Re: School

[Guest guest]

Hi all,

Luca will be starting school in November - this is what we have on his IEP

so far (we haven't signed it yet so there might be additions):

* inclusion in an integrated classroom with one other child with special

needs, 10 typical kids and 1 teacher and 4 assistants.

* a commitment to provide one-on-one interaction with the primary teacher

who is trained in the floor-time, play therapy approach we have been using

with Luca

* speech, physical therapy, and occupational therapy with a focus on

sensory integration on a rotating basis 1/2 hour each day in the classroon.

* 10 hours/week at-home therapy with a private therapeutic group that

specializes in floor time therapy.

* once a month home visits by Luca's primary teacher to coordinate with the

at-home therapist.

We are very happy with this level of services that the school will provide

on a year-round basis. Luca's teacher seems very anxious to work with him.

She has already put up a big construction paper birthday cake in her

classroom that says " happy birthday Luca! " for when he arrives (we were

VERY happy when we heard this!). Luca's delays are significant: although he

is almost 3 his motor and cognitive skills are in the 12-18 months range in

many categories (although in other areas he is further along). He is

essentially non-verbal but his receptive language skills are good (although

he doesn't always want to do what you tell him, he does understand a lot

:-) ). His sign language is also improving and he is increasingly alert.

Luca's condition is complicated by some autistic tendencies he has.

Dan

[Guest guest]

In a message dated 10/4/99 4:27:03 PM Eastern Daylight Time,

luannee@... writes:

<< What makes it so difficult is that she can't tell me about her day. I

did have the teacher agree to a traveling notebook, and she had a very nice

note telling me what Mahrya did today, but I sure wish Mahrya could tell me

about it. >>

Hi Luanne:

Glad to hear Mahrya's first day of school went well. I can definitely

sympathize with wanting her to be able to tell you about her day. The

notebook will be very helpful in knowing what Mahrya has done in school and

to give you a means to communicate with her teacher. I wish still

had one to use with her teacher. This year is beginning to tell me

about her day, in bits and pieces. It helps if I know what her schedule is,

then I can ask her specific questions which makes it easier for her to tell

me things. I don't always get very many details, and there are times I still

don't know what she is talking about, but I'm getting more this year than

last year so I guess that's progress.

and I would like to wish Mahrya a very Happy 3rd Birthday. Hope it

was a special day for her and for you!

ann (Mom to MDS 6 yrs old and 9 yrs old)

[Guest guest]

Hi Dan,

My son (almost 8) also has autistic tendencies along with the MDS.

It's very interesting to hear that there are others who have both with as

rare as MDS is. I also have a 4 1/2 year old daughter, Shelby, who was

diagnosed in June with autistic spectrum/PDD. Both kids receive special

services through the school district and I'm very pleased with the progress

of both! A good school district really makes a difference and I'm really

thankful we were able to find one. The first one we were in when

was in ECSE was NOT good! Right now spends the larger portion of

his day in the mainstream classroom and is pulled out to get his special

services or brought aside when he needs one-on-one :-). Luca sounds like he

is doing great! I'd love to hear more about how he is doing as time goes

on!

Jen - mom to (MDS)8yr, Shelby (PDD)4 1/2yr, and Calli - almost 2

Re: school

>

>

>

>We are very happy with this level of services that the school will provide

>on a year-round basis. Luca's teacher seems very anxious to work with him.

>She has already put up a big construction paper birthday cake in her

>classroom that says " happy birthday Luca! " for when he arrives (we were

>VERY happy when we heard this!). Luca's delays are significant: although he

>is almost 3 his motor and cognitive skills are in the 12-18 months range in

>many categories (although in other areas he is further along). He is

>essentially non-verbal but his receptive language skills are good (although

>he doesn't always want to do what you tell him, he does understand a lot

>:-) ). His sign language is also improving and he is increasingly alert.

>Luca's condition is complicated by some autistic tendencies he has.

