my son

May 3, 2008

Hi April, I'm sorry to hear your son has been having so many problems.

I trust from your post that you have already seen an immuno, who is

doing the sublevels and this isn't a ped? If not, you should get a

referral from IDF for a good pediatric immuno in your area and take it

from there.

My son was diagnosed with CVID and has been on IVIG since he was 3

months old. He, too, has some GI issues, is on the 'small' side and

fits a lot of what you said. Tiny tonsils is an indicator of a PID.

I think the the most useful tip I can offer you is to try and stay

calm, don't over-research and stress yourself out on the 'what-if's'

and to try to be patient with the testing. If the sublevels show a

problem, they will test his vaccine responses next (if they haven't

done that already). If his body didn't make a vaccine response, that

is a true indicator that something is 'broken' in his immune system.

The treatment they have is IVIG. Basically, it's pooled plasma from

people all around your area and they separate the good, germ-fighting

antibodies and infuse them into your son. Typically it's done once a

month, and you will start out with it being done in a clinic. Mark did

IVIG in the clinic for 3 years, then we moved to homecare so he gets

his IVIG at home now with his own nurse. Much more convenient, and

much easier on Mark. There can be some side effects to IVIG, like

headache and tired, achy feeling for a day or two afterward. Those are

the most common. Mark does great and as soon as his infusion is done,

he's down and playing! They won't start IVIG until you have his

vaccine titers back because it interferes with test results. A lot on

here are on Sub-Q IG (goes into the fat, not a vein, and is done 1 x

week at home). They don't typically start people out on sub-q, you

usually do IVIG and then switch over.

It sounds like you're on the right track for getting a diagnosis. Try

to be patient and see what your immuno thinks the problem is, and don't

assume worst case scenerio. I have certainly been there, done that and

I can say most of my fears have never materialized...actually I can't

really think any of the things I lost sleep over every happened!

IDF has great resources for children, too, to help them understand what

is going on. If your son is diagnosed, you should check it out. They

have books for kids about IVIG, etc. It really helps Mark.

Best of luck to you, and your son!

, mom to Mark, 6, CVID

>

> Hello everyone I am hoping to soak in as much info as possible from

> your group! My son just turned 4yrs old and he is the most sickly

> little fella! He catches everything and he has GI issues(weighing in

> at a whopping 30 lbs) chronic ear infections recurring staph in his

> lymph node and teeny tonsils(as the Dr pointed out Wed) His IGg

levels

> are very low and he had labs to test the sub levels on Wed... So does

> this sound like any of your kiddos. If so please tell me as much as

> possible and what measures do you take to help your children with

their

> immunity?

> Thanks

> April

>

May 3, 2008

Let me add: the best thing you can do right now to protect your son is

keep him away from sick people. Anyone who has any type of infection,

esp little kids. You're fortunate in that it's almost summer, good

time be going through diagnosis stage!

When you come in from outside, wash your hands and his well. Germs

love places like gas pumps, grocery cart handles, etc. I keep hand

sanitizer in the van and they wash up every time they get in. Avoid

obvious infections, wash your hands all the time. Best advice I can

give you.

, mom to Mark, 6, CVID

>

> Hello everyone I am hoping to soak in as much info as possible from

> your group! My son just turned 4yrs old and he is the most sickly

> little fella! He catches everything and he has GI issues(weighing in

> at a whopping 30 lbs) chronic ear infections recurring staph in his

> lymph node and teeny tonsils(as the Dr pointed out Wed) His IGg

levels

> are very low and he had labs to test the sub levels on Wed... So does

> this sound like any of your kiddos. If so please tell me as much as

> possible and what measures do you take to help your children with

their

> immunity?

> Thanks

> April

>

May 14, 2009

I'm sorry your son is in so much pain and I'm sorry you have labeled him a

" legal addict. " While the doctor was ethically wrong in offering a drink to

your husband and your son, I do not see why you would like to sue him? The

reason I say this is because I was born with various issues, and have been

operated on numerous times and sometimes things go wrong, and with every

operation another area somewhere else seems to break down. I don't blame the

doctors, I have moments where I blame God, life in general, anyone and

everything I can think of being angry at I blame, but not my doctors. It is not

the doctor's fault, it's just the hand that some of us in life have been dealt.

I suppose I would be considered a legal addict also since I can not function

without narcotics. My family has a hard time understaning that a doctor can not

simply " fix " me and why I can't just go on with life like the rest of the world

taking a tylenol arthritis. It has taken me a long time to realize that I am not

normal, I will never be normal, and I want and need the support of my family and

I need them to understand that while I may be a " legal addict " it is necessary

for me to want to wake up in the morning or else I would be in so much pain

there would be no reason for me to wake up. I would definately chastise the

doctor for offering my son a drink, but a lawsuit? For what? A screw coming

lose? Doctor's aren't God. They can not guarantee that everything will go right

every time. I have hardware in my body and I have to have it checked to make

sure everything remains where it should. I suppose what I am saying is there are

no guarantee's there will not be complications to any surgery. I'm sorry for

your frustration and apparent anger, but please don't label your son an addict

when he takes medicine for a true purpose and not for fun. I truly don't believe

that the medical system turns people into what you refer to as legal addicts,

but true chronic pain does turn people into individuals who require naroctics in

order to live life. People with chronic pain face criticism and sideways glances

because of the medication they must take in order to live a semi-normal life.

Again, I am sorry your son must endure the pain and I am sorry for your anger.

> >

> > Hello to one and all,

> >

> > My son is 22 years old. At 14 he was diagnosed with

> kypho-scoliosis and he underwent a fusion. He still had some pain but

> could easily cope with it. At 19 he began to have some serious pain and

> could no longer work. It took us a year to get him into an ortho. In

> April of 2007 he had rods put into his back. All was ok until about 5

> weeks after the surgery. Then he began to lean to the left and had some

> bad pain. Back to the doc's. They decided that the one screw had gone

> thru a nerve. In Oct they changed the screw. The pain has been with him

> ever since.

> >

> > Now he is taking 20 mgs of oxycontin with 10 available for break thru

> pain. He is also taking Lyrica and muscle relaxers. The medical system

> has turned my son into a legal addict. He is now attending a pain

> clinic. My son has numbness on is left side. Most of the time it affects

> his left leg, but sometimes it goes into his left arm and also the left

> side of his face. They have done tests but cant seem to find a reason

> for all the numbness. Does anyone have a similar problem?

