# April is Autism Awareness Month



## sandc

As a parent of a 20 year old son with Autism, every month is Autism awareness month for me.

Did you know there are NO independent living centers for people with Autism in this part of California? Most group homes are not willing to take in people with Autism. Especially young men. My prayer is that independent living options would become available to young men with Autism. Here, there, and everywhere.


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## sandc

Have you ever wondered what it's like to be autistic? I've read an explanation that goes like this. Imagine that you are abducted by aliens and taken to their planet and just dropped off with no explanation. Everything they do and say is foreign to you. None of it makes sense. When you try to do anything you are scolded or punished. You just can't understand anything about what's happening.

How would you get by in such a place? How would you ever learn to fit in? One of them would have to teach you every little nuance of how to behave in their society. Reach out to someone with Autism today. Show them that you care and that they fit in to your world.


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## Wiserforit

The rate of autism/aspberger's has increased alarmingly and they don't seem to know why. We have friends down south with two boys, affected to different degrees. They seem to think maybe it is chemicals but can't finger anything in particular. 

We have an environment that is about the most pristine in the country so maybe that is why our boys had no sign of it. But society at large is going to have to deal with this decisively. They are already calling it epidemic proportions, especially for boys. One in fifty with autism spectrum! That's incredible.


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## sandc

Here's the reality of Autism for Caramel and I... 

He has never EVER told us he loved us. We tell him we love him, he says "yeah." That's as close as it gets.

His preferred emotion is anger. Almost every day I come home I find that Caramel has cried at least once during the day because he has had one or more angry outbursts.

He exhibits self-injurious behaviors. He would rather experience physical pain than emotional pain. He has given himself black eyes, nose bleeds, scratches galore (Caramel and I have a few of those he's given us), and contusions without number. Some of them pretty nasty.

He is 20 but only understands the world at a 10 year old level. He has had 5 bikes stolen from him. One person just walked up and took his bike from him.

He desperately loves people. People shun him because of his odd behaviors. I cannot make him understand that it is the behaviors that scare people away.

He ASKS me if he can have a girlfriend. He thinks I can just give him one. (please, no smart remarks, this one really hurts me to have to try to make him understand)

He is prone to wandering around outside at night. He has defeated every alarm that I and alarm professionals can device.

There are no job programs that are willing to take him.

There are not group homes that are willing to take him (or any other autistic young man) because they already have learned how angry autistics can be.

Caramel and I are faced with a lifetime of caring for him and when we die... then what? Saddle his sister with his care?

No, of course it's not all bad and we do not for one second regret having him or raising him. But we are becoming so weary of the daily battle that is teaching him. Caramel has a worse time of it than I do. Ever wonder why you don't see her on here much?

This is the reality of Autism for us.


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## Wiserforit

sandc said:


> Here's the reality of Autism for Caramel and I...
> But we are becoming so weary of the daily battle


I didn't know you struggled with this but my sympathies. Yes, for our friends the guy is a stay-at-home Dad and most of the burden has been on him. He's cried about it to me when he's been at the end of his rope. It never goes away.


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## mablenc

Proudly walking around with blue hair this month. I am glad they now have an autism awareness day. I wish I would have know the signs instead of going a few years trying to figure out what was going in with my little Aspie. I do hope with all this awerness they develop programs for the adults. Lord know we cannot live forever. 

My son told me he loves his mommy, not I love you but close, last week for the first time. I can't discribe how good it felt. 

Sandc, are you in the US? Best buy has a great autism program that employes people with autism and also supports their employees who have children with autism. And I believe work with the communities.
_Posted via Mobile Device_


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## mablenc

I also got teary eyed when I read about the girlfriend, that's something I'm sure I will be hearing too.
_Posted via Mobile Device_


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## LovesHerMan

This is heart-breaking, S. Are you familiar with the books by Temple Grandin? 

Thinking in Pictures, Expanded Edition: My Life with Autism (Vintage): Temple Grandin: 9780307739582: Amazon.com: Books

Amazon.com: The Way I See It, Revised and Expanded 2nd Edition: A Personal Look at Autism and Asperger's (9781935274216): Temple Grandin: Books

She is high-functioning autistic, and she explains how she sees the world in pictures rather than in words. She struggled to find medications that helped her, and she fashioned a "squeeze box" to help calm herself when she felt overwhelmed by the world. Here is her website:

Welcome to Temple Grandin's Official Autism Website

Our mental health system is indeed non-existent. There may be changes coming due to all of the shootings by mentally ill men, but it will take a long time to re-create the institutions that we had in the past to serve the mentally ill.


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## sandc

Thank you Wiser and mablenc.

Lovesherman, yes we are familiar with her. My wife has heard her speak and met her. Temple is very high functioning. My son is on the more severe end of the spectrum.


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## mablenc

Sandc, have you tried medication for the self injury? I was agianst this for many years, but as they get older the injuries get worse. We decided to medicate and it has been a blessing.
_Posted via Mobile Device_


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## sandc

He has been on many medications his whole life. Right now is is on Luvox and Abilify.


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## mablenc

We tried a couple but intuniv seems to have decreased the self injuries by far.
_Posted via Mobile Device_


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## richie33

We are new to this. Our oldest son on the spectrum. My wife noticed things very early.
He has been with early intervention since he was 18 months old. It has been hard on us.
I can only speak as a father for me its pretty tough. I keep thinking the next diagnosis someone will say he's fine.
That he is not on the spectrum. I cant talk to family cause they have shown zero understanding.
He is starting special education in September and it breaks my heart that he is only 3 and he is already
working so hard trying to learn and speak. Everyone said we have done the right thing...the earlier the help
the better his future will be.
Sandc I can feel your words how hard it must be to hear your son asking for a girlfriend. As a man that's what
I think. Will he find love? Will he be able to work? Have children? Heartbreaking.
_Posted via Mobile Device_


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## sandc

Thanks Richie. We are at the other end of the journey from you. Our son was in the Lovaas program, and started when he was about 2 or 3. It was an aggressive in-home therapy program and meant we had people coming and going from our house all day long. He was in therapy for 8 hours a day and we were expected to carry it on through the evening until they got back again. No let up.

He's been in special ed his whole life. Much of which we've had to fight for. Sometimes just my wife Caramel fighting for his rights, sometimes we had to retain an attorney to get the schools to do what they are mandated to do. We eventually elected to homeschool him and his sister. This has all taken a huge toll on Caramel. Now after 18 years of education she is just done. She can't do it anymore. I can't quit my job to do it. The state has no programs for him. We are just winging it now.

I came to grips long ago that he will never be like the other young men I work with at church. It is what it is. I tell you one thing. He has taught me how to love the unloveable.


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## Lyris

I have a professional interest in autism and what always strikes me is the huge range.

I know, I know, that's why they call it a spectrum. But I think it must make it even more difficult for parents who have children who are towards the lower functioning end. Because you get the Temple Grandins and other higher profile people/ parents who have apparently been 'cured' by removing gluten from their diet. And then there is a child I know who is five, can't speak at all and can't go into any place, other than his house, that has a roof. All the early intervention in the world isn't going to allow him to live independently. 

This is a documentary I loved Autism: The Musical - Wikipedia, the free encyclopedia. And there was a British documentary series too about a group of adolescents with autism working to put on a theatrical production. Here it is, Young, Autistic & Stagestruck - Channel 4

And here's another good one, BBC Three - The Autistic Me.

I'm so sorry there aren't good residential options for your boy, Sandc. It must be a constant worry for you. Unrelenting stress. Where I live there has just opened the first combination aged-care and disability-support residential community. It's for older people and their dependent adult children who have various disabilities which mean they can't live independently. The idea is that they are settled and cared for so when their parents die, they have familiar, supportive accommodation. 

I hope it's successful and more are built.


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## sandc

The reason I try to find the humor in everything in life is that if I didn't, I go stark raving mad. So many fathers here just walk away from it all. The divorce rate among families with autistic children is unbelievable just in my area. Part of my whole airplane thing has been just escape behavior. Just wanting to get away and forget for a few hours. I am trying to encourage Caramel to do the same but she has a harder time of it. That is why I take her away somewhere almost every weekend. Even just for a few hours. To forget the stress.

I would love to see more residential options here but it's starting to look like if I want it, I'm going to have to do it myself and I have no clue how to even begin something like that.


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## mablenc

I would like to add a suggestion for all parents with autism children. If you have not already please teach your children how swim. The number one cause of death of individuals with autism involve incidents associated with wandering, which include exposure to the elements and drowning. Children with autism are typically drawn to water and are not aware of the dangers. If you have a pool at home, please take extra precaution to ensure the safety of children. As Sandc said his son has worked his way around all types of security systems. My little one at 18 months could unlock doors.
_Posted via Mobile Device_


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## Lyris

Drerio is looking into starting a non-profit to help kids with autism integrate into education (I think, forgive me D, if I got it wrong.). Maybe a non-profit working towards good residential options for adults with autism would be a possibility? Lord knows, the need is only going to increase.


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## sandc

The need will be increasing exponentially here in California.

