Need to vent

April 15, 2007

Angel, I'm so sorry to hear that. People can be so ignorant.My daughter is 15 now so I've developed thick skin through the years. And I'm sure I was too over-protective of her. We would go out to eat or whatever when we thought there was the least chance of a crowd. That helped some. And she has done so much better the older she has become. I remember many times of crying, feeling sorry for her AND myself and asking why.I know it's hard to see right now, but things WILL get better. I was lucky. Most of my friends and family understood and supported us. But we live in a small town where everyone knows each other.I remember we were in walmart once and I could see she was going to melt down so I was trying to get us out of there. Going down a crowded aisle there was a small child who was screaming, having a tantrum and my heart sank. At that time Em was 10. She clapped her hands over her ears and screamed "SHUT UP" right in the child's face before

i could do anything. The mother grabbed her up and the grandmother looked at me and said "Nobody talks to my grandchild like that!"I went livid. "She's autistic" I hissed at her. She backed off immediately.I thought how stupid is this person to see my daughter at her age do something like that and not realize she had an issue.That's just one incident of many. But these were the things that happened that made me stronger. You'll have days like you had on this day. Just try to use them to to strengthen your resolve because you will need it.<<<<<<<<HUGS>>>>>>>>>Joni

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April 15, 2007

Angel, I'm so sorry to hear that. People can be so ignorant.My daughter is 15 now so I've developed thick skin through the years. And I'm sure I was too over-protective of her. We would go out to eat or whatever when we thought there was the least chance of a crowd. That helped some. And she has done so much better the older she has become. I remember many times of crying, feeling sorry for her AND myself and asking why.I know it's hard to see right now, but things WILL get better. I was lucky. Most of my friends and family understood and supported us. But we live in a small town where everyone knows each other.I remember we were in walmart once and I could see she was going to melt down so I was trying to get us out of there. Going down a crowded aisle there was a small child who was screaming, having a tantrum and my heart sank. At that time Em was 10. She clapped her hands over her ears and screamed "SHUT UP" right in the child's face before

i could do anything. The mother grabbed her up and the grandmother looked at me and said "Nobody talks to my grandchild like that!"I went livid. "She's autistic" I hissed at her. She backed off immediately.I thought how stupid is this person to see my daughter at her age do something like that and not realize she had an issue.That's just one incident of many. But these were the things that happened that made me stronger. You'll have days like you had on this day. Just try to use them to to strengthen your resolve because you will need it.<<<<<<<<HUGS>>>>>>>>>Joni

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April 17, 2007

HI Angel,

I understand how you feel. I've become rather thick skinned when I'm out in public. I haven't taken my boy to a movie in over 5 years, he is 10 now. The last movie I attempted was Rugrats Go Wild, back then I was still married, well Tony started stimming and humming and we were getting dirty looks and "sshhhhh!!!" for people, so his father took him out so that I could stay in and my daughter could watch the movie. We had to take turns. Well, now, I'm divorced....go figure!! In order for me to go to the movies, I have to leave Tony behind. Restaurants are a little easier, because we usually go to places that are kid friendly and slightly noisy.

As far as friends, if they're really friends, they would love your children. I need to vent about my ex-husband, because he believes that in order to spend quality time, he has to separate the kids!!! Well, I can't clone myself, and I seem to be able to go on with my life with both of my kids together. We go to water parks, bike riding...Tony is in a trailer behind the bike, Disney, fairs, etc...They're "dad" is now remarried to a speech therapist, is that ironic or what??? I have to beg for a little time to myself, because he is always too busy or has some excuse, because he can't stand up to her, she rules his life.

Well, I better stop, cause this is really getting off topic, but we all need to vent. Its not easy being a single mother of 2. I feel for you, having 3 kids, even if they are challenged. I'll have to say that when I see my friends' kids and their sibling rivalry or just spoiled, unruly, bratty behaviors, I thank God for what I have. We love our kids and we are special to have these in our lives.

Hang in there.....and vent with me whenever you want, I can relate!!!

Sincerely,

SylviaSee what's free at AOL.com.

April 19, 2007

Thanks all, and I do feel a lot better, partly because I have gotten

the support and understanding of all of you that reminds me I am not

alone in this adventure called autism, second because sunday my hubby

took us all out to eat at AppleBee's and it was wonderful, the staff

was awesome and so were the patrons. Monday I made a weighted vest for

the youngest, it worked miracles at Wal-Mart, I however have to make

sure I remember to use it and I need to make another one so when one is

in the wash I have a back up! I wish I would have known about weighted

things with the oldest! I am working on a weighted blanket for him now,

and keeping my fingers crossed it will work well for his sleep issues.

making a weighted lap pad for school too......then all I have to do is

fight for him to be able to use it! the fun just never ends!

