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I didn't let NLD slow me down

I have posted before to the blog and had an amazing response For those of you who don't know me or my story, I was diagnosed with non verbal learning disability (NLD) when I was 16 years old. At that time my parents and I finally had a sense of relief now we had an understanding. Now some people commented on my story a diagnosis proves nothing ! With a proper diagnosis we were able to learn my spectrum how I could successfully pass high school and the challenges I may face later on this diagnosis in a lot of ways saved my life. At that time I was severely depressed and self harming and in no way benefiting myself or my parents. I challenged myself to be better, instead of the constant feeling of being different or alone and that no one would understand what I was going through. My mother thought fitness fitness was an outlets to stimulate my mind manage my NLD and anxiety. After a year of her prying I finally joined and I have lived in a gym ever since it changed my life. Recently I received my master fit coach certification with the help of koko fit club where I work and train. To the parents who have children with NLD it can be frustrating and stressful and some days feels like all hope is lost. Don't give up I beg you not to. My parents never gave up on me, they pushed me to be better. They did so much research and worked with me in so many ways so I could be successful! I have two amazing parents. So many people have told me I'm a role model for them and inspiration I never thought I would hear that and it's so humbling ! For the kids and adults reading this with NLD or on the spectrum or struggling remember this, you are not different you are unique and have special gifts to share with the world. I found mine in fitness and training. You will find yous.

Tyler Hutchinson
Salem, NH

let the children teach

At age 4 my beautiful daughter was almost expelled from pre-kindergarten. That's where it all began. We fought diagnoses and medication for everything from ADHD, anxiety, bi-polar, oppositional defiant disorder and at least four more. She began to struggle so bad that she was removed from the public school system at age 6. She then ended up in a mental facility for 3 days because the medication drove her over the edge. Finally I found someone after having had 3 full neuropsychological assessments, 5 counselors and 3 psychologists in addition to the assessments, that was willing to consider autism as a possibility. Finally she was eligible for a proper autism evaluation and there was no more doubt. Sadly though she was diagnosed shortly after her 8th birthday making her ineligible for any state supported care. We have since been able to get her into some supportive programs. She is back in school. Working through a self contained program. She has become so much better socially adjusted and I have learned so much from her. We call autism her "special ability" (she thought of that) and she is doing amazingly well. We cycle sometimes but thanks to my beautiful daughter I have learned so much and her and I have become serious advocates in our community.

Jennifer
Green Bay, WI

Big Questions Begin...

I'll never forget the day Griffin came out from his bath, wrapped in his Sesame Street towel, and asked, "Mommy, do I have Aspergers?" I immediately was filled with shock and relief. My husband, Tom wasn't home and I knew this was a conversation we needed to have with him together. I scrambled for my words. Knowing he was not going to stop asking until he got an answer, I still tried to prolong a response. "Well, sweetie I think we should wait for dad," I replied. " But, Mom, I want to know what you think," he said. How could I look at him and not respond? "Honey, I really don't know. How would it make you feel if you did?" I asked. "Well, I would feel cool because my friend Roger* has it, and he's cool. But I'd also feel sad that I would always be scared of things." My heart just about broke and at the same time was filled with love and gratitude that I had a child that could so beautifully express himself.

The conversations we now have are so amazing. Tom & I have always been honest telling him that, like everyone, he has things to work on; that he has an amazing brain; and, that we will never stop trying to get him the help and understanding he deserves. But now we are able to really dive into this with him, sharing our thoughts and getting a clearer picture of his. Previously, I had struggled with what to tell him, and how to tell him. I felt like I was betraying him, lying to him. How could I tell him anything when even the doctors still had different opinions?

We explained that there is no blood test to know for sure, but that he has characteristics that look most like Aspergers and that is what his doctors, his dad, and I think too. He now proudly tells people that he's on the Autism Spectrum and has Aspergers. He's such an inspiration to me and I know he will do great things!

Missy Vaughn-Dean
Chicago, IL

Autism does not define you

Hello I'm shelby I'm 16 and high functioning autism. I also suffer from depression anxiety gentic lung Diease alpha 1. Here's my story

In school as a girl I always had teachers treat me like I couldn't do my own work they'd try todo it for me . Which really aggreavatited me. Kids in school would treat me like I didn't know what they were talking about like I was dumb .