>

>Dan

>

>

[Guest guest]

Hi Jen,

Wow! We are not alone! :-). I have yet to meet another family with a child

with both conditions. I must say though, the term " rare " has very little

meaning for us anymore. Having experienced Luca's cocktail of unusual

conditions whenever a doctor tells my wife and I, " don't worry, it's

extremely rare " we just look at each other and smile. Luca's type of MDS is

also rare - he has a 21q21q onian translocation (which means that an

extra 21 long arm in his trisomy cells is attached to another 21 long arm).

Anyway, if you don't already know, there is an email list for individuals

with DS and autism:

http://www.disabilitysolutions.org/.htm

I have found it to be useful, although not quite as nice as this one :-).

I look forward to hearing more about !

Dan

[Guest guest]

Hi Ann,

Have you thought of continuing the notebook. Even though can talk, I'm

not always sure if what's she's telling me has any basis in fact. So in her

IEP we are requiring a communication notebook just like in early childhood.

It's so helpful and it really doesn't take the teacher very long each day to

just jot a note.

Sue

[Guest guest]

In a message dated 10/6/99 2:14:30 PM Eastern Daylight Time, SCarMGar@...

writes:

<< So in her IEP we are requiring a communication notebook just like in

early childhood. >>

Hi Sue:

Actually I never thought to ask for that as part of her IEP, what a good

idea. I miss the daily notes I used to get from her teachers. I do have a

notebook system for her speech therapist, which is mainly where she puts

's homework, but we do use if for writing notes to each other as

well. Last year I met with 's teacher several times or would write

her notes if I had a question about something. I would also get info from

's speech therapist.

I have to say this year is a bit better about telling me what she

does in school, but sometimes I am still in the dark. I have to go back to

the committee in Dec. maybe I'll ask for the classroom teacher to use a

notebook, even if it's not everyday, just to get some feedback.

I spoke to 's speech therapist today and she told me was

doing well and that her classroom teacher says she is just like all the other

kids in the class. I think she is off to a good start, but I'm still keeping

my fingers crossed. I hope has gotten off to a good start in school

this year too.

Take care.

ann (Mom to MDS 6 yrs old and 9 yrs old)

[Guest guest]

Last year Jolena's teacher used a daily report sheet that listed all the

subjects so she would just fill in if she had any homework...but every single

day she would write comments on it how Jolena was doing and then I would

write back and Jo would give it to her every morning, if there was ever a

concern the teacher would always call me first thing in the morning, and I

picked Jolena up every night, so she would come out to see me...it helps to

see them alot...be there as often as you can, even if you feel like a pest.

I think the teachers feel much more connected to you and your child and they

want things to work too. (most of them)

Jolena is 11 and she still isn't real good about telling me what is going on,

she is getting much much better though. She will tell me if she has homework

now, which is great, and I hear bits and pieces of her day, it sure is hard

when you don't!!

Jolena loves to draw..and she is very good at it...soo anytime there is ever

any problems I can always tell, her backpack is full of pictures..which means

she was not paying attention in class and was not doing her work....this

years teacher is watching more closely for that..and that has kind of

stopped. But that has always been my cue to make a visit again and see whats

up.

The start of each school year takes time to readjust again...getting to know

a new teacher and for Jolena to feel comfortable again...her main problem is

shyness (but that makes teachers think of something else)...once she gains

her confidence they usually see her potential and then things are fine. We

had a rocky start this year...last years teacher was sooo wonderful..very

organized and took time for each individual child, she was amazing, this year

Jolena has a man teacher and things were alittle shakey at first..but its

coming along now. I pick Jo up every day, soo there is alot of contact. We

had 3 IEP meetings in the first 2 weeks to figure things out...but it seems

to be working now!! Call meetings anyyyy time you feel things are not going

right...I feel very blessed with our school system, we live in a very small

town and everyone is just wonderrful with her and very quickly will help in

any way they can.

