Re: would you explain your son's AS behavior to the other parents?

[Guest guest]

I would prepare a short statement, matter of fact and scientific/clinical, and print it out, and give to each parent. Believe me, if it comes to one of them seeing your son doing something aspie, going over and using THE VOICE to get your child to get with the program (thinking they are helping) all heck can break loose. My son's fencing teacher did this (oh, i forgot he had asperger's, she said later after my son ran screaming from the building).

So no, I don't think ignorance is bliss here. A lot of people have heard of Asperger's recently due to the Parenthood TV show so it will probably be okay.

Geneva

[Guest guest]

Karla,Our son just started his first team sport too. (t-ball) We did tell the coach and team mom because we felt comfortable sharing our story with them. My son is very emotional too, so when he does get upset, he usually cries. We've already had one episode, thankfully it was minor but he didn't want to return to the sport. After lots of talking, he is giving it another try. As far as the other parents go, we haven't shared with them. Not because we don't want to, but because we'd rather let it come up naturally. He too, pretty much sticks to himself and hasn't really made any "friendships" with anyone. Don't think he quite understands the concept of "team" yet.Hope this helps some.From: jojubemom <karlakahler@...> Sent: Tue, March 22, 2011 8:52:44 PMSubject: ( ) would you explain your son's AS behavior to the other parents?

DS is 4 and we are bravely entering the world of pee wee soccer! And I have also bravely volunteered to coach his team. I knew going into this it could be good, as in fun and a bonding time, or it could go badly since DS is very defiant and very argumentative, esp with me.

So we go to our first practice and all is going very well. He is there, even though not really "getting" what the drills were about, but he wasn't arguing or melting down. About half way through the 30 min practice he tells he is thirsty. This is one of the things he can obsess about. I tell him that we will get a drink later. yeah, stupid me didn't bring a water bottle. Thankfully he didn't freak out at the lack of water.

Moving on to the next drill I find DS way off to the side playing by himself. Pretty par for the course for him and frankly I am glad he is not disrupting everything. He had just had enough and was ready to go toss some rocks. Every now and then I would call to him and encourage him to come and join us, but he really was fine to be all alone.

One of the dads who was helping went and brought DS over and DS did the last little drill with us and it all ended well. I have thought about whether or not I should mention to the other parents that DS has Aspergers and at times may seem to zone out or at other times, he might freak out. But on the other hand, I don't want to make more of something that today really went okay. I do know that during our 7 week season, they are bound to see a complete meltdown at some point.

What would you say to the other parents, if anything? there are 7 four year old boys on the team including DS.

karla

[Guest guest]

This letter is what we did over the years.

This one was from years ago.

We would adjust it ever so often, as needed.

Robin

Hi.

I am putting this together so that we can let you know the “workings†of Ian, and possibly our family, a bit better.

Ian was diagnosed with Aspergers/ADHD and mild Tourettes Syndrome about 3 1/2 years ago.

Aspergers – also known as high functioning autism – is a neurodevelopmental disorder (sensory processing disorder) that makes it hard for him to always understand what is going on around him as well as understand social "correctness" and respond the "correct" way in social situations. He also may seem very immature and "wild" one moment and quite serious the next.

He may be SO into something that he won’t hear a single thing going on around him, or, on the flip-side, he may hear absolutely EVERYTHING that’s going on,,, from everyone talking, to the fridge running,,, and that can cause a lot confusion and problems concentrating for him. He often has a “dazed†look on his face or may appear to be looking “through†you…………this is a perfect example of him trying to “sort the stuff out†before responding. He hears you……he just needs time.

We and his teachers have found that asking him to look you in the eyes can help. One thing we KNOW is that the only thing consistant about Aspergers is its inconsistency.

As far as Tourettes Syndrome…..he has some of the “simple†characteristics, or “mild†characteristics. He, at times, wiggles and moves his shoulders around as if trying to itch something away without being able to use your hands to scratch. When he is having these moments, it is very hard for him to sit still. He also may repeat things he has just heard. This is called echolalia. He usually says the things quietly and they don't seem to be a disruption, but this does happen from time to time.

