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Posts Tagged ‘PDD-NOS’

In Their Own Words – The Only Thing I Worry About

July 8, 2010 19 comments

This “In Their Own Words” essay was submitted by Loary Bartlett of Owensboro, Ky.

My son Zakk was just diagnosed this May with PDD-NOS, high functioning autism, but the story does not stop there. It began in December 2005, when my mom and I recognized that my son was beginning to lose his balance and his eyes were dancing in his head. Immediately, my husband and I took him to the local pediatrician’s office, who referred us to the children’s hospital in Louisville, Kentucky, where they treat this kind of stuff. We had no idea what we were going to endure for the next four years of our lives.

It turned out that Zakk had cancer, neuroblastoma, in his pelvic area and a condition called OMS (opsoclonus myoclonus). OMS is a rare neurological disease which includes symptoms like dancing eyes, jerking muscles, loss of balance, loss of gross motor skills and loss of speech. To this day, my son has not regained speech. We have been told by the doctor that if he does not retrieve it by the time he is seven, he will never talk. May of this year, he was finally diagnosed with high functioning autism.

You’re probably wondering, how in the heck has my family survived? Sometimes I wonder that myself, but with help from family and friends and a open mind about what is happening in our lives, we are able to keep our heads above water, barely. The one thing I keep telling myself is, DO NOT QUIT fighting for Zakk; he is a wonderful boy and when you meet him, you can see that in his smile. As long as Zakk is smiling and laughing, I am happy, and that is the only thing that I worry about.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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In Their Own Words – What Our Hearts Knew From the Beginning

July 3, 2010 16 comments

This “In Their Own Words” essay was written by Jessica Fournerat, who has a five-year-old son with PDD-NOS.

This is hard for me to admit, but as I meet more and more parents in similar shoes, I feel more comfortable opening up about my feelings about having a child on the spectrum.

All my life I have been a helper and have felt a calling to reach out to others, a calling that I never seemed to find the right way to fulfill. All the while I swore I would never have children.

Flash forward several years and I was pregnant in a new city with a new husband. I found myself in a quiet moment talking to my God.

“Ok, so God here’s the deal. I know I’m an older mom and that my baby may have challenges. That’s okay, I can love any child, but I am not sure I am up for the challenge of a child with autism. I don’t know how to relate to someone who is shut off from the world.”

You see, like many people who had no experience with autism, I was under one huge misconception. Those children with autism were emotionally cold and could not feel love for or from their parents.

Well, God answered my prayer and gave me the most amazing child I could have asked for. Jaxson was a smart, funny, stubborn, super active child with an amazing sense of empathy. Soon after learning to walk he blessed us with what we called “Run and Hugs.” He would run from the other side of the room, crash into us and hug us so tight.  Sometimes he would come up behind me and just squeeze as tight as possible and smile. He would cry when he saw sad children on TV shows far before children are supposed to develop empathy. As I learned more about autism, I learned that some of this was sensory seeking, as well as auditory processing issues. But I don’t care what label you put on it. This boy could LOVE.

Jaxson could not communicate verbally until he was three and a half. But he could get his point across. He once used a combination of sign language, gestures and PECS to communicate quite clearly that he wanted our cat Harley to eat a banana. There was no doubt that was what he wanted and when I held the banana up to Harley’s mouth he exploded in laughter and gave me the biggest hug. It was like he felt so wonderful that I understood him.

Not long after, we obtained an augmentative communication device for Jaxson and he took right to it. He was speaking on it the same day that we went to try it out.  This device opened the door for him and in the blink of an eye he was using his words verbally.  He started with Numbers and moved to the alphabet and soon it was words. What was great was that with the sentence structure of the Dynavox when he started talking it was sometimes in full sentences – “I want more juice, please.”

But the most amazing moment, I think, was walking in on him practicing the word “Mama.” He was saying it in a guttural tone and it seemed like it was important that he get it right first. Within days of that moment, he began to say “Mama” regularly and my heart just exploded.

All the experts we have dealt with have been amazed by Jaxson’s success.  They did not see what I saw from the very beginning – a young fireball with his hands reaching out to grab his future and direct it where he wanted to go. I always knew that even when he could not speak our words, he most certainly could understand them. I am so happy that the world can now start to see what our hearts knew from the beginning, that these children are so much more than any label and that they have countless gifts to give the world.