Deb (Mom to Jolena 11 mds, Noah 14, Josh 17)

[Guest guest]

Luanne,

I have the opposite problem... I get a blow by blow report on everything

that happened in school that day... Austin pulled this one's hair... Logan

got sent to the head mistress' office for saying bad words... Kate wouldn't

let me swing today.... I didn't get to sleep fast enough, so nap was too

short... get the picture. She is such a little busy body, and a great

reporter! Maybe that will be her future career. lol

----------

> From: Nekotek@...

> To: MosaicDSonelist

> Subject: Re: school

> Date: Monday, October 04, 1999 8:18 PM

>

> From: Nekotek@...

>

> In a message dated 10/4/99 4:27:03 PM Eastern Daylight Time,

> luannee@... writes:

>

> << What makes it so difficult is that she can't tell me about her day.

I

> did have the teacher agree to a traveling notebook, and she had a very

nice

> note telling me what Mahrya did today, but I sure wish Mahrya could tell

me

> about it. >>

>

> Hi Luanne:

>

> Glad to hear Mahrya's first day of school went well. I can definitely

> sympathize with wanting her to be able to tell you about her day. The

> notebook will be very helpful in knowing what Mahrya has done in school

and

> to give you a means to communicate with her teacher. I wish

still

> had one to use with her teacher. This year is beginning to

tell me

> about her day, in bits and pieces. It helps if I know what her schedule

is,

> then I can ask her specific questions which makes it easier for her to

tell

> me things. I don't always get very many details, and there are times I

still

> don't know what she is talking about, but I'm getting more this year than

> last year so I guess that's progress.

>

> and I would like to wish Mahrya a very Happy 3rd Birthday.

Hope it

> was a special day for her and for you!

>

> ann (Mom to MDS 6 yrs old and 9 yrs old)

>

>

[Guest guest]

Sorry I haven't been on here for a while. I am just now getting caught up

on about 3 weeks of e-mails (I may get through by the end of the day???)

Anyway, is in his second year of Special Pre K and they have a FORM

that the teacher can check off the routines, ie. went to the potty___with

assistance ____by himself, etc. What they read today (she just jots it in)

His behavior.etc. It is great and saves the teacher time. You might want

to suggest something along that line. I can even let you know what all is

on it. Hope this helps.

Sharon (mother of Matt 4 MDS, 6)

><< So in her IEP we are requiring a communication notebook just like in

>early childhood. >>

>

[Guest guest]

Dear Jeanne,

was in half day reg ed kindergarten last year and did a great job.

We decided though (in part because our district was going to full day

Kindergarten) for her to repeat Kindergarten. After all, even at 6 1/2 she's

not the oldest in her class this year. Anyway, our district's usual policy

also is that spec ed kids don't repeat grades. We felt that, since she may

be in school until she's 21 anyway, why not give her more time on the lower

end where her skill levels are close to the other kids. It was truly the

best decision we could have made. This year her printing skills have emerged

(last year she could barely write her name) - although they have a ways to

go, she recognizes letters and know their sounds. In other words she's

doing what all the other kids in Kindergartens are. She has also matured

alittle socially. I think first grade would have been frustrating for ,

us and the teachers. Two years of Kindergarten have really given her a solid

foundation for first grade next year.

Look at 's emerging skills. If they are typical of first grade -

then move on. Otherwise, why not give her another year to build her

self-confindence and improve her skills.

Of course, what was right for may not be at all right for .

There are so many things to think about when we make decisions for our kids.

Good luck with your decision.

Sue (Norah 11 yrs., 6yrs MDS & ADD)

[Guest guest]

From , (mother of Annie, 17)

Hi Jeanne,

You asked me about Annie's experiences in regular classes. Well, here

it is;

First of all, I am a teacher of exceptional needs children with the public

school system. I have alot of respect for teachers and therapists, but I

also am aware of the fear that go through some regular teachers when they

hear that a downs syndrome child is going to be in their class. (They are

not usually familiar with the term " mosaic downs syndrome " ) I have personal

knowledge of teachers who have kids with handicaps in their classes who have

" written them off " just waiting until the school system put the child in a

special class, because " they couldn't possibly learn like the other children "

or " I'm a regular teacher, I'm not qualified to teach a special needs child " .

