what would YOU do??

[Guest guest]

Amy's reply is excellent!!! I think the more positive we try to be in

helping people see another way is great. Good luck Kathy

[Guest guest]

> So here's my problem. His regular ed teacher drops the following bomb:

> " Well, since I had a girl with DS in my class THIS year, I was really

looking

> forward to having an 'easy' year next year without any special needs

> students.....but then the principal told me that I HAD to take your son,

so

> here I am! "

I would try to in a nice way point out to the teacher the enormity of her

mistake, while at the same time documenting what she said, ie-- send her a

note, maybe with a book like Teaching Reading to Children with Down Syndrome

(or something else you felt could help a tacher for your child in an

academic setting), along with a dated note which you will keep a copy of,

saying something like " thank you for coming to observe ~ in class the other

day. I am looking forward to working with you this school year. I must

say, however, that I was shocked by your comment that you felt you were

being " forced " to take my son in your class when you did not want any

children with cognitive disabilities. Obviously you were not getting

adequate support last year. I want to make sure you have everything you

need to help you teach my son, so you will find enclosed a copy of <book>.

Also, if there is anything else you feel you need, let me know, and I will

do my best to work with you to get it into the IEP, as I feel teacher

support is essential. I also think it is essential that a teacher feel

positive about her students. I am hoping you were just having a bad day.

I'm sure you would not want to prejudge my son based on an experience you

had with someone else. I think perhaps it might be helpful if you got to

know my son on an informal basis, to hopefully allay your fears. Therefore,

I wanted to see if you would be free for lunch sometime in the next couple

of weeks. I am looking forward to getting to know you. Sincerely, ~

That way, you are steering her in the right direction nicely, offering her

some help, which may improve her attitude, and also documenting her horrible

remark in case you need to use it at a later date, should things NOT

improve.

Amy P. esq and proponent of documenting!

[Guest guest]

In a message dated 11/9/01 7:04:23 AM Pacific Standard Time,

jmedlen@... writes:

<< So....what do I do? Do I allow Rex the liberty of grieving and not having

to work so hard all day (which I think is taking hte easy way out, which

he usually does) or do I deal with criticism and questions from my family

(along with feeling the additional loss of not having him there along with

the loss of my grandmother) and feel like a wench for asking Rex to step up

to the plate?

j >>

So sorry Joan. Prayers and ((((hugs)))) for you and your family. How about

half and half Joan? Can Andy go to school until a certain time and then Rex

bring him to the church? Can you have a respite worker or family member help

at the church? Maybe do the church service and not take him to the graveside

service? Though that didn't seem to be a problem at your uncles service.

What do *YOU* want Rex to do? What can *YOU* feel comfortable with all day

so you don't have to worry or feel guilty? What can Andy comfortably handle?

What can Rex comfortably handle? I know my dh would say the same as Rex and

I would resent him for it, but if I forced him to deal with Seth, I would be

very uncomfortable all day anyway. Hope you get it all worked out so you can

all manage the day in a way that is right for all of you. Oh, my first

instinct was how I feel about my dh.....for once just do what you should be

doing, take care of the kids and let me trust that you can do it right so I

can have one day to grieve. LOL But, what I feel and what I say and do are

usually opposites. LOL I would end up making all the arrangements for

Seth's care myself and worry how my dh is handling the day TRYING to support

me. LOL Good luck Joan, and again my sympathies.

Gail :-(

[Guest guest]

Joan,

Unfortunately, I've had plenty of experience dealing with losing loved

ones in these last years. I just went to a service for my SIL's father on

Tuesday. is such a nice girl--I love her. She's your age. AND

NEVER been to a funeral!!!! Her father's was her first. A shame I think.

Her family is not religious. Me and my other SIL were talking about how

important we think it is to bring up children in faith and to let them

experience the *death* process, in terms of church, God, burials,

funerals......my kids were at both my parents' services. Now, not Maddie.

