[Guest guest]

Sara, Thats great that Elie does not do this anymore. That gives me

hope. How old was he when he stopped? Anything that you can remember

that helped to stop this?It is so nice that your shared with me your

experience so I do not feel alone.I know I am not alone and

thankgoodness to this group and you for sharing your experiences.

Thanks cyndi

>

> And you are NOT alone. I have been there too. Altho those

memories are a

> sad and distant memory, I sure do remember ALWAYS having to carry

at least

> one change of clothes (head to foot), GLOVES, and wipes, plus a

towel.

>

> As your boy grows this problem will slowly fade away. Elie is 21 -

we have

> had ONE accident (incident) since April. And that was after

overeating at

> Chik-fil-a. And he was very clean and neat about it. Only the

accident -

> no smearing, smooshing, nothing.

>

> You were the supreme picture of grace under stress.

>

> Hugs to you.

>

>

>

> Sara - Choose to make lemonade, not complain about the lemons.

>

>

>

>

>

> >

> >Reply-To:

> >To:

> >Subject: Re: I had a melt down

> >Date: Tue, 10 Oct 2006 19:16:27 -0700 (PDT)

> >

> >Ooooooooooooooooooooo.

> >

> >I remember " those days. " I have to say that I'm

> >forever thankful that Andy is pretty good about using

> >bathrooms and letting me know. Except for " sometimes. "

> >But the unexpected messes in public are a distant

> >memory.

> >

> >It does get better.

> >

> >But Oh my.......there are days when WE ARE ALLOWED TO

> >CRY!

> >

> >You are a good Mom. You did your very best under very

> >human circumstances. Unfortunately,others don't always

> >get that you're just donig the best you can.

> >

> >I " m glad the folks at Walmart were understanding.

> >

> >Do something nice for you tonight.

> >

> >Joan

> >

> >--- wrote:

> >

> > > Oh Group yesterday was awlful. I was at the

> > > therapist with when

> > > he did the " dirty Deed " .Of course I left his bag in

> > > the car.When I got

> > > to the car " no wipes " . I went to Walmart to buy

> > > wipes and I did not

> > > have any cash and I had left my credit card at a

> > > resturant the night

> > > before. Walmart told me to gets some wipes so I

> > > picked an .86 cent

> > > pack and the girl opened the package and told me, "

> > > take what you

> > > need " .I felt like I might need the whole pack but I

> > > did not want to

> > > seem ungreatful,so I took 1/4.I was cleaning up my

> > > little guy while he

> > > is spreeding you know what everywhere.I was afraid I

> > > would use all the

> > > wipes for his hands before I could clean his

> > > bottom. is very fast

> > > I really needed a pair of handcuffs. I just started

> > > crying and

> > > crying.I felt " why " do I have to go through this?

> > > Why does anybody

> > > have to go through this? When does life get better?

> > > Cyndi B

> > >

> > >

> > >

> > >

> > >

> > > --------------------------------------------------

> > > Checkout our homepage for information,

> > > bookmarks, and photos of our kids. Share favorite

> > > bookmarks, ideas, and other information by including

> > > them. Don't forget, messages are a permanent record

> > > of the archives for our list.

> > > http://groups.yahoo.com/group/

> > > --------------------------------------------

> > >

[Guest guest]

Group, I have to be grateful for not having to deal with this sort of issue.

" Butt " I completely sympathize with those of you that do. Jordan has gotten

into her own share of stuff in the past as well and I deal with other issues

that I'm not sure are asd related or not. Here's some of her adventures:

She's gotten into a huge bottle of baby powder twice - had it everywhere

including on herself.

While eating pudding, she decided to " decorate " herself from head to toe -

that happened frequently so whenever she ate something messy, I removed her

top.

She's managed to pull all Christmas ornaments within reach off the tree -

thankfully the only time she did that was the year she learned to walk.

Not nearly anything like what some of you have been going through, but still

challenging enough... especially that baby powder. That stuff is very

difficult to get out of carpeting with a vacuum cleaner that doesn't work

right to begin with.

Judi

Re: I had a melt down

> > >Date: Tue, 10 Oct 2006 19:16:27 -0700 (PDT)

> > >

> > >Ooooooooooooooooooooo.

