Story Idea-Aspergers/awareness

This person wants more coverage of awareness of the spectrum. This item was emailed to this blog--AR


The main problem I have had to face with my 5 year old son who has Aspergers Syndrome is the fact that most people seem to think all kids on the spectrum are exactly the same.

I hear all the time that well he talks some, he does not sit and rock....etc.. People need to know that there are different levels to each spectrum disorder, no 2 kids will be the same!

I also have had a hard time getting him OT and PT services because he is not "severe enough". The fact that he cannot pedal a bike so he can ride his bike with the neighborhood kids does not seem to matter, a 20 to 24 month developemental delay is not enough for services.

He has been in speech therepy since 2 1/2 years old and he is almost 5 1/2 - he still is not understandable to a unfamiliar listener, only a careful familiar listener can make out what he is saying and that is only 75% of the time.

His school sees no issues - they dont want to have to put out the money for services for him - thats what it is all about!

Thank for listening - MM, Kansas

I think the public needs to know this about autism

This person has a list of what they think we should cover. This item was emailed to this blog--AR

I think the public needs to know this about autism

1. treatment is NOT covered by medical insurance,( ABA) the educational system is required to provide that service toyou , but sadly they prefer to do the least amount they can get away with and the innoccent children are the victoms here.

2. the people claiming to be quailified to provide aba, most are NOT

3. Do not trust your local school district, they do not even think you should have a say in your own childs welfarebecause they are paying and not you.

4. If you know someone with a child diagnosed with Autism, They need your help and support more than you can imagine. Just because the child is quiet, is very goodlooking, or seems fine, dont let that fool you into thinking its not that bad, babysit the child for a long period of time at least overnight and you will get a better understanding of the situation.

5. There is a special place in heaven for ALL MOMS of CHILDREN WITH AUTISM !

Story Idea-Spectrum

This parent wants more coverage on awareness, diet, and echolilia. This item was emailed to this blog--AR

Something that should be covered, if it hasn't already, is to cover the ranges of children with Autism Spectrum Disorder. I mean by that is some of the kids behavioral issues when at home or outside. Not every child acts the same. Yes, they do share some issues; however, there are some children who acts out in different ways.

To show the public that not every autism child acts like this or that. And when a child is having a meltdown, study what other people see or think. So that the public can understand what a parent is going through during that time. So people can understand that we are not dealing with our child's emotions but everyone else's who is reacting to it in some way or form.

Also cover Echolilia in Autism children. I don't know if you ever heard of it but it effects at least 85% of children who have autism. And there are two different kinds of echolilia, you would be surprise how many parent's children have it and they don't know to much about it or have families like mine who does not understand what it is and why it is done. Some think that you can just make it stop but what they don't understand that children do it because they need to and if you try to stop it, they can pick up something else that can be even worse to replace what they are doing. And it is still echolilia in some form. Please cover that too, alot of parents on cafe moms (the newbe's) may not know to much about it.... I find it a good information for everyone.

thanks,
gina

I am sorry but I forgot to mention to add eatting issues. My son is 8 and does not eat stuff and he is growing but he is also losing weight to. Alot of families struggle with it so much and there are alot of people (like me) who can not afford to pay the experts to help me to get him to eat. There are parents who have no choice but to put their child on feeding tubes.

I feel that if we make the public know about that, maybe the state can start to look at helping families that are going through this with some kind of government help. I know I want my son to eat and gain weight but we are not so lucky to afford to pay or may not have the insurance coverage to get it done.

Also you should put out there how many families who have children who are disable, how hard it is for them to get coverage. Medical coverage is so hard to get now, but when your child is sick, they don't except these children who need it the most. I feel that if this is brought out, it would show the president how important the state should cover our children. Because if they don't then there will be so many children in the state that are not covered when they need it the most. I feel that the insurance companies should except these children because they need it so much and they know it too!!!! I hope you can take that and run with it too.

thank you,
gina

Story Idea-Our story

This person wants to share their story...This item was emailed to this blog--AR

Thousands of children are not getting the help they deserve because their parents are misinformed or uneducated. My 5-year old son Elias is high functioning Autistic, but you would not know it when first meeting him. Most people think of Rain Man when they think Autism. Elias appears to make eye contact, is very social with adults and is extremely verbal and polite.