I taught my boy to swim years ago. Relatively easy compared to what I am no trying to teach him. This is a bad part of town. Stay out. This is an OK part of town. You can go here. He can't see the difference between the two so we're having to do discreet trials to show him the difference. If you see X, then this is bad. If you see Y, then this is good. But if you see a person from X, it's bad. It's so confusing to him. There is always something else to teach. I kept seeing the light at the end of the tunnel and thinking I was almost there, then the tunnel just keeps longer and longer.


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## richie33

Right now we have 30 hours of care a week in the house. It does feel like a juggling act to schedule everything. We both work full time but are blessed to be able to have jobs where our schedules work with all the help.
My sons diagnosis is PDD-nos. since the ABA training has been in place we have seen major improvement. But any changes to the routines really throw him off. We sort of have a one to two hour rule when visiting friends and family. We leave before he starts getting too stressed. It works out so far. MTV show World of Jenks is really good show to watch if you get the chance. It features Chad, 21 year living with autism. Very real look into the world of autism.


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## mablenc

sandc said:


> The need will be increasing exponentially here in California.
> 
> I taught my boy to swim years ago. Relatively easy compared to what I am no trying to teach him. This is a bad part of town. Stay out. This is an OK part of town. You can go here. He can't see the difference between the two so we're having to do discreet trials to show him the difference. If you see X, then this is bad. If you see Y, then this is good. But if you see a person from X, it's bad. It's so confusing to him. There is always something else to teach. I kept seeing the light at the end of the tunnel and thinking I was almost there, then the tunnel just keeps longer and longer.


It's hard to teach them about dangers, I worried about by son not paying attention to moving cars for the longest time. The. He saw the cars2 movie and all of the sudden he's hurrying to move out of the way even if the car is far. Sometimes you have to trust that God will provide.
_Posted via Mobile Device_


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## Zulnex

I would just like to say that I will pray for everyone.

Please accept my apologies, I am aware that my words of comfort are not enough.

Many years ago, my next door neighbor's 8 year old son was suffering from autism. I used to sit next to him and hold his hand. He always gently smiled and enjoyed our times together.

I will never forget him.


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## mablenc

Thank you Zulnex, at least for me kind works and prayers are always welcome.
_Posted via Mobile Device_


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## EleGirl

"Women who were abused during childhood may face a higher risk of having a child with an autism spectrum disorder, according to new findings. 

Women in the study who experienced the highest levels of physical and emotional abuse were 60 percent more likely to have a child with autism than women who weren't abused, the study found.
"



Abuse Of Mom In Childhood And Autism Risk - Forbes


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## daffodilly

Sandc, I've said this before in another thread, and I'll say it again....I really, really admire Caramel for homeschooling your son and daughter all those years. My little guy is 6, and I wouldn't know where to start, and quite frankly am terrified to take that kind of responsibility on. I can definitely empathize with your worries...because they will be mine in another 14 years. 

Right now my wish is for my son to have one great friend. Kids are tolerant of him now because they're still so young, but I know they already notice his quirks.....he's the kid in the class who cries at the drop of a hat, stands too close to you, hard to talk to. 

But it's awesome, awesome, awesome that you two are so in love with each other and that you make sure you get breaks together. That in itself is a gift for your son....rock solid parents.


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## sandc

Zulnex said:


> I would just like to say that I will pray for everyone.
> 
> Please accept my apologies, I am aware that my words of comfort are not enough.
> 
> Many years ago, my next door neighbor's 8 year old son was suffering from autism. I used to sit next to him and hold his hand. He always gently smiled and enjoyed our times together.
> 
> I will never forget him.


I'll take prayer any time! Thank you. :smthumbup:


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## sandc

EleGirl said:


> "Women who were abused during childhood may face a higher risk of having a child with an autism spectrum disorder, according to new findings.
> 
> Women in the study who experienced the highest levels of physical and emotional abuse were 60 percent more likely to have a child with autism than women who weren't abused, the study found.
> "
> 
> 
> 
> Abuse Of Mom In Childhood And Autism Risk - Forbes



I appreciate your input but I would like to limit the thread to just increasing the knowledge of what it's like living with someone affected by Autism. Getting into the causes just opens up multiple cans of worms and causes arguments.


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## sandc

daffodilly said:


> Sandc, I've said this before in another thread, and I'll say it again....I really, really admire Caramel for homeschooling your son and daughter all those years. My little guy is 6, and I wouldn't know where to start, and quite frankly am terrified to take that kind of responsibility on. I can definitely empathize with your worries...because they will be mine in another 14 years.
> 
> Right now my wish is for my son to have one great friend. Kids are tolerant of him now because they're still so young, but I know they already notice his quirks.....he's the kid in the class who cries at the drop of a hat, stands too close to you, hard to talk to.
> 
> But it's awesome, awesome, awesome that you two are so in love with each other and that you make sure you get breaks together. That in itself is a gift for your son....rock solid parents.


Thank you so much. That means a lot to us. It really does. Sometimes we don't feel so awesome. We just cling to each like two drowning people and hope for the best at times.

And Caramel really is the hero in all of this. Everything my son is can be attributed to her hard work.


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## Coffee Amore

sandc - I know you're a devout Christian so I wonder if you've heard of former professional football player, Kurt Warner (he holds multiple football awards including MVP), a devout Christian, who is building Treasure House, which seeks to develop a replicable model of a supportive living community for young adults with special needs. His Treasure House project was in our local Sunday paper. He started the project because his oldest son is legally blind and has developmental delays.

“With our oldest son having disabilities and him graduating from high school, we have always wondered what’s next for him,” Warner said. “We’ve actually got him in an assisted living home now where he’s growing leaps and bounds and becoming independent and really living the life that we believe God created him for. Our goal is to; first of all bring our son closer to us because he’s not in Phoenix right now and to also open those opportunities for other families. So we are in the midst of that but it’s really coming together really quickly and very well. Our hope is to take that and model that around the country to as many places as we can so that other parents like us don’t have to send their children away, they can keep them close and still have those opportunities. So that’s the big piece of the puzzle.”

Kurt Warner | First Things First - Outreach


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## Lyris

Sandc, do you think that very intensive program was helpful to your son? I wonder about those, because they must put such an extreme amount of pressure on a family, I hope they do actually do what they are intended to do.


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## sandc

Lyris,
well it depends upon the child generally I firmly believe in these types of programs. my son had to learn everything through discrete trial. behavior and reward behavior and reward over and over and over until he got it. he simply could not learn by observation. it was heartbreaking watching our son being trained similar to a dog but we had no idea what else to do. for a child like my son who is on the severe end of the spectrum early intervention is a must. unfortunately for us we wasted almost two years trying to figure out what was wrong with him. his diagnosis was like a punch in the gut to both of us.
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## Thewife

My son was suspected to be on the spectrum at 18 months and my life turned upside down. At 4 he was dismissed of ASD and was said to have mild language delay and some sensory disorder, at 6 he is doing well that his current teacher didn't suspect anything until I brought it up. I never went for the psychological assessment so far, I simply refused to and finally its due next month. I don't know what is it exactly he has. But he is doing awesome that only those who observe him closely will notice that he has some mild issues. I have spent last 4 years in working hard to pay for his therapies and spending all my free time teaching and helping him hit the milestones. I am an early childhood teacher and he has inspired me to become special education teacher. Starting my masters in sped soon and enjoying every minute working with these beautiful kids. I never thought I could love them all this much.


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## sandc

Coffee Amore said:


> sandc - I know you're a devout Christian so I wonder if you've heard of former professional football player, Kurt Warner (he holds multiple football awards including MVP), a devout Christian, who is building Treasure House, which seeks to develop a replicable model of a supportive living community for young adults with special needs. His Treasure House project was in our local Sunday paper. He started the project because his oldest son is legally blind and has developmental delays.
> 
> “With our oldest son having disabilities and him graduating from high school, we have always wondered what’s next for him,” Warner said. “We’ve actually got him in an assisted living home now where he’s growing leaps and bounds and becoming independent and really living the life that we believe God created him for. Our goal is to; first of all bring our son closer to us because he’s not in Phoenix right now and to also open those opportunities for other families. So we are in the midst of that but it’s really coming together really quickly and very well. Our hope is to take that and model that around the country to as many places as we can so that other parents like us don’t have to send their children away, they can keep them close and still have those opportunities. So that’s the big piece of the puzzle.”
> 
> Kurt Warner | First Things First - Outreach


There are a lot of places that are starting up but none are in our area. We live in a rural part of the state. We probably could get him in a residential program but it would mean he would be at least two hours away from home if not more.

I have not heard of this particular program. We'll check it out.


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## sandc

Thewife said:


> My son was suspected to be on the spectrum at 18 months and my life turned upside down. At 4 he was dismissed of ASD and was said to have mild language delay and some sensory disorder, at 6 he is doing well that his current teacher didn't suspect anything until I brought it up. I never went for the psychological assessment so far, I simply refused to and finally its due next month. I don't know what is it exactly he has. But he is doing awesome that only those who observe him closely will notice that he has some mild issues. I have spent last 4 years in working hard to pay for his therapies and spending all my free time teaching and helping him hit the milestones. I am an early childhood teacher and he has inspired me to become special education teacher. Starting my masters in sped soon and enjoying every minute working with these beautiful kids. I never thought I could love them all this much.


