# Autism Monster Bar and Grill



## sandc

You have so many hopes and dreams when you hold a newborn...

I have 21 year old son with Autism. He functions and reasons on about the level of a 12 year old. He's always had anger and rage issues. I've come home from work countless times to find my wife crying because of his rage, because he'd physically hurt himself or her. Yesterday was no exception. He gives us glimmers of who he can be and just when we think there is hope the angry rage monster shows up again. He can't be reasoned with when he's like that. He can't be niced out of it. 

I really don't know what the purpose of this thread is or should be. Other than to offer support for others who deal with the Autism monster every day. Some come on up to the bar, sit down and I'll pour you a drink. I dont' know if I can help, but I can listen. And when you talk... you know... that I know where you're coming from because I still live there. That's where I go at the end of the day when I close the bar.

Cheers.


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## sandc




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## Deejo

Ex and I know full well that we have it very easy compared to most other parents with children on the spectrum.

Our boy is PDDNOS. Whether it is a credit to us and how we have dealt with the issues and coached our son, or a credit to him and his ability to see past the things he used to get stuck on, he has come a very long way.
He has never been a behavioral issue with regard to acting out, rage, or violence. He withdraws. He retreats to an inner world or shuts down. He still occasionally melts down and as you said, there are no options other than riding it out.

Last weekend I rented the movie 'Turbo' about the snail who dreams of going fast and racing.

We're sitting on the couch, my boy is leaning into me and says, "I think Turbo has autism."
I asked him what made him say that?
"Because he has big dreams, nobody else sees them and they are mean to him."

No doubt he was referring to Turbo's imagination, where he saw himself as fast, and everyone kept telling him he can't do those things because he ISN'T fast. My son has a brilliant active, inner world. He 'scripts' all of the time. Scripting is effectively how he soothes himself. It's predictable. It's certain, because he can steer the outcome. I asked him if he felt like Turbo? 
"Yeah."
I asked if people were sometimes mean to him and was he aware of it?
"Yeah. I don't want to talk about it. Can we just watch the movie?"

I asked him if he wanted a drink because I needed to get up and regain my composure.


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## sandc

Yeah, my son is blessed with oblivion. People do get mad at him and tease him but most of the time he doesn't notice it. If someone outside yells at him or calls him retarded he just laughs. Part of the miswiring in his head. He finds anger to be funny... unless it's from me. It hurts my wife and daughter to see people treat him like that, they are his fierce protectors. I just tell them he has to learn how to deal with people on his own.

It's good your son can express his feelings. My son has very little expressive language. He usually only communicates to convey his needs. Usually only to ask what's for dinner or where are we going. Other than that he's almost completely non-verbal. Usually off in his own world.


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## Starstarfish

Thanks for opening this post. I'll pull up to the bar. 

My son is three, and is on the spectrum with SPD. But because he's very outgoing and talkative and smart for his age (he's already reading) outsiders don't really realize there's anything wrong. I get their judgmental stares and comments because they assume there's no good reason I need to do certain things that another child his age wouldn't need. 

They don't see the struggles behind closed doors to do basic things like - get him dressed because any item of clothing is "touching him wrong" and the kicking and flailing about his winter coat (we live in Wisconsin, and this week it's been in the teen degrees, so this isn't optional) because it's choking him. That giving him a hug isn't a given, because often times he's not interested because my "hair is getting all over him" and "stop your hair is going to choke me."

Yes I realize you find the idea of the backpack leash cruel random person in Trader Joes, but it isn't because I'm a lazy mom, it's because I know his behaviors. That I know that he has triggers other children don't have, and that I need to keep him safe. 

That others don't see the struggle to the progress to the point we are at, they just see the outcome. For example, when my son was younger, he'd get so upset if we went to the bathroom and someone turned on the hair dryer he'd work himself up until he puked. He is now able to use the hair dryer himself without this trigger, but unknown sounds still unduly bother him. But this is still a big step. 

That he had to eat baby food long after would otherwise be the "normal" progression, because otherwise he threw up because of texture problems. That he refused to chew, but just swallowed everything whole. That yes he is "a bit old for that" - but him eating baby food with a side of cereal, and chewing the cereal pieces is a big improvement. That getting him potty trained when he "didn't want anything touching his butt" was a big thing. 

I don't want applause or accolades, I just want to stop feeling shamed. That I don't need comments about he'd be fine if I'd have breastfed him longer, or the question "does it run in the family?" Or comments by mothers of multiples about how if I had more children, he'd stop being "so self-centered as an only" and how they can't figure out how I'm more tired with one than they are with five.


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## sandc

As they say at Burning Man.... welcome home Starstarfish! (((hug)))

My son would stop and drop and start banging his head on the ground when he was upset about something. One time it was the glass windows in a restaurant vibrating. It was barely noticeable but it was all he could see.

We did have one child after our son, even though we swore we'd need another mommy and daddy if we had another baby. She was all sweetness and light and at 16 yo she is now her 21 yo brother's fiercest protector.

We went through the whole "he just needs discipline" thing from other people. Everyone is a judge and a critic to our parenting styles. Meh. You won't find that in my bar. Here, have a tall glass of acceptance.


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## sandc

Well, the autism monster apparently left us an easter egg from his last visit. My son's right jaw is swelling and it hurts to open his mouth. I'm thinking he hit himself so hard during his last outburst that he dislocated it. Caramel is taking him to ER to have them take a look and see what's going on there. So now he gets angry when he tries to eat and his jaw hurts. We can't make him understand that when he damages his body... it hurts!


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## mablenc

I'm sorry to hear that, I hope he gets better soon. My son hits himself if he hurts himself by accident. It's painful to watch.
_Posted via Mobile Device_


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## LadyDee

sandc, I am so new at this as a grandmother, just got the diagnosis that one of our grandchildren 2 1/2 little boy has autism... that's about all we know for now. Just beginning this journey.

Sorry to hear about your son, hope he is better soon.


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## sandc

mablenc said:


> I'm sorry to hear that, I hope he gets better soon. My son hits himself if he hurts himself by accident. It's painful to watch.
> _Posted via Mobile Device_


Another beautiful woman with an angry autistic son. Caramel and I have always said that our son is God's way of keeping us from getting into trouble.


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## sandc

LadyDee said:


> sandc, I am so new at this as a grandmother, just got the diagnosis that one of our grandchildren 2 1/2 little boy has autism... that's about all we know for now. Just beginning this journey.
> 
> Sorry to hear about your son, hope he is better soon.


I won't say it's an easy journey but it can be done. It's a lot like ending up in Holland when you thought you were going to France. Not bad, just different with a beauty all it's own. Your kids will need a lot of encouragement and support from you as they try to deal with your grandson. Providing them with respite will be one of the greatest gifts you can give them, if you are capable of doing so.


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## Deejo

My ex has the 'Welcome to Holland' story framed and hanging on her wall.


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## mablenc

sandc said:


> Another beautiful woman with an angry autistic son. Caramel and I have always said that our son is God's way of keeping us from getting into trouble.


I joke and say that god looked at me and said "she looks bored"

In reality I think Mable Jr picked us as his parents, I would not change him for anything. He's mostly happy, and bouncy, but that can change on a dime. He hitting has decreased as his nose started to bleed after hitting himself and it scared the daylights out of him (and us). Blessing in disguise.
_Posted via Mobile Device_


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## sandc

We know he really was a blessing from God but right now it's hard to see. He has been particularly angry this past week. He broke a cabinet door and we had to take him to ER because we thought he hit himself so hard that he dislocated his jaw. 

This Christmas is bittersweet for us because it may be the last Christmas he spends at home. If the anger does not decrease then for the sake of everyone else in the family I may have to put him in a facility that can handle him.

This just sucks so much, here I am a deacon in my church and I can't handle my own sun. How am I supposed to lead anyone else? Feeling so, so discouraged right now.

Lord, you are strongest in our weaknesses, glorify yourself and show me your strength.


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## Deejo

My ex-wife and I were married by a very good friend of mine that entered the ministry. He has worked with troubled kids all of his life. A very long time ago, I worked in one of his programs.

This of course is years ago, but I will never forget it. Heather, my ex, was talking to him about our son's diagnosis. She was crying and wondering why this had happened to us, and to our little boy.

He smiled at her and said, "Honey, you've got this all wrong. That little boy was going to be born. And he was born to the two of you. This isn't about you being unlucky. Stop and think for a moment how lucky he is, that he ended up with the two of you as his parents to love him."

Those words left a very big impression. Wish you the best sandc. Do what is best for your family, and best for your son. Your most fortunate son, to have you as his father.


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## sandc

Thanks. I'm really of the same opinion as your friend in the ministry. God doesn't make mistakes and he's got everything planned. We just go through down times. In this case, a very down time. I very much appreciate the encouragement. Thank you.


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## LanieB

So sorry, S. I know this is so hard to go through. I can't even imagine it. We all have big dreams for our kids, but sometimes things just don't work out the way we planned. But I know you and C are great parents to your son, and you will make the best decision for him and for you.


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## sandc

Thanks Lanie.


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## richie33

Our son is three we have been lucky to have been given all the help since he was diagnosed PDDNOS at 18 months. He is in PreK with 7 other children on the spectrum. He never played with toys until he went to school. No matter how much we tried and ABA teachers tried he would just fling his toys. Now he is actually playing with them. Being around other children has really helped. He still hits a lot but it's not out of anger, just frustration cause he is a very sweet boy.Loves to be hugged and kissed.
The most frustration I get is from family members who see him once every two or three months for maybe a hour and question his diagnosis. That gets annoying. I am sorry but if my brother or sister told me their child had a disability I would research the hell out of it. But take for example my mother in law....in her sixties, doesn't work, has nothing but time on her hands, sits playing around on Facebook all day but still knows nothing about autism. It's a little disrespectful if you ask me. Sorry for the rant but that's what the bar is for. FTW.


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## SlowlyGettingWiser

sandc said:


> This just sucks so much, here I am a deacon in my church and I can't handle my own sun. How am I supposed to lead anyone else? Feeling so, so discouraged right now.


You *ARE* leading, S! And so is C! 

You do it every hour of every day by CONTINUALLY, patiently, endlessly working with, helping, loving your family through good times and bad for 21 YEARS!

If you have to put your son in a facility, it is because *that* is what is BEST for him, your daughter, your wife, and yourself. It's not just 'disposing' of him because it's difficult or tiring dealing with him. If that were the case, you two would have institutionalized him 21 years ago...but you didn't!

You two WALK THE WALK, you don't talk the talk!

'Though I speak with the tongues of men and of angels, and have not charity, I am become as sounding brass, or a tinkling cymbal.' [1 Corinthians 13:1]

The fact that you have opened this thread is just MORE PROOF that you already possess what you need to "lead others". Ditto for C.


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## sandc

richie33 said:


> Our son is three we have been lucky to have been given all the help since he was diagnosed PDDNOS at 18 months. He is in PreK with 7 other children on the spectrum. He never played with toys until he went to school. No matter how much we tried and ABA teachers tried he would just fling his toys. Now he is actually playing with them. Being around other children has really helped. He still hits a lot but it's not out of anger, just frustration cause he is a very sweet boy.Loves to be hugged and kissed.
> The most frustration I get is from family members who see him once every two or three months for maybe a hour and question his diagnosis. That gets annoying. I am sorry but if my brother or sister told me their child had a disability I would research the hell out of it. But take for example my mother in law....in her sixties, doesn't work, has nothing but time on her hands, sits playing around on Facebook all day but still knows nothing about autism. It's a little disrespectful if you ask me. Sorry for the rant but that's what the bar is for. FTW.


That IS what this bar is for! Rant away! :smthumbup:

We have at least 3 boys in my close family that are on the spectrum, my father still insists it's lack of discipline. 

It sounds like you have a wonderful support system. We did too when our son was younger, but that was in the early days of early autism intervention. We were always on the cutting edge in our area. Now he is 21 and entering adulthood and we are back on the cutting edge because there is no infrastructure in place for these kids as they grow up.


