18 + what do you do?

[Guest guest]

Hi:

I have been reading all the postings lately about what to do when

your child is older and approaching 18. Since our daughter is now in

her twenties, I do realize that we made it difficult for her to get

funding because we did not pursue it diligently enough at age 18.

When you child is small and through all the growing up years, keep

every document sent to you by doctors and teaching evaluations. If

you have a letter from a pychiatrist keep these. You may need them

later and it makes it easier to prove that there is a problem however

small. Keep a record of the doctors that you take your child too. I

know that it is different in the States than in Canada but we all

have to prove that the funding is needed. Also use what ever

resources that are available to you. Ask a lot of questions of the

professionals of what you can be doing for your child and what can be

funded for.

We were the first family in the province to have a child with MDS.

As our doctors did not know what to expect we were told to keep it to

ourselves so that she was not labeled. In many ways this was a big

mistake because she did not get the extra attention that she needed.

I'm not sure it was good for her self esteem either to not know that

there was anything wrong as it was very hard for her when we told her

at age 16. She was devastated and very angry at us. Her anger

though is part of the lack of understanding of dealing with the

abstract. My daughter is a bit of a drama queen! A lot has changed

in twenty years. Handicapped people are more accepted and valued.

As they should be.

One note, though, in all our years with our daughter only one person

has ever asked if she had Down's. Our daughter was 18 then. She

was a friend of mine and was trying to help me deal with some of our

daughters difficult behaviours. She was also the one person that

pointed out that we needed some help dealing with unsuitable

behaviour. Sometimes we are so close to the situation that we can't

see it and are dealing with things that we could have some help

with. In Canada we have agencies that assess the clients needs and

help them according to their particular need. Our daughter now has a

roomate companion that lives upstairs in a house. If our daughter

needs some help she is there. She is a friend and helps counsel her

in some aspects of her life. It is a wonderul situation. For the

first time in years I feel that the parenting job I was in has been

reduced to the positive aspects of life. It is a relief not to have

to worry so much! (Though I know that I still always worry about

her!) My prayer is that all of you with older ones have been blessed

with a good support system.

Our daughter is doing very well. She has a new part time job

teaching people with schizophrenia computer skills. We are very

proud of her. This is temporary job placement but if she does well

they will keep her. This is what we are praying for. Without help

help that she receives she would not have been offered this

position. So life is grand right now and everything is well.

Do watch your older MDS kids for obesity and thryoid problems. I am

looking forward to the convention so we can have a speaker confirm

what we need to look out for. They are normal but they do have some

health problems that go with having Downs's.

Laraine: mom to CariAnn 24 MDS, boys 19 and 17 Wow are

they getting old! Me too!

[Guest guest]

What great advice Laraine and isn't CariAnn doing just great ? Really

pleased for you over there.

In the UK, it's much the same - very, very few mds children so healthcare

professionals, educationalists and the like just don't know what to expect

from our children, simply becauses of the rarity. Keep details about all the

professionals you come across and let them know just what YOU think - make

it an education process for them as well.

is 9 and a half and I know the subject is about 18+ but can't

wait till she's 18 ......when she thinks she gets " boobies " and can go out

for a beer !

Bill & Judy (Dad and Mum to 9yrs mds, 24, 24, Mark 22

and 20 and yes they are getting old lol - bring back the early years

!!)

[Guest guest]

Laraine,

Thank you for sharing that. One new thing I learned

this week is that in the states, when your child turns

18 you have to file with an attorney to have custody

of your child. This way, you still can oversee thier

finances and things like that. Also, in the states,

when your son turns 18, even with mds, they have to

register with the US service. They will not be

drafted, because in the case of a draft, they will be

medically evaluated and declined. But, they do have to

register reguardless of the mds.

Kristy

--- joelandkyle wrote:

> Hi:

> I have been reading all the postings lately about

> what to do when

> your child is older and approaching 18. Since our

> daughter is now in

> her twenties, I do realize that we made it difficult

> for her to get

> funding because we did not pursue it diligently

> enough at age 18.

> When you child is small and through all the growing

> up years, keep

> every document sent to you by doctors and teaching

> evaluations. If

> you have a letter from a pychiatrist keep these.

> You may need them

> later and it makes it easier to prove that there is

> a problem however

> small. Keep a record of the doctors that you take

> your child too. I

> know that it is different in the States than in

> Canada but we all

> have to prove that the funding is needed. Also use

> what ever

> resources that are available to you. Ask a lot of

> questions of the

> professionals of what you can be doing for your

> child and what can be

> funded for.

>

> We were the first family in the province to have a

> child with MDS.

> As our doctors did not know what to expect we were

> told to keep it to

> ourselves so that she was not labeled. In many ways

> this was a big

> mistake because she did not get the extra attention

> that she needed.

> I'm not sure it was good for her self esteem either

> to not know that

> there was anything wrong as it was very hard for her

> when we told her

> at age 16. She was devastated and very angry at us.

> Her anger

> though is part of the lack of understanding of

> dealing with the

> abstract. My daughter is a bit of a drama queen! A

> lot has changed

> in twenty years. Handicapped people are more

> accepted and valued.

> As they should be.

>

> One note, though, in all our years with our daughter

> only one person

> has ever asked if she had Down's. Our daughter was

> 18 then. She

> was a friend of mine and was trying to help me deal

> with some of our

> daughters difficult behaviours. She was also the

> one person that

> pointed out that we needed some help dealing with

> unsuitable

> behaviour. Sometimes we are so close to the

> situation that we can't

> see it and are dealing with things that we could

> have some help

> with. In Canada we have agencies that assess the

> clients needs and

> help them according to their particular need. Our

> daughter now has a

> roomate companion that lives upstairs in a house.

> If our daughter

> needs some help she is there. She is a friend and

> helps counsel her

> in some aspects of her life. It is a wonderul

> situation. For the

> first time in years I feel that the parenting job I

> was in has been

> reduced to the positive aspects of life. It is a

> relief not to have

> to worry so much! (Though I know that I still always

> worry about

> her!) My prayer is that all of you with older ones

> have been blessed

> with a good support system.

>

> Our daughter is doing very well. She has a new part

> time job

> teaching people with schizophrenia computer skills.

> We are very

> proud of her. This is temporary job placement but

> if she does well

> they will keep her. This is what we are praying

> for. Without help

> help that she receives she would not have been

> offered this

> position. So life is grand right now and everything

> is well.

>

> Do watch your older MDS kids for obesity and thryoid

> problems. I am

> looking forward to the convention so we can have a

> speaker confirm

> what we need to look out for. They are normal but

> they do have some

> health problems that go with having Downs's.

>

> Laraine: mom to CariAnn 24 MDS, boys 19 and

> 17 Wow are

> they getting old! Me too!

>

>

>