Thank you all

((((HUGS))))

Angel

Mothering it's not just a job it's an adventure!

April 22, 2007

Angel... Sorry I am late in responding but things have been crazy here and I am only now able to respond to my emails. I am BLESSED to have a couple close friends who are great around my kids including my PDDNOS son. (not happy with the diagnoses but thats for a whole other time) Anyway I had friends who have a crappy attitude about my son but now we only see them ocasionally although none really came out and said anything, you still know by the attitude and demeanor. It is sad that adults can't keep comments to themselves especially when it's really none of their business. I have to admit though when I was a younger adult I felt that kids who were bad needed decipline and have learned as I got older that not all kids who "act out" have a behavior problem but alot of times have other things that are making them react the way they are. There is an autism website that even has business size cards that explains to

people your child has autism and acts out in public. Many times i wish i had gotten them to hand to a rude adult in a store. They are not rude cards but are to the point!!!! If you are interested I wanted to let you know I have a good friend who has a few kids with special needs including aspergers and bipolar and if you would ever like me to get in touch with her so you have someone to talk to online in a similar situation just let me know...i met her a few years ago on a group for people with bipolar because her and I both are...she has been a big help to me over the last 4 or 5 years. Good luck and take care!!!!! SharinGlitter26164 <glitter26164@...> wrote: Hi Angel,Gosh when I read this I felt as if you were talking about me. I go through similar situations. Although it's not as bad as it used to be. I don't know why I let it get to me but it's worse with strangers. You'd think with so much awareness out there and stuff on TV about Autism that people would know how to act when they see a child like ours in public. My 6 yr. old son has Autism and alot of sensory issues. He used to love going to restraunts and had no problem until about 6 months ago. Now I can't even take him into a restraunt. He screams and flips out when we get inside the door. I don't know what changed. I just quit doing it. I did try about a month ago to take him again. I managed to get him into the booth where the

server seated us but had to leave. He threw a fit and wouldn't sit down, screamed and cried, it was awful. His school class takes field trips and they always go to Mcs or somewhere. We always stay home that day. I feel for you so much. When people act that way you just have to understand it's ignorance on their part. I Do like your comment you made to the lady, but you know what? WE shouldn't have to explain ourselves or our children. And if your friends don't understand then maybe their not truely your friends. Hate to say that. Have you told them how they make you feel when they say stuff like that? I sure would. Instead of making nasty comments to you they should offer to help you. Hope it gets better for you and me both. >> I have had it with

"friends" yeah if you were really my friends you > would understand that my kids are part of the package, why can't > people treat us halfway normal? I took the kids out to eat, they > wanted pizza, so we went to Godfathers, we order and go sit down in a > booth, to which Jake ( 2 yr old autistic) begins to stim (self > stimulation) with his usual drone noise. This apparently upsets the > family at the table next to us, they give us nastly looks and move to > the other side of the restraunt, whatever right? well then the family > in the booth in front of us has an issue, the father goes to the > other side to search for an open table while the mother turns around, > hangs over the booth and tells me I need to learn to control my kid, > to which I loudly remark "he is autistic, what the hell is YOUR > excuse?" to which she turns back around in a huff, but then all

eyes > are on us and the whispers begin. Our food comes, I am feeling > uncomfortable so I hurry the kids through thier meal, and we exit the > building, with everyone staring and making comments as we go. > > then we go over to my school to take in a play a friend of ours is > going to be in, we get there 10 minutes early and the first play is > still underway, so we were gonna wait in the hall, until the dorector > tells us we need to go to another part of the building until the play > we were there to see begins because there are "sensitive material in > this play"...........so we go to another part of the building and we > run into the friend we were there to watch, and she suggests we just > go home, which we did, and I got undressed in jammies and put the > kids to bed, I was going to take a hot bath, but I just don't feel > like doing

much of anything except throw myself under the nearest > semi-truck! > > Seriously I have 3 friends that can handle being around my kids with > out getting nasty to them, the rest of my "friends" ask me "why can't > they just be normal?"> > WHY? cause they can't be, it is no physiologically possible for them, > 1 has aspergers and bipolar, the other has bipolar and the youngest > is autistic, how HARD is that to understand...............I feel like > I am supposed to be a hermit, keep my "un-normal" kids out of the > public, only go out when the kids can be left home with a sitter, > WTF. why are we not enitiled to the same family outings as others, > why do people have to be so freakin hurtful and ignorant?> > Thanks for letting me vent, I just need someone who understands >

