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Join us at noon CT (1 p.m. ET/10 a.m. PT) on Tuesday, June 28, for an hour-long chat about the challenges children with a disability face and how parents can help them thrive, with Chicago Tribune health reporter Deborah L. Shelton, and panelists Beth K. Ryan, Maria Z. Sander and Faye Manaster.

Millions of children in the U.S. live with a disability that they were born with or which was caused by accidental injury or disease. Some of those children live with more than one physical, mental, learning or developmental disability.

Beth K. Ryan is a senior child life specialist and coordinator of the Lekotek program at Children's Memorial Hospital in Chicago




Maria Z. Sander is a resource specialist at Family Services at Children's Memorial Hospital in Chicago.




Faye Manaster is the project director for the Family to Family Health Information Center for the Arc of Illinois. Manaster is fluent in sign language and has a 29 year-old daughter, Maya, who is deaf, blind and has cerebral palsy, as the result of extreme prematurity. Maya is a high school graduate who communicates via reading and writing braille plus tactile sign language. Prior to Maya’s birth, Manaster was a special education teacher and guidance counselor in Israel and in Chicago.


If you are unable to make the chat, or would like to send your question in advance, e-mail Deborah Shelton at dshelton@tribune.com.

Health Chat: Children living with a disability

(06/28/2011)

  

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11:51

[Be Right Back Countdown]

10 minutes  Tuesday June 28, 2011 11:51

11:57

Deborah Shelton:  Welcome to the Chicago Tribune web chat on children living with disability. Please stand by. We will be getting started shortly. Tuesday June 28, 2011 11:57 Deborah Shelton

11:59

Deborah Shelton:  Hello again! Thank you for joining us for today’s chat. Tuesday June 28, 2011 11:59 Deborah Shelton

11:59

Deborah Shelton:  Millions of children in the U.S. live with a disability that they were born with or which was caused by accidental injury or disease. Some of those children live with more than one physical, mental, learning or developmental disability. We will be talking today about how to help them thrive in a world that does not always adequately accommodate their needs. Tuesday June 28, 2011 11:59 Deborah Shelton

12:00

Deborah Shelton:  It is my privilege to introduce our three guest experts whose credentials are too long to list here. So here are the abbreviated versions: Tuesday June 28, 2011 12:00 Deborah Shelton

12:01

Deborah Shelton:  Beth K. Ryan is a senior child life specialist and coordinator of the Lekotek program at Children's Memorial Hospital in Chicago. Tuesday June 28, 2011 12:01 Deborah Shelton

12:01

Deborah Shelton:  Maria Z. Sander is a resource specialist at Family Services at Children's Memorial Hospital in Chicago. Tuesday June 28, 2011 12:01 Deborah Shelton

12:01

Deborah Shelton:  Faye Manaster is the project director for the Family to Family Health Information Center for the Arc of Illinois. Manaster is fluent in sign language and has a 29 year-old daughter, Maya, who is deaf, blind and has cerebral palsy, as the result of extreme prematurity. Maya is a high school graduate who communicates via reading and writing braille plus tactile sign language. Prior to Maya¿s birth, Manaster was a special education teacher and guidance counselor in Israel and in Chicago. Tuesday June 28, 2011 12:01 Deborah Shelton

12:01

Beth Ryan:  Hello and I am honored to be a part of this important discussion Tuesday June 28, 2011 12:01 Beth Ryan

12:02

Maria Sander:  Thank you for having me on the panel. Tuesday June 28, 2011 12:02 Maria Sander

12:02

Faye Manaster:  Hello - thank you for inviting me to participate on the panel. Look forward to speaking with everyone. Tuesday June 28, 2011 12:02 Faye Manaster

12:03

Deborah Shelton:  What are some of the initial challenges a family might face when they discover their child has a disbaility? Tuesday June 28, 2011 12:03 Deborah Shelton