> > >

> > >I remember " those days. " I have to say that I'm

> > >forever thankful that Andy is pretty good about using

> > >bathrooms and letting me know. Except for " sometimes. "

> > >But the unexpected messes in public are a distant

> > >memory.

> > >

> > >It does get better.

> > >

> > >But Oh my.......there are days when WE ARE ALLOWED TO

> > >CRY!

> > >

> > >You are a good Mom. You did your very best under very

> > >human circumstances. Unfortunately,others don't always

> > >get that you're just donig the best you can.

> > >

> > >I " m glad the folks at Walmart were understanding.

> > >

> > >Do something nice for you tonight.

> > >

> > >Joan

> > >

> > >--- wrote:

> > >

> > > > Oh Group yesterday was awlful. I was at the

> > > > therapist with when

> > > > he did the " dirty Deed " .Of course I left his bag in

> > > > the car.When I got

> > > > to the car " no wipes " . I went to Walmart to buy

> > > > wipes and I did not

> > > > have any cash and I had left my credit card at a

> > > > resturant the night

> > > > before. Walmart told me to gets some wipes so I

> > > > picked an .86 cent

> > > > pack and the girl opened the package and told me, "

> > > > take what you

> > > > need " .I felt like I might need the whole pack but I

> > > > did not want to

> > > > seem ungreatful,so I took 1/4.I was cleaning up my

> > > > little guy while he

> > > > is spreeding you know what everywhere.I was afraid I

> > > > would use all the

> > > > wipes for his hands before I could clean his

> > > > bottom. is very fast

> > > > I really needed a pair of handcuffs. I just started

> > > > crying and

> > > > crying.I felt " why " do I have to go through this?

> > > > Why does anybody

> > > > have to go through this? When does life get better?

> > > > Cyndi B

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > --------------------------------------------------

> > > > Checkout our homepage for information,

> > > > bookmarks, and photos of our kids. Share favorite

> > > > bookmarks, ideas, and other information by including

> > > > them. Don't forget, messages are a permanent record

> > > > of the archives for our list.

> > > > http://groups.yahoo.com/group/

> > > > --------------------------------------------

> > > >

[Guest guest]

Dear Margaret,

recently Neil is making weird noises while he sleeps, that I have never heard

before...and it is scaring me a bit.....and he wakes up frequently moaning....

mfroof@... wrote:

<<Dear Group, Has anyone have any children or adults with sleep apnea?

>>

Hi, Everyone........Gareth has had a C-Pap machine for 3-4 yrs

now....he's 18. He uses it every night because he knows that it keeps him

breathing.

I guess he use to wake up gasping for air and now he doesn't.

Take care, Everyone.

Margaret

[Guest guest]

My biggest fear is that Janie won't let them attach the electrodes at all since

she hates having anyone mess with her hair/head and is big on pulling out pony

tail bands or even pulling her own hair hard (or out).

-------------- Original message --------------

From: mfroof@...

<<She is having a sleep study next Monday to find out. Do you think someone

in your family has it?>>

Hi, Everyone........make sure you take a camera. I wish I had one for

Gareth when he had his study done.....all them wires hooked up to him!!!

Also....Gareth had big issues with all the wires laying against his skin.

Something to keep in mind. They put pieces of cloth between the wires and his

skin

for him. Take care, Everyone.

Margaret

[Guest guest]

In a message dated 10/29/2006 3:43:07 P.M. Eastern Standard Time,

pastmidvale@... writes:

Does Birgitta have Medicaide?

Because she was a special needs adoption she idiomatically qualified for

medicaid. This dentist was on that plan. There are only three dentists on her

plan that accept medicaid within one hour driving.

I have very good care for her in other areas. We go out of plan for her

pediatrician because I love and trust him. She sees a naturopath (on the plan)

and also gets PT (out of pocket). I am very happy with those services and

am confident in my abilities to care for her. I do not know it all nor do I

try to pretend I do. But I do research and learn everything I can. I am

willing to try alternative ideas and listen to advice of " knowledgeable "

people.

It is just so frustrating when I meet a doctor or any specialist who thinks

they " know " what is best for my daughter. It is especially frustrating when

said doctor knows nothing about her special needs and they start giving me

advice on what I must be doing wrong.

I have educated my fair share of the medical field and guess this dentist

was the last straw in an already crazy stressful week.

