Stories of Hope

Clarity

Dominik was born full-term and healthy.Until potty training,he hit all of his milestones on time or before.Then we started to notice that he isolated himself from others, though still wanting relationships.He had a hard time looking others in the eye and was behind socially and immature.I took him in for a screening and was told he had red flags for Asperger's.Got him evaluated and was told that because he wanted relationships he wasn't autistic but ADHD with some anxiety and other stuff going on.I chose to medicate to help with his impulsivity and his tendency to have meltdowns so severe he turned to self-destructive behavior and self-harm.The school labeled him and began to tell me that my academic concerns were caused by behavior issues and that I needed to get his medications straightened out before they would talk about it, though none of the medications typical for ADHD were successful.Others judged me as a bad mother and there were times when I thought they may be right.I did everything I could think of at home and in the school.I attended the IEP meetings,I disciplined at home,i emphasized the importance of a good education and appropriate behavior but nothing seemed to work.I thought I had no more fight left until my son brought home drawings indicating suicidal thought and I pushed for further medical attention only to be told I "latched on to diagnosis".It's just ADHD,not Autism.I changed doctors and found a team who listened to me.They evaluated him again and determined that my son has mild autism.Something finally felt right.Now my son participates in O.T,play therapy and medication treatments and has come so far in just a few months.He started Middle school and we've had our first IEP meeting.I walked away with tears in my eyes because,for once, they are listening to me.They are addressing concerns I've been yelling about for years.I'm learning to understand my son,as he learns to understand himself.It's been a long journey of tears,fears,guilt and frustration but I think we are finally on our way to my son finding success within himself.So proud!

Paula
Davenport, IA

My Son, My Heart

My son Jordan was diagnosed with autism at the age of two, and later at the age of 3 1/2 we found out that the cause of his autism is Fragile X syndrome. Fragile X is a genetic condition that causes intellectual disability, behavioral and learning challenges and various physical characteristics.It is usually passed down through generations unknowingly, until a child is born with the full mutation - Fragile X. As a mother, I went through a difficult process of coming to terms with the fact that I was a full mutation carrier and that it was my X-chromosome that was passed onto my son.
Today, we still are coping with the trials and challenges that autism and fragile x present. Jordan still has good days and bad days, but I will always be there to help him through both good and bad. Although Jordan is autistic, he is still much like other seven year old children. He loves swimming and going to the park, and even playing in the fall leaves. He loves watching children's TV shows and jumping on the trampoline. Jordan just has the extra challenges of autism. However, when he smiles, when he gives you one of his hugs, or when he laughs you know it is genuine and from his heart. There is a wonderful innocence and playfulness about him that brings light to my dreariest of days. In the words of Temple Grandin, Jordan is "different, not less."
Jordan is my son and he has my heart always!

Jennifer Dupuis
Pikeville, NC

My son Connor

My son Connor had a heart condition called Wolff Parkinsons White syndrome. He was diagnosed with that when he was 2 weeks old. His heart would race because he had an extra conductor in his heart. The cardiologist said he could out grow it. He was hospitalized for a week at 2 weeks old. During that time they had to stop his heart so they could get his heart rate down. Even at that time he didn't like to be held it was like holding him was hurting him. When he turned 6 months old he said Momma and Dadda and then just quit talking. He was really delayed on everything. At 6 months old I kept asking his doctor if he was ok and he would keep telling me he was just delayed and would catch up. At 1 1/2 years old he did get over the wolff parkinsons white syndrome and so far it hasn't come back. Still he was talking or doing things like other children his age. At 3 years old someone finally listened to me and an early on program helped me to get him in to get tested. Connor was Autistic (PDD-NOS). At 3 years old he still wasn't talking. I got him into a preschool program for special needs kids. Connor was also being aggressive especially towards me. They helped him to understand and even got him talking. He is now 7 years old and in the 1st grade. He still has trouble with some words. He does part advanced 1st grade and part special ed. He has speech, physical, and occupational therapy at his school. He still has rough days. He loves drawing, painting, play dough, taking pictures, and coloring with crayons. I think he may be a future artist.

Katie
Grand Rapids, MI

College Student with Autism

I am a 23 year old college student from Florida. I was diagnosed with PDD (Pervasive Development Disorder). That is on the Autism Spectrum. I have been living with this my entire life but wasn't properly diagnosed until my late teens. I have learned how to work with it and share my story. I have volunteered in the autism area in my old elementary school. I have formed such a huge connection with kids like me that I am going to college for my BA in Human services to be a teacher assistant for Autistic kids.

Erika Suzanne
Leesburg, FL

Nassan's Place

I am the mother of Nassan, a nine year old with Autism that lives in the urban community of Essex County, NJ. Due to the lack of affordable and quality educational and recreational programs in my community, I have embarked on a journey to open Nassan's Place, Inc, which is a non-profit corporation that will provide educational and recreational programs for children with Autism, afterschool Saturdays and non-scheduled school days. Nassan’s Place is projected to open in 2014. I also want to educate and bring awareness to the alarming high rate of Autism in the urban communities.NJ has the 2nd highest rate of Autism in the country and Essex County has the 5th highest in the state. I have partnered with local businesses such as CitiPlex 12 in Newark for a "Movie Day for Children and Families with Autism" for a discounted price once a month. It’s also a way to bring families dealing with Autism together for a social day out to network and form support from other parents or caregivers. Through Nassan's Place I hope to unite communities to better understand Autism and find acceptance of these amazing and wonderful children and adults.

