Social/vocational/age issues

[Guest guest]

OK, I've hung back while Granny too the heat (thanks from my heart).

For some of our kids, it is easy to look at their trajectory as young

children and project their life as adults (or is that imagine it?). Yes

I've been there, but not in some of the extremes I see both earlier and

today. While it is nice to lecture to a group of doctors that your

child with down syndrome is so close to normal that you expect him to go

to college and maybe even be a brain surgeon, it doesn't seem to end up

that way.

Yes, some of today's children are educated in ways that are better than

20 years ago, but most of those 20 years ago got rather good education

from a group of (largely sped) teachers who were seeing their first kids

with DS and were excited about the wonderful progress that they made.

When Jan was 20, I had some rather extreme attitudes on ADA and the

right to jobs along with the right to 'mentors' on the job to help

through the hard parts. My daughter by then had worked in child care,

at Macs cooking and cleaning, in an elder care environment, and

had typed mailing lists into the computer for hire. She also had mowed

lawns for money and done lots of things. Well, eight years later, after

more than enough failures, I can attest that she is a difficult employee

who starts with enthusiasm, but has exhibited behaviours later that cost

her the job.

Like Granny, I watched my child grow away from her pre-puberty friends

slowly. They are still friends, but it isn't the peer relationship with

the girl next door who is working on her PhD. There is love and

understanding, but not the close bond of buddies.

I find among most parents of adults, that there is a re-settlement of

aims. We no longer can project our dreams onto our young adult's life.

We have to learn to accept whoever and whatever they are. Not that this

is very different from all our kids, except that with DS, the

limitations do show up.

My dreams for Jan are far different than they were in her teens. I want

her to have the adult life she dreams of. I want her to be able to

accept her own limitations comfortably, to have friends, and to be

happy. It is necessary to have reasonably full days, but she doesn't

have to have a mainstream job. It is OK for her to have friends of her

own choosing. She chooses her friends mostly from among her

developmentally disabled peers. Some of these are more disabled than

she is and many are less. Yes she has other friendships (including me)

with so-called normal people, but her dominant social relationships are

with people she is comfortable with and who are comfortable with her.

I've got a hike scheduled with her tomorrow afternoon :-)

It is hard to project this from a middle/high school world where the NDA

peers haven't yet come to lives, marriage, and kids. As that springs up

starting at puberty and continues with time. At least Jan became

sensitive when her friends tried over time to become helpers and

guardians. This may or may not apply to others, but Jan did get her

back up.

We can have as much optimism about their future adults lives as

projected from younger years, but an advice from this old timer is to be

prepared to re-set your targets as adulthood comes closer.

Jan has been a pioneer in many things. She's the first with DS to

graduate from Chapel Haven and go on to independent life there. She was

joined by two new graduates this year (both fine young men). Still,

this program is extremely challenging for kids with down syndrome and I

can not give it a strong recommendation for many because it expects much

in teaching independence as it does. Still, I believe that the program

and its expected outcome could be modified to be more likely to have

positive outcome for people with DS, but the outgoing life would need to

be more sheltered.

All of our children are different. That goes almost without saying, but

it is important to emphasize. Achievement in one thing or another isn't

what makes them valued or loved, although some achievement and

recognition is good for self esteem. In time they will become adults,

although perhaps not the adults we had imagined much earlier. Trust me,

they will be even better as a result of their being their own person.

Rick

[Guest guest]

OK, I've hung back while Granny too the heat (thanks from my heart).

For some of our kids, it is easy to look at their trajectory as young

children and project their life as adults (or is that imagine it?). Yes

I've been there, but not in some of the extremes I see both earlier and

today. While it is nice to lecture to a group of doctors that your

child with down syndrome is so close to normal that you expect him to go

to college and maybe even be a brain surgeon, it doesn't seem to end up

that way.

Yes, some of today's children are educated in ways that are better than

20 years ago, but most of those 20 years ago got rather good education

from a group of (largely sped) teachers who were seeing their first kids

with DS and were excited about the wonderful progress that they made.

When Jan was 20, I had some rather extreme attitudes on ADA and the

right to jobs along with the right to 'mentors' on the job to help

through the hard parts. My daughter by then had worked in child care,

at Macs cooking and cleaning, in an elder care environment, and

had typed mailing lists into the computer for hire. She also had mowed

lawns for money and done lots of things. Well, eight years later, after

more than enough failures, I can attest that she is a difficult employee

who starts with enthusiasm, but has exhibited behaviours later that cost

her the job.

Like Granny, I watched my child grow away from her pre-puberty friends

slowly. They are still friends, but it isn't the peer relationship with

the girl next door who is working on her PhD. There is love and

understanding, but not the close bond of buddies.

I find among most parents of adults, that there is a re-settlement of

aims. We no longer can project our dreams onto our young adult's life.

We have to learn to accept whoever and whatever they are. Not that this

is very different from all our kids, except that with DS, the

limitations do show up.

My dreams for Jan are far different than they were in her teens. I want

her to have the adult life she dreams of. I want her to be able to

accept her own limitations comfortably, to have friends, and to be

happy. It is necessary to have reasonably full days, but she doesn't

have to have a mainstream job. It is OK for her to have friends of her

own choosing. She chooses her friends mostly from among her

developmentally disabled peers. Some of these are more disabled than

she is and many are less. Yes she has other friendships (including me)

with so-called normal people, but her dominant social relationships are

with people she is comfortable with and who are comfortable with her.

I've got a hike scheduled with her tomorrow afternoon :-)

It is hard to project this from a middle/high school world where the NDA

peers haven't yet come to lives, marriage, and kids. As that springs up

starting at puberty and continues with time. At least Jan became

sensitive when her friends tried over time to become helpers and

guardians. This may or may not apply to others, but Jan did get her

back up.

We can have as much optimism about their future adults lives as

projected from younger years, but an advice from this old timer is to be

prepared to re-set your targets as adulthood comes closer.

Jan has been a pioneer in many things. She's the first with DS to

graduate from Chapel Haven and go on to independent life there. She was

joined by two new graduates this year (both fine young men). Still,

this program is extremely challenging for kids with down syndrome and I

can not give it a strong recommendation for many because it expects much

in teaching independence as it does. Still, I believe that the program

and its expected outcome could be modified to be more likely to have

positive outcome for people with DS, but the outgoing life would need to

be more sheltered.

All of our children are different. That goes almost without saying, but

it is important to emphasize. Achievement in one thing or another isn't

what makes them valued or loved, although some achievement and

recognition is good for self esteem. In time they will become adults,

although perhaps not the adults we had imagined much earlier. Trust me,

they will be even better as a result of their being their own person.

Rick