But that was for Maddie's benefit. It's too terrifying for her; otherwise,

she would have been there. Joan, my experience and most I know has been

that kids are the best medicine for adults during grieving times. I

honestly don't know how I would have gotten through it all if it weren't for

my kids and nieces and nephews. Maybe Rex would be surprised to see how

Andy can help through this event.

And Joan, I'm so sorry!!! Death is always hard, whether expected or not!!!

{{{hugs}}}}

Donna

[Guest guest]

Joan,

I vote for including Andy. Is there someone else that can help with Andy (if

need be) other than Rex or ??

Kathy

What would you do??

Hi all:

I " m seeking opinions because I'm too distraught to trust my judgement.

My grandmother, a lovely 89 year old matriarch from Czechoslovakia, died

tuesday. She was very family-centered and loved my boys vehemently. Her

family was her life-line. She has 4 children, 10 grand children, and 20

great-grandchildren.

Her funeral will be in a church (assume large sanctuary and building) on

tuesday at 1:30. The kids ahve school tuesday. My oldest has chosen to stay

home. Rex, my husband's first thought was for Andy to go to school the

entire day and miss all but perhaps the private family wake. While somewhat

practical (and I " d force him to take care of Andy throughout most of the

activities), I don't think my grandmother would like that he was left

behind. I'm not sure it matters if he's wandering around the sanctuary.

He came to my Uncle's funeral this time last year and *I* thought he did

pretty well. He was squirmy, but then he had to go to the restroom. While

Rex couldn't or didn't bring him back into the service, he met up with us

as we walked out to the gravesite. And he got all sorts of attention from

teh firemen on the truck when they were leaving.

So....what do I do? Do I allow Rex the liberty of grieving and not having

to work so hard all day (which I think is taking hte easy way out, which

he usually does) or do I deal with criticism and questions from my family

(along with feeling the additional loss of not having him there along with

the loss of my grandmother) and feel like a wench for asking Rex to step up

to the plate?

j

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[Guest guest]

I am so sorry for your loss Joan,

I think whatever you do will be ok either way. It must be comforting to have

family close by. Choose the way that will support your grieving the best.

Take care and prayers to you and your family.

Diane (((((hugs))))

[Guest guest]

I'm truly sorry for your loss, Joan. Please accept my condolences.

I guess I would ask myself, where would Andy be best off? It will be a long

day if he goes with you. You say your grandmother wouldn't like him to be

left out, but would he feel left out? If he attended the private family

wake, wouldn't that be enough for him?

When my father died, I left both my boys home (Rose wasn't yet born). Of

course, I had to travel to another state for the funeral -- but it was just

easier to deal with everything that comes with all this, knowing that my

boys were safe and taken care of. It would have been too much for them, and

neither Jim nor I could have given them the attention they needed.

I guess what I'm saying is that I think Rex is right. Andy should go to

school and have as normal a day as possible. Your grandmother knows he

loved her, and he doesn't have to be there to prove it.

CK,

Mom to Ian (2/89),

(9/90),

and Rose (6/94)

[Guest guest]

It is very beautiful of your grandmother to leave behind a precious

gift of having family united , this should continue in memory of your

grandmother .Its understandable in our kids situation . If I were in

your shoes , I would leave my son behind and grieve with the comfort

of your husband by you . On one of my grandparents funerals, how I

had wished I had left behind as I needed my husband with me

and not roaming about missing out . was great but I know he

was bored , plus he can not stand seeing people crying as it will

sadden him . Then when I had lost another loved one , this time I

decided to leave him behind and I thank God that I did , because I

was able to grieve with my husband and able to comfort my time

towards the rest of the family . After the burial , then I took

to the after gathering with the rest of the family , which was

very comforting as now everyone is able to focus on updated family

issues and you will be able to explain the reason why your son was

unable to attend and many will understand . Many Prayers to you and

your family . Luck with your decision . When all this is over , maybe

once you're settled in at home with your boys and your husband . Take

out photos of your Grandmother and talk about why your grandma was a

Special Person, I know it helped me alot . Many Hugs .

