RE: Balancing expectations/being tired - long

[Guest guest]

This may sound unconventional, but it has worked for us. About a year ago,

Grace was getting so stressed with doctors, blood draws, and everything else

our kids go through, she ended up getting high blood pressure. The little

thing was so stressed out it was making her sick(er). The sad thing is it

took us going to two different doctors to figure this out. That is when I

ended it, at least for awhile. We acutally took a break from it all, and

took three months with no appointments with anyone. Believe it or not, when

she had her blood pressure checked after the time off it was normal. She was

much happier and was actualy heathier.

Now that she is in Speech and OT, and playgroup weekly we still take some

time off, once in awhile. Just currently with being born we took a

month off all of her appointments. It helped with the stress of her

changing family, by not being overwhelmed with all of her other stuff. Also

I always cancel her speech and OT when she is sick.

I know this may be setting her back a little. But my theory is that she is

only 2, and has a busier schedule than some adults. We need to take some

time to let her be a 2 year old. We still deal with her getting high blood

pressure sometimes, but it is nowhere where it used to be.

Best wishes.

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[Guest guest]

Taking a month off with no appointments sounds like such a good

idea! I'm so glad to hear that other people take time off from these

things. Do you mean that you take time off from the services too?

Honestly, Sheldon seems to do so much better when he has a break from

teachers coming but they don't seem to understand that. I know

everyone says to just do what we think is best for our child but it is

very hard. First, we don't even feel like we know what's best.

Thanks so much for the response. I welcome more discussion of

this issue, I'd love to hear about how other people dealing with this

mito monster deal with this problem.

I love this group, it is so supportive. It is so nice to talk

with others dealing with the same problems, so few other people

understand.

This may sound unconventional, but it

has worked for us. About a year ago,

Grace was getting so stressed with doctors, blood draws, and

everything else

our kids go through, she ended up getting high blood pressure.

The little

thing was so stressed out it was making her sick(er). The sad

thing is it

took us going to two different doctors to figure this out. That

is when I

ended it, at least for awhile. We acutally took a break from it

all, and

took three months with no appointments with anyone. Believe it

or not, when

she had her blood pressure checked after the time off it was normal.

She was

much happier and was actualy heathier.

Now that she is in Speech and OT, and playgroup weekly we still take

some

time off, once in awhile. Just currently with being born we

took a

month off all of her appointments. It helped with the stress of

her

changing family, by not being overwhelmed with all of her other

stuff. Also

I always cancel her speech and OT when she is sick.

I know this may be setting her back a little. But my theory is

that she is

only 2, and has a busier schedule than some adults. We need to

take some

time to let her be a 2 year old. We still deal with her getting

high blood

pressure sometimes, but it is nowhere where it used to be.

Best wishes.

_________________________________________________________________

Check out Election 2004 for up-to-date election news, plus voter tools

and

more! http://special.msn.com/msn/election2004.armx

Please contact mito-owner with any problems or

questions.

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[Guest guest]

Yes, sometimes, we even cancel services. When we had , everything

stopped. She has just began back at speech and OT (event though we did

cancel this week, due to her having a cold.) We do, however, try to keep

her going to her playgroup pretty faithfully. Her playgroup is designed for

children with medical needs, and nobody is allowed to go if they are sick,

or have been exposed. It is her only outlet with other children her age.

Even though she is getting some " therapy " she could never know since it is

in play setting. So far her speech and OT therapists have both been very

understanding with this. Her OT has been great and has even made comments

that she would rather have 15 min. where she is devoted to her work, than

the full 1/2 hour with a kid that does not want to be there. Also when she

looses focus in OT, we stop an let her play for the remainder of the time.

This way she may not be getting therapy, but her therapist can watch her and

look out for things improving or new areas where she may need some more

help. It really works out well.

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[Guest guest]

Is it possible to talk with the therapists and let them know the

present therapy methods don't seem to be working for him and even is

stressing him? We have had this issue with Asenath had had to do a couple

things to rectify it. Asenath has several of the same issues as your son

and would get frustrated with all the work and not knowing the answers. She

reacted in hyperactivity and outbursts of anger or trying to " escape " from

the room until her SP therapist realized the reasoning behind her actions.

She also discovered normal therapy methods didn't work but books did! For

more than a year the other thing the therapist brought were books and she

amazingly would repeat anything and do anything to get another page read to

her or a small book. She also discovered that Asenath was frustrated with

memory problems and processing who, what, when questions. She had no

understanding of how to answer them and so would get hyper again. Through

lots of positive reenforcement and redirection, Asenath has been able to

verbalize " I don't know, help, T-T-T " to let her therapist know she didn't

know the answers rather than getting upset. It has been great to see her

grow. For a while I really wondered if the therapy would be any good.

Another thing we had to do was find the right OT. We had two that got

so frustrated with her when she avoided doing anything hard that required

her to really try hard, that they would roll their eyes constantly or get

upset at her. We would NOT put up with that and spoke to the supervisor and

tried until we found a great OT that was great with kids and knew how to try

knew approaches. Same with the PT, Asenath has had the same one since April

2002 and we have seen her try new approaches as Asenath's abilities

increased or decreased. It is SO important to get the right therapist. If

you speak to your child's therapist and they don't want to try something

new, you may want to try another one.

By the way, we get home therapy too (except for PT) and love it! Our SP

therapist has also done great with Zipporrah too. Hope some of this helps

you.