Jaxson has brightened my world. While the challenges do often arise, I find that it is his spirit, love and perseverance that keep us moving forward. I have found my way to reach out. I need only reach out within my own home to find my chance to help and be helped by a child so extraordinary.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Autism Remission?

June 28, 2010 23 comments

This “In Their Own Words” essay was submitted by Orfa De armas of Seattle, Wash. who has a son with autism. Orfa’s writing can be read in English and in Spanish on her blogs.

I breathe autism.
I eat autism.
I drink autism.
I live to fight it and to win the battle.

So why am I so speechless? I should be celebrating today’s news and jumping up and down with joy. Why do I feel so confused when we’ve kicked autism in the butt so early in the game?

Today, May 19, 2010, marks the end for us of two long years of early intervention under the guidance of the University of Washington Autism Center. We moved across the country in 2007 so we could get on a waiting list to obtain an early diagnosis for our son, Frankie, and to learn the next step for this lifelong journey. Today, we got more than what we had been hoping for; besides a tentative label for his forehead reading: PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) we also got the news that he was no longer considered autistic, per se. In order to explain this better, we were told that if our kid had cancer, he would now be in remission – so, we needed to watch it, keep it in check, be aware there could be a regression if a big crisis would arise, if stressful situations involving big changes or social challenges ever took place. But for now, it’s all good … it’s all too good.

So, if this analogy is right, does that make Frankie an autism survivor?

Personally, this information creates a big paradigm shift for me. I have spent the past 30 months learning to accept the reality of Frankie’s autism and brainwashing myself to deal with it for life. Ever since we contemplated the possibility that our youngest son had autism, I was scared of the unknown. I made it a point to know. I promised myself that if I knew enough, or in my case, more than enough, I wouldn’t be scared to take on the fight. I’ve always believed that ignorance holds you back and that knowledge is power – so that’s what I did: I learned. Autism became my thing – I learned to listen, I learned to process, I learned to research and I became a pro at it. Name the website of the month, I knew it. Name the event of the week, I knew it. I was informed and on top of it. I gave the early intervention of my child the highest priority in this family. Our lives revolved around the parent training sessions, the intervention schedules, the evaluations – everybody was on board and there was no other way. No long vacations were allowed; we had sessions in the middle of snowstorms, hail and rain – not a minute went to waste. The efforts paid off but the reward was more than we bargained for.

Then, why on Earth am I so shocked at what I heard today?
Perhaps I’m shocked because I never really expected to win the battle?
Perhaps because now I’m left without a purpose, without a mission?
Maybe because at one point this became more about me than about Frankie?
Is it because I feel that we belong in the autism community and we will have no identity left once we are out?

I’m not sure of the reasons of why I feel so surprised at what the future holds for Frankie. The truth is that I just wished for him to survive and now I’m told that he can thrive and this is hard to process. I am, once again, scared, but this time I’m scared to take on this new reality and truly enjoy it because it seems so unreal. Could it be really happening? How did it happen? What did we do differently? Why can’t this be the outcome of every family living with autism? What is that magic ingredient we found without knowing?

So many questions are dancing in my head and are making me dizzy but one thing remains very clear to me; the sky is the limit when you reach for it and there is always a light at the end of the tunnel. Our tunnel was shorter than other families’ tunnels but it was indeed a tunnel and it was very dark. But the light at the end is so bright, I might need to wear my shades all day long!

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Through My Eyes

June 24, 2010 103 comments

We recently received the following e-mail and poem submission:
Hello. My name is Cassie Madison. I am 15 years old and I have PDD-NOS. As a child, it was very difficult for me to interact socially with other children. I wrote a poem about a day in kindergarten, as seen below. I decided to read it for my high school’s Poetry Day a few days ago. When I read it, I had no idea what would happen. Many students were actually crying because of what I wrote. Teachers and students alike have been coming up to me for the past week telling me how my poem touched them. I thought I would share it with you, because I want the world to know what it was like to be a child with autism. Though we may be different, we are still living, breathing humans. Though we may have difficulty expressing them, we still feel the same emotions as everyone else.