~Angel>

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April 24, 2007

I have found that there is a fine line that we walk here with this. When I go to a movie I don't like to have to struggle to hear or enjoy the movie either. BUT I understand that my girls are NOT going to be still/quiet etc., So, when I take them to the movies we go to the earliest matinee performance and sit either in the very front or the very back - where if it gets too distracting I can remove them from the situation. Dinner has gotten easier, there a quite a few family friendly places around here, and dh and I always take two cars, so that if something happens, Hope gets unruly or whatever, one of us takes her home. It really is hard - the one place I get "it" the most is at the grocery store, or when people try to get Hope to talk - she finally DOES talk - but many people do not understand her. When I explain that she has only been talking for a year I get that look. I

have found that smiling and thinking of Hope and I as the Team for Autism Awareness helps. horsbuf@... wrote: HI Angel, I understand how you feel. I've become rather thick skinned when I'm out in public. I haven't taken my boy to a movie in over 5 years, he is 10 now. The last movie I attempted was Rugrats Go Wild, back then I was still married, well Tony started stimming

and humming and we were getting dirty looks and "sshhhhh!!!" for people, so his father took him out so that I could stay in and my daughter could watch the movie. We had to take turns. Well, now, I'm divorced....go figure!! In order for me to go to the movies, I have to leave Tony behind. Restaurants are a little easier, because we usually go to places that are kid friendly and slightly noisy. As far as friends, if they're really friends, they would love your children. I need to vent about my ex-husband, because he believes that in order to spend quality time, he has to separate the kids!!! Well, I can't clone myself, and I seem to be able to go on with my life with both of my kids together. We go to water parks, bike riding...Tony is in a trailer behind the bike, Disney, fairs, etc...They're "dad" is now remarried to a speech therapist, is that

ironic or what??? I have to beg for a little time to myself, because he is always too busy or has some excuse, because he can't stand up to her, she rules his life. Well, I better stop, cause this is really getting off topic, but we all need to vent. Its not easy being a single mother of 2. I feel for you, having 3 kids, even if they are challenged. I'll have to say that when I see my friends' kids and their sibling rivalry or just spoiled, unruly, bratty behaviors, I thank God for what I have. We love our kids and we are special to have these in our lives. Hang in there.....and vent with me whenever you want, I can relate!!! Sincerely, Sylvia See what's free at AOL.com. The number of dose related relationships are linear and statistically

significant." "You can play with this all you want. They are linear. They are statistically significant." Bill Weil, M.D., Liaison to the American Academy of Pediatrics ** REGARDING VACCINES.

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January 31, 2008

Oh sweetie, don't inflict pain on yourself. If you need to talk to someone do

that. Find a friend, a family member, or someone you can talk to. Write about

it, draw about it, or whatever but find a positive outlet for your internal

pain. If you have a religious faith--pray about your pain and let your healing

come there. If you don't have a religious faith, you can meditate, learn

positive biofeedback ideas etc. You are an amazing girl, who doesn't let this

illness get her down, so please don't let others rudeness get you down. They

don't deserve to have that power over you.

with much love and concern for you,

e, " joe's mom " age 21 who even with this stinking disease is going to

college full time ashcatgirl and you can achieve your goals too

ash_cat_girl <ash_cat_girl@...> wrote: i am

haveing alot of ppl keeping calling me disabled becuas im on

crutchs but thers so much u can do when u are on crutchs others cant do

and stuff but yes we cant do what others do but we come up still being

able to do stuff that others cant but i am haveing troble with others

calling me disabled and then i keep breaking down in tears and then

sometimes cant talk or write about it so i inflict pain on myself to

help destract the inside pain.

---------------------------------

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January 31, 2008

dear ash_cat_girl,

I am so sorry you are having trouble with feeling so bad about yourself because

you have to be on crutches. I want to tell you something about me and why I

think you are special! Our little 5 year old grandaughter has had the symptoms

of JRA since thanksgiving with hospital stay etc. They still have not diagnosed

her but she continues to show the symptoms. I want to share my feelings for her

and for you!

I am 56 and have had numerous disableing health probs for about 5 years and have

been diagnosed with ms.

From my perspective...you are really lucky! You have the opportunity to help

others because you know what it feels like to be in this boat! You have learned

such valuable lessons about life at a very young age. Most people don't have the

opportunity to learn these lessons. YOu have two choices..one to think about how

awful it is to have this horrible disease and respond with turning inward. The

other choice is to turn outward and see your disease as an opportunity to help

and deeply understand others that have chronic or life threatening diseases.