12:04

Beth Ryan:  When a family has a child with a disability it is important to remember that whether a child is born with a disability or has one secondary to an accident or illness, the family typically will grieve. Grief is not something that most people think about right away as an initial challenge. Parents have hopes, wishes and dreams for their children. Upon the discovery that their child will be disabled, those dreams become fractured. Recognition of this grieving process is critical to helping support families. Tuesday June 28, 2011 12:04 Beth Ryan

12:04

Deborah Shelton:  What does grieving typically look like? Tuesday June 28, 2011 12:04 Deborah Shelton

12:05

Beth Ryan:  Good question but the short answer is that there is no typical or correct way to grieve...everyone grieves differently. How a family negotiates this challenge really depends on their ability to communicate, to cope withstress, and their ability to reach out and access resources Tuesday June 28, 2011 12:05 Beth Ryan

12:05

Faye Manaster:  Not all families grieve. Some families focus on the fact that their child is a survivor and focus on ways to get support to help their child thrive. Tuesday June 28, 2011 12:05 Faye Manaster

12:05

Deborah Shelton:  Our experts are answering your questions live. You can send them at any time. Tuesday June 28, 2011 12:05 Deborah Shelton

12:08

[Comment From CarolCarol: ]  How do you recommend parents can help children with disabilities play with and develop friendships with other children? When they cannot play sports or run around the neighborhood, they are left out. Tuesday June 28, 2011 12:08 Carol

12:08

Deborah Shelton:  Thank you for your question! Tuesday June 28, 2011 12:08 Deborah Shelton

12:09

Beth Ryan:  I believe that play is truly the universal language of every child, of every ability. Every interaction I have during my work with children at Children's Memorial Hospital here in Chicago is based on that belief. Part of my work at the hospital allows me to coordinate the Lekotek program. This is a play-based therapeutic program that brings families of children with disabilities together while providing a safe, fun environment where children and their typically developing siblings can play with both traditional and adapted toys that allow them failure-free access to play. Recognizing that an entire family is affected when a child has a disability, we support each individual as well as the collective family unit during our play sessions. We also lend the carefully chosen toys home to the families so that the playful learning process continues each day in their own environments. This, in turn, helps support a child's developmental progression. Tuesday June 28, 2011 12:09 Beth Ryan

12:10

Deborah Shelton:  Here's a resource for those who want to know more: www.lekotek.org Tuesday June 28, 2011 12:10 Deborah Shelton

12:10

Faye Manaster:  There are some resources for families that are available in all states.These include the Family to Family Health Information Centers in each state, as well as the Parent Training and INformation Centers which focus on special education rights. Tuesday June 28, 2011 12:10 Faye Manaster

12:11

Maria Sander:  There are many special recreation and sports opportunities for children with disabilities. Parents should investigate what resources are available in their community. Once children enroll families realize there are other children in their neighborhood that they can meet. Tuesday June 28, 2011 12:11 Maria Sander

12:12

Deborah Shelton:  More resources: specialrecreation.org and specialolympics.org Tuesday June 28, 2011 12:12 Deborah Shelton

12:12

Faye Manaster:  Families need to be creative- invite other children to join their child - to be an ambassador for their child, have equipment , such as a pool, a swing set, other attractive toys Tuesday June 28, 2011 12:12 Faye Manaster

12:13

Faye Manaster:  MOst important is connecting with other ,experienced families Tuesday June 28, 2011 12:13 Faye Manaster

12:14

Deborah Shelton:  Thank you all for your excellent questions. We are going through the list now and starting to post. Tuesday June 28, 2011 12:14 Deborah Shelton

12:16

[Comment From rebecca boudosrebecca boudos: ]  i reccomend networking with other families in your community, if programs are not available based on your child's needs, being creative with other parents to have play dates or other socilization opportunites. Finding special rectration programs in the community as well. Tuesday June 28, 2011 12:16 rebecca boudos

12:17

Faye Manaster:  CEnters for Independent Living A lot more is going on nowadays related to transition Tuesday June 28, 2011 12:17 Faye Manaster

