Stories of Hope

My Autistic Princess Aurora

March 19, 2010 my beautifully unique daughter Aurora was born. But I had no clue how unique she would really grow up to be. Just like any baby, she said mama and other small words, she gave eye contact and walked early. Everything appeared to be great.

Around 20mnths I started noticing she wasn't as developed as her cousins were at her age. She slowly stopped speaking all together and gave barely any eye contact. It was like she was in her own world. By 2 yrs she babbled like a baby, began flapping her arms, and barely interacted with anyone…especially other children.

With no change in her behavior doctors suggested she could have Autism. As a single mom this worried me, I feared for her future…our future, how we could do it alone. In June 2012 my worries became reality, Aurora was diagnosed Autistic. I cried, first of misbelief and then tears of relief. As much as it pained me to know my daughter would have to live with this disorder, it felt good to know what it was so we could move forward.

Aurora will be 4 this March and for the past 2 years with the countless doctors, therapists, and medical tests she has come a long way. She calls me "Mama" again, she plays with almost every child she meets, and she takes direction better. She no longer has a problem with eye contact, or flapping her arms and she will respond to the sound of her name. She gives hugs and kisses, says hi and bye, and can even count to ten. This January she begins at her new Preschool for Autism Children where we should see amazing progress.

Aurora is my very own adventure in life, no day is ever the same. I would not change her for the world, and I know now I'm not in this alone. With her doctors and teachers, my family, my boyfriend, and close friends…Aurora can make it through this, we both can. Autism has touched all our lives forever, but I know my baby girl will succeed.

Alyssa Strain
Windsor, Canada

a case for a genetic link

There are 8 children in my extended family that are on the spectrum,either aspergers syndrome or pdd/nos.two of these children are my own grandsons--the older(12)aspergers,the younger(8)pdd/nos. five of the other children are my kids' cousins,but one is my ex-husband's cousin's son(the other pdd/nos).all of the kids are connected to each other by blood through my mother-in-law.my daughter(31)has just undergone her own ados testing for aspergers.if she has it,she will be the ninth child in two generations of my mother-in-law's family line to be diagnosed with autism.

linda
east hampton, CT

My Luke

I had multiple US's bc Luke had delayed kidney development. I was given pitocin to speed up my labor, Luke had antibiotics amox/aug right at his 18 month shots (DOB 9/15/2001) 12/2003 my son could no longer say duck, dog, pig....he could only grunt. His eye contact slowly worsened. He eventually was a flapper who held his ears with every noise. Yes he lined up things, liked objects that spunned hence why we have a windmill in our yard. We had to demand a speech eval. & it was that lady who spent 30 minutes with my son - knew what he had. PDD. She was right & directed us in the right direction. He has come along way with early intervention. Our orthodontist says his mouth is 4 years delayed & testing falls 3-4 years behind in age. He even plays and acts 3-4 years younger. I find it interesting bc his kidneys were delayed in developing in utero. We just take a little longer to reach our age. We still have problems and some milestones never met. I stress about him everyday. Fixations, meltdowns, urgency/emergencies for everything, no patience, comprehension & misunderstanding are only some struggles. What breaks my heart is people wanting him to change for them when I know and have stressed autism is about adapting to them. So many people are missing out on life with him because they see him differently. Even his brother struggles to want to understand. We don't qualify for for anything, but an IEP. So in school he struggles to keep up and be a part, as he wants to be a part of everyone's life, yet they don't see what I see. I child who needs trust, love & acceptance. College may not be reachable for him, but he is determined to be a part of the NFL commentators or even a coach. For he loves football.