That is what will eventually define you..who you are and what your life will be

like.

I have a friend that has a teenage son who at the age of 5 was diagnosed with a

life shortening hereditary heart disease. He KNOWS he will not live to be very

old. He has to go into the hospital where they patch his vessels constantly and

there will be a time when that can't happen any more. What this young man has

done is turn his attentions on others who are in the hospital suffering from

terminal illness. He sits by their bedsides talking to them in lonely times and

holds their hands and listens to them. He can only do this becuase he KNOWS what

it is like. Can you imagine the pain he must see???but above all else..can you

imagine what comfort he brings to these people for you see he has turned his

heart mind and soul to reaching out to others. You don't have to do what he is

doing but what could you do to help others??

What choice are you going to make??? I am here for you sweetie and praying for

you!

Cynde

need to vent

i am haveing alot of ppl keeping calling me disabled becuas im on

crutchs but thers so much u can do when u are on crutchs others cant do

and stuff but yes we cant do what others do but we come up still being

able to do stuff that others cant but i am haveing troble with others

calling me disabled and then i keep breaking down in tears and then

sometimes cant talk or write about it so i inflict pain on myself to

help destract the inside pain.

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9:51 AM

February 1, 2008

Hi ,

I am glad you vent about what bother's you. Being on Crutches is not

being Disabled. Society put's Labels on everyone.

I have a Step Dad who at the age of 11 yr's old was a active kid and

enjoyed everything he could do. He lived up in the West Virginia Coal Mine

Country. He was in a Accident and lost his Leg. Back then the only thing they

could

do was fit him for a wooded peg to help him walk. But those Crutches was

always what he used to get around.

He sit's and talks about his younger days. Nothing could stop this young

boy. He used those crutches to his Advantage. He learned to run on those

crutches. His siblings will say he never allowed anyone to get the best of him.

He would be running and jump fences on his crutches. Do not try this ok as he

could have gotten hurt. But he never allowed anyone to say he could not do

what he wanted because he had lost his leg. As he got older he would use those

crutches to get around better than anyone that had 2 legs.

My Step Dad Did what he wanted. He went to School and became a Barber.

Then went to School and became a Meat cutter. He worked and Traveled to every

State in the USA. He got to meet so many people in his lifetime.

His crutches was his life line to doing what he wanted in his Life. He had

to work harder to where he wanted. But he enjoyed Traveling. On his 1 leg he

has traveled more than if he had 2 legs. Was he Disabled? No way and he will

tell you he was not Disabled. If he sat and listened to other People he would

have become Disabled by what that said.

When he lost his leg it was 1933. He has never looked at his self as

Disabled. When he finally got a leg he learned to use it. He could not run with

it. But it helped to walk and he walked with a limp. But he did not care as he

knew who he was and what he could do.

When my Mom and him got together. He learned me to swim. Not in a pool.

But he took me to the River. lolol. There was place which was a safe area and

he taught me to swim out in the water and he said ok now I have only 1 leg

and can swim I know you can do better than me as you have 2 legs. Well I

learned to swim and dive into the water. He was a real swimmer and he could dive

off the High rocks with no problem. He would make sure there was nothing for him

to hit in the water then go for it.

learned her Grand pa had 1 leg when she was 3 yrs old. Scared her

really bad. As she said Pop why ain't you bleeding. He had to tell her the

Story that he told all his kid's. A BIG Bear ate it when he was younger.

lololol. He would later tell the kid's what really happened.

Was my step dad Disabled? No. He learned to get through life with what he

had. He became a Dad age the age of 50 ended up with 12 kid's.

He learned to drive a car with 1 leg as well. Today he is 85 yrs old. He

didn't slow down til he was 80 yrs old. When he drove his self to the

Hospital when he had a Heart Attack. He had a 5 bypass surgery and will not

drive

now as his age the Insurance went up due to his age. Did that stop him? Ummm He

drives a Scooter everyday. He still get's around. He may be slower at times

but he get's out and talks about his past.

Did those crutches stop him? No way. Did people say he was Disabled? Yes.

He lived a life in which he wanted. Did what he wanted. No one stopped him

by words.

He still wears his Leg which he puts on each morning. He can not use the

crutches as much now due to his balance is not good on them. But if needed he

would use them.

Being Disabled is a word. Some call it Differently abled. Do not let

anyone tell you something your not.

Words is all it is. If some calls you Disabled just remember they too are

disabled as they are unable to see past those crutches. People should see a

person's Heart instead of what they see outside.