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## sandc

SlowlyGettingWiser said:


> You *ARE* leading, S! And so is C!
> 
> You do it every hour of every day by CONTINUALLY, patiently, endlessly working with, helping, loving your family through good times and bad for 21 YEARS!
> 
> If you have to put your son in a facility, it is because *that* is what is BEST for him, your daughter, your wife, and yourself. It's not just 'disposing' of him because it's difficult or tiring dealing with him. If that were the case, you two would have institutionalized him 21 years ago...but you didn't!
> 
> You two WALK THE WALK, you don't talk the talk!
> 
> 'Though I speak with the tongues of men and of angels, and have not charity, I am become as sounding brass, or a tinkling cymbal.' [1 Corinthians 13:1]
> 
> The fact that you have opened this thread is just MORE PROOF that you already possess what you need to "lead others". Ditto for C.


God love you SGW. If you were here I'd hug you so tight your stuffing might come out. 

I know leadership is more than just walking in the front of the line and pointing the way. Many times it involves loneliness and making some REALLY tough decisions. In fact, my pastor gave me a book for Christmas called, "Leading with a Limp: Take Full Advantage of Your Most Powerful Weakness"

The times like these I cling to these verses




2 Corinthians Chapter 12 said:


> * 8 Concerning this thing I pleaded with the Lord three times that it might depart from me. 9 And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. 10 Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong.*


May God richly bless all those called upon to minister to those among us who need the most help. And may God even more richly bless those who are called to minister to the ministers. Merry Christmas, SGW!


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## mablenc

That's a good point Mrs. Adams, we even had a parasite cleanse (candida falls into that category) we did see good results, 9 years of constipation disappeared.
_Posted via Mobile Device_


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## mablenc

Funny not so funny story. My son liked sponge bob and likes watching YouTube. Well some idiot changed a clip to where sponge bob is making alphabet soup and they changed the words to Fck you. We were at the store and he said he wanted alphabet soup. The cashier said "are you going to eat soup. My son in the sweetest voice said "fck you". I wanted to die, I felt so crummy too as my son has no idea what that means. We talked about bad words, but lord help me.
_Posted via Mobile Device_


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## sandc

I'm sorry Mable but....










I know you wanted to die but that is hillarious! You know, we should get all the autistic parents together to contribute anecdotes about life with autism. It would probably give all autistic parents a laugh.

With apologies to the Spanish proverb:

Mal de muchos, la risa de algunos.

I don't speak Spanish, it was the best I could do. I'm trying to say, "at the misfortunes of others, some laugh." 

At let's face it. Some times you have to just stop and laugh at some of the ludicrous situations we find ourselves in as parents of autistic children.


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## Lon

Deejo said:


> Ex and I know full well that we have it very easy compared to most other parents with children on the spectrum.
> 
> Our boy is PDDNOS. Whether it is a credit to us and how we have dealt with the issues and coached our son, or a credit to him and his ability to see past the things he used to get stuck on, he has come a very long way.
> He has never been a behavioral issue with regard to acting out, rage, or violence. He withdraws. He retreats to an inner world or shuts down. He still occasionally melts down and as you said, there are no options other than riding it out.
> 
> Last weekend I rented the movie 'Turbo' about the snail who dreams of going fast and racing.
> 
> We're sitting on the couch, my boy is leaning into me and says, "I think Turbo has autism."
> I asked him what made him say that?
> "Because he has big dreams, nobody else sees them and they are mean to him."
> 
> No doubt he was referring to Turbo's imagination, where he saw himself as fast, and everyone kept telling him he can't do those things because he ISN'T fast. My son has a brilliant active, inner world. He 'scripts' all of the time. Scripting is effectively how he soothes himself. It's predictable. It's certain, because he can steer the outcome. I asked him if he felt like Turbo?
> "Yeah."
> I asked if people were sometimes mean to him and was he aware of it?
> "Yeah. I don't want to talk about it. Can we just watch the movie?"
> 
> I asked him if he wanted a drink because I needed to get up and regain my composure.


I am awaiting an appointment with my son's school psychologist, my soon to be 7 year old is certainly on the spectrum - and he too loved that Turbo movie Deejo, like your son (and myself) he has a deep inner world where the scripting is intricate and compelling to him. And when reality doesn't match the scripting he gets so frustrated and retreats or else lashes out (and it breaks my heart to see sometimes). Thankfully he has a father that is/was like him and has mostly succeeded and who will hopefully guide him through or atleast support him all along. It is emotionally and mentally hard work though, especially when divorce has been such a defining aspect of both (mine and my son's) our lives.

I have had a few conversations where he doesn't want to elaborate on why "all the people are mean" to him and wants to just escape in the movie we are watching or game he is playing with his toys.

Part of what has been so hard is just getting to the bottom of what the real issue is. It is nothing obvious to anyone but those who get to know him well - some days he is a fun, happy energetic boy and others he is shy withdrawn and angry. It has been so hard to figure out why he is so non-compliant and so difficult, inherited, parenting, environmental? I am hoping that the "experts" have come up with an appropriate assessment and that we can provide him with some useful resources...


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## Deejo

You pretty well described my boy Lon. I keep wondering how this all ultimately gets addressed. 

I have wondered at times if spectrum disorders are generational. 

I was diagnosed with ADHD. My son with ADHD and PDDNOS. I have a sibling also diagnosed with ADHD and it is very likely that his 3 yr old has issues as well. My 7 yr old daughter has 2 ASD kids in her class. My son is in a class of 11, most of which are spectrum kids.

I still find it staggering that people continue to treat this issue like sticking fingers in a leaky dike, while ignoring the fact that the water continues to rise.


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## mablenc

sandc said:


> I'm sorry Mable but....
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> I know you wanted to die but that is hillarious! You know, we should get all the autistic parents together to contribute anecdotes about life with autism. It would probably give all autistic parents a laugh.
> 
> With apologies to the Spanish proverb:
> 
> Mal de muchos, la risa de algunos.
> 
> I don't speak Spanish, it was the best I could do. I'm trying to say, "at the misfortunes of others, some laugh."
> 
> At let's face it. Some times you have to just stop and laugh at some of the ludicrous situations we find ourselves in as parents of autistic children.


thanks its funnier now.
And thank you, I just saw your signature.


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## sandc

Deejo said:


> You pretty well described my boy Lon. I keep wondering how this all ultimately gets addressed.
> 
> I have wondered at times if spectrum disorders are generational.
> 
> I was diagnosed with ADHD. My son with ADHD and PDDNOS. I have a sibling also diagnosed with ADHD and it is very likely that his 3 yr old has issues as well. My 7 yr old daughter has 2 ASD kids in her class. My son is in a class of 11, most of which are spectrum kids.
> 
> I still find it staggering that people continue to treat this issue like sticking fingers in a leaky dike, while ignoring the fact that the water continues to rise.


And what's more, speaking as the parent of a 21 year old autistic man, there's no place for these kids to go once their grown. No support system, no infrastructure. Plenty of options for Down Syndrome kids, but nothing for Autistics.


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## sandc

mablenc said:


> thanks its funnier now.
> And thank you, I just saw your signature.


I'll change it if it makes you uncomfortable.


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## rush

What is the difference between adhd and aspergers? How are they tested?


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## mablenc

rush said:


> What is the difference between adhd and aspergers? How are they tested?


ADHD is a problem with focusing and attention span, as well as being hyper. Aspergers is a form of autism, therefore the trouble is not focusing it's more of struggling with the social things, as well as to being more of a routine person. The interest for aspergers people are different and everything is taken in a literal way.

However; you can have both. My son does, so I have a bouncy hyper kid with poor social skills and lots of brains. 
_Posted via Mobile Device_


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## mablenc

sandc said:


> I'll change it if it makes you uncomfortable.


No need to hide the truth 
_Posted via Mobile Device_


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## rush

mablenc said:


> ADHD is a problem with focusing and attention span, as well as being hyper. Aspergers is a form of autism, therefore the trouble is not focusing it's more of struggling with the social things, as well as to being more of a routine person. The interest for aspergers people are different and everything is taken in a literal way.
> 
> However; you can have both. My son does, so I have a bouncy hyper kid with poor social skills and lots of brains.
> _Posted via Mobile Device_


My son was tested and diagnosed with add several years ago, but after the years pass and I read about aspergers he fits it pretty well, worries me a lot


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## Deejo

*Re: Re: Autism Monster Bar and Grill*



sandc said:


> And what's more, speaking as the parent of a 21 year old autistic man, there's no place for these kids to go once their grown. No support system, no infrastructure. Plenty of options for Down Syndrome kids, but nothing for Autistics.


This has become my ex-wife's crusade. She is looking to expand her role working as a life coach for young Aspergers adults.


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## larry.gray

mablenc said:


> ADHD is a problem with focusing and attention span, as well as being hyper. Aspergers is a form of autism, therefore the trouble is not focusing it's more of struggling with the social things, as well as to being more of a routine person. The interest for aspergers people are different and everything is taken in a literal way.


Watch the show Big Bang Theory. The producers deny the connection, but much of the way Sheldon behaves can be ascribed to Aspergers.

I'll add that not only do they take things in a literal way, but they also tend to not let things go. As an example, if their teacher tells them "You can't go out to lunch until you answer a problem." They will think "My teacher said I can't have lunch." They then won't let go of it. "Teacher said I can't have lunch." Is all they will hear, and all they will remember for hours no matter how hard one tries to explain it to them.



mablenc said:


> However; you can have both. My son does, so I have a bouncy hyper kid with poor social skills and lots of brains.
> _Posted via Mobile Device_


I don't know if it is a matter of having both, or the fact that Aspergers is mis-diagnosed for ADHD.


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## larry.gray

rush said:


> My son was tested and diagnosed with add several years ago, but after the years pass and I read about aspergers he fits it pretty well, worries me a lot


You should be relived that he's finally getting real help. 

You should also understand that unless it's severe, Aspergers is not a catastrophic diagnosis. Plenty of highly functional people lead productive lives with Aspergers. 

I've heard that 25% of engineers, 25% of accountants, 35% of university researchers and 40% of computer programmers have Aspergers. Being around all of those people, I'm willing to believe those statistics. Much of what people ascribe to being "A socially awkward nerd" is more just another person with Aspergers.


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## rush

He is not getting much help, he has some special classes at school with some help, tried medications and they were a disaster, I stopped them as they made him worse. He just stays in his room at home, comes out to eat and school. He does go camping in the summer which he likes. No friends, no socialization. Breaks my heart


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## mablenc

larry.gray said:


> Watch the show Big Bang Theory. The producers deny the connection, but much of the way Sheldon behaves can be ascribed to Aspergers.
> 
> I'll add that not only do they take things in a literal way, but they also tend to not let things go. As an example, if their teacher tells them "You can't go out to lunch until you answer a problem." They will think "My teacher said I can't have lunch." They then won't let go of it. "Teacher said I can't have lunch." Is all they will hear, and all they will remember for hours no matter how hard one tries to explain it to them.
> 
> 
> 
> I don't know if it is a matter of having both, or the fact that Aspergers is mis-diagnosed for ADHD.


I think it's a big mistake not admitting that Sheldon has aspergers he acts perfectly like an adult with it. I think I would help adults that were never diagnosed and i see it as a glimps to the future.

With my son once we got his autism under control, The ADHD became more obvious and its something we are focusing on now.

I think that, this is what I have seen. Kids with aspergers will show above average intellectual abilities as with autism there are miss connections that rewire the brain. While kids I have seen with add and ADHD can be very smart but, not as gifted. This is what I have seen, I'm not saying its how it really is.


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## mablenc

rush said:


> He is not getting much help, he has some special classes at school with some help, tried medications and they were a disaster, I stopped them as they made him worse. He just stays in his room at home, comes out to eat and school. He does go camping in the summer which he likes. No friends, no socialization. Breaks my heart


One major factor with aspergers is the socalization. My son likes to socialize, which is not common. However, he has no clue how to do it. You have to teach him how to respond when someone asks how he is doing. 

He also lacks empathy. I hurt myself trying to open a coconut, (it rolled away and I hammered my finger :rofl

I has holding my hand and crying and he was mad because he wanted coconut. 

I ended up driving myself to the urgent clinic all the way there he was upset that I didn't open the coconut.

He's starting to ask "what's wrong" if he sees me crying but that's as far as it will go. He's also now recognizing mommys mad face. 