Sometimes he makes noises such as saying “hoo hoo†or different noises with his mouth. He also may call (or shout) something out. We don’t punish him for them, but at times ask him to please try to keep it quieter. Sometimes it works, sometimes it doesn’t. We have noticed that the noises seem to come more when he is NOT focused on, or doing, something.

People within the autism spectrumm, (a term used to define many disorder's such as ADHD, ADD, Obsessive-compulsiv e disorder (OCD), tourettes, autism, asperger's, Opositional defiant disorder (ODD)), often “do†things or collect “things†to make themselves feel “rightâ€. They often excel at things that require “specificsâ€. Ian has an incredible memory and is awesome at math. He is amazing at the computer as well as video games.

All kids have toys they like and may even collect things too. The difference is that, for Ian, it is almost like a compulsion. He wakes up for it, lives for the moment to do it and simply wants to DO these things all the time. These behaviors are called â€persaverative behaviors†and doctors say they are good to a degree because they are what the person “knows†and it helps them feel calm and safe.

It may not seem very wise to let him play his games so often and for him to be so “into†it, but this is how we are choosing to live and deal with this. We are constantly learning and reading about this and really appreciate your understanding.

We also have to watch him carefully. Not so much now physically, because he is getting older and getting more independent. But, we watch him more now because of the differences between he and the other kids. Most kids won't say things, but some do. Some kids can be very cruel and we have to be his advocate and demand that it doesn't continue. We have been told that because he WANTS friends and WANTS social interaction, that he may fall into the wrong crowd or simply ANY crowd that pays him attention. That being said, he may be used and not even know it. We also need to be around him to help teach him how to function better socially with other kids. This doesn't come naturally to

him. He will "get it" by repetition.

Physical play makes him wound up. If there is contact, he will either be very aggressive and not understand to “tone it down†or he may get very upset and even angry that he was bumped in to or that a ball was taken away from him – not understanding that that is what happens in certain games.

Before we had a diagnosis, we were embarrassed by his behavior or when things “happenedâ€. We were hard on Ian, expecting him to stop and getting angry because we just thought he was stubborn. And we were harder on our selves,,,, wondering what we were doing wrong and knowing we were being looked down upon and criticized for not having a child who would pay attention and listen and behave. We knew that we were losing friends because of the chaotic way our family seemed.

We now choose to look at it this way: Ian is an incredibly good, funny, loving, energetic, brilliant young guy who we are blessed to have been given. We are a family that has all the time and love in the world to be with him and help him when needed. So, we feel honored and try to remind ourselves of this every chance we get.

Ian knows about these issues he deals with. He knows he takes medicine and why.

So again, we are writing this up so that it may help you understand a bit more when dealing with us and/or Ian. He truly is a great kid.

Please feel free to ask us any questions or call us any time.

Thank you for taking the time to read this.

and Robin

9**-****

jrisjs (DOT) com

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[Guest guest]

We put my son in regular sports and he just had the hardest time - constantly fighting at every base, getting injured because they would throw the ball at him, kid pushing him off the benches and kicking rocks at him, snacks he could nto have at every game and practice was the insult on top of injury for us, and he would not respond quick enough, etc, Now at 8 he is doing special needs baseball, soccer and Special Olympics basketball- they go to State soon- yeah for him and his team! Telling the coaches on the regular team did not help because they just did not get his needs or how to accomodate for him and they were too caught up in the win win of everything. He has been so much more successful and had so much more fun and made so many more friends on the special needs teams. They get when he

has a meltdown and no one gives him a hard time if he tries to get the ball every time. They coach him still and teach him things but it is more relaxed and no one expects full disclosure either. They are all willing to just help each other and are very tolerant of differences, because all their needs are so different. I think it has taught him that he is not alone and that he needs to be tolerant of others. Many of the kids are on one end of the spectrum or the other, btu some just have physical disabilities, but the thing is everything is just a little mroe relaxed, a little slower, a little mroe patient and with a lot more kindness and emphasis on fun and helping one another and teamwork. I can not say enough about how these special needs teams have been such a godsend to my son who was ALWAYS the outcast being picked on , ignored, left out , and spoken about not so nicely by other parents who just did not get it and were