That is so great to hear. We need more special ed teachers who really "get it." I'm not so sure about some of the ones we have around here.


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## daffodilly

sandc said:


> And Caramel really is the hero in all of this. Everything my son is can be attributed to her hard work.


And the fact that you recognize that and are there for her is equally heroic. Don't diminish the value in that!


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## sandc

daffodilly said:


> And the fact that you recognize that and are there for her is equally heroic. Don't diminish the value in that!


AND she's really good in bed!! :smthumbup:

AND so am I for that matter! I guess life isn't all that bad after all.


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## daffodilly

:lol::rofl:


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## Ikaika

Our oldest (13) has ASD (autistic spectrum disorder)... he is NOT our ASD child. I make that distinction because in our minds his autism does not define him. 


Right up until this year (8th grade), he was placed in a fully self-contained classroom. In those early years he was a 'runner'. It pretty much means what the name implies. We used to have to lock the doors to our house even when we were home for that same reason. He is verbal but has all the other characteristics associated with his speech, echolalia, perseveration, and non affect. He has every social deficit that every other ASD child has and essentially has the social maturity of a 2 year old. He has the typical 'stim' behavior but to most it would not be obvious to those who are less informed. He does not 'flap' arms hand or fingers. He has sensory issues that excludes him from a number of normal activities that most kids his age enjoy. 

However as I said our child has autism he is NOT our autistic child. He may not show us the same love we show him, but he has taught us more than any professional, textbook or workshop ever could. He has taught us a great deal of tolerance toward others. To be less self-indulgent and more outwardly concerned for others around us. He has taught us to view life through a different lens. And, provide a perspective that at times is enlightening in spite of the difficulties. 


We have had him assessed by a number of professionals including Dr. Fred Vokmar's team at Yale - http://autism.yale.edu/guest-bios/fred-r-volkmar We understand the long-term prospective for him. As he enters high school next year we understand that he will not be on a diploma track. This will restrict his many employment options as well as his ability to seek higher education. In a world wide economy that is changing toward requiring more not less education, he will not be look at favorably by most employers. In the workplace where pressures to keep a job can demand teamwork and cooperation not just skill and knowledge level, his main deficits may hinder the many possibilities. 

Yet, my son is not unique. There is a population of these wonderful individuals. A group that can so easily be dismissed and have no voice. They have no place to go (as told by SandC and his wonderful son). I have exhausted myself to the point of realizing less about what others can do for my son. Not be pitiful about the woes of his inabilities. I am determined to show society that these individuals are not throw-aways. They have value. They have a worth to society. As I have mentioned in another thread, I am serious considering and planning for a change in my own career path. A path less about me and more about these wonderful people like SandC's son. I am determined to forge the path to link their days from the educational system to one where they can gain meaningful employment. One where they can learn to be more independent, financially and in life skills. Contributors to our society. Now I am not naive, in thinking this will happen for all, but I will not forget all and work toward what is possible and not be discouraged. 

In time I will reveal more and I am determined to not allow my son to be defined by his disability. He is my son who has autism, but he is not my autistic son.


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## sandc

D, you set something up in Hawaii and we may just move there.


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## Ikaika

sandc said:


> D, you set something up in Hawaii and we may just move there.


you guys will fit right in like a well worn in outfielders glove. We are a close knit group of families with ASD loved ones and are always welcoming of more.


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## Thewife

I know what you mean by the teachers not getting it, I met some who are teaching for years but I can tell they don't really understand or want to understand what a parent wants or who they feel unless they have some personal experience. 

Drerio,
Thats so wonderful of you planning something like that. Over here, they have career vocational education from 13 years with lots of IT skills to communicate and I can tell they communicate way better through email and facebook than in person.


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## ChangingMe

SandC, I know you have mentioned your son's autism before, but I don't think I realized it was at this level. I too am in awe of you and Caramel, though I know, as parents, you just do what you have to do. 

It is shameful that there is no facility in your area that will help with your son. It seems like several autism-specific centers have cropped up around us recently, though we are in the Dallas metroplex, which is quite large. 

I have worked some with autism/Aspergers, though it has not been my main scope of practice. I have gone to some trainings though, as the son of a close friend has PDD-NOS, so I have wanted to learn all I can in hopes of being of some help to my friend and her family. 

I will be praying for you all. Thank you for sharing about your son. If you don't mind, could you share some of his strengths too? My friend's son, though he too self-injures and struggles terribly with being in social situations, is brilliant and funny and does great with adults. I would love to hear some more about your son, in order to get a clearer idea of who he is.


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## sandc

*heavy sigh* 

Thanks for reminding me of this, CM.

What are his strengths? 
1. Absolutely unshakable faith in Christ. He prays for all the kids he has known to believe in Christ -- at EVERY meal. 
2. Very patient when it comes to small children.
3. Photographic memory for maps and floorplans. He can walk around a house and draw an exact floorplan.
4. Mechanical aptitude. He can field strip and put back together any vacuum cleaner in less than 5 minutes.  Yes, he has a part time job at a vacuum store.
5. Loves the outdoors (like his daddy).
6. Likes flying, loves being at the airport.
7. Loves to help with housework, yardwork, any work.
8. Helps instantly without grumbling. Well, almost instantly with almost no grumbling. 

And we are by know means parents of the decade. We've made LOTS of mistakes with him. We've been impatient, gotten frustrated, yelled. We've seen many parents like us who labor day in and day out trying to help their autistic children, taking care of their autistic children. They are all heroes. I'm in this for the duration. I love my family with a depth and passion too deep for words. I'll stick with all of them until... well probably until I stroke out.


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## sandc

And let me just add how proud of my son I am that he has been able to learn as much as he has given the severity of his condition. For a severely affected kid he has the equivalent of a Mensa membership.  And yes, I DO tell him I'm proud of him and I love him, EVERY DAY.


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## Ikaika

sandc said:


> And let me just add how proud of my son I am that he has been able to learn as much as he has given the severity of his condition. For a severely affected kid he has the equivalent of a Mensa membership.  And yes, I DO tell him I'm proud of him and I love him, EVERY DAY.


So he was on a diploma track? That is fantastic. I know if CA, ASD kids can go to HS until age 22... Is he still going to school?


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## sandc

This is actually the trap we're stuck in. The HS system wants to keep him until he's 22 but they are just babysitting him. They want to teach him "life skills". They go to a house and learn to do laundry, cook, clean, etc. He already knows how to do that. We were trying to get him on a job program but everyone seems resistant to that until he transitions out of the HS programs.

No, he didn't get a diploma, he got a certificate of completion. His academics are only at a 5th or 6th grade level. But that's plenty of smarts to be able to take care of himself; balance a checkbook, make change, etc.


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## Ikaika

sandc said:


> This is actually the trap we're stuck in. The HS system wants to keep him until he's 22 but they are just babysitting him. They want to teach him "life skills". They go to a house and learn to do laundry, cook, clean, etc. He already knows how to do that. We were trying to get him on a job program but everyone seems resistant to that until he transitions out of the HS programs.
> 
> No, he didn't get a diploma, he got a certificate of completion. His academics are only at a 5th or 6th grade level. But that's plenty of smarts to be able to take care of himself; balance a checkbook, make change, etc.


I feel for you and that is why I want to start my organization of HS to employment. Your School system sounds like ours, the cookie cutter approach does not work.


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## sandc

There simply cannot be enough programs for these kids. Autism Spectrum, Cerebral Palsy, Down's Syndrome, the crush of these kids is overwhelming the system. We need more help from private providers. The state simply cannot handle the load.


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## Ikaika

sandc said:


> There simply cannot be enough programs for these kids. Autism Spectrum, Cerebral Palsy, Down's Syndrome, the crush of these kids is overwhelming the system. We need more help from private providers. The state simply cannot handle the load.


I agree. I have already started the 501c application process. I am trying to go after private grants and other funding sources. My hope is to have this project launched within 18 months. I know as time gets closer it will consume vast amounts of my time, but I will consider it a labor of love for the voiceless.


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## Thewife

sandc said:


> *heavy sigh*
> 
> Thanks for reminding me of this, CM.
> 
> What are his strengths?
> 1. Absolutely unshakable faith in Christ. He prays for all the kids he has known to believe in Christ -- at EVERY meal.
> 2. Very patient when it comes to small children.
> 3. Photographic memory for maps and floorplans. He can walk around a house and draw an exact floorplan.
> 4. Mechanical aptitude. He can field strip and put back together any vacuum cleaner in less than 5 minutes.  Yes, he has a part time job at a vacuum store.
> 5. Loves the outdoors (like his daddy).
> 6. Likes flying, loves being at the airport.
> 7. Loves to help with housework, yardwork, any work.
> 8. Helps instantly without grumbling. Well, almost instantly with almost no grumbling.


He is such a wonderful person, the school should have put him on the job training by now. Thank you for sharing.


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## Ikaika

Thewife said:


> He is such a wonderful person, the school should have put him on the job training by now. Thank you for sharing.