12:17

Faye Manaster:  www.incil.org Tuesday June 28, 2011 12:17 Faye Manaster

12:18

[Comment From GuestGuest: ]  Beth, the lekotek program sounds great. I was just wondering if there are any group discussions or support groups for when children with disabilities age. I was born with Spina Bifida, spent most of my early years at Children's and am now 40yo and at the time I wish I was better prepared for adolescence and highschool years. So I was curious if there are groups now that can support teens or families of teens with disabilities. Those years seem to get lost in the shuffle many times. Tuesday June 28, 2011 12:18 Guest

12:19

Beth Ryan:  Great question I will let Faye and Maria answer that Tuesday June 28, 2011 12:19 Beth Ryan

12:19

Maria Sander:  Spina Bifida Association of Illinois has resources for you. I agree with Faye, Center for Independent Living is a good resources. The Rehabilitation Institute of Chicago also has good resources for adolescents transitioning into adulthood. Tuesday June 28, 2011 12:19 Maria Sander

12:20

Faye Manaster:  Also , disability/diagnosis-specific organziations www.illinoislifespan.org has statewide listings of CILS and support groups. Tuesday June 28, 2011 12:20 Faye Manaster

12:21

[Comment From Elliott Marks FRCDElliott Marks FRCD: ]  We are Family Resource Center on Disabilities, the Parent Training Center for Chicagoland. (312) 939-3513 Tuesday June 28, 2011 12:21 Elliott Marks FRCD

12:21

Deborah Shelton:  Thanks for the additional resource, Elliott! Tuesday June 28, 2011 12:21 Deborah Shelton

12:24

[Comment From rebecca boudosrebecca boudos: ]  A lot of medical programs are specifically working on transition efforts for adolescent patients and families, whether that be increasing understanding of condition, planning for work and college, and much more. Children's is starting a group called SAILS: Supporting Adolescents with Indpendent Life Skills to support patients with various chronic conditions ages 14-19 years old Tuesday June 28, 2011 12:24 rebecca boudos

12:25

[Comment From Purvi PatelPurvi Patel: ]  This is Purvi Patel with the Chicago Medical Legal Partnership for children. We actually provide legal advice to families at LaRabida Children's Hospital, Comer, and soetimes take referrals fromchildren's as well. There are organizations that will help with the legal aspects of transition, and physicians who help identify familes with legal issues related to transition can will often make referrals for familes ot us or other similar organizations. Tuesday June 28, 2011 12:25 Purvi Patel

12:25

Deborah Shelton:  Great resources. Thanks! Tuesday June 28, 2011 12:25 Deborah Shelton

12:26

[Comment From TerriTerri: ]  how do you think we can foster families' abilities to access resources, communicate and cope withstress? Tuesday June 28, 2011 12:26 Terri

12:27

Deborah Shelton:  Many families do feel stressed out and want help. Thank you for bringing this up. Tuesday June 28, 2011 12:27 Deborah Shelton

12:27

Faye Manaster:  This is a huge systemic issue- we need to deal with this at the local, state and national level. We need to do everything possible to support and fully implelment healthcare reform , so we will have no more uninsured people in the US. Each state and our nation needs to resolve the budget crises. Tuesday June 28, 2011 12:27 Faye Manaster

12:28

Beth Ryan:  Every family is going to handle it differently ...the more a family is able to access resources the easier it will be to help wiht their overall ability to cope. Tuesday June 28, 2011 12:28 Beth Ryan

12:28

Maria Sander:  When working with families I always ask them to reach out to one community resource at a time. This is a good way for families to not become overwhelmed with the amount of resources available to them. Tuesday June 28, 2011 12:28 Maria Sander

12:28

Faye Manaster:  Lots of the stress is connected to the family's economic challenges. Tuesday June 28, 2011 12:28 Faye Manaster

12:30

[Comment From GuestGuest: ]  How do you create programs for children with disabiliites when each child is so different and their needs and resources vary so widely? Tuesday June 28, 2011 12:30 Guest