down right mean people at the regular team games. The last season he played he was hit directly in the face with a ball and had a bloody nose. Paramedics were there as parents and left us to deal with him, and not one person stepped in to get us a towel, ice, or to speak to any of us, as blood gushed down my sons face all over hit white baseball uniform. He lived, we lived, but I do not think I will even trust him to those teams again. All they cared about was winning and their kid being a superstar. It was too intense and the parents were too invested in it, living their childhoods through their kids. Maybe I just had a bad experience or maybe that is just how it is here, but everything cahnged when we switched to the special needs teams. Parents were comign to the games of our kids whose kids teams did nto make it to regionals just to support the other kids this past weekend. I was so moved I almost cried. We are home adn everyone is family and we all

look out for each others kids. When someones kid is missing ( went ot eh bathroom without telling anyone) we all go into search mode. When someones kid is having a rough day we support the parents. any we network and share info abotu therapists, doctors, etc. we become our own support group on the sidelines. I just can not say enough good about it for the kids or for the parents- special needs teams are win win for us.

From: Abatangelo <stephanie.abatangelo@...> Sent: Wed, March 23, 2011 3:09:44 PMSubject: Re: ( ) would you explain your son's AS behavior to the other parents?

Karla,Our son just started his first team sport too. (t-ball) We did tell the coach and team mom because we felt comfortable sharing our story with them. My son is very emotional too, so when he does get upset, he usually cries. We've already had one episode, thankfully it was minor but he didn't want to return to the sport. After lots of talking, he is giving it another try. As far as the other parents go, we haven't shared with them. Not because we don't want to, but because we'd rather let it come up naturally. He too, pretty much sticks to himself and hasn't really made any "friendships" with anyone. Don't think he quite understands the concept of "team" yet.Hope this helps some.

From: jojubemom <karlakahler@...> Sent: Tue, March 22, 2011 8:52:44 PMSubject: ( ) would you explain your son's AS behavior to the other parents?

DS is 4 and we are bravely entering the world of pee wee soccer! And I have also bravely volunteered to coach his team. I knew going into this it could be good, as in fun and a bonding time, or it could go badly since DS is very defiant and very argumentative, esp with me. So we go to our first practice and all is going very well. He is there, even though not really "getting" what the drills were about, but he wasn't arguing or melting down. About half way through the 30 min practice he tells he is thirsty. This is one of the things he can obsess about. I tell him that we will get a drink later. yeah, stupid me didn't bring a water bottle. Thankfully he didn't freak out at the lack of water.Moving on to the next drill I find DS way off to the side playing by himself. Pretty par for the course for him and frankly I am glad he is not disrupting everything. He had just had enough and was ready to go toss some rocks. Every now and then I

would call to him and encourage him to come and join us, but he really was fine to be all alone.One of the dads who was helping went and brought DS over and DS did the last little drill with us and it all ended well. I have thought about whether or not I should mention to the other parents that DS has Aspergers and at times may seem to zone out or at other times, he might freak out. But on the other hand, I don't want to make more of something that today really went okay. I do know that during our 7 week season, they are bound to see a complete meltdown at some point.What would you say to the other parents, if anything? there are 7 four year old boys on the team including DS.karla

[Guest guest]

I would tell the coach and I would tell most parents nothing.

I have only told parents with kids with autism kids too, others don't get it.

Pam

>

> DS is 4 and we are bravely entering the world of pee wee soccer! And I have

also bravely volunteered to coach his team. I knew going into this it could be

good, as in fun and a bonding time, or it could go badly since DS is very

defiant and very argumentative, esp with me.

>

> So we go to our first practice and all is going very well. He is there, even

though not really " getting " what the drills were about, but he wasn't arguing or

melting down. About half way through the 30 min practice he tells he is

thirsty. This is one of the things he can obsess about. I tell him that we

will get a drink later. yeah, stupid me didn't bring a water bottle.

Thankfully he didn't freak out at the lack of water.

>

> Moving on to the next drill I find DS way off to the side playing by himself.

Pretty par for the course for him and frankly I am glad he is not disrupting

everything. He had just had enough and was ready to go toss some rocks. Every

now and then I would call to him and encourage him to come and join us, but he

really was fine to be all alone.