Thank you too for the encouraging words. These kids are not 'throw aways'. I hear SandC story and I look at my son and my fortitude and heart grows bigger for these individuals.


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## Thewife

drerio said:


> Thank you too for the encouraging words. These kids are not 'throw aways'. I hear SandC story and I look at my son and my fortitude and heart grows bigger for these individuals.


The world needs more people like you, I wish I live near you to be of any help. Hope all goes smooth for you.


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## Bellavista

We have an Aspergers son, he is 25 later this year and is back living with us after a few years away.

He is has a photographic memory for facts and develops obsessions for certain topics. He then has to research until he knows every possible thing he can about that topic.

He also paces, in every house we have lived in, he maps out a pacing route and he just walks around and around that path. He always did this before school and when he came home. Now he does not do that unless he is troubled, but he has claimed one spot on the couch and that is where he sits.

Trouble is, he no social skills or understanding of how to function in society. In school he was described as lazy and socially inept. He had few friends, although with 2 brothers just 1 & 2 years younger, he no need to look outside of home for companions.

The older he gets, the more obvious it becomes that he is 'different'. I would say emotionally and socially he is about at the level of a 12 year old. Although, if you were to sit down and talk to him about one of his obsessions, sharks, law, war or world politics, he will recite facts to you for hours.

While he was living away from home, he made very poor decisions and ended up drinking and on drugs and was heavily influenced by a psycho girlfriend. He ended up living with our second son and his wife. They could not cope with him, so he back with us now, a state of affairs that I cannot see changing anytime soon.

Despite his intelligence, he cannot make decisions well enough to live by himself. Coming to terms with this has been hard for both of us, when he was younger, we thought he might 'grow out it'.


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## richie33

Took my sons to the zoo. My son on spectrum knew many of the animals by name. Little victories ,I will take them!!!!


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## Thewife

Bellavista said:


> We have an Aspergers son, he is 25 later this year and is back living with us after a few years away.
> 
> He is has a photographic memory for facts and develops obsessions for certain topics. He then has to research until he knows every possible thing he can about that topic.
> 
> He also paces, in every house we have lived in, he maps out a pacing route and he just walks around and around that path. He always did this before school and when he came home. Now he does not do that unless he is troubled, but he has claimed one spot on the couch and that is where he sits.
> 
> Trouble is, he no social skills or understanding of how to function in society. In school he was described as lazy and socially inept. He had few friends, although with 2 brothers just 1 & 2 years younger, he no need to look outside of home for companions.
> 
> The older he gets, the more obvious it becomes that he is 'different'. I would say emotionally and socially he is about at the level of a 12 year old. Although, if you were to sit down and talk to him about one of his obsessions, sharks, law, war or world politics, he will recite facts to you for hours.
> 
> While he was living away from home, he made very poor decisions and ended up drinking and on drugs and was heavily influenced by a psycho girlfriend. He ended up living with our second son and his wife. They could not cope with him, so he back with us now, a state of affairs that I cannot see changing anytime soon.
> 
> Despite his intelligence, he cannot make decisions well enough to live by himself. Coming to terms with this has been hard for both of us, when he was younger, we thought he might 'grow out it'.


It sure isn't easy, hope you guys figure out something that works for all of you.


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## Thewife

richie33 said:


> Took my sons to the zoo. My son on spectrum knew many of the animals by name. Little victories ,I will take them!!!!


Awesome Never underestimate what he can achieve...he will surprise you. I was told by a developmental specialist that my son will have hard time learning to read and write, now at 6 years old he is an independent reader and can draw and write "carcharondontosaurus" (hope I spelled it right and the developmental specialist was astonished at his achievements. Of course we have put in lots of effort in teaching him without pulling him far from his interest. 

The key is to find his interest and let the learning revolve around his interests.


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## mablenc

"carcharondontosaurus" (hope I spelled it right)"

This made me smile, very familiar situation, our kids are awesome!
_Posted via Mobile Device_


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## sandc

I was going to try to post at least one thing to increase Autism awareness ever couple of days but just haven't had it in me. 

Latest chapter in living life with autistic kids: There is a TAM meetup in Oregon next month. We have really tried to find a place for my son to stay so my wife and I can make the trip sans kids. It's easier that way and plus we can have a romp or two for the two nights we'll be gone. Autistic parents know how precious two nights alone in a hotel room would be! However, none of our "regulars" are available. I asked for help from my church to see if there was anyone who could host him for those two nights and have received no response.

At this point we're leaning towards bringing him on the trip. It's a bummer. People don't know what they are missing by not getting to know him. The dirty little secret here is that he's actually easier to travel with than our 15 yo daughter who is supposedly completely normal. Or as close to normal as our family gets.


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## mablenc

I'm sorry you don't have someone to watch him, we have never had a night off so far. 

I agree my son is easy to travel with. I live across the US from you, otherwise I would volunteer to have him over. Unless you want to drive/fly to NC?
_Posted via Mobile Device_


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## sandc

That's very sweet of you! What's your address? 

If we did that we'd just invade my niece's place. She lives in NC.

Actually it took years for us to get even a night out. We had to look for specific babysitters when my son was smaller and we could only be gone for a few hours. Some time in the last few years we've found that we can leave him and his sister alone for the day. This has been great because it's allowed us to reconnect. We've gone from almost splitting up ten years ago to being desperately in love today. I just can't get enough alone time with Caramel. She's really cool!


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## mablenc

sandc said:


> That's very sweet of you! What's your address?
> 
> If we did that we'd just invade my niece's place. She lives in NC.
> 
> Actually it took years for us to get even a night out. We had to look for specific babysitters when my son was smaller and we could only be gone for a few hours. Some time in the last few years we've found that we can leave him and his sister alone for the day. This has been great because it's allowed us to reconnect. We've gone from almost splitting up ten years ago to being desperately in love today. I just can't get enough alone time with Caramel. She's really cool!



It would be an honor to meet your family! I won't post my address because I would end up with a huge autism community center :rofl: Hmmm,.......maybe that would not be a bad idea:corkysm60::corkysm60::corkysm60::corkysm60::corkysm60:


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## mablenc

George529 said:


> I have the same difficulties. It's hard to go anywhere alone because my daughter needs lots of help. Some 21 year old girl I know offered to babysit her but I didn't think that was wise.


Yup, it's all about having the right person, which is hard


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## mablenc

I am so excited I had to share this link Autistic Girl Expresses Unimaginable Intelligence - YouTube this girl name Carly is non verbal but, once she as able to type she shares so much information about her world and body. I just realized why my son does certain things we think we can control or that he can just stop doing. 

Hope you enjoy it.
_Posted via Mobile Device_


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## Thewife

Watched it last year and tears rolled on my cheeks for some reason. Must watch
_Posted via Mobile Device_


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## sandc

mablenc said:


> I am so excited I had to share this link Autistic Girl Expresses Unimaginable Intelligence - YouTube this girl name Carly is non verbal but, once she as able to type she shares so much information about her world and body. I just realized why my son does certain things we think we can control or that he can just stop doing.
> 
> Hope you enjoy it.
> _Posted via Mobile Device_


I have never seen that. Thank you for sharing it. It really made me think about my son's stims (self-stimulatory behaviors). We have tried so hard to extinguish those behaviors but never really understood them. I should have him try to type out words on the computer and see what he says. He is verbal but a man of very few words.


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## mablenc

sandc said:


> I have never seen that. Thank you for sharing it. It really made me think about my son's stims (self-stimulatory behaviors). We have tried so hard to extinguish those behaviors but never really understood them. I should have him try to type out words on the computer and see what he says. He is verbal but a man of very few words.


It's very interesting, I would not have thought she was so high functioning. It makes me wonder what we are missing. Deffinatley try it, my son has an app on the Ipad that talks whatever you type. Give it time I hope you get results. I saw a documentary a few years ago where this boy would touch a plastic alphabet and asked for a piano! He said he has always composed music in his head. Crying like a baby when I saw that one. 

Carly (girl in the video) has a website http://carlysvoice.com/home/ she gives some very good advice in her FQA page.
_Posted via Mobile Device_


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## Thewife

sandc said:


> I have never seen that. Thank you for sharing it. It really made me think about my son's stims (self-stimulatory behaviors). We have tried so hard to extinguish those behaviors but never really understood them. I should have him try to type out words on the computer and see what he says. He is verbal but a man of very few words.


Yes they communicate a lot more in this way, I had 8 year old girl in my class who hardly connects or makes any eye contact. One day one our first I T lesson I asked them to type anything they want and she typed a page worth of information about what she likes and that included me, that's when one of my colleague showed me this video, it made sense.
_Posted via Mobile Device_


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## lostwithouthim

I've also got a 19 year old son with high functioning Autism. I live in the UK and I get no support for him either as he doesn't meet the criteria. I would love him to become more independent, but without the right support out there it is very hard to get the right services!


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## lostwithouthim

Does anyone know if I can get my son re-assessed now that my husband has left?


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## sandc

I don't know UK laws but it sure couldn't hurt for you ask for him to be reevaluated.


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## sandc

So I come home early to spend some quality time with my wife and as I near my home I see two police cruisers parked in front of my house. My wife and son are out front talking to a cop.

