for children with disabilities

[Guest guest]

Is there a group, like the IPADD group, that is just for Illinois

families of children with disabilities? It would be nice for families

with younger children to network and share ideas and help with

educational situations. God knows there are thousands of families that

could benefit. Thanks! chris

[Guest guest]

Hi -

I run a group for children with apraxia. Many of the children our

group serves have some other issues as well - ADHD, anxiety,

autism/spectrum, etc. When I post stuff on the website, I usually post

whatever would help my own son who is a little of this and a little of that.

And then I encourage families to post or recommend as well. There is a mom

who is part of our group that passes along info she gets as well. She works

on behalf of a special ed parent group in Evergreen Park. We often get the

same information, but there are some things she happens upon that I don't

happen upon so it may be worth signing up with her for her occasional

e-mails. There is a group on the north side of Chicago - Special Kids,

Special Families - that holds a lot of meetings for parents as well. I have

also heard that Laurie's site is an outstanding resource and I need to sign

up for that one, too.

I'm happy to pass along what I have even though it seems like it is more

bits and pieces. I've always thought it would be nice to have a Chicagoland

or Illinois-wide site that acts as an online resource clearinghouse.

Haven't found it yet, but it would be an awesome thing to have. I'll tell

you, though.I've never learned as much than through the advice, resources,

knowledge or footsteps of another parent. I'm thankful for this website as

Jack gets older - perusing your conversations is like reading a whole other

language. But then, I was thinking that several years ago with what I know

now. I've always compared navigating this whole special needs world to

being in an underground maze and having a key to a door and a candle that

keeps getting blown out. I always run into someone with a match or a

flashlight to help me find my way to the door - sometimes the key fits and

sometimes it doesn't. As I continue, my candle goes out again, but I always

find someone in this maze to help. That is sort of how I keep going. So

I'll thank you all now for having the matches, flashlights and other

resources to help me find my way for my son.

Take care,

Holly

Tim's wife/Jack (11.6) & Connor's (3.3) Mom

Downers Grove, Illinois

Jack, our complex little trooper somewhere in PDD-NOS-land (includes global

apraxia, visual, auditory & sensory processing disorder, hypotonia,

dysarthria, nonverbal learning disorder, transient tic disorder, with

symptoms of high anxiety, ADD & OCD and on a medication cocktail that is

helping make progress....)

Connor, our little monkey who is speaking in 9-word sentences & reaping the

benefits of a " jump start " through early intervention...now in preschool!

Co-Moderator

Windy City Apraxia Online Discussion Group & Website

Parent Leader

Chicagoland Apraxia Network

[Guest guest]

Hi Holly:

Enjoy your " tongue in cheek " approach. Great that you have a group for

children with apraxia. I am sure many families, teachers and therapists find it

useful.

Glad to have you onboard IPADDU as an additional resource!

Ellen

Ellen Garber Bronfeld

egskb@...

Re: group for children with disabilities

Hi -

I run a group for children with apraxia. Many of the children our

group serves have some other issues as well - ADHD, anxiety,

autism/spectrum, etc. When I post stuff on the website, I usually post

whatever would help my own son who is a little of this and a little of that.

And then I encourage families to post or recommend as well. There is a mom

who is part of our group that passes along info she gets as well. She works

on behalf of a special ed parent group in Evergreen Park. We often get the

same information, but there are some things she happens upon that I don't

happen upon so it may be worth signing up with her for her occasional

e-mails. There is a group on the north side of Chicago - Special Kids,

Special Families - that holds a lot of meetings for parents as well. I have

also heard that Laurie's site is an outstanding resource and I need to sign

up for that one, too.

I'm happy to pass along what I have even though it seems like it is more

bits and pieces. I've always thought it would be nice to have a Chicagoland

or Illinois-wide site that acts as an online resource clearinghouse.

Haven't found it yet, but it would be an awesome thing to have. I'll tell

you, though.I've never learned as much than through the advice, resources,

knowledge or footsteps of another parent. I'm thankful for this website as

Jack gets older - perusing your conversations is like reading a whole other

language. But then, I was thinking that several years ago with what I know

now. I've always compared navigating this whole special needs world to

being in an underground maze and having a key to a door and a candle that

keeps getting blown out. I always run into someone with a match or a

flashlight to help me find my way to the door - sometimes the key fits and

sometimes it doesn't. As I continue, my candle goes out again, but I always

find someone in this maze to help. That is sort of how I keep going. So

I'll thank you all now for having the matches, flashlights and other

resources to help me find my way for my son.

Take care,

Holly

Tim's wife/Jack (11.6) & Connor's (3.3) Mom

Downers Grove, Illinois

Jack, our complex little trooper somewhere in PDD-NOS-land (includes global

apraxia, visual, auditory & sensory processing disorder, hypotonia,

dysarthria, nonverbal learning disorder, transient tic disorder, with

symptoms of high anxiety, ADD & OCD and on a medication cocktail that is

helping make progress....)

Connor, our little monkey who is speaking in 9-word sentences & reaping the

benefits of a " jump start " through early intervention...now in preschool!

Co-Moderator

Windy City Apraxia Online Discussion Group & Website

Parent Leader

Chicagoland Apraxia Network

[Guest guest]

Holly: 

Thanks for all the insights you provided on the groups that you are aware of. 