I believe children only give what is expected of them. Sometimes we can

expect more than they can give, but we must not lower our standards without

first giving them the opportunity to develop as normally as possible.

With that in mind, my husband and I decided not to volunteer the

information that Annie was mosaic. (You see, Annie looked pretty close to

" normal " ) We believed that if it was determined Annie needed special

education, we would cooperate with the process to determine her needs. And

of course, we wanted her to have every service she could get -- but only if

she needed it. A label, (and special educ. services) should be compared to a

person who has a broken leg. If the leg is broken, then a cast ( like

special services) is needed. But if the leg is just sprained, a cast

(special services) only hinders the healing and gets in the way of moving

around normally.

So Annie went to kindergarten. She was tested for overall abilities and

was found to be functioning in the low average range but did not qualify for

anything but speech-language services. Her problem was mostly language

development. (speech was relatively good). But because many children

receive speech-language services, we still didn't feel the need to tell them

about the mosaicism. Later, she began OT services. Although, I feel sure

the teachers suspected something was amiss with Annie, they continued to

expect her to do average work. And she did. Social immaturity was of great

concern, though, and we did hold her back in a transitional kindergarten

class the following year. (This class was designed for children who had

achieved academically, but were not ready socially for kindergarten.) This

class was great for her.

Since then Annie has continued in regular classes. There have been

times when a little extra strategy was needed, and we were able to work this

out with teachers as they occurred. (Examples: extra help making sure

assignments were written down (grade 3 and 4), and teachers sometimes had to

ask her directly if she had understood the directions) There have been some

classes that were harder than others and Annie has spend lots more time

studying than the average student. She needs to in order to succeed, but she

wants to and she is a determined child. Now she's in her junior year in high

school and she has had some problems. Again, most of her problems relate to

her biggest weakness--social skills. She wants to be like everyone else, but

she's just that little bit different--and her peers pick up on that. It's

caused her to be diagnosed as socially phobic and depressed. She's getting

better. One way we tried to help her was to take her out of some of her

hardest classes. We finally had gotten to the point that the classes were

too hard. It was causing her too much stress. Now she has an easier

schedule (still reg. ed) and she's doing better. She's much happier.

I've rambled on and on. I hope this is helpful. I realize that our

approach to education is not for every child, and had Annie been a different

child we may have chosen a different course, but because Annie is

high-functioning, it worked for her.

Good luck, and let me know what you decide.

Sincerely,

[Guest guest]

,

I really enjoyed reading about Annie's experiences in school. It's kind

of weird b/c it never occurred to me that I didn't have to make Maggie's MDS

diagnosis known. As I've " listened " to you and others on this list talk

about not telling their child and others about the diagnosis, it really

makes me think. Just the other day I called a women who runs a music program

for preschoolers to find out more about the program. I never mentioned

Maggie's MDS. This was a strange experience for me. I'm not sure whether or

not she's going to participate, but I will most likely tell the teacher if

she does. While Maggie doesn't have obvious physical features of DS, she is

smaller than her same age peers and definitely less developmentally mature.

On the one hand, I think that we could get by without telling, I feel pretty

certain that other people would notice that she was different from the other

children, putting me in a somewhat awkward position.

I find that I encounter this issue in many settings and typically get

a case of the " butterflies " in my stomach. For example, when talking to

another parent of a typically developing child of Maggie's age that I don't

know well. Whenver I hear such parents discussing their child's

accomplishments, for example potty training or language development, and I

am asked these types of questions about Maggie, I feel very uncomfortable.

Ocassionally, I have found myself exaggerating Maggie's abilities and skills

just so I don't have to deal with the curious reactions of others when I say

that, for example, Maggie is just learning to talk at 3. It's like if I

don't add that she has MDS, then people just don't seem to understand that

her development is atypical. My husband doesn't seem to share my feelings. I

don't think he really gives it much thought.