Turns out he had frightened some teen-aged girls. He waved at them through the window of their house. They yelled at him to go away and he did. Their mother came home and called the cops and filled out a police report. This was at some time in the past.

Today the mother saw my son riding his scooter and followed him to our house. Then she called the cops demanding that something be done about him. The cop was very apologetic. He was pretty annoyed with the mother. She was practically hysterical and couldn't remember when my son had waved at her daughters, nor when she filed the police report but dammit... something needed to be done. The police told me that they were concerned for my son's safety, not her her daughters. 

God bless that cop. We told him we'd have a talk with my son, as best we could anyway. Just another day living the dream.


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## Ikaika

sandc said:


> So I come home early to spend some quality time with my wife and as I near my home I see two police cruisers parked in front of my house. My wife and son are out front talking to a cop.
> 
> Turns out he had frightened some teen-aged girls. He waved at them through the window of their house. They yelled at him to go away and he did. Their mother came home and called the cops and filled out a police report. This was at some time in the past.
> 
> Today the mother saw my son riding his scooter and followed him to our house. Then she called the cops demanding that something be done about him. The cop was very apologetic. He was pretty annoyed with the mother. She was practically hysterical and couldn't remember when my son had waved at her daughters, nor when she filed the police report but dammit... something needed to be done. The police told me that they were concerned for my son's safety, not her her daughters.
> 
> God bless that cop. We told him we'd have a talk with my son, as best we could anyway. Just another day living the dream.


sorry to hear about this. We have had incidences with neighbors in the past. I completely understand and sympathize.

Have you ever read the book

"The Curious Incident of the Dog in the Night-Time"?


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## mablenc

I'm sorry Sandc, I know it must of been unpleasant. Do you want to share her address and we can bombard her with autism educational material? Or would you like me to buy you a mean people sign for her home so your son stays away. 

I'm seriously sorry, how sad that she can be so ignorant and what a bad example for her daughters. Give your son a big hug from me and tell him that he is awesome!
_Posted via Mobile Device_


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## ChangingMe

Oh, sandc (and Caramel), I'm so sorry. This beaks my heart for your son. 
_Posted via Mobile Device_


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## sandc

drerio: no, never heard of that book. Will look into it.

mablenc: I can tell no one better ever mess with your kids. Thank you.

CM: thank you too! You have a big heart.

These are just some of the painful life lessons he will have to learn. I take much of the blame. He learns by repetition and I have been lax at repeating these lessons to him. Reminding him what society's rules are (in a nutshell.) I haven't tried hard enough to help him understand the ramifications of his actions.

There was also an incident of some man taking a picture of my wife's license plate as she was pulling out of a parking lot after the police called her to come home. I'm still trying to wrap my head around that one. I went back and my wife pointed out the car. I was going to go door to door and find the SOB and find out what his story was. I decided that in this state of mind, I was just looking for a fight. Spending a night in jail would not be fun. Getting sued would be even less fun. So I just wrote down his license number and called it even.

What a day.


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## lostwithouthim

Another good book is House Rules by Jodie Piccoult. It looks more into how other people perceive autism and their behaviour. It's very upsetting when something like that happens. I had a very upsetting time last year with people not understanding about autism and both of them were in the Scouting movement!!! There should definitely be more awareness!


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## TCSRedhead

sandc said:


> So I come home early to spend some quality time with my wife and as I near my home I see two police cruisers parked in front of my house. My wife and son are out front talking to a cop.
> 
> Turns out he had frightened some teen-aged girls. He waved at them through the window of their house. They yelled at him to go away and he did. Their mother came home and called the cops and filled out a police report. This was at some time in the past.
> 
> Today the mother saw my son riding his scooter and followed him to our house. Then she called the cops demanding that something be done about him. The cop was very apologetic. He was pretty annoyed with the mother. She was practically hysterical and couldn't remember when my son had waved at her daughters, nor when she filed the police report but dammit... something needed to be done. The police told me that they were concerned for my son's safety, not her her daughters.
> 
> God bless that cop. We told him we'd have a talk with my son, as best we could anyway. Just another day living the dream.


It's a very scary situation for him and your family. Unfortunately, so many people are really still ignorant and don't understand. 

It's a matter of continuing to educate people in the public about autism as well.


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## sandc

I'm thinking of creating a card my son can carry with him. A card that explains that he is autistic and that many of the mannerisms and behaviors that he exhibits are normal for him and harmless. More and more of our community police officers are getting to know him which I think is a good thing. It will keep him safer.


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## Ikaika

sandc said:


> I'm thinking of creating a card my son can carry with him. A card that explains that he is autistic and that many of the mannerisms and behaviors that he exhibits are normal for him and harmless. More and more of our community police officers are getting to know him which I think is a good thing. It will keep him safer.


We did this for my son


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## TCSRedhead

That's a really good idea. I think it's helpful for people who really don't understand. 

My friend's son is an 18 yo black autistic kid who is mostly non-verbal. He ran up to a girl in a shoe store and grabbed her hair (he has a thing for colorful hair). The girl and her family freaked out and had security called. Now my friend is terrified about the situation repeating differently (someone hurting him).

On the flip side, because her brother has now learned about autism via her son, he was able to recognize the behavior in a kid who was on campus where he is a police officer. They had been called to a disturbance on the campus and upon approach, he recognized the behaviors. He confirmed with the mom who just broke out in tears of relief that someone understood and would treat him respectfully.


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## sandc

Actually you're making me think here. I'm going to start trying to think of ways I can proactively introduce him to the police officers in town. Maybe at the next public safety fair or even see if they would allow us into one of their morning briefings.


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## ChangingMe

sandc said:


> Actually you're making me think here. I'm going to start trying to think of ways I can proactively introduce him to the police officers in town. Maybe at the next public safety fair or even see if they would allow us into one of their morning briefings.


I think this is a great idea! I can only speak for my local law enforcement, but I have gone in and spoken with them several times on behalf of the agency I work for. They have always been welcoming. 

(Just a tip though -it never hurts to bring treats. And, surprisingly, they were more excited when I brought homemade cookies than when I picked up donuts. )


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## Ikaika

SandC

use something like this... my wife and I keep cards like this with us at all times


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## sandc

ChangingMe said:


> I think this is a great idea! I can only speak for my local law enforcement, but I have gone in and spoken with them several times on behalf of the agency I work for. They have always been welcoming.
> 
> (Just a tip though -it never hurts to bring treats. And, surprisingly, they were more excited when I brought homemade cookies than when I picked up donuts. )


Well... I think an attractive woman with cookies is going to be well received wheresoever she may go. Maybe I should send my wife with cookies.  

But seriously, I will look into this.


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## sandc

drerio said:


> SandC
> 
> use something like this... my wife and I keep cards like this with us at all times


I think I may make up some cards with slightly different wording but this is good.


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## MattMatt

sandc said:


> Have you ever wondered what it's like to be autistic? I've read an explanation that goes like this. Imagine that you are abducted by aliens and taken to their planet and just dropped off with no explanation. Everything they do and say is foreign to you. None of it makes sense. When you try to do anything you are scolded or punished. You just can't understand anything about what's happening.
> 
> How would you get by in such a place? How would you ever learn to fit in? One of them would have to teach you every little nuance of how to behave in their society. Reach out to someone with Autism today. Show them that you care and that they fit in to your world.


 I live this every day, with my wife. So I know a *little* of what you must go through. My wife is so high functioning that unless you know her very well, you'd never know there was anything 'wrong' with her.


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## sandc

In many ways the "aspies" have it the hardest. They are intelligent and appear to be "almost" normal. But their brains are still wired different. Their actions and behaviors are just viewed as inappropriate and rude because otherwise they appear normal. My nephew has Asperger's Syndrome and this is the problem he runs into.


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## mablenc

Hi, I would suggest you customize the cards so it says teen or young adult. You can order some free business cards here: http://www.vistaprint.com/free-business-cards.aspx?&GP=4/25/2013+7:21:25+PM&GPS=2819803115&GNF=0

I personally have never done it, but as my son grows I been thinking of it. I would also have your sons input on the wording so that he is comfortable presenting it. I would add your addres and phone number maybe? Maybe not? I guess if he gets lost it would help, but then you might have a bunch of teenage girls looking trough your window and waving because they now have his address 
_Posted via Mobile Device_


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## MattMatt

sandc said:


> In many ways the "aspies" have it the hardest. They are intelligent and appear to be "almost" normal. But their brains are still wired different. Their actions and behaviors are just viewed as inappropriate and rude because otherwise they appear normal. My nephew has Asperger's Syndrome and this is the problem he runs into.


When I first met my wife she was working as a psychologist and a counsellor. I think she studied psychology to try to understand how people think better.

Sometimes she says: "Matt, I know what people are going to do, but I somehow can't understand why they are going to do it or how they arrive at a decision."