> >

> > This doctor was supposed to be so great at what he does, he is a

> teaching professor at a well known university and hospital. We feel like

> suing him. After the first screw up he offered my son and his father a

> drink in the office. How screwed up is that.

> >

> > Any advice is welcome at this point. Thanks for letting me vent.

> >

> > Lyn

> >

>

May 30, 2009

Amy,

I sympathize with you. I've yet to get my son on the diet, because I'm so

freshly on it myself I don't have the energy or brain power to take care of it

for him, too, but I will be putting him on it soon.

Just taking care of myself is overwhelm enough, so I can relate. I wish someone

would come up with a meal planning membership just for candida (maybe this is an

idea, bee) where you'd get recipes for breakfast,lunches, and dinners every day

of the week. I would pay so much for that!

HUGS to you. I know this has to be difficult, but once you get him healed it'll

all be worth it.

Janelle

>

> I slipped up on my son's diet for his 4th b-day and the last two weeks have

caved a little with snacks and some dinners. His congestion, which DISAPPEARED

through Bee's diet, has returned completely to the point he hardly slept last

night choking on mucus. His lethargy, head pain and muscle fatigue has also

returned. =(

>

> I feel so tired I don't know where to find time to meal plan and cook

creatively for him. He refuses eggs and the egg drink for breakfast, and I hate

to send him to school at 7 a.m. without eating!!

>

> I am continuing to point out how food makes him feel sick, which I think is

helping. He is voluntarily NOT eating yogurt and milk, which is a huge

improvement from a few months ago. I have bought several books on eating well

(in children's terms), so we are talking about health a LOT. My 5 year old

daughter, on the other hand, (who also has symptoms) is fighting it tooth and

nail and sneaking sweet treats from friends every chance she gets--grrrr!

>

> If nothing else this may be showing my husband the direct corrolation of

health to diet, but that isn't enough support for me to lead my family in this

journey.

>

> Any ideas?

> Thanks,

> Amy

>

June 13, 2009

He is doing these things because he doesn't know how else to manage himself. He will need to be taught the skills he needs and will need people cueing him to use his new skills before he can change them. Taking away his toys will do nothing to solve the problem. See if you can find a summer social skill group so he can practice and learn social skills. Also work on situations that you know he reacts badly in - give him other ways to manage these situations and help him practice.

Roxanna

Autism Happens

( ) My Son

My Son is seven years old and is a very bright funny all round good kid

but we are having the promblem at School of running away when angry and fighting with the other children in his class when mad insted of just walking away or using his words like we have been telling him since the start of the school year

With only nine days left we been getting notes everyday and we Cleaned out his room of toys and made go to bed early nothing is working

anyone have any ideas what works for them

Make your summer sizzle with fast and easy recipes for the grill.

June 13, 2009

Mandy,

It sounds like my son at the start of 3rd grade. But read your post again. You

mentioned running away, and fighting. Could it be that he is trying to do what

you ask of him, but he doesn't understand completely? Maybe when he runs, he's

trying to avoid the fight, and when he fights, he's trying to use his words

instead of running. It really sounds like his teacher needs to make a " time

out " space for him in the classroom or in another safe place. He is being

frustrated way too much, and needs a place to decompress where he feels safe.

And yes, maybe it is just the time of year, but that doesn't mean he still

shouldn't get some extra attention in this area. Just try to remind his teacher

(and remember yourself) that the reason our kids act out most is that they don't

feel understood, or they feel they don't understand us. Talking to him and

asking how he feels, or even giving him choices like " did you feel mad, or sad,

or anxious, or frustrated...? " might help you get to what seems to be bugging

him.

My husband and I took the toys away from my son in Kindergarten. It didn't

really seem to help at all (except his room stayed cleaner). We didn't know at

the time about what caused him to say the things he said or do the things he

did. Good luck in trying to figure out your very unique and challenging son:)

ah

>

> My Son is seven years old and is a very bright funny all round good kid

> but we are having the promblem at School of running away when angry and

fighting with the other children in his class when mad insted of just walking

away or using his words like we have been telling him since the start of the

school year

> With only nine days left we been getting notes everyday and we Cleaned out his

room of toys and made go to bed early nothing is working

> anyone have any ideas what works for them

>

October 11, 2009

I'm pretty much in the same boat as you. Just today my son was mad that he didn't earn a small prize at Walmart, so he began throwing things off the shelves. I didn't want to scream or yell, so I thought he might stop if I didn't show him attention for it. Boy was I wrong! I asked him to put the things back like he found it, and he began to throw more. I'm not sure what to do either. He's getting worse and worse everyday, where I'm not even sure that I can handle him anymore, and he's only 7. What's going to happen when he's doing this at 12 and 13, or even as an adult. I'm definitely sinking more and more into a depression over this, because I have no one who knows what I'm going through. People say "oh, he's not that bad" but I know

they're just being nice. What do you do when you're just so tired, and feel like you have nothing left to give?

From: "barefootmamma@..." <barefootmamma@...> Sent: Sun, October 11, 2009 11:19:36 AMSubject: ( ) My son

My oldest son is eight. We have suspected Aspergers in him for quite a while, but his behaviors were never things we couldn't handle, just quirky obsessions and other things, like temper tantrums. We homeschooled until just last month, so an official dx wasn't all that important. Now we've decided to put him and his siblings in school, which is a whole different ball game.We are going through all the evals right now. He's done the academic one and the school psych has seen him. He still has OT, speech, and the social worker. Hopefully at the end of these, he will have a full time aid at school. As it stands now, all he can tolerate is a couple hours in the morning. The school has been absolutely wonderful. They are providing him with his own space in the room, the ability to leave whenever he needs to, headphones if it gets too loud, books on tape to distract him if he needs it, etc. I am so happy with the teacher and the school in

general.Even with all this, twice in the last few weeks I've had to rush to the school because he was melting down. The first time they restrained him. I forgot to tell them earlier.... this is a BAD thing. It will send him through the roof. The second time they did not restrain, but the had to physically block him because he was trying to run away. When he gets like that..... it's just really bad. Really bad. The things he says. He's just terrified. It's heartbreaking. I ended up crying in the corner at the school the last time. How embarrassing!I really need some more coping strategies. I never know what to do. Yesterday we had to go shopping (the whole family-- dh and I and all 6 kids), and he got upset about something. I still have no idea what. He got out of the van and was screaming and swearing at us. We just all sat there and waited. I don't know what else to do. He finally walked into the store by himself and I followed at a

