RE: How do you become the best parent /advocate for a child?

August 31, 2001

Rukiyah,

I think you are doing very well for someone who is single and has a child

with DS. Youre right, this group is an excellent start. Think of how far

you have come already with the knowledge and the information that you have

gotten.

I like the idea of keeping a notebook. When ever you see something on the

computer that you think you can use, print it and keep it in a folder or a

notebook. And whenever someone sends a useful link or site about DS save it

to your favorites or write it down in the notebook.

It's hard to be organized, especially with another baby coming, but start now

and that too is really good advice. Keeping file cabinets just for

information for DS and for your son will come in very handy. I have drawers

of paper work for amanda.

Being a PARENT PANTHER is just what most of us do. It's fighting for the

best for our kids and paving the way for the next generation to make it a

little easier for you!

~ Mom to 11 DS and 7

August 31, 2001

Rukiyah,

I think you are doing very well for someone who is single and has a child

with DS. Youre right, this group is an excellent start. Think of how far

you have come already with the knowledge and the information that you have

gotten.

I like the idea of keeping a notebook. When ever you see something on the

computer that you think you can use, print it and keep it in a folder or a

notebook. And whenever someone sends a useful link or site about DS save it

to your favorites or write it down in the notebook.

It's hard to be organized, especially with another baby coming, but start now

and that too is really good advice. Keeping file cabinets just for

information for DS and for your son will come in very handy. I have drawers

of paper work for amanda.

Being a PARENT PANTHER is just what most of us do. It's fighting for the

best for our kids and paving the way for the next generation to make it a

little easier for you!

~ Mom to 11 DS and 7

September 1, 2001

Dear Rukiyah,

You ask a _great question_.

I've been in 'the field' for over 25 years. When my niece was born with Apert's

Syndrome, one of the things I told my brother and his wife was this: " The thing

that will contribute the most to her quality of life, both now and in the

future, is whether or not she is surrounded by people who know her, love her,

aren't afraid to touch her and be touched by her, who understand that they will

be part of her life, and that she will be part of their lives, forever. "

That was 15 years ago, and it's still true. It means that when making decisions

about things like therapy, school, housing, etc., one of the most important

considerations should be, " Will this take her away from that circle of support,

commitment and understanding? "

It means that one of the major creative roles you can play as a young parent is

to be an 'on purpose' bridge-builder, inviter, and circle-maker for your son.

And the circles I'm talking about are 'civilian' circles, not 'service circles'.

Services will (may) be important, but it's the committed circle that will change

his (and your) life.

It means that you need to be expressing your dreams for him and your family to

people who care about you, and eventually, helping your son express his own

dreams.

It means embedding yourselves in a community that you love, building your lives

there, and building his life there.

It means helping him learn to feel safe, loved, loving and engaged with many

people, and helping them feel safe, loved, loving and engaged with him.

McGee's work on Gentle Teaching offers an essential 'pattern language' for

thinking about this.

It means expanding your family circle, inviting more people in.

It means finding the 'sweet places' in his community (your community) where the

threads of his interest - his delights, his gifts - can be woven into a fabric

of companionship and contribution.

It means staying available to him as a family. This can take many forms as he

gets older, including the possibility of figuring out ways to continue to live

together with increasing amounts of autonomy in all of your lives.

One of the things that this means is coming to terms with the limitations of the

service system. You'll discover that you frequently end up in competition with

other people for diminishing resources - you may already be seeing it in the

'waiting lists'. But there's no waiting list for committed friendship.

It means taking steps towards financial security, sharing your vision, building

a network of support, working on alternatives to formal guardianship, etc. One

of the very best resources for all of this work is PLAN's book, A Good Life,

which can be found at http://www.agoodlife.org. Curiously enough, if you start

putting $5 a day into a good mutual fund today, you'll have over a million

dollars by the time he's 40.

The good news is that you're a young family, and this is a good time to start on

these things. You've got lots of time, and the time to start is now. I can tell

you this as an older dad of a child with major challenges.

It's clear that you have the vision, the love, the commitment, the creativity,

and the power of invitation. None of us can do all of this alone, but it's

evident that you have the capacity to invite and engage friends.

We build the future we want for our kids, bit by bit. This means finding allies

who understand all this, or maybe creating the place where this shared learning

starts. The best community is one that you create. He needs to live in

companionship, with people who are loving, creative, and connected. We can

almost never 'find' that - but we can build it.

And when I talk about 'building it', I'm not talking about building it for 'the

handicapped'. I'm talking about building it for your son.

The faith is that if we pay enough attention to our children and reflect on what

is in our own hearts, we will discover what we need to discover, invite who we

need to invite, and invent what we need to invent. It turns out to be an

exciting journey.

In solidarity,

http://www.community-works.net

Wendell Berry says that in the long run, " ....[what we need is] to love each

other, trust each other, and help each other. That is hard. All of us know that

no community is going to do these things easily or perfectly, and yet we know

there is more hope in that difficulty and imperfection than in all the neat

instructions for getting big and getting rich that have come out of the

universities and ... corporations in the past fifty years. "

September 1, 2001