Blessings, W

[Guest guest]

In a message dated 10/29/2006 4:46:43 P.M. Eastern Standard Time,

stamtorch@... writes:

Because she was a special needs adoption she idiomatically qualified for

medicaid.

I really must need some sleep. " idiomatically " ???? doesn't even come close

to a typo for " automatically " . My keyboard must be possessed.

Blessings, W

in CT

homeschooling mom to AJ (12), (8), ^l^,

(just turned 5, Trisomy 18 mosaic aka syndrome) and Birgitta (age 3,

adoption finalized 2/1/05 !!, Trisomy 21 aka Down's Syndrome, Fetal Alcohol

Syndrome, SID )

[Guest guest]

Sounds like you are a huge advocate and your children are lucky to be with you.

Keep up the great work!

Holly

Re:

In a message dated 10/29/2006 3:43:07 P.M. Eastern Standard Time,

pastmidvale@... writes:

Does Birgitta have Medicaide?

Because she was a special needs adoption she idiomatically qualified for

medicaid. This dentist was on that plan. There are only three dentists on her

plan that accept medicaid within one hour driving.

I have very good care for her in other areas. We go out of plan for her

pediatrician because I love and trust him. She sees a naturopath (on the plan)

and also gets PT (out of pocket). I am very happy with those services and

am confident in my abilities to care for her. I do not know it all nor do I

try to pretend I do. But I do research and learn everything I can. I am

willing to try alternative ideas and listen to advice of " knowledgeable "

people.

It is just so frustrating when I meet a doctor or any specialist who thinks

they " know " what is best for my daughter. It is especially frustrating when

said doctor knows nothing about her special needs and they start giving me

advice on what I must be doing wrong.

I have educated my fair share of the medical field and guess this dentist

was the last straw in an already crazy stressful week.

Blessings, W

[Guest guest]

Hi ,

I didn't reread my post before I sent it and it's not much better. I didn't

even welcome you to the group, so much for manners. My son is sick tonight and I

was running back and forth to him and the computer. It's one of those days. FYI

- a class action suit was filed last year in CT regarding the lack of dental

care available to children with medicaid. I do know that ARC also filed on

behalf of those with disabilities, not that that helps your situation.

Charlyne

Mom to Zeb 13 DS/OCD/ASD?

stamtorch@... wrote:

In a message dated 10/29/2006 4:46:43 P.M. Eastern Standard Time,

stamtorch@... writes:

Because she was a special needs adoption she idiomatically qualified for

medicaid.

I really must need some sleep. " idiomatically " ???? doesn't even come close

to a typo for " automatically " . My keyboard must be possessed.

Blessings, W

in CT

homeschooling mom to AJ (12), (8), ^l^,

(just turned 5, Trisomy 18 mosaic aka syndrome) and Birgitta (age 3,

adoption finalized 2/1/05 !!, Trisomy 21 aka Down's Syndrome, Fetal Alcohol

Syndrome, SID )

[Guest guest]

In a message dated 10/29/2006 11:47:30 P.M. Eastern Standard Time,

charlyne1121@... writes:

FYI - a class action suit was filed last year in CT regarding the lack of

dental care available to children with medicaid. I do know that ARC also filed

on behalf of those with disabilities, not that that helps your situation.

It may help to know. I will mention it when I speak to her health insurance

company. Who knows I have rocked the boat so much there that they may just

let me go out of network just to shut me up! LOL

Blessings, W

in CT

homeschooling mom to AJ (12), (8), ^l^,

(just turned 5, Trisomy 18 mosaic aka syndrome) and Birgitta (age 3,

adoption finalized 2/1/05 !!, Trisomy 21 aka Down's Syndrome, Fetal Alcohol

Syndrome, SID )

[Guest guest]

welcome to the group, love your determination, you will love this

group for it’s support.

Louise Mom to 44, DS, Deaf, ASD (diagnosed at 41)

Re:

In a message dated 10/29/2006 11:47:30 P.M. Eastern Standard Time,

HYPERLINK

" mailto:charlyne1121%40sbcglobal.net " charlyne1121@-sbcglobal.-net

writes:

FYI - a class action suit was filed last year in CT regarding the lack

of

dental care available to children with medicaid. I do know that ARC also

filed

on behalf of those with disabilities, not that that helps your

situation.

