To Eileen

[Guest guest]

Hello-

Certainly you are not being forward to mention the PDD. The professionals we

have seen already are dancing all over it already and I have pretty much come to

the conclusion myself and am ready to take the dx when it comes this month. We

have pretty much already dealt with it and are trying to take life day by day.

My son does take speech 3x a week and OT 2x week along with a music therapy

program which has been wonderful. We believe he is also on the mild side but

are still worried. His SLP is using the PECS system with hime 2x a week and

then we have another SLP 1x week who does the play based therapy. I am

currently looking for a special instructor but the area we live in has about

zero for resources.

Does your son attend any kind of special pre school? Mine goes to a private

preschool but it is not for special kids. I am thinking about moving him to a

special school but I am worried about the negative effects that a pre school

setting with more severe children might have on him. He gets along okay in the

school he's in now but the teachers there do not make him participate in

everything and do whatever he wants. They really do not try to intrude upon his

world and I wonder which road I should take. I feel like he does not need to be

left to his own and should be made to come around and face the human world. He

usually does but it takes him a while to " warm up " to other people. After a

while, he usually has to have some quiet time to deal with the overload.

Sorry for the book

Stacey

[Guest guest]

Dear Stacey,

Jack is 2 1/2 now and is still in Early Intervention he will attend

that until he is 3. He receives Speech 1hr a week and OT 1hr a week

through them and I have a prompt slp that comes 1hr a week that I pay

out of pocket. The pdd-nos dx was actually a godsend. I knew that

JAck had some real social and play issues but did not know too much

about Autisim/pdd to actually say that he had that.

After meeting with his psychologist it was alot easier to understand

how he could fall into that catagory. The program he is in for his

pdd is called " Building Blocks " They are a more intensive Early

intervention program. Building blocks is a supplemental program of

EI. The program is home based so the therapist is at your home for a

minimum of 5-30 hrs a week. We chose 6 1/2 based on a recomendation

by our psychologist and on the scheduele that Jack already has. I

felt that 9 1/2 hrs of in home 1:1 therapy was plenty and he also

goes to a play group through EI 5hrs a week so he has a plate full.

I have already started the transition to the school systems this month

and am hoping that JAck gets into a class that has both children like

JAck and model children. I do not want him in a mainstream class as I

know he would regress. It is 5 months away and who knows what he will

need then as far as 1:1 therapy as opposed to group therapy.

I think it sounds like your son is not going to benefit all that much

by being in a classroom like he is now, and it also sounds like you

already know that.

I was very depressed about the pdd label but looking back on that

time when I had to make the decision on whether to put him in the BB's

program I am so glad that I did.

Jack still is very shy and it also takes him a long time to warm up

to people. Jack also has lots of sensory issues in his mouth,

overstuffing, drooling although not as much now and sticking his

hands in his mouth. I bought him the vibrating star and he actually

uses it but still brushing his teeth is a issue. He will not let me

do it and when he does it he doesn't really do it. His pediatrican

says not to make a big deal about it, he'll be fine but it bothers me

that he does not really clean his teeth.

Do you have a Early intervention program where you are? Has the

school helped you with what needs and what is best for

him school wise? I know how difficult it is to feel like you are

putting your child through alot but you are really doing alot for him

to make his life and himself the best it can be. I really wish you,

and your family a very happy and healthy new year.

Sincerely,

Eileen P.S. How old is I never asked LOL!!

> Hello-

>

> Certainly you are not being forward to mention the PDD. The

professionals we have seen already are dancing all over it already

and I have pretty much come to the conclusion myself and am ready to

take the dx when it comes this month. We have pretty much already

dealt with it and are trying to take life day by day.

>

>

[Guest guest]

Hey Eileen

I thought of a question. What is your take on a Montessori school?

I am going to visit one close to where we live this week. From what

I understand, they are more in tune with the individual needs of the

child and what his strengths are more so that in the child keeping up

witht he rest of the class.

Thanks

Stacey

[Guest guest]

Dear Stacey,

I am not familiar with a Montessori School, is it

school just in your area or are they all over the

country? I am curious.

We are currently looking for a new home in another

state, I am currently in Massachusetts and am moving

to New Hampshire, we figured we would do it now,

before Jack turns 3 in May instead of going into the

school system here and then having to change. I do

think though that every child is different and you

need to feel that your son will do well in whatever

situation you put him in. What might work for one

child may not work for another.

I am very nervous and concerned with what and where

JAck ends up but the good thing is hopefully if I do

not like it I can change it.

I am wondering though and am currently searching the

special Ed programs in the area where we would like to

live. Let me know about the Montessori School .

Thanks,

Eileen

> Hey Eileen

>

> I thought of a question. What is your take on a

> Montessori school?