>

> One of the dads who was helping went and brought DS over and DS did the last

little drill with us and it all ended well. I have thought about whether or not

I should mention to the other parents that DS has Aspergers and at times may

seem to zone out or at other times, he might freak out. But on the other hand,

I don't want to make more of something that today really went okay. I do know

that during our 7 week season, they are bound to see a complete meltdown at some

point.

>

> What would you say to the other parents, if anything? there are 7 four year

old boys on the team including DS.

>

> karla

>

[Guest guest]

I am the coach The reason I ask is that even though I am the coach, with

the kids being as small as they are (most are 1.5 years away from starting

kindergarten, so young 4s) the parents always step in and help. Like today, we

had 6 kids at practice and about 7 adults helping.

It is non-competitive at this age level. There is no score keeping (officially)

and no wins or losses. The boys are only 4, so I am not so worried about the

competitiveness and DS being picked on b/c he is not as good as the others. We

have a wide range of skills and " understanding " among the seven boys on the

team.

I guess I just don't want the other parents to be overly worried if DS decides

he is going to pick dandilions instead of doing a particular drill or if he has

a meltdown b/c he does not want to wear his shin guards at practice.

karla

> >

> > DS is 4 and we are bravely entering the world of pee wee soccer! And I have

also bravely volunteered to coach his team. I knew going into this it could be

good, as in fun and a bonding time, or it could go badly since DS is very

defiant and very argumentative, esp with me.

> >

> > So we go to our first practice and all is going very well. He is there,

even though not really " getting " what the drills were about, but he wasn't

arguing or melting down. About half way through the 30 min practice he tells he

is thirsty. This is one of the things he can obsess about. I tell him that we

will get a drink later. yeah, stupid me didn't bring a water bottle.

Thankfully he didn't freak out at the lack of water.

> >

> > Moving on to the next drill I find DS way off to the side playing by

himself. Pretty par for the course for him and frankly I am glad he is not

disrupting everything. He had just had enough and was ready to go toss some

rocks. Every now and then I would call to him and encourage him to come and

join us, but he really was fine to be all alone.

> >

> > One of the dads who was helping went and brought DS over and DS did the last

little drill with us and it all ended well. I have thought about whether or not

I should mention to the other parents that DS has Aspergers and at times may

seem to zone out or at other times, he might freak out. But on the other hand,

I don't want to make more of something that today really went okay. I do know

that during our 7 week season, they are bound to see a complete meltdown at some

point.

> >

> > What would you say to the other parents, if anything? there are 7 four

year old boys on the team including DS.

> >

> > karla

> >

>

[Guest guest]

Some of the parents may already know what is going on with your child and will be understanding about it. I wouldn't say anything about it unless your son does start blowing his cool, a lot of people are understanding and will try to help you with the situation, and not make you feel uncomfortable, etc. and the others, well not all people can relate and don't seem to have a heart, don't worry about them. Good luck, been there and done most of it, my son is 20.From: jojubemom <karlakahler@...>Subject: ( ) would you explain your son's AS behavior to the other parents? Date: Tuesday,

March 22, 2011, 10:52 PM

DS is 4 and we are bravely entering the world of pee wee soccer! And I have also bravely volunteered to coach his team. I knew going into this it could be good, as in fun and a bonding time, or it could go badly since DS is very defiant and very argumentative, esp with me.

So we go to our first practice and all is going very well. He is there, even though not really "getting" what the drills were about, but he wasn't arguing or melting down. About half way through the 30 min practice he tells he is thirsty. This is one of the things he can obsess about. I tell him that we will get a drink later. yeah, stupid me didn't bring a water bottle. Thankfully he didn't freak out at the lack of water.

Moving on to the next drill I find DS way off to the side playing by himself. Pretty par for the course for him and frankly I am glad he is not disrupting everything. He had just had enough and was ready to go toss some rocks. Every now and then I would call to him and encourage him to come and join us, but he really was fine to be all alone.

One of the dads who was helping went and brought DS over and DS did the last little drill with us and it all ended well. I have thought about whether or not I should mention to the other parents that DS has Aspergers and at times may seem to zone out or at other times, he might freak out. But on the other hand, I don't want to make more of something that today really went okay. I do know that during our 7 week season, they are bound to see a complete meltdown at some point.

What would you say to the other parents, if anything? there are 7 four year old boys on the team including DS.

karla