Paula McCarren
Falling Waters, WV

Our Beautiful Hero's being Judged

We're blessed with two beautiful boys that have shown how strong they are and how strong they make our family! But to others they are a challenge because they have a disability! My step-son is Damian 12yo and was diagnosed with Aspergers at the age of 8 & my son Christian is 3yo and was diagnosed autistic at fifteen months. They're the sweetest and kindness children and other ppl say they're too hard to handle because they're autistic. We're a blended family of seven and love and adore each other so much but now the courts are making us have a home evaluation because"having a son with special needs must take away from my two sons from my previous marriage." It's bad enough that they're judged on a daily from ppl due to their ignorance but to have a judge making this assumption is just sickening and heartbreaking to say the least! What gives them the right to try and tear them all apart and change all their lives because they do not understand children on the spectrum! This is all my two children from my previous marriage know, this life they have is the norm to them and their baby brother, sister and older brother are everything to them! What makes my autistic son so hard for me to give my other two children attention? Nothing does, they're all my world and a judge in Media, Pa has ordered this absurd request to have this evaluation done. So if my son has a meltdown that means I must not be able to care for my other kids! Both the judge and evaluator have both said "he must be stressful." Well no he's not and he has other siblings he loves and why punish him for their ignorance!

Jerry Lee
Norwood, PA

War is over

It amazes me the changes, our innocent child, has gone from being on death's doorstep to one of the best you could ever ask for. Allen will be 18 on Saturday. We have been waiting for this moment for the past 18 years.
Allen was rushed to the hospital at 10 days old and put in a coma for 2 days because it was Christmas Eve and the usual Hospital staff was on Christmas Break. His left lung blown up so full it collapses his right lung, pushing his heart and trachea to the opposite side of his chest.
There was no Christmas that year. Just days and days of no sleep. The day after Christmas Allen received surgery to his lower left lung, removing it. The valve was stiff and taking in air but, was unable to release it, blowing it up like a balloon, causing damage.
It took him 5 days to open his eyes and 2 weeks before coming home. The breathing tube had irritated his throat. When he came home we had to turn the baby monitor up full blast to be able to hear his different breathing sounds just to know his was crying. He was burped on his butt due to the incision on his back that went from his left side all the way around to the middle of his back. He had nebulizer treatments and fluid in his lungs. The oxygen deprivation he suffered affected him in more ways than anyone would of know… intellectually. Allen had more than a stiff valve in his lung. Along with intellectual deficits, he has autism as well. Year after year we did the home therapies, school services, agencies, and anything we could do to improve on his head banging, drooling, sensory problems, fine motor problems, and of his global developmental delays.
After 18 years I have finally been able to step back and say, we did it. He is the result of hard work and we thank him from the bottom of our heart for being the best kid, anyone could ever known. Happy Birthday!

Diana Barkley~Grandmother
North Lawrence, NY

Sven is Reading!

Less than a year ago twelve year old Sven was unable to read. Sven is autistic. He could not read his name or simple words such as: "it," "see," or "me." His teachers stated it was unlikely Sven would ever be able to read. His grandmother, Catherine, read an article about the innovative, and at the time, untested Nardagani Reading Program in a local paper. She contacted us saying "it would be a miracle" if we could teach Sven to read.

Most challenged readers can learn to read in 4 lessons. Due to his unique learning challenges, it has taken Sven longer, but he is now reading 4th grade level books! He now reads independently for pleasure and is always looking for reading opportunities on cereal boxes, road signs and magazines. He is very proud of his new skill and is now the best reader in his class.

Leslie Andrews
Ketchum, ID

Dylan

Dylan is our youngest and only boy. He has 2 older sisters 13 and 8 . My husband and I started noticing early on he was not developing and hitting milestones like our other children and we were always told by family members it was because boys are slower than girls. By 2 years old he only babbled like a baby he had no actual words and had just barely learned to walk.
Doctors ensured us he was fine and just taking his time. By the time he was 3 he was still not talking, having major melt downs we were at a loss of what to do.
We finally got a referral to have him evaluated for autism ( it was a battle for over a year with the doctors to get it) in may of 2013 our son was diagnosed with autistic disorder/ADHD and severe developmental delays.
I cryed, first of misbelief and then tears of releaf. Dylan started school and therpies in september and hes an entirly different child. Hes learning ways to communicate with us and his meltdowns have become less and less.
I never thought I would have a son as special as dylan, whom turned 5 in october.
He now gives hugs and kisses, loves going to school everyday. Dylan is our adventure in life, no day is ever the same. I would not change him for the world. Autism has touched our lives forever. Baby steps, i know my son will succeed.