It may help to know. I will mention it when I speak to her health

insurance

company. Who knows I have rocked the boat so much there that they may

just

let me go out of network just to shut me up! LOL

Blessings, W

in CT

homeschooling mom to AJ (12), (8), ^l^,

(just turned 5, Trisomy 18 mosaic aka syndrome) and Birgitta

(age 3,

adoption finalized 2/1/05 !!, Trisomy 21 aka Down's Syndrome, Fetal

Alcohol

Syndrome, SID )

[Guest guest]

>

> is 11.

Good idea about the closed captioning. I'll give it a try. Yes,

has rewinding syndrome! In fact, the rewind and play buttons

on her vcr are completely worn off. We also have a DVR and now she

knows how to rewind the live tv. That drives all of us crazy. She

waits until every one else who's watching leaves the room and then

asks if it's ok if she uses the arrow. Meaning she wants to rewind!

<<When we're at home, she watches pretty much all the time.>>

>

> Hi, Everyone........Brain freeze here...how old is ?

A lot of

> our kids are very OCD and can't get out of routines very well. If

she insists

> on watching TV, do what I did when Gareth was younger. Turn on

the closed

> caption and start reading to her. Stand in front of the TV and

point out the

> words. You'd be surprised how quickly she may make the

connection. That's

> how Gareth learned so many sight words. He could read words, but

couldn't

> turn around and say the say sentence without seeing the words.

Now he spells to

> us whenever we don't understand him. Does she also have 'tape

rewinding

> syndrome' ?!?!? Same spot over and over and over and over

again!!!

> Take care, Everyone.

> Margaret

>

>

>

[Guest guest]

Elie also rewids -thankgoodness the price of VCR's has dropped - we are now

buying them at $30.00! I have 2 stockpiled - I fear that they will be

obsolete soon. But rewind helps him learn words besides being an OCD thing.

The closed captioning (when we let him watch TV, drove him nuts - he

couldn't stand the flicker of the words.

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To:

>Subject: Re:

>Date: Tue, 31 Oct 2006 23:05:10 -0000

>

>

> >

> > is 11.

>

>Good idea about the closed captioning. I'll give it a try. Yes,

> has rewinding syndrome! In fact, the rewind and play buttons

>on her vcr are completely worn off. We also have a DVR and now she

>knows how to rewind the live tv. That drives all of us crazy. She

>waits until every one else who's watching leaves the room and then

>asks if it's ok if she uses the arrow. Meaning she wants to rewind!

>

>

>

><<When we're at home, she watches pretty much all the time.>>

> >

> > Hi, Everyone........Brain freeze here...how old is ?

>A lot of

> > our kids are very OCD and can't get out of routines very well. If

>she insists

> > on watching TV, do what I did when Gareth was younger. Turn on

>the closed

> > caption and start reading to her. Stand in front of the TV and

>point out the

> > words. You'd be surprised how quickly she may make the

>connection. That's

> > how Gareth learned so many sight words. He could read words, but

>couldn't

> > turn around and say the say sentence without seeing the words.

>Now he spells to

> > us whenever we don't understand him. Does she also have 'tape

>rewinding

> > syndrome' ?!?!? Same spot over and over and over and over

>again!!!

> > Take care, Everyone.

> > Margaret

> >

> >

> >

[Guest guest]

: I know Robin & for a few years. actually did a

Christmas notecard of Tori a few years back.

Liz

RE:

Date: Sat, 28 Oct 2006 21:21:06 -0400

>Dear Robin,

>Your son does beautiful work. Thank you for sharing it. I am on a

>Down Syndrome/Autism listserve. May I share 's website with

>them.

>Thank you,

> Gaffney

[Guest guest]

In a message dated 11/1/2006 4:40:09 P.M. Eastern Standard Time,

d_sloan@... writes:

He will never talk. He is

catching on a bit to object communication. Toileting, well, we just take him

every few hours. I don't know if he'll ever be trained. Does " healthy and

happy " need to be our only motto? Does any one out there have an older child

who is or was very delayed, and can give us some advice. Maybe I just need

to hear that everything is going to be ok!