I showed the teachers I could do my own work even started on advanced courses 4th-5th-6th grade. I made friends who really didn't treat me different. By 7th grade it was over for me. I got bullies by students and a teacher. She'd pull me aside in class cause I was "fat and stupid " or call my mom a bitch " in front of the whole class. To make a point I was diffent I didn't belong in her class. I came home with bruised ribs from her students former friends of mime. By the end of 8th grade I stopped going to school did online. I didn't want to be around anything like that again. Does autism really make me that different that everyone thinks they can walk over me. I had enough in 10th grade I'm still terrified to go into our high school over the years before. It isn't fair what happened. Just because I am different. I realized that but what can I do? Let me tell you what I did. I do my online School I can't wait to do culinary yes my autism still affects me BUT I have friends who treat me equal my family doesn't mind it ( except maybe my sensory on food I'm picky xD) but I moved on and Learned AUTISM DOES NOT DEFINE YOU , YOU DEFINE YOURSELF. Beacuse no body's perfect but who wants to be when you can be yourself !

shelby bell
Yukon, OK

Raphael

"God heals" that's the biblical meaning of his name, he is our second child. He was diagnosed with ASD when he was around 2, life was like facing a blank wall then, he is non verbal, no eye contact, delayed mental development and poor social skills. We dont know what he needs or wants unless he cries. He doesnt know pain either that,even if he is bleeding he will just brush off the blood.

Raphael has been attending special education for about eight years and he has improved a lot, he talks a lot although some we still can not understand, he can express himself now if he is hungry, needs to go to the toilet and many other skills. He also loves to sing, read books or look at the Pictures, and his hand is very fast to operate electronic gadgets especially mobile phones.

We still have a long,way to go but i believe in time he will get all the pieces together. He still earns curious and sorry glances from people when we are in public and i simply tell him to say hi everytime.

He is a sweet and smart boy, and he has every right to be treated fairly, and i dont encourage people to pity him. In our country although,people hear about autism they dont understand it well. And there is no clear support program from our governmeng. But it should not be reason for us to give up.

Rachel Deocampo
Lapu-Lapu City, Cebu, Philippines

Autism does not define me

Hello my name is Andrea and I am 23 years old. In 2012 at the age of 21 years old, I was diagnosed with having "high functioning Autism/Autistic Disorder". I set up an awareness event called "Art For Autism", an event in which I went to various highschools, and also accepted various donations of arts and crafts that were sold and show cased to the public, and all the money raised went to Autism Ontario. I have been heavily involved with Autism Ontario, especially since my case worker from CMHA first got me connected with them. My sister and relatives all suspected that something was there when I was younger, and even though my mom and dad saw something, I was never taken to get assessed. Many of the signs were there, some of which included: extreme difficulty with eye contact, difficulty reaching my mile stone of walking (did not start walking till I was 15 months old), repetitive behaviors and very extreme reactions to change, sensitive to sensory stimuli like sounds, etc. At the age of 12 I had a vocabulary/word spelling/understanding of words assessment, where it was a list of 50 words to spell. The first word was kindergarten level and the words increased in difficulty till they were university level. I did so well, that my results in the assessment said that at the age of 12, I had the vocabulary and spelling capability of a university student, and that if i had Autism, this would be considered a "savaunte". I struggle with communication and social cues, and interpreting emotional cues. However, my family and friends have been incredibly patient with me so for that I am grateful. I use art and have a blog in which I largely use to communicate, because I find it hard to verbally express myself. I describe it as my mind is a washing machine, my thoughts are the clothing, and as the machine is going full cycle, it feels like the door of it keeps being opened and closed. ASD is hard but it does not define me. Ever.

Andrea
London, ON, Canada

From Prayer to Poem

One of the many Autistic students I've worked with over the years inspired me to write this poem after he was interrupted with a question while saying a lunchtime prayer:

"Putting God On Hold"

They're just a bunch of young kids

Working hard to get by ---

Even though they are diff'rent,

They still struggle to try . . . .

Too often they're treated

As "lepers" or "pets",

But they're God's "Special Children" . . .

On that you can lay bets!

There's Sara and Sierra

And sweet, smilin' Tony ---

Orion and Anthony F

And Anthony G ---

There's Victoria and Marc

And loud, clappin' Lauren ---

There's Eddie and there's Jordan

Making sounds quite "foreign" ---

There's Andrew and Ruben To-Le-do,

The tallest pair ---

And finally, there's Garrett

Who seems always in Prayer.

What does he pray for,

This boy so serious and bold . . .

Who, when he's interrupted,

Will just put God "On Hold"? ! ?