It probably sounds like I am rambling, but I would like to know if

other parents on this list have experienced these type of feelings and what

strategies do you employ to deal with them, etc.

Thanks,

Carla Duffy

MO Maggie 3 1/2 (mds)

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

In a message dated 1/22/00 3:00:54 PM Eastern Standard Time,

duffyjj@... writes:

<< Just the other day I called a women who runs a music program

for preschoolers to find out more about the program. I never mentioned

Maggie's MDS >>

Hi Carla:

I have struggled with the issue many times of whether or not to tell people

about 's mds. I called a dance school to ask about their program

and did tell the owner I was looking for a program for my daughter who has

down syndrome but that I wasn't looking for a special ed program. I asked

whether I should put her in a class with kids a year younger. She made me

feel comfortable by telling me there was no reason why shouldn't go

into the preschool class. She was 4 yrs old at the time. When

started the class I didn't tell the teacher about the mds. This is

's third year in the same dancing school with the same teacher. She

still doesn't know about the diagnosis. Sometimes I will ask the teacher how

behaved because there are times when becomes distracted.

Her teacher told me is doing fine " after all an hour is a long time

for a (now 6 yr old) to pay attention " . I guess the point of the whole story

is if you feel Maggie is able to do the activity (whatever it may be, music,

dance, gymnastics) then it is really your choice whether or not to tell the

instructor. Initially I didn't tell Chistine's dance teacher, gymnastics

instructors, Brownie leaders or Sunday School teachers. I didn't want them

to underestimate what would be able to do and I also wanted them to

treat her the same way they treat the other kids. If that meant she needed

to be disciplined then I wanted them to discipline as well and not

just expect less than perfect behavior from her because she has mds. There

have been times I felt maybe I should have told 's dance teacher or

gymnastics instructor because is not always as attentive as she

should be. But she is not the only child to become distracted.

I always found it difficult when talking to other parents of " typical " kids

that you meet at different places. I don't usually tell them about the mds.

Sometimes that meant I really didn't share much information about

with other parents, but I tend to be a private person anyway and if I don't

know you very well then why should I share my daughter's diagnosis with you?

If it was a parent who had a child in special ed then I may have told what

's situation was only because that person could relate to the

situation.

To this day I still struggle with who should I tell and when. Only her

teacher and speech therapist know her diagnosis. For activities outside of

school I haven't felt it was necessary for the instructors to know. If

's behavior was unacceptable and it became obvious that she was very

different from the other kids involved in the activity than I would probably

let the instructors know but otherwise I didn't see a need to. I guess

everyone has to make that decision for themselves and find what they feel

comfortable with for themselves and for their child.

ann (Mom to mds, 6 yrs old and 10 yrs old)

[Guest guest]

Ann,

Thanks for your thoughtful reply. I'm glad to know that other parents

struggle with this too.

Carla

MO Maggie 3 1/2 (mds)

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Thanks for the info. It was very helpful. I just want to make the

right decision for her. Since they already know about the MDS I have to make

them see how high functioning she is. I just feel that she has to live and

exist in a " normal " world so why should she have to be segregated in a

special class. The special ed people tell me that she benefits from a small

group setting and one on one instructions. She needs short step by step

directions and that higher multi level thinking is and will remain difficult

for her. I know for sure this year would not have worked for her in a reg

class. But I would like her to be in one next year. I wanted her to repeat

Kindergarten. They tell me that when a child has a learning disability, even

if you have them repeat a grade the learning disability will still be there.

That may be but I think in my daughters case maturity and concentration will

be better next year.

I have another question. How do I know if my daughter is learning to the

best of her potential and if she isn't then how will I know if it is because

of her ability or the teachers to teach her? Unfortunately I do not like her

special ed teacher and I find myself questioning everything she teaches her.

I am not a teacher and I am going on gut instincts. I don't know if you can

tell but I am also driving my self nuts over this. I want my daughter to do

well. And I know I am having a hard time accepting her learning disability.

