Re: Update on Aidan and Devlin

[Guest guest]

In a message dated 4/12/2002 19:22:34 PM GMT Daylight Time,

crooksbums@... writes:

> They have very limited understanding...that of a 9 month old.....or less! No

>

> expressive as they don't have the understanding. They said that they will

> continue to learn and will not stop learning...but that everything will

> come

> hard for them.....

No matter how you prepare, this kind of news is hard to hear.

Take heart, there are plenty of people on this list who have heard their

'will never do x,y or z' and you know what, they ARE DOING IT. My own son

(global and severe developmental delay) is now on his 4th IEP since September

as he keeps meeting the targets. I have always assumed he understands

(almost) everything I say, have never stopped looking for ways to help him. I

know everything he does he has had to learn to do. I think the progress he is

making is amazing and beyond anything I could have hoped for. We are a long

way from 'typical' but my much-loved child surprised even me.

Don't give up. It may be hard to smile right now but it does get better.

Take care

London UK

[Guest guest]

Eileen,

We are in Ontario Canada....an NO the boys should NOT be sharing an

appointment!!! They are not one persopn...I won't get into the details but

this has been a problem for some time! We are fighting hard to change

it...but it is apparently partially our fault as we have no in home therapies

here and have to drive 1 1/2 hours to the hospital where the threapies are!!!

We have one car....and DH works....so he takes off one day a week to go with

us to appointments....long story short...we can only afford to do this once

every few weeks as DH needs to work and be paid! He is a chef and is paid

hourly! We are working on itThanks for sharing our concerns!

Hugs,

,

Mom to Aidan & Devlin, 28 weekers, now 2 years, IUGR (resolved), TTTS, Apnea

(resolved), Bradycardia (resolved), ROP (resolved), pulmonary Stenosis,

intrahepatic portal shunt (liver now resolved), delayed in every area (

global delays), speech delays...now looking into apraxia......

But HAPPY, BEAUTIFUL baby boys.....a constant inspiration and source of joy

to their parents.

[Guest guest]

Dear ,

I know how you feel about being defeated but don't.

Doesen't always happen when you get back from a visit

with a DR. Even though you know about your son's

issues it always seems so much worse and in your face

when the words are spoken to you.

What worries me about your post and I don't remember

your post before is the fact that your son's are only

in speech therapy every two months and share the 1 hr.

Which may be ok since they are twins and since I don't

have twins I do not know how that works. but more than

anything the every 2 months to get an appointment. In

what state are you living and why is the dr. not

giving you other options for speech?

Just a concern

Sincerely,

Eileen

--- crooksbums@... wrote:

> Hi all,

> Well we went to our follow up clinic and I got

> Devlin into the cardiologist

> the same day and time as Aidan (whew!), so that's

> taken care of.

> The docs told us that the boys are not developing

> normally......duh?, and

> that they will never catch up....this cannot be

> attributed to being a preemie

> nor can it be blamed on the TTTS (twein to twin

> transfusion syndrome). They

> have to work very hard to do things that come easily

> to other children and

> they do not think that this will ever change. I

> guess I knew that

> already....but it was very difficult to hear....we

> always had the hope that

> they would......

> They have very limited understanding...that of a 9

> month old.....or less! No

> expressive as they don't have the understanding.

> They said that they will

> continue to learn and will not stop learning...but

> that everything will come

> hard for them.....He said that we need to have them

> in speech more often, but

> we can only get appointments every 2 months and they

> have been making the

> boys share an hour long appointment! I don't know

> how to help anymore! I

> feel so sad and disappointed and guilty for being

> disappointed. ..... *sigh*

> Does this mean that they are retarded? I am just

> feeling so very defeated.

> Will they ever talk? we just don't know!!!! I am

> havinga very hard time

> accepting all of this.....I don't know why....I have

> known all that they said

> for a very long time! But it is hard. I just wanted

> to vent a little....and

> tell you all that the heart problem is now being

> watched!

> Thanks for listening,

>

>

> ,

> Mom to Aidan & Devlin, 30 weekers, now 2 years,

> IUGR, TTTS, Apnea

> (resolved), Bradycardia (resolved), ROP (resolved),

> pulmonary Stenosis,

> intrahepatic portal shunt (liver now resolved),

> delayed in every area (

> global delays), speech delays...now looking into

> apraxia......

> But HAPPY, BEAUTIFUL baby boys.....a constant

> inspiration and source of joy

> to their parents.

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

__________________________________________________

[Guest guest]

Thank you ,

I hope that we too will find that our boys will amaze us!! We wish they did

understand everything that we say.....it can be hard...though never before

did it trouble me so...to have 2 year olds that are into everything and

running maniacs like regular 2 year olds....but who havee the understanding

of a baby!

I am hopeful that they will continue to learn and to find new ways to do

things that will suprise and delight me!

But to me they will always be " perfect " .

hugs,

,

Mom to Aidan & Devlin, 28 weekers, now 2 years, IUGR (resolved), TTTS, Apnea

(resolved), Bradycardia (resolved), ROP (resolved), pulmonary Stenosis,

intrahepatic portal shunt (liver now resolved), delayed in every area (

global delays), speech delays...now looking into apraxia......

But HAPPY, BEAUTIFUL baby boys.....a constant inspiration and source of joy

to their parents.

[Guest guest]

Hi ,

It must have been difficult to hear the doctor's opinion that your sons won't

catch up. Still, remember, doctor's don't know everything! They have been

wrong many times. In any case, you still have to be very aggressive with the

therapies. How can you only get speech once every two months??? That is no

where near adequate. My daughter who has apraxia, has speech 2x/week and I

don't even think that is enough. The important thing though, is that your sons

are making progress and will continue to make more. None of us on this list

know where our kids will end up in the future (I sure don't), but we're probably

all doing as much as we can now for them. That's all we can do.

(a, 4 years, apraxia, hypotonia, SID, delays)

----- Original Message -----

Hi all,

Well we went to our follow up clinic and I got Devlin into the cardiologist

the same day and time as Aidan (whew!), so that's taken care of.

The docs told us that the boys are not developing normally......duh?, and

that they will never catch up....this cannot be attributed to being a preemie

nor can it be blamed on the TTTS (twein to twin transfusion syndrome). They

have to work very hard to do things that come easily to other children and

they do not think that this will ever change. I guess I knew that

already....but it was very difficult to hear....we always had the hope that

they would......

They have very limited understanding...that of a 9 month old.....or less! No

expressive as they don't have the understanding. They said that they will

continue to learn and will not stop learning...but that everything will come

hard for them.....He said that we need to have them in speech more often, but

we can only get appointments every 2 months and they have been making the

boys share an hour long appointment! I don't know how to help anymore! I

feel so sad and disappointed and guilty for being disappointed. ..... *sigh*

Does this mean that they are retarded? I am just feeling so very defeated.

Will they ever talk? we just don't know!!!! I am havinga very hard time

accepting all of this.....I don't know why....I have known all that they said

for a very long time! But it is hard. I just wanted to vent a little....and

tell you all that the heart problem is now being watched!

Thanks for listening,