But, theses are things babies cue into naturally.

Mike, I would read up on aspergers and find a doctor that specializes in autism to give you a diagnosis. 

We found a great neurologist that only works with autism and ADHD. Some doctors were terrible and clueless.

One thing I will say is that we make it a goal for the home to be an oasis for him. That no matter how bad his day was he can know he can come home to a place where he is loved unconditionally.


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## rush

You are right mable, need to find someone good for him. This home is his too, but he never comes out of his room, he watches youtube and video games all day. Thanks for your input.


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## mablenc

rush said:


> You are right mable, need to find someone good for him. This home is his too, but he never comes out of his room, he watches youtube and video games all day. Thanks for your input.


Feel free to pm me if you have questions, I'm sure Sandc and Drerio feel the same.
_Posted via Mobile Device_


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## rush

My wife just like denies any problem but we are not going to live forever.


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## mablenc

rush said:


> My wife just like denies any problem but we are not going to live forever.


That's the scariest thing to face, that you don't. Which is why you need to give him all the skills he needs to survive on his own or make arrangements for life after you.
_Posted via Mobile Device_


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## rush

I think about it every day...


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## sandc

That's my biggest concern. Find a place for my son to live. It's not like I want him gone, I just want to know that he can live without us. I know his sister would help out but I don't want to burden her with caring for her brother. 

I'm glad Deejo's wife is cruscading for adult autism options. Because right now, they don't have many.

Speaking of aspererger's, I had an aspie working for me for a while. It was a computer operator job and he loved it, do the same thing at the same time every day, if there is a variance call me. He did incredibly well with it. His thing was Lord of the Rings. He had all of the books including the Silmarillion memorized. Once he started talking about it you couldn't get him to stop. You literally had to say, hey Dave, you need to stop talking now. Which he would say, okay, and walk away. Not offended in the least. He appreciated me telling him when to stop.


----------



## mablenc

Just a funny thing about my son, he calls his shirt the numerator and his sweater the denominator.


----------



## sandc

mablenc said:


> Just a funny thing about my son, he calls his shirt the numerator and his sweater the denominator.


:lol: Tell him his belt is the vinculum.


----------



## mablenc

I don't know if I have shared this me he calls me Chinese mom and he says he is Chinese.

See about two years ago I explained that China is 12 hours ahead of us. My husband was traveling to China. 
I went further and said, when you are going to bed they are getting up and getting ready for school. He seems to think that the kids do everything he does, to the point of having the same things and piano class the same day. So when he doesn't want to do something he will ask what the Chinese kids are doing.

One time I was not letting him do something he really wanted to do so he tells me "What's mad Chinese mommy doing?" :rofl:


----------



## sandc

Too funny! My wife is 1/8 Chinese, what percentage are you? :rofl:

My son has no concept of ethnicity or other countries so we're good there. He does know there is a Mexico because Mommy and Daddy went there on vacation and spoke "Mexican". 

My daughter asked me one day what she should check when they ask her what race she is. I told her to check them all.


----------



## mablenc

sandc said:


> Too funny! My wife is 1/8 Chinese, what percentage are you? :rofl:
> 
> My son has no concept of ethnicity or other countries so we're good there. He does know there is a Mexico because Mommy and Daddy went there on vacation and spoke "Mexican".
> 
> My daughter asked me one day what she should check when they ask her what race she is. I told her to check them all.


You've seen me, I get odd looks when my son calls me Chinese mommy. :rofl:

He only says it when he wants to do something else. He thinks its like a parallel universe.


----------



## Plan 9 from OS

I guess I should check in. I have 3 kids, and my oldest is either high functioning autistic or aspergers. He's received both diagnoses when we've taken him for evaluation. I guess it's most accurate to describe him as having aspergers based on the traits you read about with both. However, our son is not college bound material. He has the brain, he can't consistently apply it. To add to this, he has tourettes syndrome too, but I believe this is largely anxiety based and these will mostly subside once he's older (he'll be 17 in a few months).

The things I notice now in him that is frustrating:

He tries to mooch off of others way too much - especially adults
He can be perfectly fine socially if he self monitors. However, if the lets himself "be himself", he's very annoying plus rude and offensive.
He doesn't really have any good friends, mostly because he has trouble being a friend.
He can do school work, but he's so lazy that he gets his teachers to spoon feed him on occasion. We don't do that for him at home, or at least I don't.
Immature, and he has to try to be funny all the time. He'll even ask us "am I funny?". Fvck, he's been asking this same question since he was 3 years old...
The moment he does't get his way, he throws little temper tantrums. These are verbal outbursts where he's yelling. He's not really physical anymore. He was when he was younger but not nearly as much now.

Knock on wood, he's made HUGE strides in maturity, but he has a long way to go. He won't be able to live on his own right after highschool. We think he'll be able to once he's in his early 20s. It's rough, and maybe when we parent him we don't do it the right way. But what we've been doing lately is to refuse to let him ever use his autism/aspergers as a crutch. We force him to act and behave as normal as possible. In a number of ways, it made him drop some of the more classic autism type of behaviors. But there are still enough things he does that we still have a long road ahead yet.


----------



## mablenc

Plan 9 from OS said:


> I guess I should check in. I have 3 kids, and my oldest is either high functioning autistic or aspergers. He's received both diagnoses when we've taken him for evaluation. I guess it's most accurate to describe him as having aspergers based on the traits you read about with both. However, our son is not college bound material. He has the brain, he can't consistently apply it. To add to this, he has tourettes syndrome too, but I believe this is largely anxiety based and these will mostly subside once he's older (he'll be 17 in a few months).
> 
> The things I notice now in him that is frustrating:
> 
> He tries to mooch off of others way too much - especially adults
> He can be perfectly fine socially if he self monitors. However, if the lets himself "be himself", he's very annoying plus rude and offensive.
> He doesn't really have any good friends, mostly because he has trouble being a friend.
> He can do school work, but he's so lazy that he gets his teachers to spoon feed him on occasion. We don't do that for him at home, or at least I don't.
> Immature, and he has to try to be funny all the time. He'll even ask us "am I funny?". Fvck, he's been asking this same question since he was 3 years old...
> The moment he does't get his way, he throws little temper tantrums. These are verbal outbursts where he's yelling. He's not really physical anymore. He was when he was younger but not nearly as much now.
> 
> Knock on wood, he's made HUGE strides in maturity, but he has a long way to go. He won't be able to live on his own right after highschool. We think he'll be able to once he's in his early 20s. It's rough, and maybe when we parent him we don't do it the right way. But what we've been doing lately is to refuse to let him ever use his autism/aspergers as a crutch. We force him to act and behave as normal as possible. In a number of ways, it made him drop some of the more classic autism type of behaviors. But there are still enough things he does that we still have a long road ahead yet.


Hugs, glad you posted. 

Funny thing about my son is that the kids love him, they follow him around and he could careless. I worry about the day the kids get tired of his indifference.
_Posted via Mobile Device_


----------



## Plan 9 from OS

mablenc said:


> Hugs, glad you posted.
> 
> Funny thing about my son is that the kids love him, they follow him around and he could careless. I worry about the day the kids get tired of his indifference.
> _Posted via Mobile Device_


Yeah. My son used to have more kids wanting to play with him and what not. He didn't want it at the time, they moved on and now he wants friends. But he pushed everyone away. He's a Jr and he's in vo-tech school, so it's a new place for him. Maybe he'll develop those friendships now. I'm cautiously optimistic but won't be surprised if it doesn't happen until he's an adult.

Funny thing is he craves to be around older people. He loves that and he's quite engaging with them. When it comes to kids his age, he want's friends but he also thinks that they can do stupid things at times, which really gets under his skin. It's a strange dynamic.


----------



## sandc

My wife isn't like the other girls. Instead of a shopping list I found this list on the fridge...
IV
Flea bath
Group home

Just another day.


----------



## Lon

*Re: Re: Autism Monster Bar and Grill*



Plan 9 from OS said:


> I guess I should check in. I have 3 kids, and my oldest is either high functioning autistic or aspergers. He's received both diagnoses when we've taken him for evaluation. I guess it's most accurate to describe him as having aspergers based on the traits you read about with both. However, our son is not college bound material. He has the brain, he can't consistently apply it. To add to this, he has tourettes syndrome too, but I believe this is largely anxiety based and these will mostly subside once he's older (he'll be 17 in a few months).
> 
> The things I notice now in him that is frustrating:
> 
> He tries to mooch off of others way too much - especially adults
> He can be perfectly fine socially if he self monitors. However, if the lets himself "be himself", he's very annoying plus rude and offensive.
> He doesn't really have any good friends, mostly because he has trouble being a friend.
> He can do school work, but he's so lazy that he gets his teachers to spoon feed him on occasion. We don't do that for him at home, or at least I don't.
> Immature, and he has to try to be funny all the time. He'll even ask us "am I funny?". Fvck, he's been asking this same question since he was 3 years old...
> The moment he does't get his way, he throws little temper tantrums. These are verbal outbursts where he's yelling. He's not really physical anymore. He was when he was younger but not nearly as much now.
> 
> Knock on wood, he's made HUGE strides in maturity, but he has a long way to go. He won't be able to live on his own right after highschool. We think he'll be able to once he's in his early 20s. It's rough, and maybe when we parent him we don't do it the right way. But what we've been doing lately is to refuse to let him ever use his autism/aspergers as a crutch. We force him to act and behave as normal as possible. In a number of ways, it made him drop some of the more classic autism type of behaviors. But there are still enough things he does that we still have a long road ahead yet.


Oh man reading those behaviours is a checklist of all the traits and behaviors of mine, but mine is not nearly 7. Some of these are just typical child behaviors, but when it's all of those all the time it becomes apparent that they are not traits he will be growing out of.


----------



## Bellavista

We have a 25yo son with aspergers. It is an interesting journey, he has moved back home now 3 times after failed attempts to live with other family or friends. They can't deal with him and he can't deal with them. We would like to him find a place on his own, however, I can't see it happening.

He is highly intelligent with a photographic memory and an insatiable appetite for facts, in particular, history, politics and sharks. He has little interest in sci-fi & fantasy or anything that is not based on fact.

He does on occasion drink too much alcohol, and we suspect at one stage he was smoking dope. People tell us there is nothing wrong with him as he can engage in lengthy conversations about things that interest him, however, what they don't seem to see is that he looks over the heads of people he is talking to and he is usually giving answers to questions they ask him. He does not start conversations and will continue spouting facts until the person ends the conversation.

He readily admits he cannot read body language and facial expressions. He also does not make many jokes, but he does find some things funny, in particular word play. 

I have many photos of him as a baby onwards where he is looking at the camera with a blank expression. I do have some smiling photos as he gets older, but they are rare. One of the biggest issues we have had is that he tends to lie to protect himself and he seems to believe what he says; it is like he has an alternate reality. 

I guess we do not have it hard as some, he is functional if he stays away from alcohol, bad friends and his ex-girlfriend.


----------



## Lon

*Re: Re: Autism Monster Bar and Grill*



mablenc said:


> Hugs, glad you posted.
> 
> Funny thing about my son is that the kids love him, they follow him around and he could careless. I worry about the day the kids get tired of his indifference.
> _Posted via Mobile Device_


That has been grade 1 for my son, when I bring him to school, more so at the beginning of the school year he constantly had other kids of all ages say hi and asking what he is doing, and almost every time he completely stonewalls them. Whenever I have tried to talk to him about this he says they all hate him and when I'm not around they are mean to him instead. Now it seems they have all learned to ignore him and give him distance. Even in the classroom under teacher supervision.


----------



## sandc

My son rarely speaks so hard to tell what's going on in his head. I know he likes to be around people but gets overwhelmed when they try to interact with him. Yet he's asked me if he can have a girlfriend. Most of the kids like him and accept him for what he is. But they mostly ignore him. Many times this is a good thing.

Welcome newcomers. Belly up to the bar and order a drink


----------



## southern wife

sandc said:


> *Welcome newcomers. Belly up to the bar and order a drink*


Bombay Martini with extra olives, please!