Dana,

Trisha is 14 and still not toilet trained completely, she is still listed as

non-verbal but her communication has grown a lot. There is more to

communicating than just talking. She is just learning to read, in fact I taped

her

last night reading her 3 new interactive books we got from Mayer-. I

can't tell you how proud we were just listening to her. No you can't

understand every word she spoke and her signs are approximations but we

understood and

anyone who is close to her will learn her way of communicating. What were

they using with , ABA, Floortime etc.? Never give up and don't get too

discouraged. It just sounds like they don't know how to work with him and

don't want to be bothered to find the right key that opens the door to reach

him. The key is there, you may have to keep hunting until you find it but it's

there. Trisha communicates all the time with us now, we use total

communication with her and you'd be surprised just how much they have to tell

us.

What kind of assessments have you had done, AT, Behavioral, Reading, Speech,

Sensory? Does he use a communication device or symbols or pictures to

communicate? Do you use sign language? I'm not expert but it sounds like he

needs a

way that works for him to be able to communicate. Trisha has done more

" talking " since we introduced signs to her and the more signs she learns the

more words she is speaking. It is not 's disability that is the problem

it's that those who are supposed to be teaching him don't know how and what you

need to do is to find things that work and teach them how to teach your

son. Trisha just started official ABA last year at age 13 so don't let them

tell you he's too old!

Sit down and write all the positives you can think of about , then sit

down later and write down all the things you see he needs help with, look

at the positives and see how those can help with the learning style he needs.

Also, find things he really likes and use those as motivators. What are

things he really likes? Use those for reinforcers. What are things he doesn't

like but has to do? Then make sure you pair something he likes right after

something he doesn't like to give him incentive to do the task he doesn't like

so well. Hope this makes a little sense. :-)

Carol

Trishasmom

She isn't typical, She's Trisha!

[Guest guest]

That is wonderful. I may get him to do my son.

RE:

> Date: Sat, 28 Oct 2006 21:21:06 -0400

>

> >Dear Robin,

> >Your son does beautiful work. Thank you for sharing it. I am on a

> >Down Syndrome/Autism listserve. May I share 's website with

> >them.

> >Thank you,

> > Gaffney

>

>

[Guest guest]

Healthy and safe are the only criteria that Mediaide cares about but I would

think family sanity needs to have a part!. How about habilitation? Does he

go out in the community at all? Does he have a mobility instructor? How

are his visual needs being met?

As to toileting: Elie (now 21) had no vision problems wworth talking about

and he is at least somewhat verbal. HE was not bowel trained until he was

over 14. He was trained for voiding at age 5.

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To: < >

>Subject: Date: Wed, 1 Nov 2006 14:31:40 -0700

>

>Hello friends,

>

>It's been a while since I have posted. I'm feeling like I need some support

>at the moment.

>

>You may remember that our 10 year old son with DS-Autism has

>significant visual impairment. He is very delayed and needs assistance with

>everything.

>

>We have had support from Autism Partnership this past year in a home based,

>after school program. ( attends a school for special needs kids.

>Integration is not an option.)

>

>AP told us that they will not be accepting this coming year as they

>don't feel this is the program for him our family. My husband and I are

>very

>discouraged by this. We feel we need some direction. Is it time to just

>stop

>trying to get involved in a program? He will never talk. He is

>catching on a bit to object communication. Toileting, well, we just take

>him

>every few hours. I don't know if he'll ever be trained. Does " healthy and

>happy " need to be our only motto? Does any one out there have an older

>child

>who is or was very delayed, and can give us some advice. Maybe I just need

>to hear that everything is going to be ok!

>

>Thanks in advance,

>

>Dana

>

>

>

>Sloan family; Hal, Dana, Frazer 15, 13, 10. Calgary, Canada

>

>

>

>

>

>

>

>

[Guest guest]

He does wonderful work. is actually going to do a new one of Tori for

us this year. I sent them out as Christmas cards. Those who received them,

loved them.

Liz

RE:

> Date: Sat, 28 Oct 2006 21:21:06 -0400

>

> >Dear Robin,

> >Your son does beautiful work. Thank you for sharing it. I am on a

> >Down Syndrome/Autism listserve. May I share 's website with

> >them.

> >Thank you,

> > Gaffney

>

>

[Guest guest]

Hi ,

I am trying to play catch up and read past posts. If Trisha know her letter

sounds etc. a multisensory, systematic, code based approach has proven to be

effective in teaching reading. mood Bell reading program also helps with

speech articulation and is an offshoot of Orton Gillingham. Research has proven

that students with DS have the same difficulties learning to read as students

with dyslexia. Not all too long ago it was thought that people with intellectual

disabilities could not be taught to read. They were only taught to memorize a

few functional words. There has been numerous research studies in the past few

years on teaching people with intellectual disabilities to read. They have found

that using this approach produced results taught by a teacher fully credentialed

in this methodology.