Beauty is only skin deep. God makes us all different so why should we

only see the outside. When there's always a Heart to go with each person. Each

person has feeling which words can cause hurt.

You should never allow what other's say cause you to inflict pain on

yourself. You can do whatever you put your mind to.

Robbin

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

May 19, 2008

I think you did remarkably well for not telling her to off. That is so

awful, and terrible and that lady should be ashamed of herself, just consider

the

source. Next time be prepared. Sometimes when something like that happens it

catches you off guard because you cannot believe that someone is actually

saying that and teaching their child that kind of behavior is acceptable. Next

time be fully ready to approach the woman and say " Pardon me " I couldn't help

but over hear you calling my child crazy. " I think the crazy person is you. "

My son is a wonderful person and if you don't like it, don't come her anymore

but don't talk about my son that way or I will report you. Don't be afraid

of anyone. She sounds like a terrible person. Hang in there, Jen

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May 19, 2008

My sister-in-law's mother once stated that my son " doesn't like people "

because he cried hysterically upon entering a room of strangers. It's

not that he doesn't like people...he has SPD in addition to his speech

apraxia and was feeling overwhelmed. I try to comfort myself by

reminding myself that ignorant people say stupid/rude things. This

other mom at the gymnastics class sounds very ignorant. I'm sure your

son is a wonderful boy!!!

Char

>

> I took my 27 month old son to gymnastics class today. I'm trying to

> help him work out some hypontonia issues. He does not have any

> diagnosis. He is a very active little boy and likes to run around.

I

> keep my eye on him and follow him at all times, just like any mom

would.

>

> This so-called mom keep telling her son to stay away from my son.

She

> kept telling him that my son is " crazy " . I was and am still very

upset

> by her rude comments about my wonderful little boy.

>

May 20, 2008

Sadly, there are a lot of ignorant people out there. Tone is an issue

here too and at one time my other child was " that crazy kid. " One thing

that helps the active kid organize and focus is a minitramp. That and

the log roll exercise have been a Godsend here.

Someone on another board is looking at bricing for a mechanical bull

type thing to help with her kid's tone issues. If I get any info I

will post. It would be nice if it were affordable.

Lastly, Janice and others have posted on hippotherapy and riding in

general. NOt sure if that is an option for you but I am just putting it

out there.

If gymnastics helps your child then simply and quietly ask the mean mom

to stop calling your child crazy because it is rude and unkind.

Best Wished!

HTH

Liz

>

> I took my 27 month old son to gymnastics class today. I'm trying to

> help him work out some hypontonia issues. He does not have any

> diagnosis. He is a very active little boy and likes to run around.

I

> keep my eye on him and follow him at all times, just like any mom

would.

>

> This so-called mom keep telling her son to stay away from my son.

She

> kept telling him that my son is " crazy " . I was and am still very

upset

> by her rude comments about my wonderful little boy.

>

May 20, 2008

The iGallop from tone has been recommended by many of my special

kids groups with tone issues. Its cheaper than hippotherapy and can be

done at home!

> >

> > I took my 27 month old son to gymnastics class today. I'm trying to

> > help him work out some hypontonia issues. He does not have any

> > diagnosis. He is a very active little boy and likes to run around.

> I

> > keep my eye on him and follow him at all times, just like any mom

> would.

> >

> > This so-called mom keep telling her son to stay away from my son.

> She

> > kept telling him that my son is " crazy " . I was and am still very

> upset

> > by her rude comments about my wonderful little boy.

> >

>

May 20, 2008

what does spd stand for?

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May 20, 2008

Thanks Mo! What a great idea! I don't see us getting horse $ any time

soon.

>

> The iGallop from tone has been recommended by many of my special

> kids groups with tone issues. Its cheaper than hippotherapy and can be

> done at home!

>

May 21, 2008

I don't know about that...... kids with hypotonia do still run and go amok at

times! They may be less energetic then other kids but this does not hold true

24/7.

I quite remember chasing my severely hypotonic little boy around the gymnastics

class when he was 2! He wouldn't listen either and it drove me mad.... I can

remember ending the Parent and Tot classes rather exhausted, much more then the

child! It is interesting to note that quite often our kids are unable to stop

running once they begin. When my son was little he had to fall to his knees

once he got going.... such was his inability to plan his motor actions. (This

actually lasted until he was about 5 or 6).