I'm just now stumbling across your thread here. I'm amazed at all these stories and can't imagine what you all go through. You're all very STRONG people/parents.....in every sense of the word! You're all doing a great job. And thank the Lord, you can all relate to one another, share your stories, and offer encouragement. *hugs to you all*

I'm here because sandc is my *TAM* friend, and he's a one-of-a-kind guy. I know you'll feel bad having to find a home for your adult son, but I hope you know that it's what is best for all of you. I just hope you find the resources you so desperately need for him.


----------



## sandc

Southern Wife, ladies and gentlemen! What a class act. Let's give her a round of applause.

:yay::yay::yay::yay::yay::yay:


----------



## southern wife

sandc said:


> Southern Wife, ladies and gentlemen! What a class act. Let's give her a round of applause.
> 
> :yay::yay::yay::yay::yay::yay:


Well, thank you, that's sweet, but I'd rather have a few rounds of Martinis!  :toast:


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## southern wife

I think all of YOU here in this thread (and in the world) that have children with such special needs and require special attention, YOU deserve the round of applause.

And the double Martinis!


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## sandc

Take your pick...heck, take them all.










On the house.


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## southern wife

sandc said:


> Take your pick...heck, take them all.
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> On the house.


I'll just take the 2 on the far right end. Mmmmmmm looks good!


----------



## Bellavista

I don't drink alcohol, can I have water on the rocks please?


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## sandc

I don't either Bella. How about a nice Italian Soda? Or some Thai iced tea?


----------



## Bellavista

I am so boring for drinks, I drink plain water, fizzy water or occasionally I go wild & have a diet coke. Never took to the iced tea or any form of hot drinks either.


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## sandc

Fizzy it iz then!

Fizzy for the Ozzie!


----------



## SlowlyGettingWiser

Just waving "hi" to everybody. Thought I'd just check in on this thread! Wish I had something good/interesting/profound/groundbreaking to offer but, alas, I do not!

You all have my admiration! I cannot fathom the depths of your individual strength! *HUGS* to all of you wonderful parents!


----------



## LadyDee

As a grandmother and so new to all this, I have been doing alot of research and have found something interesting, the MTHFR connection to autism ... from what I have read 98% of children that are autistic have a MTHFR mutation ...

I am interested if anyone else here also has made this connection and following Dr. Amy Yasko and The Methylation Cycle and if supplements, diet change etc have helped your child?


----------



## sandc

SlowlyGettingWiser said:


> Just waving "hi" to everybody. Thought I'd just check in on this thread! Wish I had something good/interesting/profound/groundbreaking to offer but, alas, I do not!
> 
> You all have my admiration! I cannot fathom the depths of your individual strength! *HUGS* to all of you wonderful parents!


*big tight bear hug* back at you!

You can still hang out at the bar. We're all probably a little whacked in here but we like normal people too.


----------



## SlowlyGettingWiser

sandc said:


> You can still hang out at the bar...*we like normal people too*.


Well, that's sure not the way to make ME feel wanted! 



:rofl::rofl:


.


----------



## sandc

SlowlyGettingWiser said:


> Well, that's sure not the way to make ME feel wanted!
> 
> 
> 
> :rofl::rofl:
> 
> 
> .


And the deliciously twisted get free drinks!

Feel more welcome?


----------



## sandc

LadyDee said:


> As a grandmother and so new to all this, I have been doing alot of research and have found something interesting, the MTHFR connection to autism ... from what I have read 98% of children that are autistic have a MTHFR mutation ...
> 
> I am interested if anyone else here also has made this connection and following Dr. Amy Yasko and The Methylation Cycle and if supplements, diet change etc have helped your child?


Sorry, I missed this post. I'll have to ask my wife about that. I can tell you my son has been on fairly strict diets his whole life. Now that he's 21 it's getting really hard to control what he eats. He does take several supplements but I would be hard pressed to tell you what they all are. I'll see if I can get my wife to post some info.


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## sandc

Well, we're getting ready to head to an estate planning session for special needs kids. It's something we've been putting off but it's time to check into. I'll report back if they have any good info. I'm skeptical.


----------



## Homemaker_Numero_Uno

My son also got NOS diagnosis at early age, after a 2-day neuropsych/developmental exam with a pediatric specialist. I was so lucky because I had him in a full-day year-round Preschool 2 and Kindergarten for 2 years, where I was able to arrange for OT, PT (he also had gross motor delays due to what I later learned was occult spina bifida, as well as a thyroid disorder) and also speech-communication and social communication therapy, on the same university campus and also in-place at his school. I was the first person to do that, and the school now has a program with Easter Seals on top of the graduate school that ran the social communication, spectrum therapies. There was also a 2-week special summer camp just for boys on the spectrum, very helpful. My son also went from that school to a public school that specialized in autism and so therapies continued in a group and individual setting. The school just billed the insurance company, and also had great meetings and plannings and did the measurements on time and appropriately. No more needing to go to the neuropsych for testing. He now has no IEP in 7th grade but I've made adjustments...such as we live close to school, so there is more time in the day - no bus, no car ride. That alone is awesome. I also work from home so there is no stress about having a pre-teen manage on his own...there are no after school care programs for teens, unless you have a major diagnosis and he's developed out of that, but still 13 he needs someone around, I'm happy to oblige. He wants to go to the teen center for game night and social night, and he does. It's in our neighborhood, and has had a lot of therapy in role playing to learn how to ask to join in a game (or not) and how to invite others to join him in an activity (with increased chance of success.) So, I was skiing/boarding with him the other day, and a couple girls from his school went over us on the lift and one of them called down to him, his name and "I love you!" He said the girls at school say that frequently to him, and it wasn't at all bullying. Just flirting I think. But I think it's that he is so laid back and composed in his own world and so secure in the support that he gets, that he comes across as way too cool. Probably too his lack of acknowledgement in any way to the girls leads to yet more attention. Too funny. I dunno, he has certainly made me feel much more of a competent parent with all these challenges - spinal surgery, thyroid, being on the spectrum, slow growth, etc. 

We don't worry too much about him being independent as an adult, I don't think our family is really one to go separate ways. His sister and he are pretty tight, and he also has an older brother. 

*I think there's way too much focus on complete independence, and normalcy.* Once you take away that goal (for everyone, actually) life becomes much more manageable, a lot of the stress goes away.

With regard to the diet, he does better with Pediasure, but doesn't like that now. So, ummmmm, have been making him breakfast shakes with organic infant formula and he does quite well on it. I think it's the B12, which does have something to do with neural activity...

I also think one weird thing about living with someone who doesn't always read facial expressions, aside from him having had the training, is that we don't do "angry" in our home, and when we are happy about something we do the high five thing and really try to show it (even though it's play acting...) I think my daughter and I have evolved this way so that my son can also share in the emotional life that would otherwise perhaps be available to him....he will talk about his feelings, and said he doesn't know what he would do if we were not here to listen. Awwww. But really, it's helped me to be more aware of my own feelings, and how to express them transparently, and verbally. No mind readers needed in this house.


----------



## Deejo

*Re: Re: Autism Monster Bar and Grill*



Lon said:


> That has been grade 1 for my son, when I bring him to school, more so at the beginning of the school year he constantly had other kids of all ages say hi and asking what he is doing, and almost every time he completely stonewalls them. Whenever I have tried to talk to him about this he says they all hate him and when I'm not around they are mean to him instead. Now it seems they have all learned to ignore him and give him distance. Even in the classroom under teacher supervision.


This is actually why neither myself nor my ex believes any longer that inclusion is a good idea.

There is absolutely no strategy whatsoever to try to 'integrate' NT kids with the SPED kids. The only message the NT kids get is to avoid 'kids like that'.


----------



## sandc

Things seem to be somewhat stable in the autism world for us right now. A facebook friend suggested we look into marijuana to treat my son's aggression. We looked into that but found that we would have to completely take him off all the drugs that he is on because it would interact. I'm wondering now if that's not a good way to go. Marijuana is far more natural and won't destroy your liver like the stuff he's on now. One thing that did seem to help is we took him to have an IV at a local alternative doctor. It consisted of multivitamins and a megadose of vitamin C. It seem to calm him down a bit and helped him sleep that night. I think sleep is the biggest issue for him. When he sleeps he's good. We give him melatonin every night but he still wakes up most nights. Then he wants to go do things.


----------



## mablenc

It's amazing what a good dose of vitamins can do. We have the same problems at night. Melatonin helps fall asleep by not stay. I think the GABA in our case has helped. I'm happy to announce my son has gone two weeks without getting up at night. We are finally sleeping!

I'm glad to hear your son is doing better. I'd also check his priscriptions, some can make the agression worse.
_Posted via Mobile Device_


----------



## sandc

He is on Luvox for anxiety and anti-OCD. He get's really stimmy without it. He also takes Abilify for aggression. It's the Abilify I hate. I'd rather him smoke weed than take Abilify. He doesn't like taking it for whatever reason either. It apparently makes him not feel good in some way. He can't describe it.

So glad to hear you are getting full night's sleeps now. Thats important for Mable Jr, AND for mom and dad! That was a milestone for us, when he started sleeping through the night. I think he was about 9 or 10.


----------



## mablenc

Yeah my son is almost 10
_Posted via Mobile Device_


----------



## mablenc

When I was on luvox it did make me feel very aggressive. If you knew me in real life that would be the last word to describe me. I also feel the urge/compulsion to do weird things like shop lift and gamble, I have never ever done any of that. I knew it was the luvox and well didn't do anything stupid. I stop taking it after three months and a 15lb gain weight. These meds while helpful can be scary. I won't even get started about my Cymbalta withdraw. 

As for my son, we put him on focalin, aderall, intunive, we had bad side effects with all. Tics, and lots of weight loss. We at the moment don't have him on anything.


----------



## sandc

That's interesting about Luvox. That's exactly what's happening. He's aggressive and impulsive. Just like you were. 

Oh, and Caramel says thank you for reminding her about the GABA.  She was going to try that next because it worked on her so well.


----------



## mablenc

GABA is amazing as well as 5HTP and lithium. I like to use the 5HTP for depression, it helps . We are trying vinopocetine for attention. The verdict is still out.
_Posted via Mobile Device_


----------



## mablenc

By the way on GABA we have me son take 3-4 capsule of the 750mg. Some autistic children use higher dosages.
_Posted via Mobile Device_


----------



## sandc

I'll mention that to Caramel.

I think it's probably time we shook up the meds a little. That was really good info about the Luvox. You're making me wonder if some of the behaviors of stealing, and going out at night aren't related to the Luvox. Right now we can keep that in control through his faith. He doesn't want God to be unhappy with him.


----------



## larry.gray

We're strongly thinking that our 9 y/o son is somewhere on the spectrum. He's mild, and pretty functional in most ways. But he exhibits SO MANY of the traits. Particularly the rigid thinking aspects. He hears things different than most other people, and when he does, he's very hard to convince otherwise. He'll misinterpret what someone says and then his singular focus is arguing about what they said. He and his teacher are particularly troubled by this. 

We've got a request to have an appointment with a child psychiatrist that a friend uses. The woman has very high recommendations, but takes a long time to get your first appointment because she's so popular. It's probably a few months away.

In the meantime the school is doing their own evaluation.


----------



## mablenc

sandc said:


> I'll mention that to Caramel.
> 
> I think it's probably time we shook up the meds a little. That was really good info about the Luvox. You're making me wonder if some of the behaviors of stealing, and going out at night aren't related to the Luvox. Right now we can keep that in control through his faith. He doesn't want God to be unhappy with him.


Look at his behavior before the Luvox and compare it. I had never felt so impulsive.


----------



## mablenc

larry.gray said:


> We're strongly thinking that our 9 y/o son is somewhere on the spectrum. He's mild, and pretty functional in most ways. But he exhibits SO MANY of the traits. Particularly the rigid thinking aspects. He hears things different than most other people, and when he does, he's very hard to convince otherwise. He'll misinterpret what someone says and then his singular focus is arguing about what they said. He and his teacher are particularly troubled by this.
> 
> We've got a request to have an appointment with a child psychiatrist that a friend uses. The woman has very high recommendations, but takes a long time to get your first appointment because she's so popular. It's probably a few months away.
> 
> In the meantime the school is doing their own evaluation.


