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they have to do that aai xray at certain ages specifically growth ones, cant

remember exact, like 5,7, 10etc and then always before a surgery they check

every time even if they have always been negagitive. shawna.

Re: Donna

> In a message dated 1/8/2004 8:54:18 AM Eastern Standard Time,

> duffey48@... writes:

>

>

> > They want to start the horseback riding

> > at her school in the spring, which means another AAI x-ray.

>

> Hi Donna,

> I was under the assuption that once the AAI xray was done and clear that

it

> would not have to be repeated. Did I miss something? I'm felt terrible

hearing

> about your boys diagnosis but what is the treatment plan at that age? Is

it

> more a behavior modification on their end or does this actually involve

> medication too? Hope I your new year is better than last.

> Charlyne

> Mom to Zeb 11 DS/OCD

>

>

>

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  • 23 years later...

Hi Donna,

No problema. Did Maddie have a side effect with the brushing? What

reaction did she have?

had seemed zoned out, stoned like, drugged and you could see

it in his eyes. He was not himself when that had occured. Pretty

quiet, loss of appetite, very slow mode when verbally prompted, like

loss of hearing. Of course we know what that means and thats, that

he was not processing it all.

Today, has returned to school as I had kept him for 2 days at

home. I had noticed the same appearances. Who knows maybe he needed

a break. Maybe he was too bored as one school personal had told me

secretly, as she went to the class to spy on him and she did not see

the she knew and was also wondering why she was not invited

to the ARD Meeting. I did invite her but I was told that she was

unable to make the date I had requested. I have to watch out and not

get anyone in trouble and find ways to work around it. Hearing this

makes me want to scream because now I know I did wrong in not

following my insticts of rescheduling it, but I just wanted to get

it over with. I know I have a chance to request for another ARD

Meeting as I'm seeing that I disagreed with the one I just had, with

several stuff but I just feel too " over-stimulated/over-whelmed "

myself. I'll just go back to praying that things will get resolved,

especially now that I had sent the Disability Solutions Newsletter

for their reading pleasure.

I did want to rule out any underlying medical issues just in case he

was coming down with something and all had seemed fine, no fever or

low-grade fever as in the past.

Today, I'm also risking a test or trial. was pretty good

walking out of the house onto to the bus this morning without a

transition item. So, he went to school without a stimming or

reinforcement item. I know this was not fair for but I guess

I just wanted to see what they'll do so that I could have a come

back to drill it into their heads that this is part of 's

world incorporating sensory activities or the break down of things

that can trigger why he needs the comfort, shut down times, stimming

time, which must be done correctly.

The school districts OT forget him. I know I'm not done yet, just

building my ammo up so that they could see why its important for

them to get educated in this arena.

Just because the teacher had a one day autism workshop, what did she

learn from this? Maybe i should show her my credentials of what I've

attended and still need all the updated resource. In order to learn

the basics of Autism it sometimes requires 2 days as I've attended.

That is just to start off with. I guess I'm expressing my feelings

since I did not do anything about it.

Can you tell how upset and concerned and sad for . I do have

friends with the Autism team but sometimes its like pulling teeth as

I could see they're still learning with the flow. Plus is a

little of everything, one unique person.

During his stay at home I had followed up with the sensory

diet/activities and he had seemed pretty content by the second day.

This morning he was pretty cooperative. I guess he was tuned out and

I had to help bring his brain back on track.

Makes me mad, I don't want him to regress.

I now know he can learn and can do lots of things, he can be taught

its just working around those odd peculiar issues.

Yesterday when he was himself, he kept giving me hugs with smiles.

He followed me around to help me with the household chores, even

requested which food he wanted in his own way. ated

beautifully at the hair salon yesterday evening. Well, I could go on

and on but I'll stop here. Ok, this help get it out my system, ready

for my challenges.

Thanks for your time.

Hugs!

