Stories of Hope

Gavin's Story

This is my amazing son Gavin. Growing up he didn't seem different from other baby's he ate well he was a happy smiling baby as he got a little bit older he didn't make eye contact or respond to his name he didn't kiss or give hugs, few words mostly babbling. His 18 month check up his doctor was concerned that he wasn't doing what he should be doing at his age he didn't pretend play or respond to his name or make much eye contact or say many words his doctor told us to take him to early intervention. after googling autism I knew he has it, it was no doubt in my mind. So in July 2013 we took him to children's and was confirmed that he has moderate autism,We are doing therapy for speech and OT, and also early intervention. He doesn't talk much he says a few words mostly babbles a lot and makes more eye contact then he use to and he still doesn't respond to his name or play with others or pretend play he has a lot of sensory issues he spins, jumps, flaps his hands, screams and he has eating issues. He hasn't been in therapy long but is doing really well with it. He is my amazing son and he is so happy you will never see him without a smile he can brighten anyone's day his laugh is incredible. He loves music and sesame street he will fall on the floor laughing just watching that. Like they say autism is hard but loving my son is easy. He hugs when I hold my arms out hes kissed me twice his whole life but with every hug he gives me I cherish so close to my heart. The days he just lays in my arms brings tears to my eyes. I don't know what I would do without him. I wouldn't change him for the world. Autism changes nothing hes still my amazing smart little boy. Mommy and Daddy are so proud of you we love you with all our heart.

Lori
Cincinnati, OH

Getting to know our son with Autism.

When Colin started getting constant ear infections, the doc was able to see him more often than the usual check-ups. By 18 months, she was very concerned because he wasn't talking or showing his indications and wants. At about 8-9 months old he started banging his head for things he wanted. Eventually it became more violent, and unfortunately he had to wear a helmet to daycare and at home.
In the last year an a half, Colin started the birth to three program, was put on disability and diagnosed severely autistic. He speaks jargon language and has echolalia. He spends most of the day pretending to be an animal, usually a dog or cat, sniffing and licking, and mimicks noises and sounds almost to the tee.
He starts his IEP in pre-school at an elementary school with his brother this fall 2013. It's been a long road for us and Colin, and he is just beginning, with potential to talk one day, we look at our son in pride. He has taught us so much. Patience. To be ourselves, and no matter what love is all you need. We didn't start out with much as parents, and we didn't see this coming, but we have no regrets. We struggle, go through hard times, and now I understand how important it is to stick together, raise awareness, and support.
And with that being said, I think we can conquer all. I blog about Colin's progress monthly on my FB page and keep my friends and family close to us. Without their support and helping us and other families raise awareness, Autism has become more than just a diagnosis, it's become a gift from God. As my dad always says, God wouldn't give us an obstacle he didn't believe we could pass.

Brigitte Mahnke
Oak Creek, WI

SABRINA

WE ARE THE PROUD GRANDPARENTS OF A VERY SPECIAL LITTLE GIRL. SHE IS 5 YEARS OLD AND SAYS VERY FEW WORDS BUT IS LEARNING MORE EACH DAY. UNFORTUNATELY SHE DOESN'T GET ANY HELP AT HOME AND IS LEFT TO HER OWN DEVISES TO GET BY. SHE LIVES IN FILTH IS RARELY BATHED OR HER HAIR BRUSHED. THE PARENTS LOST CUSTODY OF THEIR OLDEST CHILD 9 YEARS AGO TO ME AND MY EX WIFE.ALTHOUGH THEY ARE BEING WATCHED BY CHILDREN SERVICES UNTIL THEY CROSS CRETIN LINES THEIR ISNT MUCH WE CAN DO. WE LIVE IN NORTH EAST OHIO AND FOUND THAT THEIR ISN'T MUCH FOR CHILDREN WITH AUTISM IN THIS AREA. MY WIFE AND I WENT TO THE AUTISM WALK IN ERIE PA AND FOUND THAT THEY HAVE ALL KINDS OF PROGRAMS OVER THEIR, SO IT HAS INSPIRED US TO ADVOCATE IN OUR AREA SO WE ARE HAVING OUR FIRST ANNUAL AUTISM WALK IN OUR TOWN NEXT APRIL. WE ARE GOING TO BRING HELP FUNDING AND AWARENESS TO ALL THESE SPECIAL CHILDREN