Nadine Wright-Arbubakrr
EAST ORANGE, NJ

Kylan James Clements

My Grandson was diagnosed with Autism early this year (2013), at 18 months, Momma was all he said and this is also when he started waking up kicking and screaming and it wasn't something that you could control you just had to comfort him and be there for him as he went through it, and eight months later he was still waking up kicking and screaming, it was so sad to see him behave this way knowing that he needed sleep and that it had to be hard on him too not being able to communicate, I couldn't sleep for thinking about him and then all of the sudden it popped in my head that on his fathers side of the family he has 2 cousins that have autism, and that's when the wheels in this Grandmas head started turning. Kylan was 2 years old and still wasn't talking and the more i read about Autism the more I became concerned. My Daughter and I took him to a Dr. that specializes in Autism and he was diagnosed with it, it was a sad day, not only to learn that my Grandson had Autism, but my Daughter was hurt too. Since then Babies Cant Wait Program has been a big part of our lives and when my Grandson turns 3 in Nov. 2013 he will start a program for kids with Autism and that is something that I am looking forward to. My Grandson doesn't talk at all these days and he will look you in the eye only for a Second, but its enough for me. We do all we can to help him communicate with us, but the smile on his face and to hear him laugh those are the things we cherish. My Grandson means the world to me. And that is our story.

katina michelle mcmichael
WAYCROSS, GA

Keagans Story

My name is Heather,and my now 7 year old son Keagan was diagnosed with Autism at 2 years old. We noticed when he was around 18 months, he was not progressing like other children his age.He wasn't talking(only a couple of words). Solid foods were not really on his menu.Hand flapping,and toe walking were a constant issue. Non stop running circles around our vehicle in the drive way. And,he was delayed in every learning milestone.We live in a very small town in Upstate NY so traveling for hours is a must, to see a specialist for evaluations.After a 3 hour drive to a Developmental Pediatrician,and only 5 minutes into the evaluation-A diagnosis of Autism was official.He started PT,OT,SP,and SE/IT before the diagnosis,but after the diagnosis therapy became more intense.Just before he turned 3 he was put into Pre-School.There he had social interaction,therapy,and learning.He did very well and still continues to do very well.Over these past few years,we have been very fortunate.The Doctors and Program Co-ordinators have been amazing.My biggest thanks have to go to the Teachers and Therapist.Their jobs are difficult and they don't receive nearly enough recognition.And,thanks to them I have a typical 7 year old little boy.Yes,he has a few little issues,but without their help it could have been a lot worse situation.Now My Husband John and I are starting this whole process over again with our youngest son Cael,who is 3. They are like night and Day. Keagan is mild mannered and Cael is our wild one.At times things can be difficult and we have a long road ahead of us.But,I think we will be just fine.

Heather LaSalle
Plattsburgh, NY

They said he might not talk.

Fifteen years or so ago, I was with my sons,ages 4 and 5, to see an education specialist and to get them ready for school. My youngest had stopped active talking with words for quite a time, but could convey many things through gesture, intricate sounds made with his mouth and hands, and other things. While my oldest had many things scattered about in whatever fashion, my youngest would take his toys and things, and expressly had to have them in a specific order - by size, color, category...

So I took my sons to the education specialist. They were separated, and the youngest performed moving blocks, cooperated to the best of his ability. When asked to draw a stick boy, he wrote the word, "bOy". When asked to say his name, he pointed to his chest. When asked to identify [arm, eye, hand] he pointed correctly. He did not hold eye contact. When asked to copy a pattern in a book on pattern blocks, he not only copied it, but also reversed the black and white pattern, then returned it. And so on. After a time, he said his brothers name, and became agitated. But he would not talk. He would not meet eyes. He would not tolerate direct contact.

When the assessment was made, it was told to me that he "might not talk, ever", that he "at the very least, has some form of pervasive delayed development", but was "extraordinarily bright, all things considered", but "may be autistic - may be even moderately autistic".

It was at this point that he spontaneously grabbed a crayon and slip of paper, wrote "bOy sMArt", threw the crayon under a desk, flipped the paper at the specialist, then scuttered under a chair to hide, dragging his fingers in his hair cross-wise to listen to the sounds of his hair against his head.

I am here to say he did manage to mainstream, with assists, is 19 and in college.He has high-functioning, moderate autism - but we navigate life together, and we seem to be okay.

Anonymous
Hudson, FL

christians story

Christian was my first child so for a while autism was all i knew. he was diagnosed at the age of 2 and he started pre k and multiple therapies at the age of 3. now hes 4 and hes starting to talk and be potty trained. christian is a pure joy and he brings joy to all who sees his smile. hes a great big brother and hes my best friend. hes taught me patience and sensitivity. i love him so much and i wouldnt trade him for anything.

marcy page
san antonio, TX

Lyric Matthew

This is our handsome Lyric Matthew. He started showing signs of autism when he was 18 months old. He rocked all the time and hummed or screamed while he rocked, if he wanted to be left alone and other children didn't understand he would get very violent, a lot of the times he would bite or hit the kids with toys if they weren't separated quick enough. Finally after 2 doctors telling me "he's to social" "why? He makes perfect eye contact" a 3Rd doctor agreed there was something there. He was 3 years old when he was finally diagnosed on the autism spectrum. It's mild but still a struggle no less. Lyric has a very hard time realizing danger, it is nothing for him to run into a street if there's a car coming or not. but he is also a very bright 4 1/2 year old. I see him do things that I have never seen another 4 year old do or know things I didn't know children his age would know! He has his bad days and meltdowns but is a very HAPPY/HEALTHY child! I don't know if it's the same for other autism parents but to me autism is our normal!

Amanda
CORYDON, AL