At this point I would say you read as much as you can about autism. My mother suggested that my son was autistic I as very mad. Once I started reading up it described him so well. It can be tricky for some though. 

You can also apply some ABA approaches for now see if they help his behavior. Waiting is the worst. Also, the schools are different they may not be the best resource to evaluate so take what they say with a grain of salt.


----------



## larry.gray

My wife is on the same page you were. She's very sensitive to "labels." I look at it as something to give him the best help possible.

I also don't look at it as such a bad thing. Being in the science / engineering field, I know lots of people that are most definitely on the spectrum. Many of the 'nerd' stereotypes are just describing the traits of Asperger's. 

We'll see about the school. At first they ignored, then did unhelpful things. Now they are applying several strategies that are working well. At first the strategies were based on what inspires a 'normal' kid to behave well. I've figured out those don't work with him. His problem is actually understanding what is desired. They are working on giving him a clear understanding on what behavior is OK and what is not, and having HIM do an analysis of what he's doing and where it fits in. That's work far better than a normal punishment in getting him to do what is expected.


----------



## sandc

larry.gray said:


> We're strongly thinking that our 9 y/o son is somewhere on the spectrum. He's mild, and pretty functional in most ways. But he exhibits SO MANY of the traits. Particularly the rigid thinking aspects. He hears things different than most other people, and when he does, he's very hard to convince otherwise. He'll misinterpret what someone says and then his singular focus is arguing about what they said. He and his teacher are particularly troubled by this.
> 
> We've got a request to have an appointment with a child psychiatrist that a friend uses. The woman has very high recommendations, but takes a long time to get your first appointment because she's so popular. It's probably a few months away.
> 
> In the meantime the school is doing their own evaluation.


Have you had an IEP with the school? Maybe they need to work on ways your son's teacher can present the info to him so that he won't get it mixed up in his head. That sounds a little like dyslexia too.


----------



## mablenc

Something as simple as a written schedule can work wonders. 

Our neurologist told us to look at is as a blessing, and while it is hard to deal with, it has been a blessing.


----------



## mablenc

sandc said:


> Have you had an IEP with the school? Maybe they need to work on ways your son's teacher can present the info to him so that he won't get it mixed up in his head. That sounds a little like dyslexia too.



They would first need a diagnosis, to have an IEP. (I believe)


----------



## larry.gray

Yep, the IEP waits until they have a diagnosis. We had a lengthy information gathering meeting first. 4 of the 5 teachers he's had still work for the school, and they all joined to talk about what they've observed over the years.


----------



## mablenc

I also believe I fall somewhere in the spectrum too, at this point I don't really care for a diagnosis. It would have been great while I was in school I had such a hard time. I still struggle a bit because I think very literal and sometimes don't understand sarcasm. But people are hard to understand anyway. I also felt outside my body, its hard to explain. 

I do have to smell everything though that habit is hard to get rid of.


----------



## sandc

And ditto on the schools. Don't let them dictate to you what will happen. If you don't like what they are doing, call them on it. Schools do not always have the needs of the individual child in mind. Many times they worry about the other students (liability) and what's easiest on teachers and administration. Get an IEP done. Tell them what you'd like to see happen. Caramel and I have had IEP's where we had lawyers and everyone in special ed chain of authority up to the county level.


----------



## sandc

mablenc said:


> They would first need a diagnosis, to have an IEP. (I believe)


Yep, true.


----------



## mablenc

sandc said:


> And ditto on the schools. Don't let them dictate to you what will happen. If you don't like what they are doing, call them on it. Schools do not always have the needs of the individual child in mind. Many times they worry about the other students (liability) and what's easiest on teachers and administration. Get an IEP done. Tell them what you'd like to see happen. Caramel and I have had IEP's where we had lawyers and everyone in special ed chain of authority up to the county level.


You can also reach out to your states autism society they will have an advocate go to the meeting with you.


----------



## larry.gray

sandc said:


> Have you had an IEP with the school? Maybe they need to work on ways your son's teacher can present the info to him so that he won't get it mixed up in his head. That sounds a little like dyslexia too.


What they've been doing recently has been a major improvement. I don't think it is dyslexia, it is they very classic Asperger's like misunderstandings. So much of human speech relies on inference of the things not said. He takes things said in the absolute literal sense of what is said. 

One additional big disconnect is he doesn't process conditional statements. In his mind, the first part of a conditional statement is a stand alone statement. We've figured out that you have to state the condition first and then the result. 

If I say "You can't have your snack until you put away your school bags and shoes." He hears the "you can't have a snack."

We've learned never to state things like that to him. Most kids, no problem, but he can't process it.


----------



## sandc

I have some odd traits as well (if you haven't noticed). Rigidity (rulez are rulez), not understanding the motivations of others, don't do well in large groups, etc. I chalked it up to my trying to find reasons why my son was autistic. It must have been because I'm on the spectrum, right?

You need to smell everything? I need to lick everything so if we ever meet in real life, don't be offended. <--This is humor. I don't really lick everything.

And that's another trait. I understand humor and what makes other people laugh very well. Thing is, I don't think any of what I say is funny at all. It's just... info to me. The stuff that makes me laugh is really off the wall and unfunny to most other people. I have an autistic sense of humor maybe?


----------



## larry.gray

sandc said:


> And ditto on the schools. Don't let them dictate to you what will happen. If you don't like what they are doing, call them on it.


It helps that I'm on the school board.


----------



## sandc

larry.gray said:


> What they've been doing recently has been a major improvement. I don't think it is dyslexia, it is they very classic Asperger's like misunderstandings. So much of human speech relies on inference of the things not said. He takes things said in the absolute literal sense of what is said.
> 
> One additional big disconnect is he doesn't process conditional statements. In his mind, the first part of a conditional statement is a stand alone statement. We've figured out that you have to state the condition first and then the result.
> 
> If I say "You can't have your snack until you put away your school bags and shoes." He hears the "you can't have a snack."
> 
> We've learned never to state things like that to him. Most kids, no problem, but he can't process it.


It sounds like you may not need an IEP then. It sounds like your son's teacher just needs to have some meetings with you and then change the way she speaks to him.

So.. if you said something like "Hey, as soon as you put your stuff away, we're going to have a snack!" Does he react better to that? Or does he think that because he's never going to put his stuff away, he's never going to have a snack and then get upset?


----------



## mablenc

sandc said:


> I have some odd traits as well (if you haven't noticed). Rigidity (rulez are rulez), not understanding the motivations of others, don't do well in large groups, etc. I chalked it up to my trying to find reasons why my son was autistic. It must have been because I'm on the spectrum, right?
> 
> You need to smell everything? I need to lick everything so if we ever meet in real life, don't be offended. <--This is humor. I don't really lick everything.
> 
> And that's another trait. I understand humor and what makes other people laugh very well. Thing is, I don't think any of what I say is funny at all. It's just... info to me. The stuff that makes me laugh is really off the wall and unfunny to most other people. I have an autistic sense of humor maybe?


I thought that a lot of behavior my son has was normal. I got a migraine during a light sensitivity test they were doing on him. I am severely dyslexic. 

I get overwhelmed if there is a large crowed of people around and shut down and sound makes me hurt.


----------



## sandc

larry.gray said:


> It helps that I'm on the school board.


Hmmm.... maybe I should have just done that.


----------



## mablenc

larry.gray said:


> What they've been doing recently has been a major improvement. I don't think it is dyslexia, it is they very classic Asperger's like misunderstandings. So much of human speech relies on inference of the things not said. He takes things said in the absolute literal sense of what is said.
> 
> One additional big disconnect is he doesn't process conditional statements. In his mind, the first part of a conditional statement is a stand alone statement. We've figured out that you have to state the condition first and then the result.
> 
> If I say "You can't have your snack until you put away your school bags and shoes." He hears the "you can't have a snack."
> 
> We've learned never to state things like that to him. Most kids, no problem, but he can't process it.



They say that when they are processing the words you just said, some of the waves in the brain get disconnected and its hard to process what you said, find and say a response and then do what you asked him to do.


----------



## sandc

mablenc said:


> I thought that a lot of behavior my son has was normal. I got a migraine during a light sensitivity test they were doing on him. I am severely dyslexic.
> 
> I get overwhelmed if there is a large crowed of people around and shut down and sound makes me hurt.


I do have extreme sensitivity to light. I was just told it's a trait of blue-eyed people. I get a piercing pain through my temples for a few seconds when I first go outside. I have a permanent frown because of the light unless I wear sunglasses or try really hard to ignore pain. As soon as I try to open my eyes wider when I'm outside, it hurts. I am mildly dyslexic. Get my left and right backwards all the time but only when I say it. I understand it when other people say it. Sometimes I'll speak Spoonerisms (saying affectly directed instead of directly affected, as an example). Math has always been hard, English easy. I hate being ignored but can't stand a lot of attention. 

Nothing makes sense with me!


----------



## larry.gray

sandc said:


> I have some odd traits as well (if you haven't noticed). Rigidity (rulez are rulez), not understanding the motivations of others, don't do well in large groups, etc. I chalked it up to my trying to find reasons why my son was autistic. It must have been because I'm on the spectrum, right?


I have some traits that go so strongly each way. Some that make me realize where he gets some and yet others that are so uncharacteristic it's clear I'm not. 

Some on that list:
I don't like inexact language. To a degree this is a strike for and against. I can understand what people mean most of the time, but don't like common things people will do. As an example, if you use the word "always" or "never" it better mean without exception.

- I can't fake facial expressions. I just don't know how to. When I'm told to smile for a photograph I can't make anything other than a pained expression unless I'm actually happy. 

- OTOH, I can read people so well. I very rarely ask people "are you joking" when they are being sarcastic. I use sarcasm, and I get sarcasm. I can look at somebody and I intuitively know their emotional state. People don't get away with lying to me.

- I can be very empathetic. When something happens to others, I often get what they are feeling without them expressing it.


----------



## larry.gray

sandc said:


> So.. if you said something like "Hey, as soon as you put your stuff away, we're going to have a snack!" Does he react better to that? Or does he think that because he's never going to put his stuff away, he's never going to have a snack and then get upset?


I didn't include that as a counter example, but yes. He fails with negative consequence conditional statements. We put things like you said now to avoid the meltdowns that can come from such statements.


----------



## sandc

larry.gray said:


> - I can be very empathetic. When something happens to others, I often get what they are feeling without them expressing it.


To me, this one trait right here, yanks you right off the spectrum chart. Most of the autistics I've met have ZERO empathy. My son has learned it over the years. He only has empathy for people he knows. Everyone and everything else in the universe are "objects" that he interacts with. 

He can tell when Caramel and I are upset or angry. He has to ask about other people. He catalogs and files away every reaction and facial the people in his life have and draws on that to make sense of what we are doing. He doesn't understand that what makes me sad will make other people sad too. He has to be discretely taught each and every new situation and how to react in that situation. Before it was through discrete trial. Now we can just tell him.


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## larry.gray

Yes, I'm sensitive to bright light. Similar to what you describe S, I have to have glasses. Especially in the city where you get lots of reflections. But I also get seasonal disorder if I don't keep my house lit up in the winter. How's that for a contrast.

I hadn't heard the term 'spoonerism' but I do those too. 

I'm a math wiz though in spite of mild dyslexia. My disconnect is in spoken numbers to the visual meaning. If someone says a string of numbers to me I will get crossed up. But otherwise I do very well with numbers and math. All the way from being very fast and accurate with arithmetic to never finding even advanced 400 level college math particularly hard.


----------



## larry.gray

sandc said:


> To me, this one trait right here, yanks you right off the spectrum chart. Most of the autistics I've met have ZERO empathy. My son has learned it over the years. He only has empathy for people he knows. Everyone and everything else in the universe are "objects" that he interacts with.


Yep! I have it bad. I'm the guy people automatically open up to because of it.

My son has zero, even for mom. None. Most 9 y/o boys aren't loaded with empathy yet so we'll see after frontal brain development.