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (11 mon.) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Balancing expectations/being tired - long

>

> We are really struggling with this and would welcome any ideas you

> guys have. Our problem is that we don't know what Sheldon's teachers

> should be working on and how they should be doing it. We have to

> rewrite IEP goals next week and want to make sure we do it carefully

> so he has the best chance to learn to communicate during the next

> year.

>

> Sheldon's receptive language is catching up but he has very little

> expressive language - no words but he does sign some, although he

> loses signs every time he's sick. He receives OT/PT/Speech/Spec. Ed.

> He just turned 3. We're getting to a point where he is upset when his

> speech and spec. ed. teachers come. They are trying to get him to

> move pictures around on a preschool-like schedule (all his services

> are at home to reduce illness). He is very resistant to this, he

> doesn't want to put the rice table picture in the container just

> because they have decided he's done with that activity.

>

> I personally see that the days when he is resistant to doing things

> for them are the days when he's not feeling well - tired, headache,

> something else. The problem is that he can't talk. I think he often

> has headaches and doesn't want to work for them when he does. Or he's

> just too tired to do anything. But all they see is him not working,

> we have no way to tell the difference between when he's not feeling

> well and when he just doesn't want to do something.

>

> He also has short term memory/executive function problems which are

> worse when he's not feeling well. And very delayed social skills.

>

> The poor boy is tortured by doctors, hospital visits, meds, pain...

> it makes me think he should get (almost) anything he can ask for -

> and he asks for so little. Shouldn't learning be fun and shouldn't he

> look forward to his teachers coming? He's only 3! I keep coming back

> to this thought - if he gets sick this winter and the worst happens,

> what do I want him to have been doing? Of course we want him to learn

> to communicate - I just don't think it should be torture to do.

>

> Does anyone have any ideas? What have you done with your kids? What

> do teachers do with them?

>

> Sorry this is so long. It's hard to get all the issues in one e-mail.

> I'm sure I missed a lot of them. Thanks for your time.

> --

> ----------

> Stacey Fleming

> flemings@...

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

Hi Stacey,

What do I want him to have been doing? That is a tough question to

answer. There are so many pressures and expectations from society

as to what children should be doing. I know personally I use to

confuse that with what I truly wanted for Wyatt. It was hard to get

to the point of making decisions based on what it is I want for

him. It meant giving up a part of a dream I had for him. I finally

prioritized what is important to me and my family. And what is

important is that he is happy and loved. Wyatt will never walk, he

will never be able to talk or communicate in any form other than

changing the pitch in his ahhh sound, but that is okay. I've

accepted that because the twinkle in his eye and the smile on his

face lets me know he is happy. So on his IEP we have that he gets

stretched and is around other kids who can walk and talk. He loves

to watch other kids. That is what makes him happy. We also have

that we would like to have him be able to hit a yes or no switch,

but that is the last goal we have. Being happy is the most

important. I hope this helps some. Good luck with the decisions

you have ahead of you.

Geri-Anne and Wyatt, complex I

P.S.- hi to everyone. Everything is going well here. I just have

very little time to be online anymore, but I think of everyone often.

-- In Mito , Stacey Fleming wrote:

> We are really struggling with this and would welcome any ideas you

> guys have. Our problem is that we don't know what Sheldon's

teachers

> should be working on and how they should be doing it. We have to

> rewrite IEP goals next week and want to make sure we do it

carefully

> so he has the best chance to learn to communicate during the next

> year.

>

> Sheldon's receptive language is catching up but he has very little

> expressive language - no words but he does sign some, although he

> loses signs every time he's sick. He receives OT/PT/Speech/Spec.

Ed.

> He just turned 3. We're getting to a point where he is upset when

his

> speech and spec. ed. teachers come. They are trying to get him to

> move pictures around on a preschool-like schedule (all his

services

> are at home to reduce illness). He is very resistant to this, he

> doesn't want to put the rice table picture in the container just

> because they have decided he's done with that activity.

>

> I personally see that the days when he is resistant to doing

things

> for them are the days when he's not feeling well - tired,

headache,

> something else. The problem is that he can't talk. I think he

often

> has headaches and doesn't want to work for them when he does. Or

he's

> just too tired to do anything. But all they see is him not

working,

> we have no way to tell the difference between when he's not

feeling

> well and when he just doesn't want to do something.

>

> He also has short term memory/executive function problems which

are

> worse when he's not feeling well. And very delayed social skills.

>

> The poor boy is tortured by doctors, hospital visits, meds,

pain...

> it makes me think he should get (almost) anything he can ask for -

> and he asks for so little. Shouldn't learning be fun and shouldn't

he

> look forward to his teachers coming? He's only 3! I keep coming

back

> to this thought - if he gets sick this winter and the worst

happens,

> what do I want him to have been doing? Of course we want him to

learn

> to communicate - I just don't think it should be torture to do.

>

> Does anyone have any ideas? What have you done with your kids?

What

> do teachers do with them?

>

> Sorry this is so long. It's hard to get all the issues in one e-

mail.

> I'm sure I missed a lot of them. Thanks for your time.

> --

> ----------

> Stacey Fleming

> flemings@g...

[Guest guest]

Stacey,

you are right, he is only three and life should be fun and not torture. If his ot and pt folks do not understand his disorder and are not open to learn how do work with children like ours, then, I think, you should find some new folks, if you can. I know that is easier said, than done. also, any chance you can take over these activites under the teachers guidance/? Then you could do them with him when he is up to it and enjoys doing it. A lot with our kids is timing.

Hope this helps

best regards

rosy