I think that sometimes when people are rude, you must simply ignore them or at

least try your best to. It truly reflects a lack of character on her part and

this woman's nastiness hopefully was due to menses coming on! Otherwise, who

would want to live with her.... She embarrasses herself and you need not do

anything but take your son aside and explain to him how wonderful and great that

he is.

The world is full of judgemental people and at times, I am sorry of what our

children perpetually see. For children with global dyspraxia often do witness

the 'ugly' side of other people. I think this is what makes dyspraxic youth so

'deep'. My son has a depth to him that is unusual for one so young but that

seems to be usual for a kid with global dyspraxia. There is an understanding of

human character and an ability to 'get' others that he has.....

I think part of his perceptual abilities are derived, in part, from witnessing

the response of others to his dyspraxia throughout the years. In some ways this

is both his gift and his curse. You see.... others don't see the dyspraxia,

they just see the weak child.... a person who is obviously weaker... to pick on

and to use to make themselves feel superior. It is Darwinism in its worst form

to watch your own child get victimized over and over again. Like a magnet, the

weaker child seems to attract the bullies who feed off of his frail body.

I have often observed that even the nicest of children will taunt a child with

dyspraxia but this goes for adults and teachers as well as other kids as you are

now finding out. Thus, take this woman's actions as a cue to protect your son.

There is something about the vulnerability of a dyspraxic child that can

literally bring out the monster in others. I don't know what it is but I have

seen it so often and have had to advocate for my son through the years

tremendously due to this odd trait. I have seen kids who were perceived by

others as nice reveal their true characters! I tell you this not to disparage

other children but to put you on guard for your child.

But at the end of the day, my son can now hold his own. Not only that, he is a

trustworthy source (whom I sometimes jokingly call, " The Rat " as I get the 'real

goods' from him) and I value his judgement on the opinion of others. He really

has a good sense of others but this good sense has been learned the hard way.

He got quite a few knocks through the years.

You are going to have to determine how you're going to handle those who choose

to act inappropriately and what lessons you want your son to learn. He must

learn to stand up for himself but you don't want him to learn malice or hatred.

You want him to learn patience and sympathy for the idiocy of others. You boy

also must learn to tell his mom when others make him feel badly with their

scorn. He must learn that you can protect him from bullies and that 'telling'

is a good thing. He must feel safe and cherished at all times.

This silly woman matters not in the grand scheme of things. She is only here to

give you a lesson as to how you are going to proceed in these types of

situations for you will face them in different modalities over and over again

through the upcoming years.

My boy and I are at the end of this time and we have learned our lessons with

regards to how some people treat those who are obviously weaker.... many of our

lessons were not a lot of fun but we survived as better people for it.

Hope that I did not depress you too much but I do want to warn you because you

will not always be at your sons side to witness the cruelty firsthand but he

still needs your protection. Now that you've seen it.... multiply it by 500%

for when you are not there standing next to your boy as a force to be reckoned

with. You must build him up so that he can take this on. And you must believe

him when he tells you that someone has been mean to him and trust him.

Janice

Mother of Mark, 13

[sPAM][ ] Re: Need to Vent

Typically the words " very active little boy and likes to run around "

and " hypotonia " wouldn't be found in the same sentence! Most with

hypotonia are a bit on the lethargic side. Who diagnosed your

child? Also hypotonia wouldn't create a child viewed as " crazy "

And not that the diagnosis of ADHD or sensory integration dysfunction

means " crazy " either -but (amongst other things) they may be viewed

this way from the outside looking in. My one son is ADHD -while my

other had sensory issues -so I know both can be viewed as having odd

behaviors. Why is this mom warning her child to stay away from your

son? If it's just due to your son being active and running around -

that falls well into the norm of a 2 year old! It's understandable

to be upset -but no harm in taking the high road. I'd go right to

the source and ask this mother if my child did something that hurt

her child in some way that I wasn't aware of. I wouldn't mention " he

has hypotonia " because again that has nothing to do with running

around or being very active. He's a little boy! If you don't want

to talk to this other parent you can talk to the person in charge of

the class and discuss the situation with them in private. Let them

confront this other parent because they would also have the ability

to ask her to leave the class if her actions are found to be

unwarranted. On the other hand by not confronting this other mother

direct she may point out to the instructor that your child did ____

or ____ to her son which you were not aware of which is why she is

warning him to stay away now. As much as we may keep an eye on our

kids -we can't watch every second of what they do. Kids will be

kids.

I'm sure no matter what you are correct that you have a wonderful

little boy. Little boys (or girls)..or parents..are not perfect. We

all can act a bit crazy at times -but for 2 year olds -that's par for

the course.

On another note -you really do need to find out for sure what your

child's diagnosis is -second opinion if you already did. (and if you

did- what type of MD gave you the diagnosis -and where is the low

tone/hypotonia and how severe?) Also is your child in therapy for it?

(early intervention therapy such as OT- not gymnastics which is

private)

=====

May 21, 2008

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May 21, 2008

Your son has hypotonia, but you said that he has no diagnosis. Does he have

Apraxia of Speech?

I can understand that it's hurtful to have other mothers say things like

this-- but my first thought when I read your comment was that you don't know

what she was referring to when she made the comment. Is it possible that your

son and her son aren't getting along in the class and that they've had some sort

of previous altercation that would have her say this? I don't take it to

mean that she's talking about his issues or about any disability sort of thing,

but I took it to say that perhaps there was some sort of personal conflict

issue between the two and she said it that way.

Maybe talk with her face to face and outright ASK her why it was that she

made that comment. Just go right up to her and say " Hello! I'm so and so's

mother, and last week you mentioned to your son to stay away from my son

because he's Crazy and I was just wondering if the boys have had any personal

conflict in the class that has been a problem?

and see what happens

good luck!

becky

In a message dated 5/19/2008 2:13:24 P.M. Eastern Daylight Time,

lindaching@... writes:

I took my 27 month old son to gymnastics class today. I'm trying to

help him work out some hypontonia issues. He does not have any

diagnosis. He is a very active little boy and likes to run around. I

keep my eye on him and follow him at all times, just like any mom would.

This so-called mom keep telling her son to stay away from my son. She

kept telling him that my son is " crazy " . I was and am still very upset

by her rude comments about my wonderful little boy.

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May 21, 2008

I don't mean to sound like the nay sayer here, but I have to ask-- what

would this sort of comment ACCOMPLISH?? It would outright cause a larger scale

issue and wouldn't diffuse the situation any. It certainly might FEEL good to

say and to vent, but long term, it will do nothing other than cause both

parties more anger and more issues.

I still wonder if there was some sort of misunderstanding in this situation?

I think it's always wisest to go into the situation to try and diffuse the

problem and give the person the benefit of the doubt until you know for

certain how they meant the comment. Were here words kind? Absolutely not-- no

one's denying that! But to assume she's referring to the child and his issues

isn't a great idea.

Let me give a perfect example. My own son (5 1/2 and neural typical one--

NOT my Apraxic son) are in a gymnastics class. Evidently there are these two

siblings, a boy and girl, who are REALLY not getting along with my son and vice

versa. They just clash. Now-- their mother approached me immediately and

was QUITE RUDE in her comments about Asher-- and called him a bully, and nasty

etc. Truth be told- this child is the exact OPPOSITE and has never had

issues with any other child for the last 5 1/2 yrs.

BUT-- I didn't want to assume that there wasn't an issue, because obviously

she thought there was.

So, in observing the class -- turns out that her kids would taunt my son and

he got annoyed with them and tried to get away from the situation, so tried

cutting in line to get away from them. Of course cutting in line is wrong, so

they got angrier and that caused more problems and they would have words. My

son would always protect himself-- including physically pushing BACK when one

would push him. So-- there definitely was conflict there, and it was really

BOTH parties. Was my son the bully? Nope-- LOL but he also wasn't

" blameless " in the situation either because he didn't handle the situation in

the

best way.

So-- I think that when we're dealing with children who are in a class time

together-- there is likely to be issues-- and rather assume that the mother was

talking about the poster's son in a negative way do to any personal issues

or disability that he has, I would first see WHAT she's referring to and then

take it from there.

just my thoughts

Becky

In a message dated 5/20/2008 7:33:43 A.M. Eastern Daylight Time,

jennyjudy@... writes:

help

but over hear you calling my child crazy. " I think the crazy person is you. "

My son is a wonderful person and if you don't like it, don't come her

anymore

but don't talk about my son that way or I will report you

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May 21, 2008

this is GREAT to know-- thank you!

In a message dated 5/20/2008 2:04:54 P.M. Eastern Daylight Time,

mosense@... writes:

The iGallop from tone has been recommended by many of my special

kids groups with tone issues. Its cheaper than hippotherapy and can be

done at home!

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May 21, 2008

,

Your boy and my boy could have been twins! But my son did not start getting

dyspraxia until he was about 2 so he walked right on time just one week before

his first birthday. (No.... my son was not born with it).

For the mouth we have done a LOT of work and here are what enabled normalcy in

this area for my boy:

- Elimination of milk products; or find the source of the excess saliva. He is

congested and this must be addressed. This can be a physical problem with his

tubes or it can be a food intolerance issue. Whatever the case, you need to

play detective here and resolve this. For us and many others, it was completely

food related.