12:31

Faye Manaster:  We need to focus on "natural environments" and "inclusion in life"...rather than "special programs"...how can we facilitate accessibility and inclusion in all aspects of daily life Tuesday June 28, 2011 12:31 Faye Manaster

12:32

[Comment From Mike KaminskyMike Kaminsky: ]  What are some of the first things parents should do for their children when they discover that they have a disability or a health condition? Do you folks have suggestions on how they could manage all of the "stuff" coming their way? Tuesday June 28, 2011 12:32 Mike Kaminsky

12:33

Deborah Shelton:  Good question! Tuesday June 28, 2011 12:33 Deborah Shelton

12:34

Faye Manaster:  Families should check into their health insurance coverage, ask about any and all possible resources from all of the helping professionals, ask to be connected with other families Contact statewide, consumer-focused organizations like Family to Family and Illinois Life Span Tuesday June 28, 2011 12:34 Faye Manaster

12:34

[Comment From GuestGuest: ]  The stress also comes from the isolation of not being able to partiicpate in "normal" everyday activities with children. When the family has nondisabled as well as disabled that adds to the stress of trying to balance the needs of everyone. Tuesday June 28, 2011 12:34 Guest

12:34

Beth Ryan:  Yes this is true. Siblings are often then forgotten patients and those they are shouldering more responsibility, sacrificing quantity and quality time with their parents and they sometimes feel that their own childhood has been taken from them. Fear, resentment, anger and isolation are all common emotions siblings face at some point when they have a brother or sister with a disability. Recognition of these feelings coupled with strong communication skills will help the siblings and parents re-negotiate the way the family behaves as a unit. For example, if we think of an infant's mobile that clips onto the side of a crib..it maintains a balance, right? Certainly it sways and bobs up and down when pushed or pulled but ultimately returns to a balanced center. When there are financial, educational, emotional or medical crises with these families, the "mobile" or overall structure becomes off balance. It's up to the family to figure out how to re-center themselves. Supportive relationships, resources and therapies can help families find their new balance or center. Tuesday June 28, 2011 12:34 Beth Ryan

12:37

Maria Sander:  Sibshops Groups are for brothers and sisters of person with special needs, is for some a good thing, The goal of Sibshop is to provide brothers and sisters of children with special needs an opportunity to meet other siblings in a relaxed recreational setting. Tuesday June 28, 2011 12:37 Maria Sander

12:38

[Comment From Karolina Lieponis LCSWKarolina Lieponis LCSW: ]  www.sibsnetwork.org Tuesday June 28, 2011 12:38 Karolina Lieponis LCSW

12:38

Deborah Shelton:  Thank you! Tuesday June 28, 2011 12:38 Deborah Shelton

12:39

[Comment From GuestGuest: ]  Lekotech is such a wonderful program as it allows families to share expensive resources and keeps things "fresh" for the children to motivate them. Are there any other lending type programs for families to borrow equipment, toys, ways to be more mobile and active with other kids? Tuesday June 28, 2011 12:39 Guest

12:40

Faye Manaster:  Families can contact the Family to Family Center in their state in order to be linked to specific resources. Visit www.familyvoices.org and click on the map "in your state" Tuesday June 28, 2011 12:40 Faye Manaster

12:41

Faye Manaster:  Illinois Assistive TEchnology Project lends toys and equipment Tuesday June 28, 2011 12:41 Faye Manaster

12:41

Maria Sander:  States other Illinois need to check the www.familyvoices.org link to see what is offered. Tuesday June 28, 2011 12:41 Maria Sander

12:42

Deborah Shelton:  We are accepting your questions to the experts live. Tuesday June 28, 2011 12:42 Deborah Shelton

12:44

[Comment From Mike KaminskyMike Kaminsky: ]  Can you address the need to know about the fragmented service delivery system that we have in Illinois and some of the things to be aware of when trying to get services for a child with a disability. Tuesday June 28, 2011 12:44 Mike Kaminsky

12:45

Deborah Shelton:  Thank you for the question Mike. Unfortunately, services for children with disabilities are often fragmented. Tuesday June 28, 2011 12:45 Deborah Shelton