Timothy Allen Watts
Conneaut, OH

Our Joshua

In 2008 we were blessed to be given a beautiful baby boy. He came to our family from another family member that could not care for him. Born on Good Friday and came home with us on Easter Sunday. Our little Easter egg.the first 2 years were relatively normal, he met all his milestones. But at age 2 we noticed what words he was saying had vanished and he was secluding himself from others. We had just started carrying for another little boy from another family member through CPS and his case worker noticed Joshua's behavior. She gave us a phone number to call to have him evaluated. Two months later we were given the heart wrenching news...your son fits the description, it appears he is in the Autism spectrum. They had therapist come to our home to work with him but no words came out. We started early intervention at age 3 at Bonham elementary school, but still no words. He can spell like a grown man and uses those spellings in sentences to communicate with us. If he wants a drink, he spells drink with his block letters and brings them to us, he even spells thank you when we give him what he has asked for. He amazes us everyday and our world would not be complete without him. He is so loving and gives kisses and hugs regularly, which his teachers and therapist are amazed by since alot of children in the spectrum have issues with those types of things. Our Joshua, our Easter egg. Life would not be complete without him.

Regina Garza
Grand Prairie, TX

My Beautiful BUTTERFLY <3

I had been blessed with this beautiful little girl. A child I wished for since I was little... & being the only girl among 3 brothers. I finally had my PRINCESS. She was going to be everything I dreamed of.... however at 2 & 1/2, I was told she had AUTISM. A crushing blow.... a word I had only knewn to be associated with heart-breaking sadness. I remember hearing the doctors tell me.... "She'll be fine. She may never be a social butterfly, but she could possibly lead a "normal" life". I knew that was meant to comfort me... but it angered me. No one was going to tell me that my daughter WILL NOT be this or that. I was determined to show them... my daughter will be AMAZING.

She was non-verbal with limited eye-contact ... even less communication skills until around 4 years of age. I worked constantly with her. Every moment was a learning opportunity. It became our families mission to help her reach her goals. Words began to come, eye contact became regular, expressing her emotions were such wonderful moments .... there was daily improvement. The good days have always out weighted the difficult ones. I never forget to count my blessings.

Ashlen is now 7 years old & in the 2nd grade. She reads on a 7th grade level. She does competitive cheer, competitive dance, pageants, baseball, Girl Scouts, & has so many friends .. I can't keep count. We still work daily on making sure she always reaches her potential. Her stimming has just become a part of her life that makes her so unique.

So ....maybe they are right... she may never be that "social butterfly".... but she certainly has become an AMAZINGLY BEAUTIFUL one !!!

Melissa Wise
Vienna, WV

Interesting reading,

http://www.uvm.edu/~cdci/parasupport/reviews/giangreco37-5.pdf

Careful what you wish for an excellent piece. Please click on link above to read the well written piece and so very true.

Francien Daniels-Webb
Wantirna South, Australia

Autism Does Not Define Who I Am

This is Kaiden. From birth I knew something was different about him, I just could not put my finger on it. The first 4-5 months he was developing ahead of other infants his age. All of a sudden once he reached 5 months he started falling a little behind. He started sitting up at 7 months, army crawling at 8 months, pulling himself up into a standing position around 11-12 months old, and he did not start walking till he was just about 15 months old. Kaiden's speech was also delayed. When he was 2 years old I enrolled him in Early Intervention. When he turned 3 we enrolled him in preschool. During the first year of his preschool I was asked by 3 people if he had autism, at first I kind of brushed it off to the side. That is not what I wanted my child to be labeled as. As the preschool year progressed, we started seeing the behaviors more. Kaiden was running around in circles, flapping his hands, having melt downs, texture issues, having a hard time handling change of environment. When Kaiden had a melt down on Halloween when trying to trick or treat around the school, it was then I was ready for answers.