- Toning up the mouth. We needed to work all areas of the mouth, jaw, lips and

throat to affect good speech. So.... we used a plastic appliance called a

Myomunchee which we inserted into my sons mouth everyday and he would chew,

chew, and chew some more. We provided him with a lot of chewing opportunities

to work those facial muslces. Celery is a good chewy item too (your son may be

a bit young to chew it yet... but you get what I mean). You need to find many

different ways to work that jaw strength.

Blowing bubbles, horns & straws program by Talktools.net all work the lips and

are very good for our kids. This also works airflow and our kids tend to be

poor breathers so as much work as you can do in getting them to suck air into

their diaphram, the better.

Oral motor therapy. Once we get the jaw strong, the lips strong.... we need to

work that wiggly tongue (it just does not want to cooperate with our kids).

Oral motor exercises work wonders with our kids with little motor planning in

their mouths. Moving the tongue and getting it to go up to the top of the mouth

and down is really tough for our kids! Moving the tongue from side to side

without slanting the jaw is tough too! You also want to work the velum and

opening and closing that passage at the back of the throat. My son's voice has

a bit of a nasal quality to it and I think it is because of this velum. I

haven't quite spent the time to worry about it since it isn't all that bad.

All of these areas as well as the vellum need to be worked. You are currently

getting the hang of working the trunk and the arms. Don't quit here for you are

right on track and need to continue to work core body strength and tone.

We continue to work this with my 13 year old and have just got him his own YMCA

membership (lots of teens there) where he can go and work the weights on his own

each day. It is a lifetime of work for our kids and they just have to become

people who go to the gym! Build the core tone strength and everything gets a

lot easier. Note that his legs are definately stronger then his hands and arms

which are really, really weak. He jokes that a 3rd grader could beat him in an

arm wrestle! But he really has liked going to the gym and working on this on

his own now. I see that weight lifting is really going to help with this.

Before that we did core strengthening by lifting a medicine ball..... and before

that, we did what you did.... wheelbarrow races and time at the park doing the

monkey bars. It is a definate progression and the fine motor areas tend to be a

lot tougher then the face but the face still needs a lot of work.

Hope this gives you some direction as to where to begin. There are a lot of

books on oral motor therapy. Check out Super Duper Publications and find

yourself a good book with practice exercises that you can do daily on your own

to see much faster results.

Janice

Mother of Mark, 13

[ ] Re: Need to Vent

> Typically the words " very active little boy and likes to run around "

> and " hypotonia " wouldn't be found in the same sentence! Most with

> hypotonia are a bit on the lethargic side. Who diagnosed your

> child? Also hypotonia wouldn't create a child viewed as " crazy "

> And not that the diagnosis of ADHD or sensory integration dysfunction

> means " crazy " either -but (amongst other things) they may be viewed

> this way from the outside looking in. My one son is ADHD -while my

> other had sensory issues -so I know both can be viewed as having odd

> behaviors. Why is this mom warning her child to stay away from your

> son? If it's just due to your son being active and running

> around -

> that falls well into the norm of a 2 year old! It's understandable

> to be upset -but no harm in taking the high road. I'd go right to

> the source and ask this mother if my child did something that hurt

> her child in some way that I wasn't aware of. I wouldn't

> mention " he

> has hypotonia " because again that has nothing to do with running

> around or being very active. He's a little boy! If you don't want

> to talk to this other parent you can talk to the person in

> charge of

> the class and discuss the situation with them in private. Let them

> confront this other parent because they would also have the ability

> to ask her to leave the class if her actions are found to be

> unwarranted. On the other hand by not confronting this other mother

> direct she may point out to the instructor that your child did ____

> or ____ to her son which you were not aware of which is why she is

> warning him to stay away now. As much as we may keep an eye on our

> kids -we can't watch every second of what they do. Kids will be

> kids.

>

> I'm sure no matter what you are correct that you have a wonderful

> little boy. Little boys (or girls)..or parents..are not

> perfect. We

> all can act a bit crazy at times -but for 2 year olds -that's

> par for

> the course.

>

> On another note -you really do need to find out for sure what your

> child's diagnosis is -second opinion if you already did. (and if you

> did- what type of MD gave you the diagnosis -and where is the low

> tone/hypotonia and how severe?) Also is your child in therapy

> for it?

>

> (early intervention therapy such as OT- not gymnastics which is

> private)

>

> =====

>

May 22, 2008