12:45

Maria Sander:  Illinois is not the best when it comes to provided services to children with disabilities. Parents need to be saavy and be a voice for their children. It is important to be a member of the ARC of Illinois and to constantly keep contact with State Legislatures. Tuesday June 28, 2011 12:45 Maria Sander

12:46

Maria Sander:  If you do not know who your State Legislature is contact the National Conference of State Legislatures www.ncsl.org. Tuesday June 28, 2011 12:46 Maria Sander

12:48

Faye Manaster:  FAmilies who are just starting out need to get a home fax machine- 1. to send/receive documents and release forms (fax signatures are legal in IL) 2. It can also function as a copy machine If you are a friend or relative, a fax machine is a good gift to share as the family embarks on this journey, including massive amounts of paperwork and record keeping. Getting out of the house to deal with things may be difficult- an fax machine can to overcome logistical barriers. Tuesday June 28, 2011 12:48 Faye Manaster

12:51

[Comment From GuestGuest: ]  Some parents truly seem gifted at this while others can't cope. How can we harness the "best practices" the parents come up with so more children can benefit? Tuesday June 28, 2011 12:51 Guest

12:51

Beth Ryan:  I would like parents to remember it is that every child is unique and should be seen through the lens of their abilities. Arm yourself with knowledge and support but also as you move through this journey, look to the different ways your child brings light into your life. Tuesday June 28, 2011 12:51 Beth Ryan

12:52

Maria Sander:  All families deal with stress differently. Focus on the families ability and not their disability. What can mom accomplish today? One step at a time. Tuesday June 28, 2011 12:52 Maria Sander

12:52

Beth Ryan:  A great starting point is contacting your pediatrician Tuesday June 28, 2011 12:52 Beth Ryan

12:53

Faye Manaster:  The National REspite Coalition has a poster "asking for help is a sign of strength". Offer to help in concrete ways...help with housework,cooking meals, babysitting, errands, transportation...People will say :let me know if I can help"..they mean "I don';t have a clue re how to help"...I tell families to make a list.. Tuesday June 28, 2011 12:53 Faye Manaster

12:54

Deborah Shelton:  Are there any additional resources that we haven't covered? Tuesday June 28, 2011 12:54 Deborah Shelton

12:55

[Comment From Jill WohlJill Wohl: ]  FYI more information on the Chicago Medical Legal Partnership for Children that Purvi mentioned can be found on Health & Disability Advocates' website at hdadvocates.org Tuesday June 28, 2011 12:55 Jill Wohl

12:56

[Comment From GuestGuest: ]  The Starlight Foundation provides events for children and their familes and is a great resource in Illinois. Tuesday June 28, 2011 12:56 Guest

12:58

Deborah Shelton:  Time flew by. I think we squeezed a lot of information into this chat. Thank you to our guests for sharing their expertise with us today. Tuesday June 28, 2011 12:58 Deborah Shelton

12:58

Faye Manaster:  Thanks so much for inviting me to participate. Any questions, you can reach me at 866-931-1110 or email me at familytofamily@thearcofil.org Tuesday June 28, 2011 12:58 Faye Manaster

12:58

Maria Sander:  Thank you again for opportunity to be hear today. If I can leave you with one comment it would be, "Focus on the Ability and not the disability." Enjoy the rest of your day. Tuesday June 28, 2011 12:58 Maria Sander

12:58

Beth Ryan:  Thank you so much for allowing me to be a member of this panel. Tuesday June 28, 2011 12:58 Beth Ryan

12:59

Deborah Shelton:  Thank you also to the people who submitted questions and read this chat. Remember this chat will be permanently archived here if you want to read this transcript later. Tuesday June 28, 2011 12:59 Deborah Shelton

1:00	Deborah Shelton:  Julie Deardorff will be here at the same time, day and place next week talking about children with ADHD. Come back! Have a great day everybody! Tuesday June 28, 2011 1:00 Deborah Shelton

1:00