Charlyne

Mom to Zeb 13 DS/OCD/ASD?

kristen3kids wrote:

>

> Her reading has improved as well and she is now reading the

> small interactive books from Mayer- with some help with new

words. Next

> we start on comprehension.

Hi Carol. How do you know Trisha is reading? Does she use sign to

say the words? really struggles with reading, she's 11. She

is very verbal but hard to understand. She knows all, well most, of

the letters and sounds, and can say the first sound of words when we

ask, but cannot decode words. I've asked her school to go back to a

strong sight word based program. What are the interactive books

you're talking about? I'd love more info on reading from anyone.

Thanks,

[Guest guest]

,

I'm going to echo Margret's statement. I would definatly stop that

medication. nothing about that behavior sounds normal. If it's

interfering with eating and drinking fluids, it's probably not good.

Laci()

>

> <<Question about Ritalin....Angie started it, 2.5 mg twice a day. She

> just cries all afternoon, won't eat, drink, etc. Is this common?

> >>

>

> Hi, Everyone.......is this the way she is normally? If not,

then if it

> was my child, I would stop the med. A medicine should not make your

child

> miserable. Just my two cents worth.

> Take care, Everyone.

> Margaret

>

>

>

>

[Guest guest]

: Tori just started Ritalin a while back and was started at that dose. It

worked really well the first week, and then KABOOM. She too cried all afternoon

and lost her appetite. We cut the Ritalin back to 2 mls. 2 x a day and it

doesn't make her as whiney and she has her appetite back.

Liz

<<Question about Ritalin....Angie started it, 2.5 mg twice a day. She

just cries all afternoon, won't eat, drink, etc. Is this common?

>>

Hi, Everyone.......is this the way she is normally? If not, then if it

was my child, I would stop the med. A medicine should not make your child

miserable. Just my two cents worth.

Take care, Everyone.

Margaret

[Guest guest]

Wayne,

I'm not sure about the accuracy of this information. My understanding is

that ritalin enters and leaves the system in approx. 4 hours. This would mean

that even if given in a.m. and at noon it would be fully out of the system by

at least the next day. I don't believe there is a consistent blood level that

is achieved with ritalin.

That is one problem why it often isn't a preferred medication because the

levels increase and decrease so quickly causing a quick up and down rather than

a smooth level of medication in the system that longer lasting stimulant

medications provide.

I have seen moodiness, tearfulness,etc, in our son when the stimulant

medication is wearing off. Sometimes a low dose for afternoon helped with this.

Karyn

In a message dated 11/16/2006 10:13:53 A.M. Central Standard Time,

writes:

I have to agree with the other posts. Ritalin should not be causing

this reaction. You can check any side effects by going to

www.rxlist.com or type ritalin in a search engine. The actual full

effects of Ritalin take 10 -14 days of use according to Josh's first

Doc. Also Ritalin is not recomended for children under 6 Yrs old.

Josh started at 2.5mg when he was about 13 and had to be adjusted as

he got older but did not have this reaction. Make sure you doctor is

aware of this reaction. On a side note for the cold and flu season

some cough and decongestion OTC meds can or will interact with

Ritalin causing it not to work properly. Hope this helps

Wayne K

Dad to (23)-DS, Josh(22) -DS/PDD-NOS/Dad

Remember

Doing your best means never stop trying

>

> : Tori just started Ritalin a while back and was started at

that dose. It worked really well the first week, and then KABOOM.

She too cried all afternoon and lost her appetite. We cut the

Ritalin back to 2 mls. 2 x a day and it doesn't make her as whiney

and she has her appetite back.

>

> Liz

[Guest guest]

I have to agree with the other posts. Ritalin should not be causing

this reaction. You can check any side effects by going to

www.rxlist.com or type ritalin in a search engine. The actual full

effects of Ritalin take 10 -14 days of use according to Josh's first

Doc. Also Ritalin is not recomended for children under 6 Yrs old.