Rachael Thompson-Bumpus
Modesto, CA

My Son, the musician.

It was first grade when my son was finally diagnosed with Aspergers. At that time, the Dr. seemed to be the only one who knew what it was. It took a while for his school to understand the problem. Once they did, My son was provided a full time aid. She helped him get threw school and made a huge difference. He was always pretty well liked by the other kids, but he didn't really have "friends" because he was not good at typical conversation. However he took a serious interest in music. This didn't surprise me, because he started singing before he started talking. By the 2nd grade he was in the orchestra playing violin. Then later Bass. Meanwhile, at home, he learned guitar. He started writing his own songs by 6th grade, and playing live shows by 8th grade. When on stage, my son is a totally different person. Very confident and comfortable. He is more nervous OFF stage than on. I was so proud when he graduated high school. At graduation, he sang the National Anthem. He is 20 years old now and attending college. He is in a band, playing clubs all over our city and has a solo album out that consists of songs written by him, and all of the instruments were played by him in the studio ( except drums ). A child with Aspergers may lack in some skills, but they can more than make up for that in other skills. His CD pictured above.

jeff
Toledo, OH

Time In for D

I was teaching a special education class for middle school students. D, a 6th grader with PDD, normally came and went with his mother, but today he was to ride the bus home. As the day wore on, he became more and more agitated. Finally, sensing we were reaching some critical point, I asked him if he wanted some time out, in a special area separated by a book case to give him privacy.

"No, no!" he insisted. "I'll be OK!" It was obvious that he associated Time Out with punishment.

"D, you are not in trouble; you haven't done anything wrong. But you seem to be a bit up-set, and I thought you might like a little quiet time to help you calm down."

He looked at me for a long moment, and then took a deep breath and said, "No, I'm OK, but thank you."

Somehow just knowing that I knew what was bothering him seemed to help him face his fear of the kids and noise he would find on the bus. That bus ride was the first of many he negotiated well, but I never forgot how scary new situations can seem to all kids, but especially those with relationship problems.

Anonymous
Houston, TX

Forever, Christian

Nothing is as frustrating as knowing there is something wrong with your baby and having nobody believing you. Christian Peter Traverse is my first born and the light of my life. He was born in 2001 and was for the most part, a bubbly, happy baby. Happy until out of the blue, the shrills of his screams would penetrate the quiet, shattering the illusion of normalcy. As Christian grew older, more disturbing symptoms began to appear. Certain sounds, textures or even a mere touch would cause him to painfully scream and hit himself repeatedly. No matter who we consult about this disturbing behaviour, we were assured that it was nothing, it was just a stage that Christian was going through and he will get over it. He never got over it. The older Christian got, the more aggressive his behaviour would become. A haircut was a traumatic event. Making friends was difficult. Not because he shied away from kids, but because he would invade their space by doing things like hugging them without permission, or follow them around everywhere, made the kids uncomfortable. Help finally came when a teacher noticed this behaviour and suspected Christian had a condition known as autism. With our permission, she set forth the events that eventually led to his diagnosis of high functioning autism. He was nine years old. With the proper support, Christian is doing well now and is a thriving, happy 12 year old boy that is looking forward to his birthday in a couple of months where he will be a "cool teenager". I have so many people that I am grateful for that helped shed a light onto our darkness. The picture you see is with one of the many people we call Christian's Angels. It is his sixth grade teacher who has become like a second mother to him.

Tina Traverse
CONCEPTION BAY SOUTH, Canada