distance. A concerned stranger was trying to talk to him, and my son was just ranting to himself. I told the guy "he has Aspergers", he didn't say a word, just walked away but kept watching. I think he probably thought I was abusing him or something. :(So I sat on the bench down from him and waited. When he got quiet I asked him if he was ready, he said yes, and we went shopping. Ugh. What else could I have done? Seriously. Is there another way to approach this?At any rate, it sounds like the school psych, and everyone else there thinks he's got Aspergers, and likely an anxiety disorder as well. We have an appointment with the doctor coming up. I suppose he will then get an "official" dx, but I don't know what good that will do him. Meds are a last resort for us.Also, my dh is most likely being transfered to Florida next month, which means we will have to try and find a school like the one we found here. Not to mention the HUGE

transition of moving several states away.I would love to hear how others cope with everything. Is it going to keep getting more intense as he gets older? Are these extreme meltdowns typical of Aspergers?

October 11, 2009

Mine is 11 and honestly it doesn't get any easier. But you learn to cope certain

situations better -- of course new situations always pop up and hit you hard

before you are ready.

In the situation below, I would not have taken him onto the shopping trip: mall

is too loud and crowded for my son and he gets sensory overloaded and loses

control of his behaviors more easily. Besides, my son doesn't enjoy shopping,

unless it is for games or books. I do take him shopping, but usually just he and

I and we would use social stories to get him more prepared. For grocery

shopping, I would give him $20 - $50, and have him write up a list of food items

before we go into the store. Now I could just wait for him around the cashier

(after having already walked him through the store a couple of times first so

that he knows how to look for things). He enjoys finding good deals and can

often calculate total amount & change faster than the computer :-).

Once you get dx, you can get services through school and/or insurance: weekly

behavioral therapy sessions if necessary.

> I really need some more coping strategies. I never know what to do.

Yesterday we had to go shopping (the whole family-- dh and I and all 6 kids),

and he got upset about something. I still have no idea what. He got out of the

van and was screaming and swearing at us. We just all sat there and waited. I

don't know what else to do. He finally walked into the store by himself and I

followed at a distance. A concerned stranger was trying to talk to him, and my

son was just ranting to himself. I told the guy " he has Aspergers " , he didn't

say a word, just walked away but kept watching. I think he probably thought I

was abusing him or something.

>

> So I sat on the bench down from him and waited. When he got quiet I asked him

if he was ready, he said yes, and we went shopping. Ugh. What else could I

have done? Seriously. Is there another way to approach this?

>

> At any rate, it sounds like the school psych, and everyone else there thinks

he's got Aspergers, and likely an anxiety disorder as well. We have an

appointment with the doctor coming up. I suppose he will then get an " official "

dx, but I don't know what good that will do him. Meds are a last resort for us.

>

> Also, my dh is most likely being transfered to Florida next month, which means

we will have to try and find a school like the one we found here. Not to

mention the HUGE transition of moving several states away.

>

> I would love to hear how others cope with everything. Is it going to keep

getting more intense as he gets older? Are these extreme meltdowns typical of

Aspergers?

>

October 11, 2009

Your son should never be restrained. The only caveat is if he had an actual weapon--not a stick or a broom, btw--so the point being he should NOT be restrained!! . That is awful to think they resorted to restraining him. He needs a safe spot where he can go when he wants to run. His instincts are good--he knows when he's overloaded--he needs a place to go. It ought to be tent-like in that it would shield him from outsiders. I would suggest that it would NOT be in an office with an adult who will likely talk to him or scold him and just f*ck up the situation even more. You need to have this happen the very day he's in school and he needs to be told this is his place to go to feel safe when he's had too much. Tell him something along the lines of, the rule is you can't leave school w/o mom or dad, but you can go to your safe place and you won't get in trouble for being there. However, the rule also says that once you feel relieved/better/okay, that it's time to return to class. This is huge for our kids and is such a safety net for them.

The follow-up to this is that you and the school need to understand what precipitated this outburst. You have to figure out if it was a sensory overload or did some actual event trigger your son. Outings are hard for us, too. My son has refused to want to leave the house. Sometimes you work rewards into these situations where a child is struggling. For us, it's flexibility. That's one of our buzz words. A while back, I designed a flexibility sheet for my son. When he showed 3 opportunities (keep it low) that he was being flexible, he won a reward. Sometimes it was baking cookies (he loves this) other times it was a walk to his favorite store to buy a soda. So, they were small in nature, BUT, important to my son--the carrot stick in his life. You need to find ways to help your son with his fears and his anxiety will lessen. BUT, don't do it though constantly talking about it, that will surely annoy him. You need to find the strategies to help him. Some kids are helped with social stories.

Your move....oh, boy. Is your husband military. (please let me know if he is)? This WILL be hard. You ought to talk to one of the professionals about help. BUT, before you do, ask them how much experience they have had with kids on the spectrum, specifically, asperger's. Don't put your kid's welfare in the hands of an poorly qualified professional. That would be detrimental.

On Sun, Oct 11, 2009 at 11:19 AM, barefootmamma@... <barefootmamma@...> wrote:

My oldest son is eight. We have suspected Aspergers in him for quite a while, but his behaviors were never things we couldn't handle, just quirky obsessions and other things, like temper tantrums. We homeschooled until just last month, so an official dx wasn't all that important. Now we've decided to put him and his siblings in school, which is a whole different ball game.

We are going through all the evals right now. He's done the academic one and the school psych has seen him. He still has OT, speech, and the social worker. Hopefully at the end of these, he will have a full time aid at school. As it stands now, all he can tolerate is a couple hours in the morning. The school has been absolutely wonderful. They are providing him with his own space in the room, the ability to leave whenever he needs to, headphones if it gets too loud, books on tape to distract him if he needs it, etc. I am so happy with the teacher and the school in general.

Even with all this, twice in the last few weeks I've had to rush to the school because he was melting down. The first time they restrained him. I forgot to tell them earlier.... this is a BAD thing. It will send him through the roof. The second time they did not restrain, but the had to physically block him because he was trying to run away. When he gets like that..... it's just really bad. Really bad. The things he says. He's just terrified. It's heartbreaking. I ended up crying in the corner at the school the last time. How embarrassing!

