Re: Childcare at Dallas Symposium

[Guest guest]

:

Can any one go with you to take care of Jessalyn while you are at the

meetings? A relative, perhaps? I don't believe there is any childcare

available at the conference. You may want to check in the area may be for

respite services or contact your family support person in your area and may

be they can guide you on what to do. As they mentioned, UMDF has financial

help if you contact them. It is in the phamplets that were mailed to all

members. Or you could call them.

N. mom to Leah

mrs_lazyboy wrote:

> Hello everyone. I am really excited about the Symposium in Dallas

> and am trying my best to find a way to get there. We have financial

> concerns and also chilcare issues. For those of you who have

> attended in the past, have you ever taken your child(ren) with you?

> I know that children are not allowed in the meetings and activities

> but I thought maybe there would be some options for childcare during

> the day's meetings and then I could have her after things wind down

> for the day. Certainly not the best possible scenario, but I am not

> sure I can leave her with anyone for the entire 5 days or so we would

> be gone. Jessalyn is 5 mos old and has severe feeding problems and

> pain issues. Any thoughts? This is very frustrating because I know

> it is probably not in her best interests (at least short term) for me

> to go to the conference, but at the same time, I'm sure I would learn

> a lot and since we are very new to mito, I am in great need of

> information.

>

> Also, financially, does anyone have any ideas of groups, etc. that

> might help with travel or registration expenses? I know it's a long

> shot, but I thought I'd throw it out there. Thanks for any help.

>

>

>

> Mom to Jessalyn (5 mos w/suspected mito - we are still waiting on a

> muscle biopsy to confirm)

>

>

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

>

>

[Guest guest]

How about any one going to school for LPN's, nursing, or special education?

These students would at least feel " comfortable " with special needs children and

know how to handle things medically. May be they could get some sort of credit

applied toward their goal of graduating. May be someone from that area could

look in to it for everyone. Kass, are you out there? Just a thought. Don't

know if many girl scouts would feel comfortable dealing with a child one on one.

But....they could be involved by helping someone else because playtime is so

important for these children. So the girl scouts could be involved in that way.

N. mom to Leah

waislandgirl@... wrote:

> In a message dated 3/6/02 7:54:07 AM Pacific Standard Time,

> sorehead@... writes:

>

> << I don't believe there is any childcare

> available at the conference. >>

>

> If there is enough interest, it might be worth setting up childcare. It

> would be cheaper for each family to pay a certain hourly or daily fee for a

> common caregiver(s), then for each to have someone separate. I had

> previously mentioned that someone local in Dallas might be able to get a Girl

> Scout troop to help out as a service project. Or, how about a local nursing

> school as a community project?

>

> Dena

>

>

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

>

>

[Guest guest]

How about any one going to school for LPN's, nursing, or special education?

These students would at least feel " comfortable " with special needs children and

know how to handle things medically. May be they could get some sort of credit

applied toward their goal of graduating. May be someone from that area could

look in to it for everyone. Kass, are you out there? Just a thought. Don't

know if many girl scouts would feel comfortable dealing with a child one on one.

But....they could be involved by helping someone else because playtime is so

important for these children. So the girl scouts could be involved in that way.

N. mom to Leah

waislandgirl@... wrote:

> In a message dated 3/6/02 7:54:07 AM Pacific Standard Time,

> sorehead@... writes:

>

> << I don't believe there is any childcare

> available at the conference. >>

>

> If there is enough interest, it might be worth setting up childcare. It

> would be cheaper for each family to pay a certain hourly or daily fee for a

> common caregiver(s), then for each to have someone separate. I had

> previously mentioned that someone local in Dallas might be able to get a Girl

> Scout troop to help out as a service project. Or, how about a local nursing

> school as a community project?

>

> Dena

>

>

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

>

>

[Guest guest]

On the conference brochure there is a part where you can call or write I

believe about a scholarship to attend conference. I did this for the

Philadelphia conference when had just been diagnosed 3 monthes prior

to conference and had no way to save that kind of money that fast. UMDF

helped me out. It did not pay for everything, but it was enough for my

flight. That made a big difference. I encourage you to contact them.

Janelle McGuire

Mom to 5 with mito and 8 with ADHD

Hope to see you there

[Guest guest]

On the conference brochure there is a part where you can call or write I

believe about a scholarship to attend conference. I did this for the

Philadelphia conference when had just been diagnosed 3 monthes prior

to conference and had no way to save that kind of money that fast. UMDF

helped me out. It did not pay for everything, but it was enough for my

flight. That made a big difference. I encourage you to contact them.

Janelle McGuire

Mom to 5 with mito and 8 with ADHD

Hope to see you there

[Guest guest]

,

We took our son to the Cleveland conference along with our regular babysitter.

It was a little expensive, but the only way that we could do it.

Here in NJ we have the Division of Developmental Disabilities (Every state has a

similar group). In NJ you can apply for Family Support stipend every other year.

We used the money to pay for his ticket and our sitter.

Other ways of getting financial help are the Knights of Columbus, Elks, Rotary

Clubs etc. You can do a letter with a picture of your child on it.

As for Dallas, our son is now on TPN and G Tube Feedings 14 hours a day so once

again we are paying our sitter's way to go with us. It will be a little more

difficult, but it is the only way we can go. My husband and I will not go by

ourselves and have no family to leave our child with.

While we are in the conference our sitter will take him on walks, play Nintendo

and take him to the pool. It works best for all of us.

Laurel

[Guest guest]

In a message dated 3/6/02 7:54:07 AM Pacific Standard Time,

sorehead@... writes:

<< I don't believe there is any childcare

available at the conference. >>

If there is enough interest, it might be worth setting up childcare. It

would be cheaper for each family to pay a certain hourly or daily fee for a

common caregiver(s), then for each to have someone separate. I had

previously mentioned that someone local in Dallas might be able to get a Girl

Scout troop to help out as a service project. Or, how about a local nursing

school as a community project?

Dena

[Guest guest]

Thanks everyone for your replies to my post on finding

childcare/funding for the conference.

Jannelle - I called UMDF and the scholarship application packet is in

the mail - thanks.

Laurel - I am applying under the State of Maine Children With Special

Health Needs program. I think that's equivalent of your Division of

Dev. Disabilities. Hopefully we will qualify for a stipend. I know

the wheels of state govt. turn very slowly so I doubt it will happen

before June, but in any case I'm working on it. I really like the

suggestion about the letter w/her picture on it. I'm in the process

of figuring out how to use my sister's new scanner now.

N. - My Mom is thinking about coming with us to help with

Jessalyn during the meetings. She is good with Jess, and much

cheaper than most sitters ;-) BTW, I definitely agree with you and

Dena that childcare at the conference would be a great help to our

families. From my perspective it's a win-win situation - more of us

would probably be able to attend and it would certainly be less

stressful than leaving our kids far away at home for so long. I

think med and/or students studying special ed or similar situations

would be best given how fragile some of our kids are. I can see

where UMDF may not want to get involved because it might be complex

and time consuming to oversee and also because of potential legal

issues if something should go wrong. Definitely worth looking into

though. Maybe we could bring it up at conference.

Sorry I was so long replying to everyone. Jessalyn's reflux is

really bad again. She is on 20mg of Prilosec/day and it is not

controlling the reflux at all. She is scheduled for an upper GI

Thursday the 14th and probably, the Ped GI says, a fundoplication

shortly after. She would also be getting a g-tube if she has the

fundo. Sigh . . . . . . . I don't know if I'm ready for all this.

Thanks for all your support.

, Mom to Jessalyn (5 mos w/suspected mito)