Irma,15,DS/ASD

> Oh Irma dear, always share. I wasn't criticizing the

site....just

> responding to Louise's question on patterning. And as far as

brushing, it's not for

> everyone certainly. Heck, we've done it to each other to see

what it's like

> for Maddie and it drove me bonkers...;-) I'm glad you stopped

quickly

> too...I feel if you ever see anything adverse, stop immediately.

> Louise, they use those little surgical brushes for brushing

programs. There

> are various kinds and I remember ordering them from my OT and/or

sensory

> catalogs, only to find them later in the dollar store for um, a

dollar....LOLOL

> Donna

>

>

>

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  • 3 weeks later...
  • 1 month later...

In a message dated 12/22/2003 2:13:14 PM Eastern Standard Time,

duffey48@... writes:

> Alison has the flu and we are

> doing our very best to keep her as far away from Maddie as possible. Her

> fever went up to 104.7 Saturday night...

Hi Donna,

I hope will recover quickly. The flu is scarey this year. Did any of

your kids get the flu shot? I hate when the kids get sick esp around the

holidays. Prayers that Maddie stays flu free.

Charlyne

Mom to Zeb 11 DS/OCD

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I hope that Alison gets better. The flu is defentently going around down

here it's scarey. I hope that everyone gets better casue it's the week of

the best holiday around. .

rebecca

Merry Christmas. Happy Holidays, Y'all!!

> In a message dated 12/22/2003 2:13:14 PM Eastern Standard Time,

> duffey48@... writes:

>

>

> > Alison has the flu and we are

> > doing our very best to keep her as far away from Maddie as possible.

Her

> > fever went up to 104.7 Saturday night...

>

> Hi Donna,

> I hope will recover quickly. The flu is scarey this year. Did any

of

> your kids get the flu shot? I hate when the kids get sick esp around the

> holidays. Prayers that Maddie stays flu free.

> Charlyne

> Mom to Zeb 11 DS/OCD

>

>

>

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  • 3 weeks later...

In a message dated 1/8/2004 8:54:18 AM Eastern Standard Time,

duffey48@... writes:

> They want to start the horseback riding

> at her school in the spring, which means another AAI x-ray.

Hi Donna,

I was under the assuption that once the AAI xray was done and clear that it

would not have to be repeated. Did I miss something? I'm felt terrible hearing

about your boys diagnosis but what is the treatment plan at that age? Is it

more a behavior modification on their end or does this actually involve

medication too? Hope I your new year is better than last.

Charlyne

Mom to Zeb 11 DS/OCD

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In a message dated 1/8/2004 10:22:07 AM Eastern Standard Time,

charlyne1121@... writes:

<<Hi Donna,

I was under the assuption that once the AAI xray was done and clear that it

would not have to be repeated. Did I miss something? I'm felt terrible

hearing

about your boys diagnosis but what is the treatment plan at that age? Is it

more a behavior modification on their end or does this actually involve

medication too? Hope I your new year is better than last.>>

Thanks Charlyne!! The doc told us that the older they are dx'd, the more

beneficial it is to go the med route. n has started adderall and it has

helped tremendously. Joe will see someone next week who will write a scrip

for him also...probably the same I would imagine. Joe told me today that

he's actually very happy with the dx...at least now he has a game plan and the

thing that he knew wasn't right has a name.

As for the AAI, the school told me that they have to have been done within 3

years of starting the riding. Maddie's had two x-rays, but they were at 18

months (when they put tubes in her ears) and at 3, the required age to be

tested.

Thanks again Char!!

Donna

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In a message dated 1/8/2004 1:20:34 PM Eastern Standard Time,

duffey48@... writes:

> The doc told us that the older they are dx'd, the more

> beneficial it is to go the med route.

Hi Donna,

I think you are quite the Mom, usually at your guys age, we as parents tend

to discount everything once they are grown. You were attentive enough to have

them tested. Your guys don't know how lucky they are. Hoping the meds make them

feel more comfortable in their lives. As far as the AAI testing, I asked

because I thought once they were given a clear xray that the spine does not

change. Do you know if this is correct? Just another thing I may have to worry

about,LOL.