She is so normal in everything else it is hard watch her struggle with

learning.

This is long, sorry. I am a single mother also and everyone on the list is

my support with these problems. My ex really has no clue.

Take care,

Jeanne (Mom to Nicky 12, le 10, and 5 MDS)

[Guest guest]

Hi Jeanne,

Obviously, I don't know , but if you feel that a regular

kindergarten placement is the best one for her next year, you should fight

for it. You can never underestimate the benefits that a " near normal " child

can get from the exposure to the good language models (peers), and you'll

never really know if she can do what is expected of the other children if she

is not given the chance. My feeling, as a special education teacher, is that

even if she cannot " get " all of the lessons taught in regular kindergarten,

she will most likely learn as much (probably more) than she would in a

special class. You can also get special resource services (this is where the

special ed. teacher either comes into the class to help with the academics or

would pull-out for a short time during the week to reinforce her

instruction of academics.) Sometimes, when a child has significant needs,

they should be in a special class, but if a child is showing a slight (up to

a year delay), they usually do better in the regular setting. Especially in

the lower grades. I think every child who does not have a severe delay needs

to be given the opportunity to try kindergarten. The only exception is if

they display behaviors that interfere with the other students learning in the

class.

As a teacher of exceptional needs pre-schoolers with the public schools,

I send many of my kids on to regular kindergarten. If there is any doubt

about which way they should go, I send them to kindergarten with resource

services. (the special education teacher will see them either in the class

or in a pull-out program to support the academics.) 9 times out of l0, this

works well. Later in their school career, they may need special ed. classes,

but at least they get one more year of typical language models and

instruction.

I spent several years as a teacher of special educ. classes, and what I

found is that now matter how good a teacher you are, or how much you love

those kids, you only have the resources to teach basically to the " mean " or

the " average need " of the class.

I tried my best to individualize instruction, and did to the best of my

ability, but it's a very difficult thing to do. What I found was that the

highest and the lowest of the class did not get the kind of instruction that

best suited their needs. Especially, the highest child was not pushed to

their greatest potential. And even more importantly, in a special class, the

highest student does not have any models to show them what they need to

strive toward. Often, there is very little language from the other children.

What we know as educators, is that children learn more from their peers than

they do from teachers at a very young age. They model their behavior from

other children.

This letter sounds so high and mighty, I'm sorry. It's just I feel

strongly about this issue. I'm really not so opinionated about other things.

Remember, you, as a parent, have the most power to decide your child's

placement. You also know your child better than anyone else. Go with your

instincts, if you're wrong, it will become obvious. At the very least, all

that will need to be done, is change classes. That's no big deal. It's also

important to investigate potential teachers. A good, positive teacher is the

best key to success. You really need to make some friends within the school.

Is there a counselor or someone who could help you?

Good luck! Let me know how it goes.

(mother of Annie,17, and , 19)

[Guest guest]

Dear Jeanne, I read your letter and wanted to respond immediately. I have 3

boys, 7, 5 and 3. , my 3 year old has MDS and obviously is not in

kindergarten. But plain old life experience has taught me to got with my gut

instincts and I can say they have NEVER been wrong. YOU know your child

better that anyone and YOU know her strengths and weaknesses. Trust yourself

and fight for your daughter's right to receive the education she deserves.

There are many well meaning " specialists " out there who can tell you a

million things that your child can and cannot do, but you are the true

" specialist " . And, you will be one of the few (excluding all of us on this

list!!!!!!) who knows that her potential far exceeds what those in the

special ed field say she can do. I am sorry her dad is not there to help

you, I know it must be tough, but if you need someone to blow off steam too,

please feel free to email me. I like to get on my soapbox every now and

then!!!! Just remember...GO WITH YOUR GUT!!!!!

mom to 7, Casey 5 and 3 MDS

[Guest guest]

Dear ,

Although your letter was not written directly to me I wanted to thank you.