Irma, 13,DS/ASD.

[Guest guest]

In a message dated 11/9/01 5:38:34 PM Pacific Standard Time,

jmedlen@... writes:

<< Thanks everyone for your condolences and your opinions.

We finally decided to keep Andy home from school all day and have him

attend with us. >>

Glad things worked out for you Joan. Hope it goes smoothly. I'll keep you

in my prayers.

Gail :-)

[Guest guest]

Joan,

I'm sorry to hear about your grandmother. I trully

don't know what to tell you- since your asking for

advice. I think it's up to the family, and your

husband's choice to have your kids at the funneral. I

know what your feelings are- I've been there.

I missed both my grandpa's and my great aunt

funneral - and today I regrated of not going to them.

Well my brother went to one of the funnerals but I

didn't even go to any of them. Well, sorry I'm not

more of a help.

Sincerely,

=====

__________________________________________________

[Guest guest]

, after reading your post coming from how you felt not

attending , it is a tough decision. This is very true it should be

decided on what Joan and her husband decides . If decided towards

taking Andy , hope all goes well and her mind will be at ease because

she knew how important her Grandma would of love having ALL her

family until the end .

Irma, 13,DS/ASD.

>

> Joan,

>

>

> I'm sorry to hear about your grandmother. I trully

> don't know what to tell you- since your asking for

> advice. I think it's up to the family, and your

> husband's choice to have your kids at the funneral. I

> know what your feelings are- I've been there.

> I missed both my grandpa's and my great aunt

> funneral - and today I regrated of not going to them.

> Well my brother went to one of the funnerals but I

> didn't even go to any of them. Well, sorry I'm not

> more of a help.

>

> Sincerely,

>

>

>

>

>

>

>

> =====

>

>

> __________________________________________________

>

[Guest guest]

Irma,

Well It wasn't my choice of not attending. Yeah, I

don't think it's up to us to decide on family

emergencies, or stuff along that line. Yeah if they

do take Andy- hope everything works out. Thanks for

your support.

=====

__________________________________________________

[Guest guest]

Thanks everyone for your condolences and your opinions.

We finally decided to keep Andy home from school all day and have him

attend with us. There's the service and then the wake at the church that

day. Rex is OK with how we changed things around...it has more to do with

the practicality of driving to and from school than anything else. If Andy

goes to school, Rex would have to leave mid-services to pick him up anyway.

The minister is happy to have him and open to the idea of Andy running

around the pulpit. There will be many children there of all ages--babies to

folks in thier 90s. It'll be fine for him to be there. I'm very fortunate

that my family accepts Andy with all his idiosyncracies just as he is and

they would all feel badly if we didn't make an attempt for him to come.

Rex will be at the family wake the night before, which is probably themost

important time for him besides portions of the service. I'm a funny one

with my grief--I like alonness. I think it comes from my Quaker

background...I am quiet in my thoughts. I'll be fine without Rex. will

be with me most the day and it is my time to teach him about the process of

saying goodbye.

Anyway. Thankfully it worked out all on it's own.

Take care,

Joan

[Guest guest]

Joan,

Our heart goes out to you and your on the passing of your grandmother. I

know you will cherish the memories.

Sorry I have no suggestions since anyone in my family died long ago.

& Garry, parents of (11 ds), (10 ds), JJ (7

ds/autism/celiac), (7 ds/ADHD/Celiac), and Esther (4 ds). All adopted.

[Guest guest]

In a message dated 11/9/01 8:38:31 PM Eastern Standard Time,

jmedlen@... writes:

> will

> be with me most the day and it is my time to teach him about the process of

> saying goodbye.

>

>

Yes Joan. An important ritual for kids to see. You are indeed lucky to

have family and friends be so accepting of having Andy there; I'm sure it

helps you!!! Let us know how it went for you!! Giant

{{{{{{{{{{{{{[hugs}}}}}}}}}}}}}}

Donna

[Guest guest]

both my boys have been to several family funerals, and they both behaved very

well. Im sure andy will do fine, it is important for him to deal with loss even

on his own level. shawna.