Through my eyes,
behind the long bangs,
I see the children playing.
I want to play with them.
But they don’t want me to.
A boy chases a girl around the room,
shrieking with laughter.
Girls play house in the corner next to the blocks.
To my right the children sit
with rag dolls on their laps,
styling their yarn hair
and dressing their flopping bodies.
Me?
I stand awkwardly in the back of the room,
watching everyone play happily
with a sense of envy, thinking,
I will never be normal like them.
I am the child nobody wants to play with,
the silent girl who can’t look anyone in the eye.
I am outcast.
Through my eyes I see the world,
but can the world truly see me?
Am I no more than a blip in the scenery,
another smudge of grey
on the paint-covered canvas of life?
I am more than what meets the eye.
I am more than the awkward child sitting silently by herself.
I can write stories about magical characters
that leap off the pages when read.
I can do math at a level higher than anyone in the class.
I can read chapter books,
I can sing songs;
I can be a person, too.
But what does this matter
in the eyes of a kindergartner?
To them, I am Different.
But through my eyes, they’re all just the same.

This “In Their Own Words” poem was written by Cassie Madison, a 15 year old who has PDD-NOS.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – A Very Special Snowman

February 21, 2010 2 comments
This is a very special Autism Speaks snowman that we made this past week.  Aiden, my five-year-old son who has PDD-NOS, could never stand touching snow or having it on his face – and he tolerated both today. Better than that, Aiden narrated every part of the snowman – ”need eyes,” “smiling snowman, please”. We added the Autism Speaks pin to show that this success is one piece of his journey.

This “In Their Own Words” essay is written by Cristin Millen (Greater Hartford Walk Now for Autism Speaks Family Teams Co-Chair)

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site. 

 

  

A Single Diagnostic Category for Autism?

February 10, 2010 6 comments

Today the American Psychiatric Association announced plans to change autism diagnostic categories in the newest version of the Diagnostic and Statistical Manual (DSM).  Notably, it has been proposed that the diagnoses of Asperger syndrome and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) be removed from the manual.  A broad category of Autism Spectrum Disorder has been proposed instead.

These proposed changes are certain to be met with a wide range of reactions, and such reactions will depend on one’s perspective.  From the scientific perspective, research conducted over the past decade has shown that there is no strong scientific rationale for distinguishing among autism, Asperger syndrome, and PDD-NOS.  For example, research has shown that these subtypes are not linked to specific etiologies (causes) or specific treatment recommendations.  Studies have shown that autism and Asperger syndrome can show up in the same familes and that specific autism risk genes don’t aggregate neatly within diagnostic categories. Treatment recommendations for Asperger syndrome versus high-functioning autism or for autism versus PDD-NOS are not different.  So, from a scientific point of view, the changes in the DSM make sense.  The new classification system recognizes that autism is a spectrum disorder that varies quantitatively in symptom severity and expression.  The changes will allow us to look at the the landscape of autism broadly and focus on clusters of symptoms and seek etiological commonalities in disrupted signaling pathways that promise to tell us more than we have learned from considering each diagnostic category separately.

People in the community living with autism spectrum disorders may have a very different viewpoint, however.  For some individuals who have been diagnosed with Asperger syndrome or other subtypes of the ASD spectrum, the change in the DSM will be very disruptive and distressing. Many individuals personally identify with the diagnostic label they have been given and grown up with.  They may participate in support or advocacy groups that identify with a specific label, for example “Aspies”.  Thus, although the scientific and professional communities may institute a change in the diagnostic criteria, many may choose to use the original labels despite the changes in the DSM.  And there is nothing wrong with this.  In fact, there is precedent for this.  For example, “sensory integration disorder” and “nonverbal learning disability” are examples of labels that have been used by the clinical community, but are not specifically part of the DSM.

One potential positive impact of the proposed changes to the DSM is that they may help increase access to services to those individuals with Asperger syndrome and PDD-NOS who previously were denied access to autism-related services. From the perspective of a parent who is struggling with their young or adult child’s symptoms, it hardly matters what name is given to the collection of their symptoms. Increased access to services can help ease the burden of symptoms for those struggling to manage them.

We need to be respectful and compassionate about what a diagnostic change might mean for individuals with ASD and their families.  We invite you use this space to share your thoughts about this change and what it means to your family.  We will be listening and look forward to hearing your perspective.

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