We were turned away from services because miseducated doctors told us he couldn't be Autistic because he, "makes eye contact and gestures." These were doctors! With the growing epidemic (1 in 150 children) it is imperative that we show other parents that their "weird" child may be on the spectrum. People always told us that Elias was "just sensitive." I started feeling like maybe I was the person who had something wrong with them. I felt like no one else saw the things my husband and I did. I have never felt so helpless in my life.

We pushed to find out what was wrong with him. It took two years to get help. One doctor told us, if we hadn't pushed he would have surely slipped through the cracks and he would not be getting the therapy he so desperately needs to have a good shot of a independent life. How many other children are slipping through the cracks? Many parents don't know what to do. They are not sure what is wrong with their child. Education is key!

Story Idea-Spectrum Awareness

This person wants more coverage on the Spectrum. This item was emailed to this blog.---AR

Hello! I am not exactly sure if this is what you want, but I will still try. The most important thing that I believe you should cover is the Spectrum itself. It is so massive and so varied. People always assume if there is a child with Autism that the child will always act like "Rainman".

My son just turned six. He was diagnosed with Asperger's Syndrome. He is not "Rainman". No child on the Spectrum is the same. You can not say that your child does not have Autism because they don't spin wheels on cars or they look at you or they are affectionate. My son is extremely affectionate, although not appropriately (giving strangers hugs, etc.). However, my son can appear very, what we in the community call, "Neurotypical". It is just as author Patricia Romanowski Bashe stated, "…Are they indistinguishable from typical peers? It depends on who's looking and what they're looking for." This is very unfortunate considering some people just assume that these children are rude, defiant or that they have horrible parents.

The general population needs to deviate from this atrocious black and white depiction of Autism that is seared into their brains. These children need help. The parents need to be responsible and advocate for their children and everyone else should hop off the ignorance wagon and give the parents and most importantly the children, a break!

Thank you so much for your time!

Kellye

Story Idea-Awareness

This parent wants more coverage of awareness. This item was emailed to this blog--AR


hello, my name is Georgina and I live in Ca. I know you are doing a story in our own area but if you could please somehow pass it over to other stations around the US.

I say that because there are so many families who children have this and struggle so much. And if we educate our media, maybe some awareness can come out of it.

I suggest to cover if you have not already been told about how many times most families have to go to see doctors before they get the right diagnose. That there are still doctors out there like my peds doctor which had told me that my son was ADHD and then just gave me drugs for it.

And just like any other parent, I tried it but it did not work. He got worse, so bad that he attack me. And he was never like that. So we stop the drugs and we had to go ourselves to see what we needed to do.

It wasn't until my teacher who was at one point a child psychologist that advise me to see a nuro doctor then go and see a child phy to get an psychological evaluation. And that did not come from my son's own doctor. We went through hoops before we found out what was wrong with him. And cover please please not just the children that can not function so well with autism but the high functioning one. You don't know what it is like for a parent (like me) who child is like that and how other people treat him when he is having a melt down.

I tell you if you ask parents like us, you would be amazed on how many people look at them and say there is nothing wrong with them. And the school system... yea, they treat them like nothing is wrong with them either because they don't look like the rest of the other kids who have it and are in bad cases. When I try to give my son's teacher papers on or about his condition, she did not take it. She said that she had a child who had a different type. And what people don't understand that yes there are different types but they are different in other areas.

So now we can only hope that his school will either give him what he needs or we may have to get him changed. There are many parents who are battling with their schools about this... you would be amazed or unless you know of many parents already that is going through that. thank you for hearing my input. I do hope I have helped a little!

Georgina.

Story Idea-Autism Is Crying Out!

This person thinks we should cover autism awareness. This item was emailed to this blog---AR

Ashley, please do a segment on the "Autism Awareness" gap that exists between the average person on the street, the people that watch the news on KOMU TV8, the typical college student, our any other group of people or individuals, and the people or individuals that know or have been touched by someone with "Autism".