Charlyne

Mom to Zeb 11 DS/OCD

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In a message dated 1/8/2004 9:08:38 PM Eastern Standard Time,

charlyne1121@... writes:

<<Hi Donna,

I think you are quite the Mom, usually at your guys age, we as parents tend

to discount everything once they are grown. You were attentive enough to have

them tested. Your guys don't know how lucky they are. Hoping the meds make

them

feel more comfortable in their lives.>>

Aw thanks Charlyne!!! That's very sweet of you to say, and I needed to

hear it. I am a firm believer that once you are a parent, you are always a

parent. It's strange, but I remember the first feeling I had when my mom died

shortly after my dad, was that I was suddenly thrust into adulthood.....never

mind that I was over 37 when they both passed!!!

<<As far as the AAI testing, I asked

because I thought once they were given a clear xray that the spine does not

change. Do you know if this is correct? Just another thing I may have to

worry

about,LOL.>>

I don't believe it changes Charlyne, but I think for insurance purposes, the

schools and agencies that host horseback riding therapy need to have a recent

x-ray. Here is an excerpt from Dr. Len's ds-health site, written by Dr.

Cohen:

" If in fact asymptomatic AAI is not the precursor to symptomatic AAI, the

current protocol [X-rays at 3, 12, and 18 years of age] should be abandoned. I

would suggest that the devastating nature of cord compression and the technical

difficulties in assessing children with developmental disabilities has led to

the current quandary. Few organizations would be willing to take

responsibility, however limited, for a recommendation that might lead or be

perceived to

lead to steps that would fail to protect individuals with DS from a spinal cord

injury. "

BTW, I had spinal cord compression when I had a ruptured disc in my neck (had

to have emergency spinal fusion surgery). It's VERY scary!!!

Donna

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In a message dated 1/9/2004 1:51:32 PM Eastern Standard Time,

duffey48@... writes:

> however limited, for a recommendation that might lead or be perceived to

> lead to steps that would fail to protect individuals with DS from a spinal

> cord

> injury. "

Hi Donna,

I actually read this some time ago, ok insurance, I feel better.

Charlyne

Mom to Zeb 11 DS/OCD

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  • 1 month later...

In a message dated 2/15/2004 3:05:18 PM Eastern Standard Time,

duffey48@... writes:

> Gosh, I bet you wanted to DECK that

> nurse!!!!! & amp;nbsp; & amp;nbsp;What kind of a person does that to a kid,

especially

> our kids with all

> their issues. & amp;nbsp; & amp;nbsp;Makes me furious!!!!

> Hope Zeb is feeling better dear!!!!

Hi Donna,

I can't tell you what I wanted to do to her and still do. I am finally

relieved that she got caught. I had a PPT meeting with the nursing supervisor to

discuss the nurses neglect of Zeb in October. The ped had written orders to the

school nurse that Zeb needed assistance when he has diarrhea. Zeb has a medical

plan attached to his IEP regarding this issue. I could never totally prove

the nurses neglect. With attorneys and an ed consultant observing and overseeing

Zeb's school program it was very stupid on the staff's end. I always say,

everybody has their day! I will confront the team, nurse and the music dept. on

February 23 after school vacation in a meeting. I refuse to accept only an

apology. I will persue the harshest consequences. Wish me luck and pray. Zeb is

finally feeling better.

Charlyne

Mom ot Zeb 11 DS/OCD

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In a message dated 2/18/2004 9:46:38 AM Eastern Standard Time,

duffey48@... writes:

> Keep us posted on how you make out at the

> meeting on Monday. And we'll pray that Zeb's anxiety behaviors don't

> return due

> to this event.

Hi Donna,

I am going to hate monday. The group will be the first place I head to. I

will keep you posted. Thanks

Charlyne

Mom to Zeb 11 DS/OCD

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