> I am going to visit one close to where we live this

> week. From what

> I understand, they are more in tune with the

> individual needs of the

> child and what his strengths are more so that in the

> child keeping up

> witht he rest of the class.

>

> Thanks

>

> Stacey

[Guest guest]

Hi, Eileen. Just curious if the muscle weakness in Jack's mouth causes any

feeding problems?? I was feeding Wiley pieces out of a pot pie tonight and

he was totally loving the beef, but he just chewed and chewed and chewed and

chewed and finally spit it back out, not much changed from how it entered.

Same thing with apples - I actually have one bowl to eat from, one bowl to

spit out into. Isn't that gross? And it's totally run of the mill here.

As the sensory stuff is subsiding, the muscle tone is getting noticeable

again to me. Do typical 2 year olds handle beef??

Also, I would think overall low muscle tone would be the issue with the

aneasthesia (sp!), not just low muscle tone in the mouth. If it is overall,

then it could affect the respiratory system. Wiley has low muscle tone with

its chief target as his whole swallow system, but no one talked to me about

that prior to his surgery and he did really well. Upper body muscular

weakness would seem to me to mean truncal / postural strength. Wiley had

some issues with that and still does to some degree.

Betsy

>From: " seanzonigal " <seanzonigal@...>

>Hi ,

>Thank you so much for this, I too am glad that your son did not have

>any problems with the anesthesia, I have never been told of any

>muscle weakness in the upper body, do you mean in his mouth, or in

>his trunk area, I am concerned but want to know exactly what I need

>to ask the Dr. before I call. Jack has muscle weakness in his mouth,

>Maybe I should ask his OT about that, Hmmmm!

>I appreciate you writing to me, I will let you know how it goes.

>Eileen

[Guest guest]

Hi Betsy -

Just to tell you, my son Riley can eat a steak like no body's

business - and has been able to since he was almost 2. My older son,

however, couldn't bite an apple to save his life until recently.

(this is another reason I've been questioning the apraxia diagnosis -

thinking it's a poor muscle tone thing...) Anyway, it's hard to know

what's normal and what's not when you have no real point of

comparison, isn't it? Just thought I'd answer part of your

question...

Marina

> Hi, Eileen. Just curious if the muscle weakness in Jack's mouth

causes any

> feeding problems??

[Guest guest]

-Betsy,

I have a hard time with Jack's diet, he definatley has low muscle

tone, does not eat steak at all, but he also has sensory issues in

his mouth too, so is it that he has a limited diet because of sensory

or from low tone?????

He will eat chicken nuggets but not baked chicken, he eats crunchy

foods, apples but he spits out the skin, he eats soft foods, so a

variety of different textures but only eats certain things.

I can't quite figure him out as far as what is causing his limited

diet, but I think next week when he goes to the OT I will discuss

this with her.

I am now really concerned about this being under and having low tone,

for when he has his adnoids out, I think I will call the DR's office.

Oh another thing, to get Jack to eat red meat he will chow down on

Meat balls like no ones business, but notice the meat balls are

easier to chew than a piece of steak.

Eileen

-- In @y..., " Burt " <bhollywood333@h...>

wrote:

> Hi, Eileen. Just curious if the muscle weakness in Jack's mouth

causes any

> feeding problems??

[Guest guest]

Hi Eileen:

From our experience- Dakota, now 10, used to only eat foods that he was actually

allergic to. In fact- he craved them , like a drug, which milk and gluten can

turn into when not processed properly via the digestive system. First did the

Feingold Diet- and slowly added in food groups. Took him off of all dairy-

amazing difference. Take Care, CJ

FYI:

www.nids.net

or

www.neuroimmunedr.com

[ ] Re: To Eileen

-Betsy,

I have a hard time with Jack's diet, he definatley has low muscle

tone, does not eat steak at all, but he also has sensory issues in

his mouth too, so is it that he has a limited diet because of sensory

or from low tone?????

He will eat chicken nuggets but not baked chicken, he eats crunchy

foods, apples but he spits out the skin, he eats soft foods, so a

variety of different textures but only eats certain things.

I can't quite figure him out as far as what is causing his limited

diet, but I think next week when he goes to the OT I will discuss

this with her.

I am now really concerned about this being under and having low tone,

for when he has his adnoids out, I think I will call the DR's office.

Oh another thing, to get Jack to eat red meat he will chow down on

Meat balls like no ones business, but notice the meat balls are

easier to chew than a piece of steak.

Eileen

-- In @y..., " Burt " <bhollywood333@h...>

wrote:

> Hi, Eileen. Just curious if the muscle weakness in Jack's mouth

causes any

> feeding problems??