Re: Re: What would you do??

In a message dated 11/9/01 8:38:31 PM Eastern Standard Time,

jmedlen@... writes:

> will

> be with me most the day and it is my time to teach him about the process of

> saying goodbye.

>

>

Yes Joan. An important ritual for kids to see. You are indeed lucky to

have family and friends be so accepting of having Andy there; I'm sure it

helps you!!! Let us know how it went for you!! Giant

{{{{{{{{{{{{{[hugs}}}}}}}}}}}}}}

Donna

[Guest guest]

hi,

my son has been wearing his STARband for a month and a week without any problems

except that where the bands hole at the top is, his head is like growing into

it, like when you take the helmet off there is a ridge now where hes been

wearing it.

i mentioned something to his ortho buit he said oh its just his hair, well now

its gotten worse!!

so i called them yesterday, (friday) and they didnt answer. it weas normal

business hours (it even said on the answering machine) and i tried calling

around but there is nowhere in my area who could help me and i was crazy busy

yesterday but the place we go didnt answer all day!!!

so, since they didnt answer they wont open until monday, now. so should i keep

the helmet off of him until monday? its saturday morning and he didnt wear it

much yesterday but he wore it to bed and i can feel the ridge and also see it i

dont want his head to get more messed up!!! ugghhh im so frustrated! what do i

do??

someone said it needs more shaved off around the hole and im half tempted to do

it myself, im a hour away from these people also lol.

[Guest guest]

Maybe you can do what you've been doing. Have him wear it when asleep so that the head doesn't get any flatter, but keep it off during times when he's not on his head. I doubt that the ridge can get much worse if he only wears it part of the time, but you don't want to miss out of correction. Just a thought.

what would YOU do??

hi, my son has been wearing his STARband for a month and a week without any problems except that where the bands hole at the top is, his head is like growing into it, like when you take the helmet off there is a ridge now where hes been wearing it.i mentioned something to his ortho buit he said oh its just his hair, well now its gotten worse!!so i called them yesterday, (friday) and they didnt answer. it weas normal business hours (it even said on the answering machine) and i tried calling around but there is nowhere in my area who could help me and i was crazy busy yesterday but the place we go didnt answer all day!!!so, since they didnt answer they wont open until monday, now. so should i keep the helmet off of him until monday? its saturday morning and he didnt wear it much yesterday but he wore it to bed and i can feel the ridge and also see it i dont want his head to get more messed up!!! ugghhh im so frustrated! what do i do??someone said it needs more shaved off around the hole and im half tempted to do it myself, im a hour away from these people also lol.

[Guest guest]

SOrry I'm getting to this so late... I'm not sure what you did this weekend...

My dd also had a ridge that started because of a growthspurt. It has faded some but she does still have a bit of a ring on the top.

I wouldn't let your baby wear it until you see the ortho.

Call them in the am 1st thing and then go in for an adjustment.

Let us know how it goes!!!

Jen

Mom to Luli - 3 yrs old

Torticollis, Plagio, Syringomyelia

what would YOU do??

hi,

my son has been wearing his STARband for a month and a week without any problems except that where the bands hole at the top is, his head is like growing into it, like when you take the helmet off there is a ridge now where hes been wearing it.

i mentioned something to his ortho buit he said oh its just his hair, well now its gotten worse!!

so i called them yesterday, (friday) and they didnt answer. it weas normal business hours (it even said on the answering machine) and i tried calling around but there is nowhere in my area who could help me and i was crazy busy yesterday but the place we go didnt answer all day!!!

so, since they didnt answer they wont open until monday, now. so should i keep the helmet off of him until monday? its saturday morning and he didnt wear it much yesterday but he wore it to bed and i can feel the ridge and also see it i dont want his head to get more messed up!!! ugghhh im so frustrated! what do i do??

someone said it needs more shaved off around the hole and im half tempted to do it myself, im a hour away from these people also lol.

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