Some questions might be:

What do you know about "Autism"?

What would you like to know about "Autism?"

Are you or will you watch a TV News Series on "Autism"? Why? Or Why not?

Do you know what a spectrum disorder is?

Do you know how many individuals have "Autism"?

Who is affected more by "Autism" males or females?

How do you get "Autism"?

How do you cure "Autism"?

How long does "Autism" last"?

I think you get the idea. I think the results would "raise a lot of eyebrows".

I hope you can find some way included some "Autism 101 basics" on all your segments and can find a way reach and educate people and individuals that have not been touched by someone with "Autism". We need "Autism Awareness" to be in all our minds and in our hearts always. We need everyone to understand that we are all an important piece of the "Autism Puzzle" and we need to all work together in trying to find and assemble all the pieces of the "Autism Puzzle". We need everyone outside the "Autism Community" to become involved and be as passionate about solving the "Autism Puzzle" as we are. We need everyone inside the "Autism Community" to work together and to put all their pieces of the puzzle on the table. Then maybe we will have a chance to see what the finished "Autism Puzzle" looks like.

Your Special Friend, (living with "Autism" for over 32 years)

Scott and his dad Steve

P.S. Ashley thanks for being a "Friend" and "Don't Ever Give Up!"

Story ideas-signs, positive, awareness

I am a mother of 3 boys who each have autism, 6-yr-old twins and a 2 1/2-yr-old. In addition to the fact that everyone with autism is a unique individual, a few things I think have not been addressed by the media, or could be addressed more are:

1 - pretty much all the cases I see in the media involve regression; it would be nice to see some coverage of children who were born with autism. More and more studies are being done on signs to look for in infancy and early childhood, those should be better publicized so people know what to look for from an early age.

2 - although there are obviously challenges that go with raising children with autism, there are positives too. Our children are blessings and they don't have to be savants to have some amazing qualities. It would be great to see coverage that focuses on their talents and positive attributes. For example, I know from my own kids but have heard this from others also, they don't judge people and are accepting of everyone (ironic since not everyone is so accepting of them).

3 - I'll echo the thoughts of others that one thing we would definitely like to see is for the public to be more educated on what behaviors they might encounter and not to judge the child or parents but be understanding and considerate instead. I've learned to tune out the responses of others when my children are having a meltdown in public (thankfully much less often now than used to be the case) but it certainly doesn't help the situation when people stare, give dirty looks, make rude comments, laugh at us, or try to intervene (however well-intentioned those may be). And no, we are not going to stop taking our kids out in public, how else are they going to learn how to handle being out and about?

4 - coverage on awareness from the standpoint of teaching kids to be accepting and kind to others ... a lot of kids with autism want to make friends but don't know how to go about it and their "quirky" behaviors can make it difficult for them to interact with other kids.

5 - please, please, please help to dispel the myth that people with autism are not loving / affectionate. That is just flat out not true. They may show their feelings in different ways, but they do have feelings just like everyone else, and for people to believe otherwise is harmful to those with autism.

With 1 in 150 being diagnosed on the spectrum, one way or another the world is going to have to learn to adapt to our children (and the adults who are now paving the way) and not just expect those with autism to do all the adapting to fit in to the world.

Danette

Mom to Dominik, Dawson, and Wyatt
Check out our story at http://www.whatkindofworlddoyouwant.com/videos/view/id/384471

Story Idea-Awareness

This posting was submitted from a mother who wants more awareness coverage. This item was emailed to this on this blog--AR


Hi,
I just wanted to mention that I took my son to see a specialist today. The nurse and the doctor really made me feel like my son was inconveniencing them. He can't help it if he gets afraid and acts out. Getting hysterical over an alcohol swab is just something that can happen with Autism.

Really if health professionals don't understand or know much about Autism, what can we expect from the general public? I run into this kind of treatment at doctor's offices all the time, even the regular pediatrician's office. My son's disorder is noted at the top of his chart. They have to see it. So why do I get the "your child is so spoiled" look all the time from the nurses? Why isn't someone educating these health professionals about this disorder?

Thanks for reading this,
Robyn Nichols