----------



## sandc

Spoonerism - Wikipedia, the free encyclopedia


----------



## Lon

*Re: Re: Autism Monster Bar and Grill*



larry.gray said:


> I have some traits that go so strongly each way. Some that make me realize where he gets some and yet others that are so uncharacteristic it's clear I'm not.
> 
> Some on that list:
> I don't like inexact language. To a degree this is a strike for and against. I can understand what people mean most of the time, but don't like common things people will do. As an example, if you use the word "always" or "never" it better mean without exception.
> 
> - I can't fake facial expressions. I just don't know how to. When I'm told to smile for a photograph I can't make anything other than a pained expression unless I'm actually happy.
> 
> - OTOH, I can read people so well. I very rarely ask people "are you joking" when they are being sarcastic. I use sarcasm, and I get sarcasm. I can look at somebody and I intuitively know their emotional state. People don't get away with lying to me.
> 
> - I can be very empathetic. When something happens to others, I often get what they are feeling without them expressing it.


Whatever orders or disorders you may have, my son and myself also have in common. As for the empathy, it's not as though we are always aware of it or even make any kind of effort it just happens, it's not that we show empathy when others need support, but if someone is frustrated near me i become frustrated (and can't tell why). It all has to do with picking up other people's energy, and i find that if someone is walking crooked next thing i know i am, or if they are smiling next thing i am for atleast the moments they are in near proximity . My son is still coming into this and while his actions don't reflect the actions of others around him, his mood sure is affected by others, at a very subtle but distinct level to those who recognize it in him.

He has had an assessment by the school psychologists and they seem to be ruling out ASD, his social interactions are fine when one on one, but his working memory just isn't there, he is brilliant with numbers and spatial ability, ok with word recognition but they feel he lacks fine motor control (which i don't completely believe) as well as poor social interaction. They also want to rule out metabolic causes for his frequent episodes of needy and non compliant behaviour. So we are being referred back to his family doctor for bloodwork and referral to a nutritionist, as well as further evaluation at a children's development center.

I don't think they will ever find a correct label for him, but as long as we are able to get some extra resources for him i think he can be very successful...


----------



## Bellavista

sandc said:


> I do have extreme sensitivity to light. I was just told it's a trait of blue-eyed people. I get a piercing pain through my temples for a few seconds when I first go outside. I have a permanent frown because of the light unless I wear sunglasses or try really hard to ignore pain. As soon as I try to open my eyes wider when I'm outside, it hurts. I am mildly dyslexic. Get my left and right backwards all the time but only when I say it. I understand it when other people say it. Sometimes I'll speak Spoonerisms (saying affectly directed instead of directly affected, as an example). Math has always been hard, English easy. I hate being ignored but can't stand a lot of attention.
> 
> Nothing makes sense with me!


Oh that is me to a tee! I am dyslexic, however I can read well. Left and right is a real issue, reading maps is difficult, my speech becomes garbled at times and I can't do maths well. I have odd little ways of working out mathematical problems that my kids don't understand, but it works for me, so I keep on with it.

With our eldest son being aspergers and the other kids all preferring to not be in social situations, it makes sense that I have some ASD traits that have been passed along. My brother hates social situations and always has, he shut himself in his room when he was 5 rather than attend his own birthday party.


----------



## rush

School called, meeting about youngest son Thursday, wonder what this is about??


----------



## Deejo

*Re: Re: Autism Monster Bar and Grill*



larry.gray said:


> My wife is on the same page you were. She's very sensitive to "labels." I look at it as something to give him the best help possible.


Which is the kicker, because in order to get services, the label is required.


----------



## Starstarfish

Went shopping at Target yesterday, and got the fifth degree from the cashier about my purchases. I feel very triggered. 

It makes me feel inclined to lie, because it's very difficult to keep a pleasant tone when people start asking questions that make you want to cry. That I don't feel that I should need to explain about my son's condition every time I go shopping for his food, because they can see how old he is, and then feel inclined to comment "Isn't he a bit old for that?" 

I feel like I made a mistake to mention that he was on the spectrum with PSD, as it just led to a further flurry of questions and commentary. "Will he ever be able to go to "real" school?" "I can see why he's your only, that must be difficult." And of course, the ever favorite, "Does it run in the family?"

I feel like if his disability was more visibly obvious, people wouldn't be so inclined to be nosy or judgmental, because they would feel guilty. IE - no one with half a brain cell asks the child in a wheelchair, "So, were you born like that?" 

Mostly just venting, but ugh.


----------



## Deejo

Starstarfish said:


> Went shopping at Target yesterday, and got the fifth degree from the cashier about my purchases. I feel very triggered.
> 
> It makes me feel inclined to lie, because it's very difficult to keep a pleasant tone when people start asking questions that make you want to cry. That I don't feel that I should need to explain about my son's condition every time I go shopping for his food, because they can see how old he is, and then feel inclined to comment "Isn't he a bit old for that?"
> 
> I feel like I made a mistake to mention that he was on the spectrum with PSD, as it just led to a further flurry of questions and commentary. "Will he ever be able to go to "real" school?" "I can see why he's your only, that must be difficult." And of course, the ever favorite, "Does it run in the family?"
> 
> I feel like if his disability was more visibly obvious, people wouldn't be so inclined to be nosy or judgmental, because they would feel guilty. IE - no one with half a brain cell asks the child in a wheelchair, "So, were you born like that?"
> 
> Mostly just venting, but ugh.


I prefer the questions over 'the looks'.

Ex and I live in a small community, most folks know who our son is, and that he has 'issues'. Again, our boy is very, very, mild.

What you indicate above is exactly the kind of evidence that 'normal folk' aren't NEARLY as aware as they could be about autism or how to interact with people on the spectrum.

That is the fight that my ex-wife is itching for.

She tells the example of how she was with one of her 20 year old clients and he wanted to go to the store. He went to pay and there was a line of people behind him. He diligently counted out his money, and when given his change back, stood at the counter while counting it, and then arranging his bills so they all faced the same way. He was oblivious to anyone and anything else. Ex could see 'the looks' from the people in line, she chimed in with a smile, "That's funny, I need all of my bills facing the same way too. Are you all set? Let's go."

And with that, she said that everyone's expression changed. All of a sudden it dawned on them that the boy wasn't being a passive aggressive brat, recognizing that ex was his 'facilitator/coach' they understood that there was something else going on and it de-escalated the entire scenario. 

She has lots of other stories just like that one. She keeps saying, "Someone needs to build the bridge. We keep expecting these kids and adults to understand and function in our world, when what really needs to happen is that we need to understand and function in theirs as well."


----------



## richie33

Here in NY we just had a terrible case of a 14 year old, non verbal boy who somehow got past the school security guard and basically disappeared since October. They just found his body, they think he ended up by the water and drowned. I was checking the reports everyday since this became news, hoping for a happy ending. I feel so bad for this boys parents. RIP Avonte.


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## Bellavista

There have been two tragic cases here locally within the last two months of 4 year old autistic boys escaping through the night and drowning in local water ways. I cannot imagine how bad the parents must feel.

One family was on holidays and the other family had just moved to this region. 

I know we had a terrible problem with our eldest wandering off when he was little, he just had no idea and despite everything we would tell him, it would not stick.


----------



## Homemaker_Numero_Uno

On the flip side, a 13 year old boy with autism was recently recognized as a hero for taking action during a crisis situation, to alert others in the home to a fire that only he noticed. Everyone got out safely, later they had time to be amazed at how he rallied and communicated to everyone. 

But yah, when my guy was younger and I went camping as the only adult, I used to put him in his life jacket (swim/flotation device) and tether him to a clothesline to keep him from the firepit and cookstove. And in the city or on a ferry, always had him in a walking harness...fortunately this was usually Montreal so people were cool with it as is very Euro for kids to be on walking harnesses. At night he either slept with me or in a hammock. Have also used loud bells with one of my kids who was a runner...especially at the beach. Easier to hear than see. And everyone remembers seeing kid with loud bell around ankle go by. lol.


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## Starstarfish

Thanks for posting that, Homemaker. I feel less mental now that I realize I'm not the only parent who uses the walking harness.


----------



## Lon

For the past several weeks my son has been having more and more hands on incidents at school, kissing the girls, punching the boys and now today he is kicking. He is getting sent to the principals office more and more and now the principal has repeated on two instances he is at the limit and will be expelling him.

I am frustrated because early on when i met with his teacher and the schools resource teacher i talked about reinforcing these bad behaviors with attention, and since then he has been getting more and more attention for them. While removing him from the classroom is necessary to prevent hands on incidents, i dont think it is having the affect they intend, they are feeding it but i don't know how to break that cycle especially during school hours when i am not there to personally reinforce positive behaviors and make the consequences of bad ones unpleasant.

I Googled "why won't my son follow the rules" and "oppositional defiant disorder" came up. I have considered this in the past but have been waiting for some kind of official diagnosis before we come up with a comprehensive plan. I have been following that course of attack at home anyway but i don't think they are willing to acknowledge my view or treat him that way and i don't know what my options are especially remotely. I am scared/worried because it feels as though his educators and other adults in his life (except for myself and his mother) are inclined to just give up on him. So much for the idea of "no child Left behind"... My son is brilliant and kind and funny and generally happy, those that get to know him adore him and when there is mutual respect he is so well behaved. But i am getting the message from the teacher and principal that they wish he didn't exist.


----------



## sandc

In the US, schools are required by law to provide an "appropriate education in the least restrictive environment." They wanted to expell my son too. It took an IEP involving the county superintendent of education, principal, teachers, aids, and... our lawyer to remind them of this requirement. They didn't know she was coming. They were surprised... and afterwards very cooperative. 

Does Canada have similar laws?


----------



## Lon

*Re: Re: Autism Monster Bar and Grill*



sandc said:


> In the US, schools are required by law to provide an "appropriate education in the least restrictive environment." They wanted to expell my son too. It took an IEP involving the county superintendent of education, principal, teachers, aids, and... our lawyer to remind them of this requirement. They didn't know she was coming. They were surprised... and afterwards very cooperative.
> 
> Does Canada have similar laws?


I haven't looked into the legalities yet, i don't know if a judge can dictate which school has to accommodate him, probably just that the school board has to in some way.

And unfortunately my ex has already been talking about home schooling which i am opposed to because i think a lot of the problems are due to lack of socialization.


----------



## sandc

It never rose to the level of judge in our case. As soon as they saw the lawyer they immediately changed their tune. I would research legal advocates for special needs kids. See if there are any. Start with the family practice lawyers. They might know someone. Learn your rights as a parent. No one will advocate for your child better than you.


----------



## Lon

I just am not really sure what is truly best for him right now though.


----------



## sandc

My wife homeschooled our son for 6 years. The schools didn't want him and we won that battle. Then the schools didn't want us to homeschool either. We did and it was the right decision for us. He had socialization in other places besides school though. Church and outings with other homeschoolers. We put him back in school for his junior year in HS. The schools were more equipped to handle him by then. Plus many of his unacceptable behaviors has disappeared by then.


----------



## sandc

Well I got triggered today hearing about someone talk about their autistic grandson hugging them and telling them "I love you". Not once in 22 years has my son been able to do this for my wife or I. We know he loves us though. What I wouldn't give to experience "normal" problems.

On the brighter side we've upped some of the meds my son is taking. It's taken the edge off his more aggressive behaviors. Thank God.


----------



## Lon

*Re: Re: Autism Monster Bar and Grill*



sandc said:


> Well I got triggered today hearing about someone talk about their autistic grandson hugging them and telling them "I love you". Not once in 22 years has my son been able to do this for my wife or I. We know he loves us though. What I wouldn't give to experience "normal" problems.
> 
> On the brighter side we've upped some of the meds my son is taking. It's taken the edge off his more aggressive behaviors. Thank God.


Lately my son has been showing what I consider excessive affection - constant hugs and kisses at inappropriate times, and it seems not genuine at all. I accept his affection but I'm not sure if I should be because he is doing it for some other reason I am certain. It is nice to receive his affection, I am sorry you won't get that from your son, but atleast you are not getting anything fake. There may not be many ways in which the love is expressed, but he is loved, and somewhere in his world there is reciprocation for you.


----------



## sandc

Lon said:


> Lately my son has been showing what I consider excessive affection - constant hugs and kisses at inappropriate times, and it seems not genuine at all. I accept his affection but I'm not sure if I should be because he is doing it for some other reason I am certain. It is nice to receive his affection, I am sorry you won't get that from your son, but atleast you are not getting anything fake. There may not be many ways in which the love is expressed, but he is loved, and somewhere in his world there is reciprocation for you.