"Wait just a minute, "

He has been heard to say,

"I'll deal with this problem

And then continue to pray . . . ."

Many of us are guilty

Of telling God to "wait" ---

Too busy with our own lives,

We tempt "The Hand of Fate"!

We could all learn a good lesson

From this "Special" group.

We think we're "cool" and "mellow",

But have we heard the "Scoop"? ! ?

God knows whose hearts are pure

And whose thoughts are innocent . . .

He knows who to smile on,

And He knows where Harm was meant.

And He sent these "Special" children

As a little test . . .

So we could learn Compassion

And work to do our best.

So, let's try not to Fail;

Let's just do as we are told . . . .

We'll strive to be better

And stop putting God "On Hold"!

Jean Hamilton
Fairfield, CA

I was diagnosed with Aspergers when I was 8; I'm 19 now. I've always kept my condition a secret; I never told my High School.

As a kid I loved animals, and kids and being able to help at school but if something bothered me I would throw a tantrum. At teacher/parent interviews when i was in grade 3, the teacher informed my mum she wanted to slap me.

I misbehaved a lot in primary school, had a lot of fights with people and even got expelled from 2 different vacation cares.

But also in primary school, in grade 5 or 6, I looked after a little boy who had autism. He was in prep. I was his "buddy" and would take him to chapel every tuesday and I remember him always wearing big ear muff things so he couldnt hear the music; he was very sweet and I started to sit with him at lunch too, the teachers would call me out of class if they needed help with him.

I moved states when I finished grade 7 and so I started high school in grade 8 at a new school where everyone already had friends; I didn't fit in. I hated my new school, I got in trouble a lot.

I wanted to drop out but I got my HSC in 2012, and now im a nanny, but ive applied to be a councillor at a special needs summer camp in america next year; I want to work with children who have autism so they know they can finish school, have great friends & relationships just like I did. I want to be a mentor and a friend and just someone to listen. Besides the tantrums and fights, i had a great childhood, and i made school fun with the help of my friends and I loved life. I am still shy and I have a lot of communication problems, I can't talk in big groups where everyone is looking at me, I struggle to make eye contact, and I have anxiety which makes me nervous to go anywhere by myself or to talk to strangers and meet new people but I am working through them every day as best as I can.

Anonymous
-, Australia

My "Weird" Son

My name is Andrea and my son Matthew (age 5), has autism spectrum disorder formally known as Aspergers. He also has ADHD.

I got pregnant with Matthew at the young age of 16. He was a healthy baby boy, small but healthy. As he started to get closer to one, I began to realize that he wasn't reaching milestones as fast as the kids at his daycare. Matthew is very repetitive. I would take him to parks and wonder why he would only go up and down the stairs. Over and over again. I also started to notice whenever Matthew got excited he would shake his hands in a way I've never seen. He would act out in weird ways towards other kids, sometimes being aggressive. And instead of a blankie, Matthew simply wanted a clothes hanger, which he would spin and spin, like a steering wheel until he went to sleep. My grandmother, who worked with the school district, got him enrolled into early headstart when he was one. The more the teacher would come to the house for his appointments, the more she was also convinced something wasn't right. That's when we decided to call in AEA. We went through all the appointments with them and a few tests but they wouldn't diagnose him because they weren't doctors. They did say that he learned like a kid with autism and showed many characteristics of kids with autism. When he went to pre-k, he was put in a special classroom. There he would see occupational therapists and the school psychologist, who would help him find ways to manage his outbursts. That same year we finally were able to see a doctor and get a diagnosis. He's been on meds since.

Its hard to explain to people who don't have a kid with autism why my kid acts the way he acts. He has been left out, and called weird but he's still so loving and friendly. He's a special boy, I've never met anyone like him, but that's what makes Matthew, Matthew. I wouldn't have it any other way.

Andrea
Sioux City, IA

We have Hope

My daughter is a twin. They were born at 38 weeks and spent no time in the nicu. Hope hit her milestones before her sister. At about 15 months she regressed. She stopped saying the words she had once said and she still wasn't walking or crawling. At her pediatrician appointment, I had brought up my concerns and she has been in early intervention ever since. About 2 months ago she was officially diagnosed with ASD. I cried and cried not knowing what to do. I had felt guilt like it was all my fault. I came to realize it wasn't. I feel there is a huge reason why we named her Hope and not her twin sister. I have so much Hope for her future. I hope that one day she can tell me that she loves me. She is such a happy, vibrant, energetic little girl.

Stephanie
Bellport, NY
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