You didn't sound high and mighty at all, just very knowledgable in your

field. It was so very refreshing to hear a specialist say that as parents,

we know our child(ren) best and what is right for them. I have found with

that he does very well in his therapy classes, but does excellent at

regular daycare. He does everything all the others do at 3 except talk, and

in this family...that's not a bad thing!!!!!!

Thank you again for being so passionate regarding this topic!! We need more

like you who are willing to see our kids as individuals and who will listen

to us and OUR expertise when it comes to OUR children. I too am passionate

about this...can ya tell???????

mom to 7, Casey 5 and 3 MDS

[Guest guest]

Dear ,

Thanks so much for letting me know you appreciated my opinion. I was

afraid of sounding too pushy. I don't want to give the impression that this

is the only way for our kids to be successful in school. Regular classes are

not the answer for every child, but when a parent truly feels regular class

is best, they're probably right. Thanks again for your vote of approval.

(mother of Annie, MDS, age 17, and , l9 who is away at

college. Annie and I miss her terribly!)

[Guest guest]

Dear ,

You are so welcome. I agree that regular school is not for every child but

that is regardless of whether or not they have DS. There are so-called

" normal " kids that would probably benefit from a special class. My husband

is a special ed teacher and a high school football coach and even he, in the

beginning, thought my expectations for were too high. Although he is a

teacher, in his class the kids who are in special ed are EMRs and actually

really do not have special needs. His only dealings with people who had down

syndrome were those who were teenagers and adults so he was as new at it as I

was. This is where the statement " Ignorance is Bliss " fits perfectly. I had

NO interaction with anyone with special needs and I was 34 when was

born. I did not know what to expect so I expected the best out of him, still

do. Mike did not want me to get hurt when did not meet my expectations

but I feel that if we as parents don't believe in him no one else will. I

would rather cry every day for a month if couldn't do something I wanted

him to do than not challenge him,as I do my others, to do his very best. I

don't want the DS to be an easily used excuse. If he tries and does not

succeed then that's fine and NOT failure because he tried. I realize I am

rambling and I am sorry. I sound like a tyrant but I promise I am not. I

just want to educate society into seeing that these kids are very promising

adults of tomorrow and that down syndrome does not mean failure. It is one

of life's many obstacles, we all have one or more, and we will learn to work

with it and find success. Thanks for listening to me!

Mom to 7, Casey 5 and MDS 3

[Guest guest]

Dear Sharon,

No I don't think I have heard of the Hanen program and YES!...I would love

more information. I am very interested in learning other ways of

communication. Even before was born, I wanted to learn sign language

and now I have a great opportunity to do so. Thank you, thank you, thank

you. Please let me know how Matt is doing.

Mom to 7, Casey 5 and MDS 3

[Guest guest]

In a message dated 1/25/00 10:42:09 AM Eastern Standard Time,

Catknapp75@... writes:

<< My feeling, as a special education teacher, is that

even if she cannot " get " all of the lessons taught in regular kindergarten,

she will most likely learn as much (probably more) than she would in a

special class. >>

Hi :

Since you are a special ed teacher as well as a parent of a child with mds,

there is something I would like to ask you. I have tried asking this

question to many professionals and no one can ever explain it to me.

My daughter is 6 yrs old and in a regular ed first grade. She

recieves speech 2x a week, one pull out, one push in. Her difficulty centers

around the use of reasoning skills and then being able to express her answers

verbally. When the subject matter becomes abstract the difficulty increases

greatly, especially if there is no visual que. Answering " why " questions are

hard for her when she has to explain the " because " part of the answer. She

had a homework assignment that reduced her to tears. It involved completing

sentences that were about snow. For example, " When I see a snowflake I feel

like..... " and " The best thing about snow is.... " We got through the

assignment by me changing the wording several times for her and giving her

examples, but she had alot of frustration in trying to complete it.