Nope, that's one thing. He's as transparent as can be. He says whatever he's thinking. He often wonders how we figured out what he was going to do before he did it. That's because you told us! 

The little girl shows us lots of love so we have that. One thing he has taught us... unconditional love. This is how you love someone that will never love you back.


----------



## richie33

The new numbers are not very encouraging. 1 in 66 now....30% increase in the past 2 years. 
Thinking of all the parents and their children dealing with this.


----------



## Lon

Yesterday was a 15 minute freak out about socks and shoes when we got to school, and he throws so much rage that it always attracts such a large crowd of onlookers and spectators. Today was much better but now the teacher decides she wants to tackle his constantly grabbing himself in the crotch (mostly on the outside, scratching and adjusting, says he is itchy and uncomfortable but I think it's just a case of idle hands... He never needs to adjust when he's playing a video game, building Lego or climbing on apparatus at gymnastics).


----------



## Homemaker_Numero_Uno

Starstarfish said:


> Thanks for posting that, Homemaker. I feel less mental now that I realize I'm not the only parent who uses the walking harness.


The kids LOVE the walking harness, because it gives them the feeling of freedom to look around wherever they like and not to feel threatened or unsafe by hazards they know on some level exist but that they cannot monitor. 

A less-stressed parent is also not interrupting or trying to interrupt the kids' inner thoughts by saying "watch out!" "Hold my hand!" "Stop!" "Come here!" (Or simply running around like crazy asking people if they have seen your kid....)

Walking harnesses are very common in some countries. I was in Quebec a lot and did not realize this. But then most people assumed I was either from France or Morocco. :rofl: We had a sheepskin too, and kid just slept on it under the table during dinners that ran late. Apparently that's also a Moroccan thing. Who would have known. 

We were able to go hiking and to go on ferries and places I wouldn't have felt comfortable going otherwise.


----------



## larry.gray

richie33 said:


> The new numbers are not very encouraging. 1 in 66 now....30% increase in the past 2 years.
> Thinking of all the parents and their children dealing with this.


I don't look at it this way at all. I think the rate is no higher, we're just more aware.

20 years ago the high functioning folks were just treated as the 'weird' among us. Now they are being diagnosed and helped.


----------



## Deejo

*Re: Re: Autism Monster Bar and Grill*



Lon said:


> Yesterday was a 15 minute freak out about socks and shoes when we got to school, and he throws so much rage that it always attracts such a large crowd of onlookers and spectators. Today was much better but now the teacher decides she wants to tackle his constantly grabbing himself in the crotch (mostly on the outside, scratching and adjusting, says he is itchy and uncomfortable but I think it's just a case of idle hands... He never needs to adjust when he's playing a video game, building Lego or climbing on apparatus at gymnastics).


Shows how little most educators are aware of how to deal with these kids. Sounds to me like he just needs a 'fidget'. This is a tactile toy or item the child can have during periods of required listening or concentration.


----------



## Lon

*Re: Re: Autism Monster Bar and Grill*



Deejo said:


> Shows how little most educators are aware of how to deal with these kids. Sounds to me like he just needs a 'fidget'. This is a tactile toy or item the child can have during periods of required listening or concentration.


They did provide a seat cushion that has handles which his teacher says he likes and uses (or used before anyway). I talked with him and actually had a good discussion he was quite clear when he said it is because his skin (I presume his sack) sticks to his leg and he constantly needs to unstuck it. I too know how uncomfortable that can be. I have bought him some different sized underpants to try alleviating the problem but they don't seem to help.

This morning's sock rage lasted 25 minutes and I was literally ready to shoot myself. I think it went beyond tactile and was in the "power struggle" realm. He can be an effective manipulator (to me anyhow)


----------



## sandc

Lon said:


> They did provide a seat cushion that has handles which his teacher says he likes and uses (or used before anyway). I talked with him and actually had a good discussion he was quite clear when he said it is because his skin (I presume his sack) sticks to his leg and he constantly needs to unstuck it. I too know how uncomfortable that can be. I have bought him some different sized underpants to try alleviating the problem but they don't seem to help.
> 
> This morning's sock rage lasted 25 minutes and I was literally ready to shoot myself. I think it went beyond tactile and was in the "power struggle" realm. He can be an effective manipulator (to me anyhow)


How about taking him to the store and let him touch all the socks until he finds some that he likes? Make him feel like he has some control over himself. I know my son gets angry because he's always being told what to do, always being managed. I would hate that too. Maybe a little think like sock selection might help him not fight about socks so much?

Maybe a little talcum powder for the sack stickage?


----------



## Lon

*Re: Re: Autism Monster Bar and Grill*



sandc said:


> How about taking him to the store and let him touch all the socks until he finds some that he likes? Make him feel like he has some control over himself. I know my son gets angry because he's always being told what to do, always being managed. I would hate that too. Maybe a little think like sock selection might help him not fight about socks so much?
> 
> Maybe a little talcum powder for the sack stickage?


Both good ideas... The socks idea we've done, all the socks he has are ones he picked out, he won't try any other kind but these ones are no good any more. Now when I take him to the store he puts up a fit and absolutely won't cooperate about picking out socks, he just wants to go barefoot (which I'm fine with but he scrapes his feet too often and the school has decided to be strict about their footwear policy).

I will try talc, that might just do the trick and I think he will like it too.


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## CantePe

*Re: Re: Autism Monster Bar and Grill*



sandc said:


> In the US, schools are required by law to provide an "appropriate education in the least restrictive environment." They wanted to expell my son too. It took an IEP involving the county superintendent of education, principal, teachers, aids, and... our lawyer to remind them of this requirement. They didn't know she was coming. They were surprised... and afterwards very cooperative.
> 
> Does Canada have similar laws?


As a matter of fact our laws are much more defined and strict. We also have the CAP or child advocacy project who volunteer their time as educational lawyers to make schools and school boards comply with educational law.

Anyone in Canada having problems contact your local CAP and Autism Society. The schools must comply with educational law and your established IRPC and IEP in place.


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## sandc

Lon said:


> Both good ideas... The socks idea we've done, all the socks he has are ones he picked out, he won't try any other kind but these ones are no good any more. Now when I take him to the store he puts up a fit and absolutely won't cooperate about picking out socks, he just wants to go barefoot (which I'm fine with but he scrapes his feet too often and the school has decided to be strict about their footwear policy).
> 
> I will try talc, that might just do the trick and I think he will like it too.


What about those "barefoot" shoes? Think your son and/or your school would compromise on those?


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## Lon

*Re: Re: Autism Monster Bar and Grill*



sandc said:


> What about those "barefoot" shoes? Think your son and/or your school would compromise on those?


Those would drive him insane! His mom has some of those "five finger vibrams" and the sight of them makes him squirm, same with the "toe socks" that are like foot gloves.


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## sandc

Lon said:


> Those would drive him insane! His mom has some of those "five finger vibrams" and the sight of them makes him squirm, same with the "toe socks" that are like foot gloves.


:lol: They do the same to me for what it's worth.


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## Plan 9 from OS

Been awhile since I've been in this thread. I'm glad to say that my son continues to develop well. We've seen a significant increase in his maturity between 16 and 17. I think a lot of what helped him was to change schools from the local high school to the vocational school. He is now learning how to fix mobile and power equipment (small engine repair) plus is even learning how to weld - which he's very good at from what I hear. My son seems to be gravitating towards welding, and after his senior year (he's a jr now) we'll enroll him in classes to become a certified welder - assuming he's still going down this path. He may still end up going for a 4 year degree in his future. Right now, he has his learners permit for driving and is doing well there too.

He still struggles with tourettes (primarily anxiety based I think) and still rocks himself. Emotionally as he matures he seems to be developing better empathy and awareness around him.

What I find interesting is that he's learning to compensate and fit in a lot better the older he gets.


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## larry.gray

Hmmm, what's with the shoe theme?

My son insists on wearing them on the opposite feet. Sometimes he throws a fit if someone tries to tell him to change them.


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## Deejo

Before anyone freaks out, sandc totally deserved being banned ...

I'm kidding.

Apparently he was struggling with being distracted by the site, and ... I'm not kidding ... requested that I give him a week's reprieve.

That and now he looks like a badass.


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## Deejo

Well damn ... the poor dude is suffering from batwing.

I use Fresh Balls. Real product, not a joke. I use Fresh Balls, and Fresh Feet. Without it my shoes are like a swimming pool by days end.

I also agree with working with him on the tactile thing. I got my son microfiber sheets, and he got excited about going to bed and refused to wear pajamas.



Lon said:


> They did provide a seat cushion that has handles which his teacher says he likes and uses (or used before anyway). I talked with him and actually had a good discussion he was quite clear when he said it is because his skin (I presume his sack) sticks to his leg and he constantly needs to unstuck it. I too know how uncomfortable that can be. I have bought him some different sized underpants to try alleviating the problem but they don't seem to help.
> 
> This morning's sock rage lasted 25 minutes and I was literally ready to shoot myself. I think it went beyond tactile and was in the "power struggle" realm. He can be an effective manipulator (to me anyhow)


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## Lon

*Re: Re: Autism Monster Bar and Grill*



Deejo said:


> Well damn ... the poor dude is suffering from batwing.
> 
> I use Fresh Balls. Real product, not a joke. I use Fresh Balls, and Fresh Feet. Without it my shoes are like a swimming pool by days end.
> 
> I also agree with working with him on the tactile thing. I got my son microfiber sheets, and he got excited about going to bed and refused to wear pajamas.


I picked up some talc at the pharmacy on my lunch break today. All they had was the perfumed stuff, but either way he was excited to apply it. As soon as he did he said " it's not working, I'm still itchy". Which surprised me, he said he wasn't itchy when I asked, and when I asked again, same response. I think maybe there is an itch, he actually has a little diaper rash (yes still uses pull ups at night, I think I will just get him to do a better job washing himself with a cloth before getting dressed).


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## larry.gray

Deejo said:


> Before anyone freaks out, sandc totally deserved being banned ...
> 
> I'm kidding.
> 
> Apparently he was struggling with being distracted by the site, and ... I'm not kidding ... requested that I give him a week's reprieve.



OK, that explains a LOT. He's always been a kind, compassionate poster who's never come close in the time I've been here. When I logged in and saw him banned I really was :scratchhead::scratchhead::scratchhead:


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## married tech

Interesting accounts of how some kids act. 

A lot of it sounds very similar to how I acted as well. 

Most of my actions were more deliberate though. Some people I just did not like and thusly flat out ignored them as if they were literally nothing more to me than an object that I had to walk around. 

I can relate to the "You can have a cookie if you put your shoes away or whatever" bit very well though. For me I just did not care for the rationale of why I had to put my shoes away plus more than likely either I didn't want a cookie or the reward did not fit the work or expectation given to me. 

For me that stuff usually went down like this. 

I like where my shoes are and I don't really want the cookie or I have a way to get more than one cookie planned for later was how I saw it. Heck ground me if you want. I will happily sit in my room and being content in my own little world until everyone goes to bed. Then at that point I a going to go and get two cookies! 
First I will arrange the cookies so that it's difficult to tell if any are missing and then I will take one out that is deliberately obvious. After that I eat both but leave a bit of crumbs by my brothers bed and then the next moring claim I saw him eating a cookie when I got up to go to the bathroom. Odds are the little pig will take a cookie when he get up to go to the bathroom after I did and will admit to it anyway. 

That was how I handled things when I wanted something but didn't care for the way someone wanted me to do it. 

Yes I now know it was wrong but at that point on my life I saw the majority of my friends and the adults around me as being a bunch of selfish manipulative liars and worse so who was I do not follow suit?


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## richie33

Watched two documentaries on autism this weekend. Best Kept Secret and United States of Autism. Best Kept Secret was really eye opening.


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## rush

richie33 said:


> Watched two documentaries on autism this weekend. Best Kept Secret and United States of Autism. Best Kept Secret was really eye opening.


sorry I missed


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## Lon

Just got a call from the intake Nurse at the child development centre, intersting call: I am finding it unreal how much conflicting information is coming from the agencies that are all supposed to be in close communication over child development (school teacher and resource teacher, school psychologist, school speech pathologist, Autism services, his family physician and the child development centre).