Josh started at 2.5mg when he was about 13 and had to be adjusted as

he got older but did not have this reaction. Make sure you doctor is

aware of this reaction. On a side note for the cold and flu season

some cough and decongestion OTC meds can or will interact with

Ritalin causing it not to work properly. Hope this helps

Wayne K

Dad to (23)-DS, Josh(22) -DS/PDD-NOS/OCD

Remember

Doing your best means never stop trying

>

> : Tori just started Ritalin a while back and was started at

that dose. It worked really well the first week, and then KABOOM.

She too cried all afternoon and lost her appetite. We cut the

Ritalin back to 2 mls. 2 x a day and it doesn't make her as whiney

and she has her appetite back.

>

> Liz

>

>

>

> <<Question about Ritalin....Angie started it, 2.5 mg twice a day.

She

> just cries all afternoon, won't eat, drink, etc. Is this common?

> >>

>

> Hi, Everyone.......is this the way she is normally? If not,

then if it

> was my child, I would stop the med. A medicine should not make

your child

> miserable. Just my two cents worth.

> Take care, Everyone.

> Margaret

>

>

[Guest guest]

<<Have you looked into the shots that will decrease periods to 3-4 times a

year? And decrease flow as well? Or birth control which will help with

moods swings and decrease amount??>>

Oh boy, have we ever! I have several rxes for BC pills including seasonale the

3-4 a year pill but by the time it is time to start them she is back to being

sweet and I chicken out, so afraid of how she reacts to every single med we have

ever tried. The shots I could never do as she would be the one to react

allergically and it would be too " permanent " . I guess I'm gonna go ahead and try

a BC pill now. I just can't stand it anymore. She is becoming ferocious and

violent. Tylenol helps somewhat(alot actually). I keep hearing from the young

gals who work for us tho that BC pills can cause boob growth and pain and

headaches etc. But right now she is trying to squeeze and pull off her boobs all

the time. I'm not sure if it's a pain issue or just a OCD thing where she's

discovered them and feels they don't " belong " there.

Nobody wants to work with her anymore, and I'm actually afraid of her and very

cautious when I get too near. it's breaking my heart. I think I'm gonna phone

our endo right now for yet another script.

Sherry

[Guest guest]

Liz, thank you so much for that! I copied it and put it up next to my

Holland poem!!

>

> <<: We actually live in " Beirut " =) Liz>>

>

> Hi, Everyone........this is the 'poem' for autism.

>

>

> WELCOME TO BEIRUT by F. Rzucidlo

>

> (Beginner's Guide to Autism)

>

> I am often asked to describe the experience of raising a child with

> autism---to try and help people who have not shared in that unique

experience to

> understand it, to imagine how it would feel. It's like this.

>

> There you are, happy in your life, one or two little ones at your

feet. Life

> is complete and good. One of the children is a little different

than the

> other but of course, he's like your in-laws, and you did marry into

the family.

> It can't be all that bad.

> One day someone comes up from behind you and throws a black bag

over your

> head. They start kicking you in the stomach and trying to tear your

heart out.

> You are terrified, kicking and screaming. You struggle to get away

but

> there are too many of them……they overpower you and stuff you into a

trunk of a

> car. Bruised and dazed, you don't know where you are. What's going

to happen

> to you? Will you live through this? This is the day you get the

diagnosis.

> " YOUR CHILD HAS AUTISM " !

>

> There you are in Beirut, dropped in the middle of a war. You don't

know the

> language and you don't know what is going on. Bombs are dropping

" Life long

> diagnosis " and " Neurologically impaired " . Bullets whiz by

" refrigerator mother "

> or " A good smack is all he needs to straighten up " . Your adrenaline

races as

> the clock ticks away your child's chances for " recovery " . You sure

as heck

> didn't sign up for this and want out NOW! God has over estimated your

> abilities.

>

> Unfortunately, there is no one to send your resignation to. You've

done

> everything right in your life, well, you tried. Well, you weren't

caught too

> often. Hey! You've never even heard of autism before. You look

around and

> everything looks the same, but different. Your family is the same,

your child is the

> same, but now he has a label and you have a case worker assigned to

your

> family. She'll call you soon. You feel like a lab rat dropped into

a maze.

>

> Just as you start to get the first one maze figured out (early

intervention)

> they drop you into a larger more complex one (school). Never to be

out done,

> there is always the medical intervention maze. That one is almost

never

> completed. There is always some new " miracle " drug out there. It

helps some kids,

> will it help yours? You will find some if the greatest folks in the

world

> are doing the same maze you are, maybe on another level but a

special-ed maze

> just the same.

