue to celebrate and rejoice in mine. I feel like autism is the face of change and revolution in this world and each one of us is the face of this change. We are meant to change what it means to be "normal" or "conventional". But we need to first accept who we are. We are autistic, yes we have difficulties, but that doesn't take away from who we are. It adds to who we are. We become "fixated" with certain objects, hobbies or intellectual matters. We are deemed eccentric or "weird" because of it. But that is the beauty of it. We become so passionate and entranced by these things that those things become a way we communicate to the world about who we are as people as opposed to a person who is autistic. And take those fixations and passions and turn them into something productive and meaningful as opposed to hiding them out of fear of rejection. Autism is the face of change, acceptance and appreciation. It starts with you.

Louisa Nelson
St. Croix Falls, WI

Story of Nicholas

My name is Christine. My son Nicholas was born 2008. When hewas born,I noticed alot of milestone issues. He had severe colic and lasted til 6-7 months. He walked at a yr,and started saying small words. During that time he also had ear tubes places for chronic ear infections. Immediately after surgery I noticed "no more babbling ".Started to pay close attention to past behaviors. Lining toys,fascinated with wheels,no eye contact,sensitive to touch & didn't like physical contact. So at 14 months he was tested and put on Spectrum. Waited til 2 to see a specialist. Was told that he'd never hug me or it's gonna b difficult to get him to speak. Well Nicholas is 5 now. Fully potty trained,very lovable and affectionate and speaks. Its been hard and extremely hectic but,I am truely blessed to have him in my life. I also want to thank this site and all the families for giving me hope and guidance. Because of that I pay it forward and help others in my situation. Autism is phenominal. What a rare gift.

christine Bradtke
Chicago, AL