I really need some more coping strategies. I never know what to do. Yesterday we had to go shopping (the whole family-- dh and I and all 6 kids), and he got upset about something. I still have no idea what. He got out of the van and was screaming and swearing at us. We just all sat there and waited. I don't know what else to do. He finally walked into the store by himself and I followed at a distance. A concerned stranger was trying to talk to him, and my son was just ranting to himself. I told the guy " he has Aspergers " , he didn't say a word, just walked away but kept watching. I think he probably thought I was abusing him or something.

So I sat on the bench down from him and waited. When he got quiet I asked him if he was ready, he said yes, and we went shopping. Ugh. What else could I have done? Seriously. Is there another way to approach this?

At any rate, it sounds like the school psych, and everyone else there thinks he's got Aspergers, and likely an anxiety disorder as well. We have an appointment with the doctor coming up. I suppose he will then get an " official " dx, but I don't know what good that will do him. Meds are a last resort for us.

Also, my dh is most likely being transfered to Florida next month, which means we will have to try and find a school like the one we found here. Not to mention the HUGE transition of moving several states away.

I would love to hear how others cope with everything. Is it going to keep getting more intense as he gets older? Are these extreme meltdowns typical of Aspergers?

October 11, 2009

When I would take my son shopping as a younger child (he's now 13), we'd talk before we went into the store about what I expected of him in terms of behavior. I'd phase it all in positive ways too. So instead of saying "Don't run in the store" I'd say "Please walk with Mommy when we are in the store" and instead of "don't disappear so I can't see you" would be "Mommy needs to see your body at all times." Since my son tends to perseverate, I always tried to keep it positive so that is what he was perseverating on, not the negative stuff. When we got in the store, I'd give him verbal praises immediately, for any little thing "wow, you're doing a great job of standing close to the cart!" just after we push the cart 20 feet or so, things like that. I never promised him a treat of some sort if he behaved though. I knew the chances he would struggle too much and lose it were

too great and I knew what kind of meltdown I'd have on my hands if that happened. I also never took him on long shopping trips with me by myself, if I could help it at all. I knew I'd need to be focused more on the shopping than on him so it wasn't a good idea. If he did misbehave, I'd find a place to put him in an abbreviated time out. I'd find a place out of the way of people and make him sit there for 30 seconds quietly and then get down on his level and say "you were in a time out because you were running around and mommy couldn't find you. I would like for you to stay where mommy can see you." and then give him a hug and tell him I love him and try again. If it ever resorted to a timeout once, just the threat of another timeout would get him to act right.

If it makes you feel any better, my son is awesome when we go shopping now. He always stays next to me and never melts down. We haven't had a public meltdown in probably 5 years? He's come a LONG way. The same thing might happen with your son too, so don't give up.

"Over-optimism is waiting for you ship to come in when you haven't sent one out."

From: Chambers <missjen0124@...> Sent: Sunday, October 11, 2009 11:33:28 AMSubject: Re: ( ) My son

I'm pretty much in the same boat as you. Just today my son was mad that he didn't earn a small prize at Walmart, so he began throwing things off the shelves. I didn't want to scream or yell, so I thought he might stop if I didn't show him attention for it. Boy was I wrong! I asked him to put the things back like he found it, and he began to throw more. I'm not sure what to do either. He's getting worse and worse everyday, where I'm not even sure that I can handle him anymore, and he's only 7. What's going to happen when he's doing this at 12 and 13, or even as an adult. I'm definitely sinking more and more into a depression over this, because I have no one who knows what I'm going through. People say "oh, he's not that bad" but I know they're just being nice. What do you do when you're just so tired, and feel like you have nothing left to give?

From: "barefootmamma@ sbcglobal. net" <barefootmamma@ sbcglobal. net> Sent: Sun, October 11, 2009 11:19:36 AMSubject: ( ) My son

My oldest son is eight. We have suspected Aspergers in him for quite a while, but his behaviors were never things we couldn't handle, just quirky obsessions and other things, like temper tantrums. We homeschooled until just last month, so an official dx wasn't all that important. Now we've decided to put him and his siblings in school, which is a whole different ball game.We are going through all the evals right now. He's done the academic one and the school psych has seen him. He still has OT, speech, and the social worker. Hopefully at the end of these, he will have a full time aid at school. As it stands now, all he can tolerate is a couple hours in the morning. The school has been absolutely wonderful. They are providing him with his own space in the room, the ability to leave whenever he needs to, headphones if it gets too loud, books on tape to distract him if he needs it, etc. I am so happy with the teacher and the school in

general.Even with all this, twice in the last few weeks I've had to rush to the school because he was melting down. The first time they restrained him. I forgot to tell them earlier.... this is a BAD thing. It will send him through the roof. The second time they did not restrain, but the had to physically block him because he was trying to run away. When he gets like that..... it's just really bad. Really bad. The things he says. He's just terrified. It's heartbreaking. I ended up crying in the corner at the school the last time. How embarrassing!I really need some more coping strategies. I never know what to do. Yesterday we had to go shopping (the whole family-- dh and I and all 6 kids), and he got upset about something. I still have no idea what. He got out of the van and was screaming and swearing at us. We just all sat there and waited. I don't know what else to do. He finally walked into the store by himself and I followed at a

distance. A concerned stranger was trying to talk to him, and my son was just ranting to himself. I told the guy "he has Aspergers", he didn't say a word, just walked away but kept watching. I think he probably thought I was abusing him or something. :(So I sat on the bench down from him and waited. When he got quiet I asked him if he was ready, he said yes, and we went shopping. Ugh. What else could I have done? Seriously. Is there another way to approach this?At any rate, it sounds like the school psych, and everyone else there thinks he's got Aspergers, and likely an anxiety disorder as well. We have an appointment with the doctor coming up. I suppose he will then get an "official" dx, but I don't know what good that will do him. Meds are a last resort for us.Also, my dh is most likely being transfered to Florida next month, which means we will have to try and find a school like the one we found here. Not to mention the HUGE

transition of moving several states away.I would love to hear how others cope with everything. Is it going to keep getting more intense as he gets older? Are these extreme meltdowns typical of Aspergers?

October 11, 2009

Hi,

I can't help you much,,,,,but I feel for you.