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## sandc

mablenc said:


> Hi, I would suggest you customize the cards so it says teen or young adult. You can order some free business cards here: http://www.vistaprint.com/free-business-cards.aspx?&GP=4/25/2013+7:21:25+PM&GPS=2819803115&GNF=0
> 
> I personally have never done it, but as my son grows I been thinking of it. I would also have your sons input on the wording so that he is comfortable presenting it. I would add your addres and phone number maybe? Maybe not? I guess if he gets lost it would help, but then you might have a bunch of teenage girls looking trough your window and waving because they now have his address
> _Posted via Mobile Device_


He is a good looking kid when he isn't doing weird stuff and he does get looks from girls. Then he starts his stims and then they can't run away fast enough. 

That's okay. That frees him from a host of other problems.


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## sandc

MattMatt said:


> When I first met my wife she was working as a psychologist and a counsellor. I think she studied psychology to try to understand how people think better.
> 
> Sometimes she says: "Matt, I know what people are going to do, but I somehow can't understand why they are going to do it or how they arrive at a decision."


Tell her she's not alone. I don't understand people most of the time either.


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## Thewife

Hoping that the autism awareness will spread faster from now on than it did before, with fb, twitter and so many social networks its surprising that many people are still ignorant. 

It is always the parents who have contributed more to the awareness than the professionals, because they truly know the need for it. 

Perhaps everyone who is reading this thread and have some awareness can post something on your social network page today to create awareness, at least 1 of your friends will get it. 

Lets make this world asd friendly. Its a shame its taking this long.


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## sandc

I agree, the wife. Make the world friendly for everyone with disabilities. But more importantly, let's quit burying our collective head in the sand and pretend Autism is not a big deal. We need far more research to figure out what is happening here. Something has changed since we were kids. What happened in the 1980's and 1990's that made the incidence of Autism increase exponentially? Something has changed. It is not merely better diagnostics. We need science to get engaged and really start looking for a vaccine. Far fewer people were contracting polio.


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## TCSRedhead

sandc said:


> I agree, the wife. Make the world friendly for everyone with disabilities. But more importantly, let's quit burying our collective head in the sand and pretend Autism is not a big deal. We need far more research to figure out what is happening here. Something has changed since we were kids. What happened in the 1980's and 1990's that made the incidence of Autism increase exponentially? Something has changed. It is not merely better diagnostics. We need science to get engaged and really start looking for a vaccine. Far fewer people were contracting polio.


That's so critical. My husband's eldest child is on the severe end of the autistic spectrum. There were several other autistic children, all the first born children, born to kids who grew up on that same small street. WTH? There has to be something that is causing this - wouldn't it be remarkable to FIND that? 

I also know it was one of hubby's greatest fears with this pregnancy and it was something he was watching for in the first few months - any indication that this child had the same behaviors as his eldest.


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## sandc

I KNOW that feeling well. We were scared to have a second child. We kept saying, we're going to need another mommy and daddy if we have another child because my son took up so much of our time.

The company that comes up with a viable autism vaccine is going to make several fortunes.


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## mablenc

Sandc, you did have a second child right? I been holding off and I need to decide soon. If you don't mind sharing how did you make the choice? And what was the pregnancy like? Was there constant worry? What did you do diffently and how is diffent to parent a non autisic child? We have changed in every way and the parenting rules to out the window. How do you go back and pick up the book?
_Posted via Mobile Device_


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## sandc

mablenc said:


> Sandc, you did have a second child right?


Yup.


mablenc said:


> I been holding off and I need to decide soon. If you don't mind sharing how did you make the choice?


Just curious, why do you need to decide soon? To answer your question, I don't mind sharing. I hope you don't mind reading. We were really nervous about it and weren't really sure we were ready. Caramel just knew she wanted to have a second child at some point and things were kind of settling into a routine with our son. It took us a couple of years to get pregnant with our son so we figured we had some breathing room before she got pregnant so we stopped the birth control. About a month later I came hope from flying and Caramel was practically in heat. She pulled me onto the couch (son was playing in the backyard) and BAM. Our daughter was conceived. Ooooookay. Guess we're not waiting after all.



mablenc said:


> And what was the pregnancy like? Was there constant worry?


Both pregnancies were COMPLETELY normal.



mablenc said:


> What did you do diffently and how is diffent to parent a non autisic child?


I tell you what, parenting a non-autistic child shows you how many of your autistic child's behaviors really are normal after all.  What was amazing to us was how quickly our daughter picked everything up. It just amazed us how easily everything came to her. We had to remind ourselves to teach her and work with her anyway because the tendency was to let her learn on her own while we concentrated on our son. Can't do that. You have to balance your attention between the two. It's difficult.



mablenc said:


> We have changed in every way and the parenting rules to out the window. How do you go back and pick up the book?


 Pick up the book? Honey, you're having to rewrite the book! If you can raise an autistic child, trust me. The normal child will seem much easier, until they get older. Then it will reverse where it seems like the ASD child is easier, and the "normal" child is harder to raise! It also gives your ASD child a peer. Someone who accepts them for who they are, even more than you possibly. To the sibling, that's just who they are, they don't know any different. My son relies on my daughter to translate for him and she does really good at it. When we can understand what it is he wants, she comes along and says, "Oh, he wants..." whatever. It's a good experience for both of them!


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## mablenc

Thank you, one last question how far apart are they years wise?

The reason I said I have to decide is because I'm turning 34 soon then according to my dr the risks of Down syndrome increase and many other things. I also have osteoporosis, which is odd for my age and there are no studies on how pregnancy impacts your bones in my case. 
My doctor told me its a risk but she would help me in any way. My son is 9 by the way.
Your post always warm my heart, when's your book coming out? 
_Posted via Mobile Device_


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## sandc

No, not me. Caramel is the hero here. Everything my son is, is all due to her tireless work. She basically gave up her life so that he could have one. She tried to divide up the rest of herself time between her mother, our daughter, and me. She always saved the very best of herself for me. God, I love that woman.

That's also why she doesn't post much here. 

Oh, and they are 5 years, 1 month apart almost to the day.


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## Thewife

sandc said:


> Make the world friendly for everyone with disabilities.


The problem is most of the other disabilities are visible to some extend but almost all who have asd are very handsome/good looking and thus many people don't get it. 

Recently a friend of mine fumed on fb that a teenage girl kept her bag on a vacant seat on a crowded bus while many people wanted to sit there and had no regard for others. When I checked further on the colour of the school uniform and location I realized she must be an asd girl as there is a Autism school (very prominent and big) there. The worst is the person who complained on the fb is a special education teacher.....I was like whatttttttt????????????:scratchhead: I don't know how to educate the public, if you understand what I mean.


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## richie33

I get what you are saying. My wifes sister has been a teacher for 16 years and has no real idea what autism is. 
For me if my brother or sister had told me my niece or nephew was diagnosed with a disability I would research the diagnosis. In our extended family no one has. They are waiting for us to tell them. Its still new to us. We still can't fully explain it. They see a cute little boy and all they can say is he will be fine. Its frustration cause people think of autism as just one way. Its such a broad spectrum. I know before the diagnosis I was ignorant myself.
_Posted via Mobile Device_


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## MattMatt

richie33 said:


> I get what you are saying. My wifes sister has been a teacher for 16 years and has no real idea what autism is.
> For me if my brother or sister had told me my niece or nephew was diagnosed with a disability I would research the diagnosis. In our extended family no one has. They are waiting for us to tell them. Its still new to us. We still can't fully explain it. They see a cute little boy and all they can say is he will be fine. Its frustration cause people think of autism as just one way. Its such a broad spectrum. I know before the diagnosis I was ignorant myself.
> _Posted via Mobile Device_


I have been with my wife for 25 years and I am still learning stuff.


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## sandc

Thank you so much Caroline. No one has it easy do they? We all tend to look at the other people and think, "Wow, they have got it so together." But you never know what goes on when the front door to the house is shut. Yes we do have our burdens to bear but we bear them joyfully knowing that God has a plan for our son. Plans to prosper and not to harm him. God gives him hope and a future. Just as he has for us.


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## TCSRedhead

sandc said:


> We all tend to look at the other people and think, "Wow, they have got it so together." But you never know what goes on when the front door to the house is shut.


I like to use the paddling duck analogy. They look like they're just gliding along easily on the water but in reality, they're paddling like heck under the water!!!


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## sandc

TCSRedhead said:


> I like to use the paddling duck analogy. They look like they're just gliding along easily on the water but in reality, they're paddling like heck under the water!!!


Is that a quack at my duck face picture this morning in the what are you wearing thread? 

Yes, everything seems so easy on the surface. In reality, we're leading rich, full lives of quiet desperation.


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## TCSRedhead

LOL - I totally didn't think of that but now that you mention it, yes!


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## sandc

It's May now. I'm still very much aware of Autism.


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## daffodilly

Thought I'd share a cartoon my friend emailed me  

https://fbcdn-sphotos-d-a.akamaihd.net/hphotos-ak-prn1/945548_10152765126135062_2020878918_n.jpg


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## sandc

daffodilly said:


> Thought I'd share a cartoon my friend emailed me
> 
> https://fbcdn-sphotos-d-a.akamaihd.net/hphotos-ak-prn1/945548_10152765126135062_2020878918_n.jpg


Love it! :smthumbup:


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## Ikaika

We had our son's IEP transition meeting between middle and high school. Let's just say, my heart is very low right now. So I can relate to the picture above.