> Tapping into those folks is a great life line to help you get

through the

> day. This really sucks, but hey, there are still good times to be

had. WARNING!

> You do develop an odd sense of humor. Every so often you get hit by

a bullet

> or bomb---not enough to kill you, only enough to leave a gaping

wound. Your

> child regresses for no apparent reason, and it feels like a kick in

the

> stomach. Some bully makes fun of your kid and your heart aches.

You're excluded

> from activities and functions because of your child and you cry.

Your other

> children are embarrassed to be around your disabled child and you

sigh.

> You're insurance company refuses to provide therapies for " chronic,

life

> long conditions " and your blood pressure goes up. Your arm aches

from holding

> onto the phone with yet another bureaucrat or doctor or therapist

who holds the

> power to improve or destroy the quality of your child's life with

the stroke

> of a pen. You're exhausted because your child doesn't sleep.

>

> And yet, hope springs eternal.

>

> Yes there is hope. There ARE new medications. There IS research

going on.

> There ARE interventions that help. Thank God for all those who

fought so hard

> before you came along. Your child WILL make progress. When he

speaks for the

> first time, maybe not until he is 8 yrs old, your heart will soar.

You will

> know that you have experienced a miracle and you will rejoice. The

smallest

> improvement will look like a huge leap to you. You will marvel at

typical

> development and realize how amazing it is. You will know sorrow

like few others and

> yet you will know joy above joy. You will meet dirty faced angels on

> playgrounds who are kind to your child without being told to be.

There will be a few

> nurses and doctors who treat your child with respect and who will

show you

> concern and love like few others. Knowing eyes will meet yours in

restaurants

> and malls, they'll understand because they are living through

similar times.

> For those people you will be forever grateful.

> Don't get me wrong. This is war and it’s awful. There are no

discharges and

> when you are gone someone else will have to fight in your place.

But, there

> are lulls in wars, times when the bullets aren't flying and bombs

aren't

> dropping. Flowers are seen and picked. Life long friendships are

forged. You share

> an odd kinship with people from all walks of life. Good times are

had, and

> because we know how bad the bad times are, the good times are even

better.

> Life is good but your life in never normal again……but hey, what fun

is normal?

>

>

>

>

>

>

>

[Guest guest]

I can really see it, thanks for your post. 's brother is 18

months and very high pitched.

We got a call from the teacher, they ALL, ALWAYS worry about her

earing. She had gone to a conference where they talked about DS and

autism and they said don't always assume autism get hearing checked.

The teacher said they rang a bell behind her and she didn't look for

it. Well, every screen we've gone to, has the same results, they said

she's just not testable, but the ABR showed she can hear as low as 20

decibles. No one gets it. No one ever seems to think that ds and

autism can exist together. Anyways, when you pointed out the high

pitched sounds, it made sense!

Prayes for the CT results!

>

> Hi, Everyone.........Yes...that would be a sensory issue from

autism.

> There was a time (from ages 4-15) that Gareth would not allow his

brother to

> talk at the table or anywhere around him without getting all upset.

After

> 's voice changed, we figured it out!!! He still can't tolerate

crying

> babies, screaming toddlers, and the high pitched voices of young

girls and

> boys....and he's 18 y/o. He will tell me in church " make THEM go

away " as I am to

> get up and usher them out of the church. We would get respite to

take

> to a restaurant once a week just so we could talk to him and not

have Gareth

> sitting there mumbling under his breath " be quiet, Roo " " Shut up,

"

> ........obviously depending on his mood at the time!!! Head phones

with music

> helped a bit....if Gareth choose to wear them. Noise was a big

issue in JH,

> too, when they started changing classes with the banging lockers,

school

> bells, and LOUD, hyper kids. For a while, we pulled him from the

resource rooms

> and put him into a high functioning autistic support class ...grades

6-8. Now

> he's in the HS and changes classes and has no problems with

noises....except

> the fire drills. Hope you get some answers for from the

neuro.

>

> BTW.....Gareth had his CT scan today and they said the report would

be out

> to his Dr. by Monday. Obviously, they don't hurry these!!! I just

want some

> answers!!!

> Take care, Everyone.

> Margaret

>

>

>