For us, yes,,,,,,,,,,the meltdowns were a part of Ian as he got older. He had his in the morning before school and after he got home.While he was at school, he struggled and hunched up his shoulders and pulled his head in his shoulders,,,,,,,,,had a scowl on his face..............got frustrated with everything,,,,,angry when others didn't accept him.............then,,,,when the teachers would send him to the "resource room",,,,,he'd get more upset, because he KNEW he didn't fit and felt and KNEW he was being treated like a freak (his words).

So,,,,,,how did we cope?

I, too late I must say, but I pulled him out and homeschooled him for 6th adn 7th.

It was wonderful. (Hard, at times,,,,but wonderful.) He became a happy guy.

We're now trying a small parochial school. It started well and is starting to go downhill fast, making us think aobu tour options........again.

Anyway,,,,,good luck to you.

Keep plugging along.

You seem like you're in a wonderful school and it's too bad you have to leave. But,,,,,

maybe you'll end up in another wonderful school?

Do you have the opportuntiy to check out online where you'll be? Maybe get a heads up?

Again, good luck.....and hugs.

Robin

From: barefootmamma@... <barefootmamma@...>Subject: ( ) My son Date: Sunday, October 11, 2009, 10:19 AM

My oldest son is eight. We have suspected Aspergers in him for quite a while, but his behaviors were never things we couldn't handle, just quirky obsessions and other things, like temper tantrums. We homeschooled until just last month, so an official dx wasn't all that important. Now we've decided to put him and his siblings in school, which is a whole different ball game.We are going through all the evals right now. He's done the academic one and the school psych has seen him. He still has OT, speech, and the social worker. Hopefully at the end of these, he will have a full time aid at school. As it stands now, all he can tolerate is a couple hours in the morning. The school has been absolutely wonderful. They are providing him with his own space in the room, the ability to leave whenever he needs to, headphones if it gets too loud, books on tape to distract him if he needs it, etc. I am so happy with the teacher and the school in

general.Even with all this, twice in the last few weeks I've had to rush to the school because he was melting down. The first time they restrained him. I forgot to tell them earlier.... this is a BAD thing. It will send him through the roof. The second time they did not restrain, but the had to physically block him because he was trying to run away. When he gets like that..... it's just really bad. Really bad. The things he says. He's just terrified. It's heartbreaking. I ended up crying in the corner at the school the last time. How embarrassing!I really need some more coping strategies. I never know what to do. Yesterday we had to go shopping (the whole family-- dh and I and all 6 kids), and he got upset about something. I still have no idea what. He got out of the van and was screaming and swearing at us. We just all sat there and waited. I don't know what else to do. He finally walked into the store by himself and I followed at a

distance. A concerned stranger was trying to talk to him, and my son was just ranting to himself. I told the guy "he has Aspergers", he didn't say a word, just walked away but kept watching. I think he probably thought I was abusing him or something. :(So I sat on the bench down from him and waited. When he got quiet I asked him if he was ready, he said yes, and we went shopping. Ugh. What else could I have done? Seriously. Is there another way to approach this?At any rate, it sounds like the school psych, and everyone else there thinks he's got Aspergers, and likely an anxiety disorder as well. We have an appointment with the doctor coming up. I suppose he will then get an "official" dx, but I don't know what good that will do him. Meds are a last resort for us.Also, my dh is most likely being transfered to Florida next month, which means we will have to try and find a school like the one we found here. Not to mention the HUGE

transition of moving several states away.I would love to hear how others cope with everything. Is it going to keep getting more intense as he gets older? Are these extreme meltdowns typical of Aspergers?

October 11, 2009

Have you ever heard of the wilbarger brushing? We have started that for our daughter and she seems to need it. It helps her senses calm down. i do it every 2 hours every day and will for as long as she needs. it is more than just brushing there is a correct way to do it and your ot can help you with that. my daughter tantrums like that too and I understand restraining them does not work! It makes it much worse for us. Sometimes she is so bad though I still have to hold her down so she doesn't get hurt. My husband has aspergers and yes he still has huge meltdowns at 31 years old. He handles them differently than a child though. He gets very very very mad and very very quiet and just breaths madly and rolls his eyes at me. He isn't very good at talking to me when he is upset so I try to leave him

alone to cool off. He is spinning out of control but only i really notice it. He has learned to hide it. If i bother him though i can see how confused his brain is. he isn't abusive or aggressive he just isn't processing information well; it is like an overload in his brain. I want to start brushing him too but he won't let me. He is high functioning enough to tell me how to treat him when it happens. i listen to him because he is so honest. He needs his space. I have another friend who lets her daughter have quiet time locked in her room for just a few minutes to undo the panic in her body. I have tried this for my child but it is more of a disipline because mine is 3 and says no. She won't go to her room when she is mad she just freaks out. this other girl is 6 and she runs to her room when she has hit her limit and then she is in control of her body more. Maybe you

could try this quiet time seperated from the situation. It is almost like a mandatory time out for their senses.We get looks too when it happens. If you look confidently at them like yes my child is melting down right now and no I do not need you help to fix it they might leave you alone. I would be very upset if a stranger intervened. All kids act up in public and we are not bad parents because they do. Kids need to be mad or sad sometimes it is good to have feelings and I try to encourage julianne if she needs to be sad it is ok to cry or be mad or whatever. i just want her to try to do it appropriately. I am trying to figure all of this out too and it is very hard to know what to do sometimes. i have heard md want to put our kids on prozac and I refuse! but i have heard that DAN! offer a natural safe version of an anxiety med that I am looking into for my daughter.cathy---

On Sun, 10/11/09, barefootmamma@... <barefootmamma@...> wrote:From: barefootmamma@... <barefootmamma@...>Subject: ( ) My son Date: Sunday, October 11, 2009, 9:19 AM

My oldest son is eight. We have suspected Aspergers in him for quite a while, but his behaviors were never things we couldn't handle, just quirky obsessions and other things, like temper tantrums. We homeschooled until just last month, so an official dx wasn't all that important. Now we've decided to put him and his siblings in school, which is a whole different ball game.

We are going through all the evals right now. He's done the academic one and the school psych has seen him. He still has OT, speech, and the social worker. Hopefully at the end of these, he will have a full time aid at school. As it stands now, all he can tolerate is a couple hours in the morning. The school has been absolutely wonderful. They are providing him with his own space in the room, the ability to leave whenever he needs to, headphones if it gets too loud, books on tape to distract him if he needs it, etc. I am so happy with the teacher and the school in general.