After talking to Kaiden's Pediatrician, we thought the best plan was to have him evaluated. The neuro doctor ended up observing Kaiden for 6-7 months before we got our diagnosis of High Functioning Autism. The neuro doctor wanted Kaiden to have some lab tests ran to see what the underlying cause was to him having Autism. Come to find out Kaiden has a deletion of the 15q chromosome, and a duplicate of the 22q chromosome.

It just amazes me that he has been through so much from finding out that he had eczema, allergies, asthma, selective IgA deficiency, autism; to now also have a deletion and duplication of 2 chromosomes. Knowing that he has all this going on with him, and he just keeps on tracking. Autism can definitely open up your eyes to things you did not see before.

Anonymous
Wingo, KY

my amazing son

I am a single mother to the most amazing son with autism. I normally dont share but ive seen a lot of stories and thought i could help ppl understand a little about autism. My son was an exceptional babt. He hithis milestones early. He was walking and talking and socializing until about two and a half. He started to regress and i was in complete denial. He was diagnosed at four and a half because a dear friend suggested it. I hated her at first but realized she did me a service. My son has been in asp(autism specific program) all through middle school. He has made the honor roll every year and is now a freshman in high school. He loves school. He is a loving and compassionate bot. These children hold no hatred or animosity. They r loving and forgiving. Sometimes i wonder if we "normal" ppl arent the ones with the disability. I am so blessed to have this child in my life! I wouldnt change a thing! These children are capable of all the things we are. He has strengthened my faith in God and my hope for humanity. He is the only child in our family with autism and has had a positive effect on all the lives hes touched. To all parents with these special children, never lose hope. There is no cure but they can have a wonderful and fufilled life. Set reasonable goals. U will be surprised what they can accomplish!

nannette archuleta
albuquerque, NM

God's gift

My Nathaniel, which in Hebrew means God's gift had a difficult birth. When we first laid eyes on him he was everything we could hope for in a baby. He reached his milestones at a later date than his older brother had, but he was still within normal limits for his age. We started to questions if something was wrong when we noticed he wouldn't play with other children and that he exhibited no empathy and obsessed about trains. When I first took him to see the psychologist, and was told he had autism, I felt my heart shatter to pieces. All the dreams and hopes I had for him vanished. I fell into a deep depression and kept asking "why me?" Luckily I was able to reach out on a website for parents with children with autism and was directed to get him help immediately. This is the best decision I ever made. Our Nathaniel went from an anti social child to one interested in friends. He learned social skills and how to converse. He will always be a true friend to those who are lucky enough to take the time to know him. I also learned a valuable lesson from my special little boy, set different expectations, not less. Judge your child by their own abilities to accomplish the impossible, not by what society deems success. I clearly remember the moment when Nathaniel expressed that he was excited to have some friends over and I felt as proud as any mother would. We realize that the road won't be smooth and we will have many more challenges to overcome, but I now know that I would rather have full hands than an empty heart.

Jennifer Distefano
Ottawa, Canada

Inspiration and Courage

In 2004, 6 weeks after my son was born, we almost lost him to a rare genetic disorder called CSID (Congenital Surcose-Isomaltose Difficency). He never liked to be held in our arms, but we did it anyway until he would stop being tense and relax. By the age of 2 he was not talking and went to his room whenever people would come over, even his brother & sister. We got him some speech therapy, but the doctors said that it was just the malnutrition from his condition that made him delayed. They were wrong and I knew it. We had to move due to me losing my job, but I went to the local Infant and Toddlers agency to get him is therapy started again and had to get another doctor as well. They put him through tests and diagnosed him with autism at the age of 3 1/2. He then got all the therapy through Easter Seals and began a transition into school. He is now reading on grade level and had all grades this year (all B's & C's) in the general population classroom. He gets very anxious at the beginning of each year, but is doing very well. His little personality is starting to shine. He is my inspiration for going back to school to become a Nurse. Our lives would be much different if Zach was not into and we are greater for it. We still don't know what is future will hold, but for now he is doing great. His future looks bright.

Honey Maloof
Quantico, MD