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## Thewife

daffodilly said:


> Thought I'd share a cartoon my friend emailed me
> 
> https://fbcdn-sphotos-d-a.akamaihd.net/hphotos-ak-prn1/945548_10152765126135062_2020878918_n.jpg


I posted this quote on my fb last year, but the picture goes well with it. Going to post this now, thanks for sharing.


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## Thewife

drerio said:


> We had our son's IEP transition meeting between middle and high school. Let's just say, my heart is very low right now. So I can relate to the picture above.


Sorry you are feeling low, I always feel that everyone has at least "one thing" that they can do well and they will be wanted by someone who needs that "one thing". 

I am currently giving private tuition to a 13 year old boy who has mild to moderate asd and I am disappointed with his school in the way they are preparing him for life, real waste of time. 

Don't be put off by what he can't do, focus on what he can do. I know its easy said than done, I had been practicing this for the last 4 years and am still not very good at it.


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## Ikaika

bump... for those of us with ASD children every month is autism awareness month.


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## Bellavista

Yes. And sometimes it is frustrating. How much easier it would be if our ASD son was like his brothers.

However, he is what he is, and we deal with what we have, not what we wish we had.


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## mablenc

drerio said:


> We had our son's IEP transition meeting between middle and high school. Let's just say, my heart is very low right now. So I can relate to the picture above.


I'm sorry, I hate it when it happens. one time I left feeling so hopeless holding my sons had I felt so alone.

I got home crying and asked God to help me as I could no longer handle the school situation.

Then a crazy miracle happened which I feel guilty about, the problem was the teacher who did not seem to want to work with my son. Anyway the next day I was informed that around the same time I prayed the poor teacher had an small accident and was out the whole year! 

Things worked out beautifully after that, I'm still friends with the replacement teacher. 

I don't pray much but when I do, I ask God not to hurt anyone for our benefit. :rofl:


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## sandc

It could have been for the teacher's benefit. God works everything to the good of those whom He loves.


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## mablenc

PHP:







sandc said:


> It could have been for the teacher's benefit. God works everything to the good of those whom He loves.


True but, I still feel guilty after 4 years! It's just that she got hurt at the exact time I prayed.

I could not even look her in the eye when I saw her the following year.


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## sandc

*Re: Re: April is Autism Awareness Month*



mablenc said:


> PHP:
> 
> 
> 
> 
> True but, I still feel guilty after 4 years! It's just that she got hurt at the exact time I prayed.
> 
> I could not even look her in the eye when I saw her the following year.


I think you need to cut yourself some slack. God does as he pleases not what you order him to do. That teachers minor accident could have saved her from having a major accident. You prayed for help and God help you in a way that he saw fit. Don't continue to punish yourself over this.


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## mablenc

drerio said:


> We had our son's IEP transition meeting between middle and high school. Let's just say, my heart is very low right now. So I can relate to the picture above.


Have you reached out to your local autism society? I once did bc I could not get my sons needs meet. The parent advocate offered to go with me to the IEP meetings, but It took only one phrase in an email to the director of the special needs program to get the ball rolling. Which was suggested by this parent advocate. PM me if you want that info, I can search for it.
_Posted via Mobile Device_


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## richie33

Our son is aging out of early intervention when he turns 3 in September we haven't found him a seat in any of the schools this September. We know he needs a school setting but all the space is taken. We can extend early intervention and the ABA classes until the end of December. But after that we are in a bit of a bind. Funding seems to be getting cut and there is a shortage of schools that are equipped to handle autism. Its a shame funding is getting cut and the number of autism keeps growing. 
I took both boys to a indoor playground, somewhere we have been before but my son usually just sits by himself, this time he really enjoyed himself, went on into the rooms, played in the jungle gym. I was very proud of him. When we got home both boys took a nap and when they woke up my son told me I was a boy and he was a boy but his brother is a girl. I take joy in knowing he will be able to tease his baby brother. I take these little victories.
_Posted via Mobile Device_


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## Lyris

Age out of early intervention at 3? That is ridiculous. It's 7 in Australia, which is bad enough.

Most kids here aren't even given a definite diagnosis until at least 3. 

I hope you find a good place for your son.


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## richie33

The Board of Education takes over at 3. We are just a name now....another number. The group that are helping us now are very good. Lots of communication between them and us. 
Basically with the board of ed we have been told " here's five school, go find one you like". none have a seat available for our son.
We are thinking about paying for a pre school 2 days a week and having the ABA teachers on site with him while he is there. Sounds like our best option for now.
_Posted via Mobile Device_


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## mablenc

PHP:







richie33 said:


> The Board of Education takes over at 3. We are just a name now....another number. The group that are helping us now are very good. Lots of communication between them and us.
> Basically with the board of ed we have been told " here's five school, go find one you like". none have a seat available for our son.
> We are thinking about paying for a pre school 2 days a week and having the ABA teachers on site with him while he is there. Sounds like our best option for now.
> _Posted via Mobile Device_



Rich, here is what worked for us, I found out how who is in charge of the special needs program, then I found the person in charge of services for children with autism.
I contacted him, introduced myself and my son, asked him about the programs the school district has to offer, I told him I did not care about the commute but the services. They may suggest you start at the closest school but you don't have to attend it.

You always want to be pleasant and open minded (with all the people who will be working with your son) I have even brought cupcakes to the IEP meetings. Listen to their opinions and be open to their approach. When you need to push back you will find that they will take you seriously and act faster because they see you as a partner looking for the best interest of your child, not yours. Many parents get emotional and stubborn with all reason, but you need to handle yourself correctly. I have cried and teared up during the meetings, its not easy but always take a minute to compose yourself or reschedule.

I was even told by the the guy who is in charge of the autism programs where he would take his kid if he had a child with autism. All the teachers have helped my son transition from school or when the year ends. I been told that they like to work with me because I am easy to get along with, but I am no doormat or pushover. 

Always take time to communicate with the teachers and staff involved, i have even become friends with a few who will tell me confidential information or give me heads up on any changes I may want to push back on. 

Now is your time to visit the schools, ask parents questions, see how the kids react when they are going to class. Keep your eyes open and if something feels off pay attention to what is going on.

In the same district the services and quality vary so look around.


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## mablenc

Lyris said:


> Age out of early intervention at 3? That is ridiculous. It's 7 in Australia, which is bad enough.
> 
> Most kids here aren't even given a definite diagnosis until at least 3.
> 
> I hope you find a good place for your son.


They have found that the sooner you act, the better outcome will be of the child. Even if not fully diagnosed at age three you can see speech delay or social delay in many of the autistic children. Here in the US the best age to diagnose and begin intervention is 3.


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## Ikaika

mablenc said:


> Have you reached out to your local autism society? I once did bc I could not get my sons needs meet. The parent advocate offered to go with me to the IEP meetings, but It took only one phrase in an email to the director of the special needs program to get the ball rolling. Which was suggested by this parent advocate. PM me if you want that info, I can search for it.
> _Posted via Mobile Device_


We have reached out to advocates and some have attended our IEP's in the past. However most of them admit that the middle to high school transition has changed so much in our state in the last year they are keeping up with trying figure it out themselves. 

Fortunately the high school teacher seems knowledgeable and dedicated. We will see.


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## sandc

Also educate yourself about your local special education laws. Yes, there are laws on this stuff. We actually had to retain a lawyer at one point when the school board told us flat out that they would not be able to accommodate our son. Bzzzzt! Wrong answer. The schools are required by law to provide an appropriate education in the least restrictive environment available. They don't want to because it costs them money. Mablenc outlined an excellent approach but also be ready to be a hardass. Sometimes you have to.


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## Ikaika

Lyris said:


> Age out of early intervention at 3? That is ridiculous. It's 7 in Australia, which is bad enough.
> 
> Most kids here aren't even given a definite diagnosis until at least 3.
> 
> I hope you find a good place for your son.


It is interesting. Along with having an ASD child, my wife is a speech and language pathologist in the early intervention program. She said this would work well (till age 7) only if the family dynamics were in place to support it. Often she sees children that would be better served outside the home

BTW, our son was diagnosed at age 3.5


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## Ikaika

sandc said:


> Also educate yourself about your local special education laws. Yes, there are laws on this stuff. We actually had to retain a lawyer at one point when the school board told us flat out that they would not be able to accommodate our son. Bzzzzt! Wrong answer. The schools are required by law to provide an appropriate education in the least restrictive environment available. They don't want to because it costs them money. Mablenc outlined an excellent approach but also be ready to be a hardass. Sometimes you have to.


We filed once, but it did not have to go far... there was a mediator that helped us come to a resolution. Yes, sometimes as parents we have to be the "us against them" advocate for our children.


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## Coffee Amore

Lyris said:


> Age out of early intervention at 3? That is ridiculous. It's 7 in Australia, which is bad enough.
> 
> Most kids here aren't even given a definite diagnosis until at least 3.
> 
> I hope you find a good place for your son.


I have a good friend in Australia who has a young daughter with autism. I've wondered, haven't asked her yet, if the public schools there provide specialized services to children with special needs. In the US, it's a requirement that an IEP (Individual Education Program) is set up if the child qualifies for special needs services.