Even with all this, twice in the last few weeks I've had to rush to the school because he was melting down. The first time they restrained him. I forgot to tell them earlier.... this is a BAD thing. It will send him through the roof. The second time they did not restrain, but the had to physically block him because he was trying to run away. When he gets like that..... it's just really bad. Really bad. The things he says. He's just terrified. It's heartbreaking. I ended up crying in the corner at the school the last time. How embarrassing!

I really need some more coping strategies. I never know what to do. Yesterday we had to go shopping (the whole family-- dh and I and all 6 kids), and he got upset about something. I still have no idea what. He got out of the van and was screaming and swearing at us. We just all sat there and waited. I don't know what else to do. He finally walked into the store by himself and I followed at a distance. A concerned stranger was trying to talk to him, and my son was just ranting to himself. I told the guy "he has Aspergers", he didn't say a word, just walked away but kept watching. I think he probably thought I was abusing him or something.

So I sat on the bench down from him and waited. When he got quiet I asked him if he was ready, he said yes, and we went shopping. Ugh. What else could I have done? Seriously. Is there another way to approach this?

At any rate, it sounds like the school psych, and everyone else there thinks he's got Aspergers, and likely an anxiety disorder as well. We have an appointment with the doctor coming up. I suppose he will then get an "official" dx, but I don't know what good that will do him. Meds are a last resort for us.

Also, my dh is most likely being transfered to Florida next month, which means we will have to try and find a school like the one we found here. Not to mention the HUGE transition of moving several states away.

I would love to hear how others cope with everything. Is it going to keep getting more intense as he gets older? Are these extreme meltdowns typical of Aspergers?

October 11, 2009

Wow...bless you ....6 kids...I only have one and have my hands full....

I give you a lot of credit!!!!

As far as melt downs...my son does and so do a lot of kids with AS. It helps if you can figure out what is causing the episode...is he hungry? is he tired? what is he anxious about?

I think you handled the situation very well....when we are home I tell my son to go to his room. I let him work it out without bothering him. He either falls asleep or calms down and finally comes out a whole new person.

Jan

Sent: Sun, October 11, 2009 11:19:36 AMSubject: ( ) My son

My oldest son is eight. We have suspected Aspergers in him for quite a while, but his behaviors were never things we couldn't handle, just quirky obsessions and other things, like temper tantrums. We homeschooled until just last month, so an official dx wasn't all that important. Now we've decided to put him and his siblings in school, which is a whole different ball game.We are going through all the evals right now. He's done the academic one and the school psych has seen him. He still has OT, speech, and the social worker. Hopefully at the end of these, he will have a full time aid at school. As it stands now, all he can tolerate is a couple hours in the morning. The school has been absolutely wonderful. They are providing him with his own space in the room, the ability to leave whenever he needs to, headphones if it gets too loud, books on tape to distract him if he needs it, etc. I am so happy with the teacher and the school in

general.Even with all this, twice in the last few weeks I've had to rush to the school because he was melting down. The first time they restrained him. I forgot to tell them earlier.... this is a BAD thing. It will send him through the roof. The second time they did not restrain, but the had to physically block him because he was trying to run away. When he gets like that..... it's just really bad. Really bad. The things he says. He's just terrified. It's heartbreaking. I ended up crying in the corner at the school the last time. How embarrassing!I really need some more coping strategies. I never know what to do. Yesterday we had to go shopping (the whole family-- dh and I and all 6 kids), and he got upset about something. I still have no idea what. He got out of the van and was screaming and swearing at us. We just all sat there and waited. I don't know what else to do. He finally walked into the store by himself and I followed at a

distance. A concerned stranger was trying to talk to him, and my son was just ranting to himself. I told the guy "he has Aspergers", he didn't say a word, just walked away but kept watching. I think he probably thought I was abusing him or something. :(So I sat on the bench down from him and waited. When he got quiet I asked him if he was ready, he said yes, and we went shopping. Ugh. What else could I have done? Seriously. Is there another way to approach this?At any rate, it sounds like the school psych, and everyone else there thinks he's got Aspergers, and likely an anxiety disorder as well. We have an appointment with the doctor coming up. I suppose he will then get an "official" dx, but I don't know what good that will do him. Meds are a last resort for us.Also, my dh is most likely being transfered to Florida next month, which means we will have to try and find a school like the one we found here. Not to mention the HUGE

transition of moving several states away.I would love to hear how others cope with everything. Is it going to keep getting more intense as he gets older? Are these extreme meltdowns typical of Aspergers?

October 12, 2009

I get that all the time, I have many relatives that I see infrequently and they all say, not surprised at diagnosis, but it seems pretty "managable", he doesn't seem that bad, yep well for the half hour you have spent with him, yes he has been ok, its the other 23 1/2 hrs in the day that can be hard to get through!!!

From: Chambers <missjen0124@...>Subject: Re: ( ) My son Date: Sunday, 11 October, 2009, 5:33 PM

I'm pretty much in the same boat as you. Just today my son was mad that he didn't earn a small prize at Walmart, so he began throwing things off the shelves. I didn't want to scream or yell, so I thought he might stop if I didn't show him attention for it. Boy was I wrong! I asked him to put the things back like he found it, and he began to throw more. I'm not sure what to do either. He's getting worse and worse everyday, where I'm not even sure that I can handle him anymore, and he's only 7. What's going to happen when he's doing this at 12 and 13, or even as an adult. I'm definitely sinking more and more into a depression over this, because I have no one who knows what I'm going through. People say "oh, he's not that bad" but I know they're just being nice. What do you do when you're just so tired, and feel like you have nothing left to give?