I'd like to include your resource, the group for children with apraxia and

other disabilities on our website www.IllinoisLifeSpan.org as we strive to be

that clearinghouse of resources you refer to below.  Please send me any contact

information you can on your group as well as the others you've mentioned so that

we may include them in www.IllinoisLifeSpan.org site. 

In case you are not familiar with the site, we have an online database with

thousands of providers, hundreds of advocacy resources as well as hundreds of

support groups throughout the state.  We have a pretty powerful multi-level

search engine where you can search for resources by:

1. The type of services you are seeking. 

2. The type of provider you are seeking.

3. The name of the agency you are seeking.

4. A keyword search.

5. County or multiple-county search.   Or you could just select a county and

see all the providers or advocacy resources that provide services or have

resources in the chosen county.  you ca expand the search to

adjacent counties or search all counties in the State of Illinois.   

All of the local offices for Social Security, Division of Rehabiltation

Services, Local DHS offices and HFS offices are listed as well as many others

including Independent Service Coordination Agencies, Centers for Independent

Living,

We also have many useful documents online under a link called, " Featured

Resources & Articles. "   But we also have much more listed

under  " Documents/Resources. "   We have a comprehensive listing of links to other

online resources which is continually growing.  It is not exhaustive by any

means, but we are getting there. 

So here's an open invitation to all IPADD members to check out the Search for

Advocacy/Service Providers online database of resources and our listing of

Related Website Links on www.IllinoisLifeSpan.org.  If resources you facilitate

or participate in are not listed, please let us know and provide some contact

information for our staff to follow up and we'd be happy to post the information

in the appropriate section.   Our goal is not to replace any of the resources

out there, merely to make those resources available to users of the Illinois

Life Span website and toll-free phone number.   People contact us for resources

and we will search our own site to provide them with information that would most

likely be helpful.  If we aren't successful, we'll try the internet at large to

help people find what they are seeking. 

Also, don't forget another resource called www.TheArcLink.org which is a

nationwide database of resources in various states.  I think they have about 20

states on board, but they are working on many more.  www.TheArcLink.org has a

unique search for providers that is based on a radius around your zip code. 

Users set the search for the type of service they seek, enter in their zipcode

and choose the radius (how many miles from their zipcode they are willing to

travel - from 25 miles to 100 miles) and the results show the listing of

providers that exist within that radius from closest to that zipcode first to

furthest from the zipcode last.  The Illinois section contains a list of about

5000 EI therapists from a few years back.  It is past time for us to update that

listing.  But there are many other resources on www.TheArcLink.org too. 

BTW, I love your analogy about the Special Needs world being an underground maze

and having to use candles to find the keys that unlock doors until you find

someone with a flashlight when you candle gets blown out.  I hope that sharing

the above information will be illuminating for you and others as we try to help

our people with disabilities lead full lives. 

Mike

Re: group for children with disabilities

Hi -

I run a group for children with apraxia. Many of the children our

group serves have some other issues as well - ADHD, anxiety,

autism/spectrum, etc. When I post stuff on the website, I usually post

whatever would help my own son who is a little of this and a little of that.

And then I encourage families to post or recommend as well. There is a mom

who is part of our group that passes along info she gets as well. She works

on behalf of a special ed parent group in Evergreen Park. We often get the

same information, but there are some things she happens upon that I don't

happen upon so it may be worth signing up with her for her occasional

e-mails. There is a group on the north side of Chicago - Special Kids,

Special Families - that holds a lot of meetings for parents as well. I have

also heard that Laurie's site is an outstanding resource and I need to sign

up for that one, too.

I'm happy to pass along what I have even though it seems like it is more

bits and pieces. I've always thought it would be nice to have a Chicagoland

or Illinois-wide site that acts as an online resource clearinghouse.

Haven't found it yet, but it would be an awesome thing to have. I'll tell

you, though.I've never learned as much than through the advice, resources,

knowledge or footsteps of another parent. I'm thankful for this website as

Jack gets older - perusing your conversations is like reading a whole other

language. But then, I was thinking that several years ago with what I know

now. I've always compared navigating this whole special needs world to

being in an underground maze and having a key to a door and a candle that

keeps getting blown out. I always run into someone with a match or a

flashlight to help me find my way to the door - sometimes the key fits and

sometimes it doesn't. As I continue, my candle goes out again, but I always

find someone in this maze to help. That is sort of how I keep going. So

I'll thank you all now for having the matches, flashlights and other

resources to help me find my way for my son.

Take care,

Holly

Tim's wife/Jack (11.6) & Connor's (3.3) Mom

Downers Grove, Illinois

Jack, our complex little trooper somewhere in PDD-NOS-land (includes global

apraxia, visual, auditory & sensory processing disorder, hypotonia,

dysarthria, nonverbal learning disorder, transient tic disorder, with

symptoms of high anxiety, ADD & OCD and on a medication cocktail that is

helping make progress.... )

Connor, our little monkey who is speaking in 9-word sentences & reaping the

benefits of a " jump start " through early intervention. ..now in preschool!

Co-Moderator

Windy City Apraxia Online Discussion Group & Website

Parent Leader

Chicagoland Apraxia Network