Anyways a plan is finally coming together - he is now on the waitlist (which is 18 months long) for a thorough assessment.

I found out that they don't have occupational therapists available after kids are in school, but that the school is supposed to provide that (but the school sent us to the dev. centre...) one big crumpled up ball of red tape.

meanwhile since these assessments have all taken place I seen a lot of improvements in my son's behaviors - so it is really hard to be consistent enough for anyone to take any of this seriously.

I am completely torn on what kind of diagnosis they may make (ASD vs. ADHD), but it seems like you need to know this before anyone ever gets involved, or before you know which path you are supposed to take.

I read this table on a forum, and truly can't decide where my son would fall on it, he zigzags back and forth - a lot of his behaviors tend to fall into the ASD camp, but I think overall he tends to lean much more to the ADHD category. Or maybe there is some other potential diagnosis I'm missing altogether? (maybe Sensory processing problems??)

ASD vs ADHD: A comparison - ADD Forums - Attention Deficit Hyperactivity Disorder Support and Information Resources Community


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## dedad

Have you guys looked at Specialisterne, USA?


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## sandc

Never heard of it. What is it?


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## rush

I think I may look into having my 14 year old see a psychiatrist, or try to get him some help.


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## dedad

You can google this company. They look to hire people on the spectrum to do special tasks where they excel. The website now says that they have created 1 million jobs for people with Autism and other disorders. As parents of kids on the spectrum, you are probably aware of the special talents of your kids - things that only they can do or see. The NY times had a really good article about the founder, but that was a few years ago. They now have a division in Delaware. 

I don't have any kids or relatives on the Spectrum, but definitely believe that there is no good bad or better - just different. Everyone has strengths that they need to understand.


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## richie33

Another documentary, not directly about autism but the subject while not said to have been diagnosed I would say he is on the spectrum, it's called Shelter Island. It about a artist and a man with a son on the spectrum who take him in and help him become discovered. Its worth a watch.


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## dedad

I saw this article in the newspaper yesterday, on employing those with Autism:

Specialisterne links businesses, autistic workers

"Specialisterne links businesses, autistic workers".

I hope this is a trend and that mankind can unearth the untapped wealth of talent that those on the Spectrum have.


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## sandc

I hope that trend does grow. My 22 yo is now transitioning out of the school system and we have to find a way to integrate him into independent life now.


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## Lon

Well, with the school year drawing close to the end, and my son's teacher pretty much done having to really consider his inclusion into class activities, my son is now the faculty's hot potato.

A few weeks ago his teacher pulled me aside and said his behaviors at school have de-escalated again. They were seeing some improvements with his attention and ability to self-regulate but apparently he is now more distracable, not acknowledging anything that is said to him and having emotional outbursts again.

That came just before the announcement of June's calendar schedule which has two planned field trips. The teacher pulled me aside and said that for these two trips in June that he would need to have parental supervision or else he wouldn't be permitted to attend. At the time, I told her I would see what we could do to take time from work and attend these outings. She also said that she is requesting as many parent volunteers as possible.

So I was able to cover the first outing earlier this week, there were plenty of parents who volunteered to come along and there were essentially 1 or 2 adults for every 3-4 kids. The day went off without a hitch, I got to witness my son's behavior among his classmates and while he was certainly a little bit aloof and resistant to follow the adults, he was not noticeably moreso than any of the other boys in the class.

Now for his next outing it will be at a lake that also has a swimming pool, lots of open water so some safety concerns. However my child is being given absolutely no benefit of the doubt, and even if there are a ton of other adult volunteers it seems as if his teacher is not willing to subject anyone else to the horror of having to supervise my child. Myself nor his mother are able to take the time off of work, and nor have we been able to find anyone to go in our place (grandparents, his stepdad etc)

This lake he is going to is also where he spent many weeks in summer camps without incident last summer, and will be again this summer.

Instead, if no parental supervision is going to be provided he will be sent to another classroom for the day.

I emailed his teacher, requesting that she put this all in writing so that we have a record. In it she claims he is not being "excluded" but I disagree with that sentiment - unless every other student in the class has their own parent there then he is being singled out. This is a place he knows and likes a lot, and while his behaviors in class are often problematic, his record on field trips and his record at this particular park facility has been excellent - I feel that not permitting him will very much be taken as a punishment for his learning difficulties that are at this point well documented.

Argh, frustrating.


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## sandc

Sounds like his teacher is scared of him. We've had to deal with that many times. I say we, I mean my wife. It's sad because the teachers always assume the worst rather than look for how great these kids really are.


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## richie33

New on Netflix two autism related shows.....Sounding the Alarm and the United States of Autism. If you have the time give them a viewing.


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## sandc

My son turns 22 today! 20 years of living with autism. For those of you who are still raising little guys, it does get better.


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## Lon

update from Lon:

well, this school year has been going marginally better than last - his teacher this year is much better suited to dealing with his personality and odd behaviors, however there is still an element of aggression with him... A couple weeks ago he picked up a piece of broken plastic off the floor in the hallway and stabbed/poked two other kids with it. He was unapologetic and didn't seem to acknowledge that what he did was wrong.

But apart from a few specific incidents like this, I'm hearing a lot less from the teacher, and other than him being resistant to get his work/exercises done in class on time he seems like he is almost able to keep up. But it requires all kinds of special attention and treatment, and unfortunately we're still waiting on the special development centre to do their assessment in order to get extra resources for him in class.

I just received an email regarding an upcoming field trip to the museum in a week, and just like the one to the zoo last summer I attended (as requested by the school), once again they are requiring either myself or his mom to chaperone him. His mom is pregnant and due around this date. I cannot take this time off work lightly, but I will if I must - I am just frustrated that they seem to make this request so lightly. While he has had the occasional incident at school, and doesn't seem to respond to the consequences the way other kids do, he actually has a very good track record on field trips - on the one I attended he was on good behavior and certainly no worse than many of the other kids when it came to listening and following the group leaders. He has also been unchaperoned on a few field trips with the in-school before/after care program and it hasn't been an issue.

I think the biggest concern the teacher has is that when he is acting out she sends him to the principal's office to do his work and obviously this is a consequence that is not available to the teacher at the museum on an outing. I want the teacher to work towards not having to have myself or anyone else have to be a backup disciplinarian every single time they go on an outing, for one because it affects my performance/attendace at work and secondly because I feel if the school can't coordinate proper supervision they should not be planning field trips...

any suggestions how to approach this in a constructive way with the school?


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## Starstarfish

All I can suggest is to look at this from the perspective of another parent. I'm not sure that this request is "made so lightly" but - when a student has taken to stabbing other students, that's a safety risk. And until he has an assessment that grants extra resources, the school might not be granted the resources to have the man power on staff to assist.

It just seems to me Lon, no offense, but there's kind of dismissive tone about the whole thing, like it's just not quite that big a deal he stabbed/tried to stab other kids, and frankly - you shouldn't have to be bothered with it because it's bothering you at work. That if only the teacher did a better job. If he was unapologetic and didn't see what he was doing as wrong, why would the teacher not assume he'll have no problem doing that again, even if before he behaved on field trips?

Fact is an EA or other assistant might need to be present for your son on field trips or even during the classroom. Part of his behavioral plan might be that the teacher needs backup for him to have cool down time or supervision when he has to be separated from others for behaviors. But until they have the assessment and IEP or 504 or behavioral plan to grant the resources (AKA the money) to hire that person, they might be in a bind. 

So - when is his assessment scheduled?


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## Lon

I understand exactly what you are saying Star, I'm just frustrated because of the length of wait for an assessment that will get resources in the classroom is 18-24 months. I don't know the entire details of the stabbing incident, all I know is that he is so mistrusted that every single accusation against him sticks, and it has become so easy for him to be the villain. He is a sweet child and is no longer even given any benefits of the doubt.

I'm tearing up as I write this because it seems like school is crushing his soul and the result of the neglect for his true needs is honing all his negative traits.

I am realizing he needs something that his school can't offer, and I'm going to have to figure out what and try to get his mom on board too.


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## jin

We have just received diagnosis from doctor that our 4.5 year old is autistic.

The diagnosis used was ADOS-2 and he scored as follows:

Social affect domain scores: 9
Restricted and repetitive behaviour domain: 4

The cut off for autism is 10 while his score is 13 so it is a confirmed diagnosis but mild.

The hospital has asked us whether we want to have an official diagnosis confirmed or leave his medical record as a "suspected" only. 

The immediate consquence is that without official diagnosis he will not be eligible for certain assistance. But in doctors opinion that is not a problem as he is mild and the assistance he would not be eligible for is more aimed at severe cases.

I worry about medical disclosures in the future, would he need to disclose a disorder which could negatively affect him.

I will also check with the school he will go to next year when he starts whether it makes a difference to assistance he might be eligible to receive.

Appreciate any thoughts opinions.


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## Lon

Well here it is 4.5 months since I last wrote on this thread. Since then there have been some developments, and no stabbing or any other hands on incidents. Teacher is still at her wits end about his antisocial behaviors and unwillingness to do his work in class, and still reports that he is falling behind (yet his last written report showed improvements in nearly every category they report on). She says he is still behind the curve with reading and writing, but I have seen continuous improvement from my child at any rate - he is now reading at a much higher level at home, and has matured in many other ways too, he is even occasionally excited about seeing some of his friends/classmates before and after school, and has not tried to blame all of them for his problems nearly as often. 

He is still on wait list (almost 2.5 years now) to get an assessment from the public school board's assessment centre (needed in order for them to be able to assign some resources like an EA or even just a bloody sitfit - we just got word the other day that the school will not provide this, despite their own recommendation to as well as 4 other health care experts so I guess I will just buy one and would have liked to do this long ago but was told they could). Took him for privately paid pediatric occupational therapy and had them come up with a plan and treatments, which are working at home - and we paid them to produce a report for the school to help them implement a plan there but just doesn't go anywhere. He has also seen a pediatrician whom we provided a SNAP report to, and she gave him a 30 second physical and 2 minute consult and suggested he is ADHD and we should consider medication, and made a follow up appointment in June.

So my child's school is useless at actually dealing with an individual student's needs. His 2nd grade teacher this year is far better at handling it than last year's, but she is burned out and with the end of school year approaching is ready to be done. She invested a lot of love and enocuragement for him but was just ill equipped, and the school's resource teacher is enthusiastic about agreeing with all of the professional information, but doesn't actually do anything to make any part of any plan we've tried to set happen.

So this afternoon we met with a different school (catholic board) and the environment there seemed so much better, using more inquiry based learning methods and just so much more accommodation of specific barriers that individual students have. It was going very good and we met with the learning resources teacher who has decades of experience and knowledge... but then when we were discussing my son's barriers and mentioning the 30 second adhd diagnosis, the entire meeting turned into them lecturing us about the benefit of adhd drugs. At the beginning of the conversation the principal asked us parents for what we thought the diagnosis would be and both of us (as far as I can tell) suspect it is either ASD or sensory processing disorder, and even the principal acknowledged that often ASD and SPD can be mislabelled as ADHD... but then by the end she was basically saying drug him so that he is euphoric and can cope with the sensory issues better. Let it be clear she is not a doctor or psychologist by any means, so I have to wonder if a part of her was saying this as a warning or to scare us away so they do not have to deal with this issue.

I'm thoroughly disappointed with the education system. At this point more than any other, I wish I had the financial means to take a multi year sabbatical and explore learning with my child, teach him, give him the experiences his young powerful and developing mind is meant to have.


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## m00nman

Sorry if I revived a zombie thread that was left for dead. I had to dig it up to introduce my parental plight as the primary caregiver of a 12 year old boy with moderate autism. I wrote a book but deleted it because it was TMI. I'll flesh out our story over time. 

Suffice it to say, our entire family is isolated and estranged because of my elder son's behaviors which are beyond quirky. My wife has given up on him and claims to be depressed, but I'm no expert on such things. I'm more worried about dealing with some horrific things I've witnessed in the past decade and clinging to hope that one day he will have enough skills to take care of his basic living.


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