From: "barefootmamma@ sbcglobal. net" <barefootmamma@ sbcglobal. net> Sent: Sun, October 11, 2009 11:19:36 AMSubject: ( ) My son

My oldest son is eight. We have suspected Aspergers in him for quite a while, but his behaviors were never things we couldn't handle, just quirky obsessions and other things, like temper tantrums. We homeschooled until just last month, so an official dx wasn't all that important. Now we've decided to put him and his siblings in school, which is a whole different ball game.We are going through all the evals right now. He's done the academic one and the school psych has seen him. He still has OT, speech, and the social worker. Hopefully at the end of these, he will have a full time aid at school. As it stands now, all he can tolerate is a couple hours in the morning. The school has been absolutely wonderful. They are providing him with his own space in the room, the ability to leave whenever he needs to, headphones if it gets too loud, books on tape to distract him if he needs it, etc. I am so happy with the teacher and the school in

general.Even with all this, twice in the last few weeks I've had to rush to the school because he was melting down. The first time they restrained him. I forgot to tell them earlier.... this is a BAD thing. It will send him through the roof. The second time they did not restrain, but the had to physically block him because he was trying to run away. When he gets like that..... it's just really bad. Really bad. The things he says. He's just terrified. It's heartbreaking. I ended up crying in the corner at the school the last time. How embarrassing!I really need some more coping strategies. I never know what to do. Yesterday we had to go shopping (the whole family-- dh and I and all 6 kids), and he got upset about something. I still have no idea what. He got out of the van and was screaming and swearing at us. We just all sat there and waited. I don't know what else to do. He finally walked into the store by himself and I followed at a

distance. A concerned stranger was trying to talk to him, and my son was just ranting to himself. I told the guy "he has Aspergers", he didn't say a word, just walked away but kept watching. I think he probably thought I was abusing him or something. :(So I sat on the bench down from him and waited. When he got quiet I asked him if he was ready, he said yes, and we went shopping. Ugh. What else could I have done? Seriously. Is there another way to approach this?At any rate, it sounds like the school psych, and everyone else there thinks he's got Aspergers, and likely an anxiety disorder as well. We have an appointment with the doctor coming up. I suppose he will then get an "official" dx, but I don't know what good that will do him. Meds are a last resort for us.Also, my dh is most likely being transfered to Florida next month, which means we will have to try and find a school like the one we found here. Not to mention the HUGE

transition of moving several states away.I would love to hear how others cope with everything. Is it going to keep getting more intense as he gets older? Are these extreme meltdowns typical of Aspergers?

October 12, 2009

Your school sounds absolutely wonderful.

I think it is a good thing to have a diagnosis in place because it will force

the schools to provide him with the services he needs to level the playing field

for him. Getting a diagnosis was a relief to my son. He thought he was the only

person like this and it was a great comfort to know that there were many other

people just like him.

My son used to throw tamtrums when he didn't want to go somewhere new or

different. First of all we avoided going to places where he would be overwhelmed

and start to melt down, but sometimes you just can't avoid certain situations.

Talk to him and ask him to think about how he feels when he starts to lose

control. Explain that sometimes he might be somewhere where it was too noisy,

cold, hot, whatever, and that he has to figure out what to do so he doesn't lose

control. What helped my son was carrying a CD player, handheld game, book, or

iPod that he could focus on when he started to feel uncomfortable. Now that he

is older, I've seen him close his eyes for a few minutes and meditate to calm

himself down.

I used to have something I called the Rule of 2. I made this up when he was a

toddler. That if we went to more than 2 different places in a day that the next

place had to be somewhere my son could just relax and regroup. So if we had a

lot of errands or a long drive, then the 3rd stop would be someplace like a city

park where he could run and play on the swings or maybe we'd stop somewhere for

ice cream. The point is we had to do something where my son could relax again.

Otherwise he would just loose it and ruin the day for everyone.

I also used to give little speeches about the RULES for the place where we were

going so my kids would know what was expected. Some rules were normal - like not

talking during the movie - but I did make up rules, too. Like when we were

shopping, we would take turns looking at things without others in the family

complaining. So my son could look at games, but then his sister could look at

toys, and I also got to look at shoes.

October 12, 2009

Thanks! I like the idea of having him calculate totals and looking for good deals. He loves the math stuff. And he does like to be helpful, which actually runs counter to what I've read about ASD lately, but I suppose everyone is different.It's so difficult to decide when and where to take him. He wants to go places badly, but often they get to be too much. Maybe as time goes on and we work with him to help him figure out his triggers he'll be a better judge of what works for him and what doesn't.JenFrom: caijiao <caijiao@...> Sent: Sunday, October 11, 2009 1:21:41 PMSubject: ( ) Re: My son

Mine is 11 and honestly it doesn't get any easier. But you learn to cope certain situations better -- of course new situations always pop up and hit you hard before you are ready.

In the situation below, I would not have taken him onto the shopping trip: mall is too loud and crowded for my son and he gets sensory overloaded and loses control of his behaviors more easily. Besides, my son doesn't enjoy shopping, unless it is for games or books. I do take him shopping, but usually just he and I and we would use social stories to get him more prepared. For grocery shopping, I would give him $20 - $50, and have him write up a list of food items before we go into the store. Now I could just wait for him around the cashier (after having already walked him through the store a couple of times first so that he knows how to look for things). He enjoys finding good deals and can often calculate total amount & change faster than the computer :-).

Once you get dx, you can get services through school and/or insurance: weekly behavioral therapy sessions if necessary.

> I really need some more coping strategies. I never know what to do. Yesterday we had to go shopping (the whole family-- dh and I and all 6 kids), and he got upset about something. I still have no idea what. He got out of the van and was screaming and swearing at us. We just all sat there and waited. I don't know what else to do. He finally walked into the store by himself and I followed at a distance. A concerned stranger was trying to talk to him, and my son was just ranting to himself. I told the guy "he has Aspergers", he didn't say a word, just walked away but kept watching. I think he probably thought I was abusing him or something.

>

> So I sat on the bench down from him and waited. When he got quiet I asked him if he was ready, he said yes, and we went shopping. Ugh. What else could I have done? Seriously. Is there another way to approach this?

>

> At any rate, it sounds like the school psych, and everyone else there thinks he's got Aspergers, and likely an anxiety disorder as well. We have an appointment with the doctor coming up. I suppose he will then get an "official" dx, but I don't know what good that will do him. Meds are a last resort for us.

>

> Also, my dh is most likely being transfered to Florida next month, which means we will have to try and find a school like the one we found here. Not to mention the HUGE transition of moving several states away.

>

> I would love to hear how others cope with everything. Is it going to keep getting more intense as he gets older? Are these extreme meltdowns typical of Aspergers?