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## mablenc

sandc said:


> Also educate yourself about your local special education laws. Yes, there are laws on this stuff. We actually had to retain a lawyer at one point when the school board told us flat out that they would not be able to accommodate our son. Bzzzzt! Wrong answer. The schools are required by law to provide an appropriate education in the least restrictive environment available. They don't want to because it costs them money. Mablenc outlined an excellent approach but also be ready to be a hardass. Sometimes you have to.



Oh I have been a hardass, received we had been asking to school for four months in 30 minutes. A shadow for my son, your are right, I had to write to the school board that my son was_ being denied his right to appropriate education_, thank you Bush, this is part of the no child left behind.

But I only had to play that card once,


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## sandc

mablenc said:


> Oh I have been a hardass, received we had been asking to school for four months in 30 minutes. A shadow for my son, your are right, I had to write to the school board that my son was_ being denied his right to appropriate education_, thank you Bush, this is part of the no child left behind.
> 
> But I only had to play that card once,


We did too. Funny how all the uncoorperative BoE reps showed up at the IEP when they heard we were not only bringing a lawyer but bringing a shark family lawyer. The Superintendant who had not planned on being there I'm sure, decided to show up and was on first name basis with our lawyer. They were so kind and sweet to us after that. All Caramel had to do was ask for something and we got it. It was amazing.


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## Bellavista

Coffee Amore said:


> I have a good friend in Australia who has a young daughter with autism. I've wondered, haven't asked her yet, if the public schools there provide specialized services to children with special needs. In the US, it's a requirement that an IEP (Individual Education Program) is set up if the child qualifies for special needs services.


I don't know too much about this, however, I do know that integration is a big thing. Any child who can be slotted into a regular school will be, or else, there are special ed schools if a child cannot go to a regular school.

I know at the high school my kids go to, they have some children with vision impairment and some that require extra help with their leaning, they have support staff for them.

When I went to school in the 70s & 80s, all children who were not 'normal' were put into the special school, but sometime in the last 15 years or so, integration has become the key word.


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## Lyris

Sorry, I think I'm misunderstanding, or maybe it's a language thing.

When I say early intervention goes to 7, I mean the funding is available for children with autism to get extra help, ie, an aid staff member at preschool, access to social skills and language skills groups, ongoing testing and assessment, things like that. 

As with all this stuff though, sometimes schools and organisations will talk the talk but not walk the walk. Parents have to be tireless advocates and researchers to get the right help for their children.


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## sandc

To whomever removed that rant, THANK YOU!


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## Bellavista

TBH sandc, I feel like ranting about my son right now. It honestly feels like 1 step forward followed quickly by 3 steps backwards. I am at the point of being too scared to hope he will ever improve enough to live on his own successfully because I will only be let down.

He can say all of the right things to appear mature and together, but his actions say something completely different. Oh well, such is life with an ASD son who seems determined to screw everything he does up.


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## sandc

Bella, that's nowhere near the rant that was posted and I assumed reported to the mods and deleted. It was a sickening post. I'm glad it's gone.

We are in the same position. My son doesn't do or say the right things though. We have a 21 year old man living with us who has the mentality of a 13 year old. Makes poor decisions and shows no signs of ever being able to live independently. We're not giving up though. We're looking for the right group home situation. Problem is, most of them don't want autistics.


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## Coffee Amore

I reported it but I know others did as well. Bella, your rant is nothing like that. In a thread meant to raise awareness and bring some compassion to people who have autism, this person who posted said that autistic people should have been aborted and that she hates her autistic sister. A lot of other gems like that were in the post.


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## Coffee Amore

sandc said:


> We are in the same position. My son doesn't do or say the right things though. We have a 21 year old man living with us who has the mentality of a 13 year old. Makes poor decisions and shows no signs of ever being able to live independently. We're not giving up though. We're looking for the right group home situation. Problem is, most of them don't want autistics.


Perhaps creating such a group home of your own might be an idea....


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## sandc

Coffee Amore said:


> Perhaps creating such a group home of your own might be an idea....


Sure! Come on out and help! 

We've toyed with the idea and haven't abandoned it but we are so wiped out we're not sure we could. We're not even sure how to start.


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## Coffee Amore

That's true..it's easier said than done. Are there other families with children around your son's age who are also on the spectrum? Maybe you could put together a building committee. A friend of mine built a home next door for her son who has a genetic disorder. It's staffed by people 24/7 who watch over him. He's cognitively affected and also blind/deaf. I'll PM you the info.

I know this is not really an option, but a family friend of ours who are from Manila are thinking of moving back from where they came. They're well to do Filipinos. They said it was cheaper and easier to find someone to watch over their ASD son over there since domestic help is more affordable.


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## sandc

And we just moved my MIL from Manila to live here with us!


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## Bellavista

Coffee Amore said:


> I reported it but I know others did as well. Bella, your rant is nothing like that. In a thread meant to raise awareness and bring some compassion to people who have autism, this person who posted said that autistic people should have been aborted and that she hates her autistic sister. A lot of other gems like that were in the post.


Well it sounds like it was an unwarranted rage.


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## Deejo

My boy is 11 years old. PDDNOS, ADHD, Language Delay.

Ex and I have it very, very easy in contrast to others. He is a wonderful boy. He has improved leaps and bounds, socially and cognitively over the last 3 years. Executive function continues to be very, very challenging, and makes the prospect of living independently look monumental from where we are now, but if you were to tell me 3 years ago that at age 11 my son would be conversational, I would have been skeptical.

My ex is working on the advocacy side. She is a life coach to young adults with ASD, primarily Aspergers. 

She oftens cites that everyone seems 'concerned' at the rates that children are being diagnosed with autism ... yet nobody seems to be able to see beyond childhood.

There is NO system in place to approach handling those children who will eventually be adults. It's as if people somehow have convinced themselves that autism goes away.

Bless you all.


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## Bellavista

I only wish it went away Deejo.


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## Deejo

This will be my son's second year. He loves it. Saw this on Yahoo this morning.

Watch how a pro surfer inspires autistic kids to smile


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## Coffee Amore

Deejo - To what do you attribute your son's great improvements? 

Surfing is a great way to connect with SN kids. There are organizations near coastal communities who take special needs kids on surf outings. Thanks for the link.


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## Deejo

Coffee Amore said:


> Deejo - To what do you attribute your son's great improvements?
> 
> Surfing is a great way to connect with SN kids. There are organizations near coastal communities who take special needs kids on surf outings. Thanks for the link.


Improvement always seems such a relative term when talking about spectrum kids. 
Melt downs are a rarity for him now. The fact that he can recover on his own, my ex and I see as enormous. It used to be what we called the loop, and it used to take a minimum of an hour to get out of the loop.

I attribute lots of things. Despite being divorced, his mom and I co-parent very well. We are very dialed in to our children.
His school program has served him incredibly well. At the beginning of this year, he was struggling they recommended what they call the 'Steps' program and he has made great progress as a result. 

He receives therapy from a specialist once a week. He loves it, he thinks he is going to play, all the while his therapist is teaching him about social interaction, cues, and executive function. His therapist is an amazing woman.

Ex and I refer to our son, and others like him as 'gap kids' because of where they are on the spectrum. They really can't function independently in an integrated classroom, but most certainly don't require the same interventions as severely autistic children. 

His primary issue at this point is executive function. He can't string out multiple possibilities and outcomes, or multi-stepped processes with multiple potential outcomes. For example, sports. He can't work out the details of what should happen if a ground ball is hit to him at short stop, and there are runners on first base and third base. Or playing soccer and being able to 'see the field'.
He is linear. Track, swimming, tennis, bowling, golf. These are the sports he can comprehend and loves. He loves dancing, and he's actually really, really good at it. Multiple moves, but ... it is still rote and linear.

He's funny. Doesn't know he's funny, but he is hilarious. He can be empathetic, thoughtful, and very loving. That is why I say that my ex and I are very fortunate.

Honestly, I don't know how much of his improvement can be attributed to the interventions we have put in place, versus it's just who he is as he ages. He's 11. On the social, behavioral scale, he is more like 8.

I love him dearly.


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## richie33

Thanks for sharing that Deejo. 
From what I have learned about autism in the short time since my son has been diagnosed is no two kids on the spectrum are really alike. My son will be 3 in September ,he hates the pool, is very affectionate. He is a amazing at spelling and a genius on the ipad. But will not throw a ball or kick one. We have such great ABA teachers and we have seen great improvements. We still have not found a seat for him in a school setting for September but will continue to look. As a father my hurt is a little different than my wife's hurt. But I really believe I became a better father when I heard the diagnosis. It's really good to have others share their stories on here.


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## mablenc

Im glad I missed that rant. It's hard, but I would not wish my child would be diffrent. He's taught me so much. He's such a unique and shiny person who lights up your heart if you let him. He was so happy at the grocery store today, it amazes me how he can just feel do much happiness from the slightest thing. Like to remember the hallow sound a coconut made as it fell. He remembered that today and made perfect imitating noises of the recalled event. He giggled so much he could barley speak which makes it funnier.

I live for these moments


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