Now here's my question. Is the ability to use critical thinking skills and

also being able to verbally express these thoughts something that can be

helped with speech and language therapy or does this involve her cognitive

ability? Is this something that can improve as she gets older or should I

just accept that she may not be able to use higher level thinking skills. So

far has done very well keeping up academically, but as she moves on

through the elementary grades I know these skills will become more important

and more will be expected from her. Do I wait until that happens and then

what? Is that when resource room will be needed? My school district relies

heavily on scores on standardized evaluations in order to qualify for support

services. 's scores are mostly in the average range with the

exception of the subtest of the language eval that involved critical

thinking. Since it is only one area my school district is hinting strongly

that should be transitioned out of the speech and language program.

I don't agree with that as long I see my daughter struggling at times to

express her thoughts.

I was wondering if Annie had any difficulties in that area and if she did

what did you do to help her overcome this? Sorry this is so long. If you

have any thoughts on this subject I'd love to hear them.

ann (Mom to mds, 6 yrs old and 10 yrs old)

[Guest guest]

< I would rather cry every day for a month if couldn't do something I

wanted him to do than not challenge him, as I do my others, to do his very best.

I don't want the DS to be an easily used excuse. If he tries and does not

succeed then that's fine and NOT failure because he tried.>

,

I couldn't have said it better myself. I believe that teacher can be our major

obstacle because if my daughter is not able to do something I think that they

give up easier or her and just attest it to the MDS than push her to achieve.

I wish more teachers felt the way that you do.

mom to 9 MDS and Hannah 2

[Guest guest]

Dear ,

You said it! Even with my belief that we must never underestimate the

abilities of our children, I still have to watch myself. Sometimes, I find

myself expecting less of her too. It's so easy to nurture them into

helplessness!

(mother of Annie, mds, 17)

[Guest guest]

Dear ann,

You could be describing Annie at the same age! Yes, Annie has always

done well with " academics " , but she had trouble with critical thinking

skills and answering questions. She still has weaknesses in both these

areas. I think every person has their strengths and weaknesses, and usually

they learn to compensate for the weaknesses throughout their lives. These

are biggies though and Annie is still learning to compensate.

I work closely with a speech-language therapist, and I believe that this

service is very helpful to build skills in both those areas. Your daughter

should keep this service, but it's important when you are developing goals

for the IEP that you stress the language weaknesses. The goals should

directly pertain to answering open-ended questions and expanding on a subject

(for instance, tell what other endings a story could have, or what might have

happened in a story if changes were made to it). Practice definitely helps

build those skills. Be aware though, that these will probably always be

somewhat challenging for her.

Something else I should tell you is that these weaknesses directly

effect how a child " fits in " socially. Language is so important to the

acquisition of social skills. And social skills are so very important to

making friends and feeling connected to the world. This is Annie's big issue

right now. Some school systems offer " social skills groups " where they can

practice and role-play real life situations. This helps compensate for

weaknesses in critical thinking. Annie was in one of these groups just one

year in elementary school and it was helpful. Unfortunately, it wasn't

offered by the schools after that. What I find with Annie is that she does

very well when skills are " taught " in a traditional fashion. (math, science,

etc.) But she has never been good at " incidental " learning. What I mean by

that is; learning by watching others, picking up information through other's

conversations, etc.. If I tell her we are going to learn about a subject,

explain it to her, she'll learn it, but there are a million scenarios I

cannot predict, so I can't teach her everything she'll need to know in life.

This is how I see her weakness in critical thinking manifest itself.

Now that Annie is older, her weakness in answering questions is becoming

more apparent. It's not only answering questions, but just responding in

general. She does OK with the family, but when others talk to her, she's so

afraid of saying something that's not quite appropriate, she waits too long

to answer. It's unnerving for the person waiting for her response. I think

this weakness has been worsened by her " social phobia " (she has been

diagnosed fairly recently with this).

I hope I haven't scared you. It's really not that bad. She functions

pretty well in the real world. Again, knowing what I know now about her

weaknesses, I would have strived harder in her early life to address these

problems. Maybe if you do, your daughter won't be as affected by her

weaknesses as Annie has been.

Let me know if I can answer any more questions.