>

October 12, 2009

Oh boy, do I know exactly what you're saying. I've worried about not being able to handle my son in the future-- as he gets bigger and stronger. I'm just putting a whole lot of hope into what we have started now. (((hugs)))JenFrom: Chambers <missjen0124@...> Sent:

Sunday, October 11, 2009 12:33:28 PMSubject: Re: ( ) My son

I'm pretty much in the same boat as you. Just today my son was mad that he didn't earn a small prize at Walmart, so he began throwing things off the shelves. I didn't want to scream or yell, so I thought he might stop if I didn't show him attention for it. Boy was I wrong! I asked him to put the things back like he found it, and he began to throw more. I'm not sure what to do either. He's getting worse and worse everyday, where I'm not even sure that I can handle him anymore, and he's only 7. What's going to happen when he's doing this at 12 and 13, or even as an adult. I'm definitely sinking more and more into a depression over this, because I have no one who knows what I'm going through. People say "oh, he's not that bad" but I know

they're just being nice. What do you do when you're just so tired, and feel like you have nothing left to give?

From: "barefootmamma@ sbcglobal. net" <barefootmamma@ sbcglobal. net> Sent: Sun, October 11, 2009 11:19:36 AMSubject: ( ) My son

My oldest son is eight. We have suspected Aspergers in him for quite a while, but his behaviors were never things we couldn't handle, just quirky obsessions and other things, like temper tantrums. We homeschooled until just last month, so an official dx wasn't all that important. Now we've decided to put him and his siblings in school, which is a whole different ball game.We are going through all the evals right now. He's done the academic one and the school psych has seen him. He still has OT, speech, and the social worker. Hopefully at the end of these, he will have a full time aid at school. As it stands now, all he can tolerate is a couple hours in the morning. The school has been absolutely wonderful. They are providing him with his own space in the room, the ability to leave whenever he needs to, headphones if it gets too loud, books on tape to distract him if he needs it, etc. I am so happy with the teacher and the school in

general.Even with all this, twice in the last few weeks I've had to rush to the school because he was melting down. The first time they restrained him. I forgot to tell them earlier.... this is a BAD thing. It will send him through the roof. The second time they did not restrain, but the had to physically block him because he was trying to run away. When he gets like that..... it's just really bad. Really bad. The things he says. He's just terrified. It's heartbreaking. I ended up crying in the corner at the school the last time. How embarrassing!I really need some more coping strategies. I never know what to do. Yesterday we had to go shopping (the whole family-- dh and I and all 6 kids), and he got upset about something. I still have no idea what. He got out of the van and was screaming and swearing at us. We just all sat there and waited. I don't know what else to do. He finally walked into the store by himself and I followed at a

distance. A concerned stranger was trying to talk to him, and my son was just ranting to himself. I told the guy "he has Aspergers", he didn't say a word, just walked away but kept watching. I think he probably thought I was abusing him or something. :(So I sat on the bench down from him and waited. When he got quiet I asked him if he was ready, he said yes, and we went shopping. Ugh. What else could I have done? Seriously. Is there another way to approach this?At any rate, it sounds like the school psych, and everyone else there thinks he's got Aspergers, and likely an anxiety disorder as well. We have an appointment with the doctor coming up. I suppose he will then get an "official" dx, but I don't know what good that will do him. Meds are a last resort for us.Also, my dh is most likely being transfered to Florida next month, which means we will have to try and find a school like the one we found here. Not to mention the HUGE

transition of moving several states away.I would love to hear how others cope with everything. Is it going to keep getting more intense as he gets older? Are these extreme meltdowns typical of Aspergers?

October 12, 2009

I know. I felt so terrible that he was restrained. I feel like it's my fault though, because I didn't tell them not to do it. I just forgot that it was even an option, you know? It makes him SO scared. And then forget about helping him pull out of it. But the second time they didn't do it, so I know they are listening to me. He does have the option, now, to go to the room across the hall, but there is someone in there. I think it would be better if he could be alone, but I'm not sure the school is able to do that, legally? He's supposed to give his teacher the thumbs up sign, and then he can leave. It works if he catches himself in time. Once he goes over the line, forget it.I really like the flexibility award! We've done awards for

following directions, but I like your idea better. In school, he wins a sticker for every 20 minutes he does well. He loves it! Then we put his daily chart on the fridge and make sure we gush about it. Maybe too much. He told me to please stop it the other day. lolWe just found out this morning our move is not happening until next January or even February. This is good because it gives me time to scout out the schools. (If anyone knows of a good one in the Tampa/St Pete area please let me know!!)My husband is not military (anymore... he was a marine). He does work for the federal government though. This is a transfer/promotion we can't afford to pass up, plus we really want to live in Tampa.JenFrom: <doyourecycle@...> Sent: Sunday, October 11, 2009 2:50:31 PMSubject: Re: ( ) My son

Your son should never be restrained. The only caveat is if he had an actual weapon--not a stick or a broom, btw--so the point being he should NOT be restrained!! . That is awful to think they resorted to restraining him. He needs a safe spot where he can go when he wants to run. His instincts are good--he knows when he's overloaded-- he needs a place to go. It ought to be tent-like in that it would shield him from outsiders. I would suggest that it would NOT be in an office with an adult who will likely talk to him or scold him and just f*ck up the situation even more. You need to have this happen the very day he's in school and he needs to be told this is his place to go to feel safe when he's had too much. Tell him something along the lines of, the rule is you can't leave school w/o mom or dad, but you can go to your

safe place and you won't get in trouble for being there. However, the rule also says that once you feel relieved/better/ okay, that it's time to return to class. This is huge for our kids and is such a safety net for them.

The follow-up to this is that you and the school need to understand what precipitated this outburst. You have to figure out if it was a sensory overload or did some actual event trigger your son. Outings are hard for us, too. My son has refused to want to leave the house. Sometimes you work rewards into these situations where a child is struggling. For us, it's flexibility. That's one of our buzz words. A while back, I designed a flexibility sheet for my son. When he showed 3 opportunities (keep it low) that he was being flexible, he won a reward. Sometimes it was baking cookies (he loves this) other times it was a walk to his favorite store to buy a soda. So, they were small in nature, BUT, important to my son--the carrot stick in his life. You need to find ways to help your son with his fears and his anxiety will lessen. BUT, don't do it though

constantly talking about it, that will surely annoy him. You need to find the strategies to help him. Some kids are helped with social stories.

Your move....oh, boy. Is your husband military. (please let me know if he is)? This WILL be hard. You ought to talk to one of the professionals about help. BUT, before you do, ask them how much experience they have had with kids on the spectrum, specifically, asperger's. Don't put your kid's welfare in the hands of an poorly qualified professional. That would be detrimental.

On Sun, Oct 11, 2009 at 11:19 AM, barefootmamma@ sbcglobal. net <barefootmamma@ sbcglobal. net> wrote: