Stories of Hope

share my twins (asd) and son-in adaped poem form to fit x

one by one the verdicts came that caused the pain inside
six little hands, one small world, how would we make the stride
dr's tell me you don't understand,this is why you cry
they say you may never learn, butterflies that cannot fly
they tell me when you bang your heads confusion is deep inside
they tell me it frightens you, a world without a guide
a world which i can't get to, for I don't have a key
a world full of frustration a world without me
i cannot see inside your mind nor take away the pain
my communicated answers makes noise inside your brain
you don't understand me, and take yourself away, you may get mad at me, when i try and play
please know my darlings that mummy wants to help so
I will always be there for you , never let you go
autism will not beat you, the strengths and you will grow
learning and development, along the path we go
we will move what is scary, and take knocks in our stride
and watch you grow beautifully, hearts filled with love and pride
for you are more than "autism", an individual which shines
a vital part of the family,part of me inside
you may never learn to read this but i feel it should be said
i love you with all my heart nomatter what the dr said
i hold you in my arms to comfort and warm
i tell you it will be alright cos mummy makes it calm
i may never have the answers, this you will see
but your own little world is going nowhere without me
no matter what we go through, no matter what we see
i loved you from the very moment god gave you to me

Janine
Milton Keynes, United Kingdom

Answers for Elizabeth

It was supposed to be a fun family trip to a theme park in Kansas City. In fact, the park's name is "Worlds of Fun". But for Jeremy and Amelia it was anything but. Elizabeth, Jeremy and Amelia's two-year-old daughter, threw tantrums while at the park -- screaming and pulling her hair. "It was miserable," said Jeremy. "It really was. We'd never had her in an environment like that before."

It was during that trip in July 2009 that Jeremy and Amelia realized Elizabeth's behavior wasn't just the terrible twos. "I'd say that's when things clicked," said Jeremy. "Everything -- the jumping up and down, the flapping -- that's when we really noticed (there was something else wrong)."

It was then that they started their journey toward an autism diagnosis, working with doctors and finally hearing the words they anticipated in March 2010. "We knew what was going on," said Jeremy, who has worked with adults with disabilities. "Our world didn't come crashing down. There was no depression. We just got to work."

Genetic testing also confirmed that Elizabeth had a duplication of the 22nd chromosome, which could lead to other problems with her health and development.

Anonymous
Wichita, KS

autisim a dark world

hello, welcome to my world called autisim it,s a dark and lonely place that leave,s your child locked in a wrold of thier own never to know joy or happiness they are locked in thier own dark little world because autisim is a thief in the night that come,s and steals that bright light and try with all your might you can not stop the thief in the night and your child is looking for the light switch but can not find it because of the thief in the night and you see everyday that your child slips away more and more the thief in the night does not care rich poor black white its always there the thief in the night ready to steal that bright light how can you stop something you can not see or hear till it is to late autisim is that thief in the night so we need to come together to stop the thief in the night before it steals any more bright lights and yout child is locked in the dark for ever never to know what a pleasure a hug can be, or a simple kiss and you long to hear the words i love you mom but you may never hear them because of the thief in the night let,s all come together and stop this thief in the night from stealing any more bright lights thats how i feel about autisim

kelly r
fort wayne, IN

The Best of Both Worlds

"If you've seen one child with autism, you've seen one child with autism." As a parent of two on the spectrum, I could not agree with this more. There is a certain loss that often feels irretrievable when first faced with a diagnosis. Shortly after being given two diagnoses back to back, I came to realization that I was given the opportunity to understand an enigma and parent in an extraordinary way.
The challenges I faced at the beginning of this journey for both of my boys were equally overwhelming. Nevertheless, the distinction between my boys remained apparent from day one. I admit, before I was able to fully accept my blessing, hope was not always there. I often heard that Early Intervention worked wonders on children who were diagnosed at an early age, and I eagerly expected rapid results. It is difficult to watch your child exhibit mannerisms that no longer seem "cute", but rather harmful. After a year or two with hardly any progression, what little hope a newly diagnosed parent builds begins to fade.
When my older son began to blossom into what is commonly referred to as "high functioning", I naively assumed his brother would follow in his footsteps. Along with a high-functioning child come amazing qualities and little quirks (echolalia, perfectionism, etc.) that I embrace in my son whole-heartedly. However, along with a low-functioning child come violent self-stimulatory and self-injurious behaviors, with little to no communication or self-help abilities.
As challenged parents we are in tune with our frustrations, as I'm sure our children are as well; after all, how often do are we faced with the screeching sounds of frustration from a fierce yet angelic child who just can't find it in them to say "mommy".

Julianna Gil de Lamadrid
College Point, NY

Tyler's Story - The Best Thing Ever

Tyler was born in 2002. My pregnancy was normal until my 20 week sonogram, when some spots on his brain and kidneys were detected. Everything came back normal, but during childbirth his heart rate dropped drastically. Despite that, he was born healthy and perfect. Tyler did everything later than his older brother. Walked later, talked later, potty trained later. In preschool after observing him socializing, his teacher suggested a meeting with his kindergarten counselor and psychologist because off his "off" behavior. While weighing this option, I read an article online about a child with something called Asperger Syndrome. I researched AS and was floored as I read what described my six year old to a tee. We took him to a pediatric neurologist, and soon after got his diagnosis from a children's hospital. He had Asperger Syndrome, an Autism disorder. It was a devastating but eye opening discovery. Since his diagnosis, our family and his school have come come together to make sure Tyler has the best care and education possible. Although it is a struggle everyday for our family as well as Ty, we take it step by step.
Tyler, now eight, is an outgoing, polite, enthusiastic, energetic, brilliant ray of sunshine. He sees the good in everything and everyone. He refers to most things in his life as "beautiful," and I could only wish to see the world through his innocent and optimistic eyes for one day. He is an academic whiz, and every teacher's dream. Polite, happy, loving and affectionate, my Tyler is the best blessing a family could ever have. Though he will have struggles in his life, I am confident that with our help and support, he will live the life I know he can. The life he deserves. Because he's the best thing ever.

Jenna
Champion, OH

Zackery's Story - The Beauty Of Life

Zackery was born in 2001, it was a hard pregnancy and on the day of his birth a problem occurred and his heart rate dropped with every counteraction that I had so the doctor had to work fast to get him out. When he was finally here there was nothing wrong with him and he was perfect in every way.
He grow like any normal child and we didn't think anything was wrong until his school did a IEP on him and come to find out he my have Autism. The school did more tests an indeed he did have Autism. I cryed thinking I had did something wrong for him to be this way but later realized I had done nothing wrong and god had made him this way for a reason and I was blessed to have my special boy in my life.
Zackery is the most outgoing, loving, caring, giving, selfless and happiest child anyone could ever have the privilege to meet. He see's things differently then we do, things in this world are beautiful throw his eyes. He has showed me how to see things the way he dose and that is a great gift. He has touched everyone that has been blessed to meet him in some way or another and I'm grateful everyday that we have him in are life's.
Zackery has shown me that Autism is not a disease or something that is wrong with someone but a gift to see the world as it truly is. I was given a gift when I was given Zackery and I'm grateful every day for that and I know Zackery will keep touching people's lives the way he dose and that will make the world a better place because of him.

Starla
Middletown, OH

Kadens Story

Kaden was born in September of 2004. He was a wonderful baby weighing 7lbs 6oz and 19 inches long. He made most of his milestones a little bit late. Then all the behavior stuff started.. Banging of the head, Running and Walking on Tip Toes, Hand flapping. I didnt notice any of it being werid. He was my little man.. So when my sister came to me and said I hate to say anything but have you ever heard of Autism? Of course I said no whats that.. She did the right then she had printed out the smythoms for Autism. I started to read them and I just couldnt believe what i was reading. I agreed just to get her and the rest of the family off my back and I called the dr the next morning. He sent us to Cincinnati Childrens Hosptial. We started everything in March and then July 15 came and it was the day I got the results from all the testing. She said your son has High Functioning Autism. I've had a tough time dealing with it even tho it's 3 year today.. I still have trouble accepting it.. Seeing what my niece and nephew can do but he's not able to.. But we're getting there.. Potty Trained at 4 they said they didnt see him trained until 8 that's a 4 year difference.. His first time on a tubing slope.. First time on a RollerCoaster... and How i see improvements on report cards.. Im so very proud of him.. and Im so honored to have a child like him! He's one of a kind.. I just love him so much.. and He just shows me that no matter what happens we'll get through it.

Ricki
Middletown, OH

The Right Stuff

When my son was first diagnosed 12 years ago there was not much information to guide us through. His doctors told us that he would never have any functional language, never attend a "regular school" and would have to be institutionalized by adulthood. That didn't fly with me. I found out that ABA therapy showed remarkable success in kids with autism, unfortunately at the tune of $160,000 per year we weren't going to be able to give our child that kind of leg up. That was also not acceptable to me so I flew to NY where a high school friend of mine had a therapist for her son. They taught me the program and I came home and trained my other kids, family, friends and we began the daunting task of providing my son with 40 hours of therapy per week. He also attended an autistic preschool that gave him an additional 10 hours of therapy per week. He graduated from pre-school as the only child that would be moving up to a "regular" kindergarten without an aid, and he started at the age he was supposed to start school, 6. The first two years we found out that they were not even following his IEP because the teachers were not aware that he was autistic!! He's walked through many doors that were supposed to be closed to him and in the fall he'll be walking through another one, high school. "Regular" high school. I've often been told "if you didn't tell me he was autistic, I would never have known"! There IS hope!! It takes alot of hard work, but you CAN get there!! Don't lose faith, and never let anyone tell you that your child WILL NEVER....

Joelle Virgilio
Poughkeepsie, NY

Evan - A success story

Evan was born in 2003 when I was only 23. He was an unusual looking baby and after he suffered a seizure after birth, he was sent to NICU. Though tests showed he had suffered a brain hemorrhage, I refused to believe anything was wrong though he refused to breast feed and would cry when held. I would have to prop a bottle up for him since he disliked being held so much. He also had terrible reflux. The few words he was saying disappeared and though he seemed to be on the brink of walking around age 1, he regressed and didn't walk until 17 months. At this point he was very high strung and self injurious. He would continuously bang his head on things and loved to run himself into walls. He was diagnosed with severe autism at 19 months. He spent most of his time spacing out but loved to watch something dangle. He finally began talking at age 4 though it was limited to one word responses to my questions. He also potty trained around the age of 4. Often I had to talk to him in a sing song voice to get him to pay attention to me. He wasn't really capable of conversation until around age 6. Today however he is 8 and is doing really well. He tries to be social and does well with conversation. He has made tremendous progress. He loves video games and swimming. I still have high hopes for him. He is 8 physically but seems to be 5 mentally. I've always kept him as mainstreamed as possible and he plays rec sports just like any kid his age. I'm incredibly proud of him and he has taught me so much about patience and resourcefulness.

Vicki Dixon
Wallace, NC

BABY HEATH

OUR GRANDSON WAS BORN IN MAY 2008. HE IS SO BEAUTIFUL. LITTLE BLOND AND BIG BLUE EYES AND THE WHITEST TEETH! HE WAS YOUR TYPICAL BABY LEARNING TO TALK AND WALK. WHEN HE MASTERED HIS WALKING HE THEN STOPPED TALKING COMPLETLY. HE JUMPED ALOT AND MADE SOUNDS BUT NO MORE TALKING. DID NOT MAKE EYE CONTACT. OF COURSE HE WAS DIAGNOSED WITH AUTISM. I REALLY KNEW NOTHING ABOUT AUTISM BUT WHEN YOU HAVE A SPECIAL LITTLE PERSON LIKE HEATH YOU LEARN FAST AND READ ALOT ABOUT AUTISM. EVER SINCE HE WAS BORN I'VE ALWAYS CALLED HIM BABY HEATH. I STILL CALL HIM THAT. THE NAME JUST FITS HIM. AS MONTHS WENT BY HE HAD THERAPIST THAT CAME TO THE HOUSE TO TEACH AND PRACTICE DIFFERENT SKILLS WITH HIM. HE LOVES SIGNING TIME DVD'S, DIEGO AND SPONGEBOB. HE USUALLY ONLY WANTS HIS MOMMY TO HOLD HIM SO I DON'T PUSH MYSELF ON HIM BECAUSE I DON'T WANT HIM UPSET. BUT THE CHRISTMAS OF 2009 HE WAS WALKING AND I WAS GOING FROM THEIR LIVING ROOM TO THE KITCHEN. HE CAME UP BESIDE ME AND GAVE ME A HUG. I FELL APART! I STARTED TO CRY AND TOLD EVERYONE THERE HE GAVE ME A HUG. NO ONE COULD'VE GIVEN ME A BETTER CHRISTMAS PRESENT. HE TURNED 3 THIS YEAR AND GOES TO SCHOOL. I CRIED THE 1ST COUPLE OF DAYS HE WENT TO SCHOOL BECAUSE I DIDN'T WANT HIM TO BE LONELY OR SAD. I DON'T KNOW WHAT IS IN STORE FOR BABY HEATH WHEN HE GETS BIGGER. I DO KNOW THAT MY SON AND DAUGHTER-IN-LAW DO ALL THEY CAN FOR HIM AND GET HIM THE HELP HE NEEDS. HE IS A SPECIAL CHILD FROM GOD THAT HAS A SPECIAL PLACE IN OUR HEARTS! WE LOVE YOU BABY HEATH. GRANDMA & PAPPY

Jennifer Moore
Chambersburg, PA