"Families with a chronically ill child [child with a disability ... ] confront
challenges and bear burdens unknown to other families. The shock of the initial
diagnosis and the urgent and compelling need for knowledge; the exhausting
nature of constant care unpredictably punctuated by crises; the many and
persistent financial concerns; the continued witnessing of a child's pain; tensions
with one's spouse that can be aggravated by the fatiguing chronicity of care; the
worries about the well-being of other children; and the multitude of questions
involving the fair distribution within the family of time, money, and concern --
these are the challenges that parents of chronically ill children must face."
(Hobbs, Perrin, and Ivey, 1986, p. 80)
"Denial buys the time needed to blunt the initial impact of a
shattered dream, to discover the inner strengths needed to confront
what has really happened, and to find the people and resources
needed to deal with a crisis for which one could not be prepared."
(Ken Moses, 1987)
THIS IS EXACTLY THE KIND OF FAMILY YOU WILL BE WORKING WITH AS A
PROFESSIONAL: (see above and below):

Parents who feel:                                                        
stress                                                                                                           
shock                                                                                                    
denial                                                                                                      
guilt                                                                                                      
anger                                                                                                 
resentment                                                                                                 
love                                                                                                           
adoration                                                                                                 
acceptance                                                                                 
discouragement                                                                                           
loss                                                                                                           
sad                                                               
needy                                                
happy                                                          
isolated                                                        
like screaming                                            
like crying                                                   
like laughing                                               
mad at their spouse                                    
fear                                                                    
jealousy                                                       
hope                                                           
                                                            
                                                            



~No families are alike.        
~You own experience and/or family life and/or experience with the disability may not be even close to the student's or
family's experience; neither is right or wrong.
~Everyone is different.
~Never assume.
~Always ask if you are unsure what is needed from a parent.
~Be their friend and supporter.
~Be respectful. Always. ALWAYS.
~Do not be a know-it-all, but be knowledgeable.
~Do not use only educational jargon.
~Do not judge! Remember, you should have that private journal for deeply private rantings??  Do it, you'll love me for
giving you this idea.
~Be a learner along with the parents.
~Be very proactive for the child and the family.
~Help the family be proactive for the child and themselves as well.
TIA: a little girl with spina bifida.
Look at the different perspectives of each of her team. Then, we will have an IEP meeting, with each of you randomly given a
role. See how the perspectives differ between professionals and also between the parent and professionals.
TIA: the facts.

TIA attends a public elementary school from 9:00 am to 2:30 pm
five days a week. There are 18 children in the first grade
classroom including TIA. In the classroom are: a TEACHER, an
ASSISTANT, and a FACILITATOR who addresses such things
as suctioning and assisting TIA from one place to another.

TIA has spina bifida, a tracheostomy, and other medical needs.

Currently TIA receives SPEECH THERAPY for 20 minutes 2
times a week at school. The DOCTOR has suggested that TIA
do breathing and speech exercises for 20 -- 30 minutes every day
at home.

TIA receives OCCUPATIONAL THERAPY for 20 minutes 2
times a week at school.

She also has a HOME HEALTH NURSE visit for 4 hours on
Thursdays at her home.

The SPECIAL EDUCATION TEACHER visits and consults
with the CLASSROOM TEACHER every Monday for one hour.
THESE people are on TIA's IEP TEAM:

Tia's parents
general education teacher
special education teacher
school administrator
occupational therapist
speech/language pathologist
classroom facilitator
classroom assistant
physician
home health nurse
and other interested parties as determined by
the IEP team.
TEAM MEETING CHECKLIST:

1. Family members participate as they prefer.
2. Meetings are held at a regularly scheduled time.
3. Meetings start on time.
4. Seating arrangement is conducive to ALL communicating.
5. All pertinent team members have been invited.
6. All pertinent team members attend.
7. Meetings are guided by an agenda.
8. During the meeting, agenda items are identified for the next
meeting.
9. Meeting minutes are recorded.
10. Minutes are distributed in a consistent manner to absent
members.
11. The team has a system to convey necessary information to
non-team members as needed.
12. A leader or facilitator is designated for each meeting.
13. The team accomplishes tasks on the meeting agenda.
14. The meeting concludes with a summary or review time.
15. The meeting ends on time.
16. Each team member feels free to express his/her feelings.
17. The team explores multiple solutions before selecting a
solution.
18. The team uses a collaborative problem-solving process.
19. The meeting is facilitated by roles such as recorder, time
keeper, jargon buster, etc. that change with each meeting.
Tia's Parent
You are the mother/father of a delightful and rambunctious 6 year old girl named Tia. Tia was born with spina bifida and then a
tracheostomy was placed when she was 6 months old. Her doctor has recently said that this will be permanent, but you haven't given up
the hope of her regaining enough respiratory strength so that it can be removed. Currently Tia has some health issues due to the
tracheostomy. Occasionally she has to be resuscitated. Therefore, oxygen, a bagger, and her suctioning equipment must always be close
and school staff must be specially trained to be able to work with her.

Tia is very verbal. She scores right at her age for cognitive skills. She is so smart, in fact, that she frequently figures out ways to
manipulate adults. She is very sensitive and kind to other children. It means a lot to her to have a friend to play or work with. She has
two or three close friends from school. Her social skills are one of her greatest assets.

At school, Tia walks with leg braces or uses her wheelchair, but at home Tia usually likes to relax without her braces on and just crawls
or scoots around. During the week at home, Tia needs to rest a lot so she can have strength to attend school. Tia loves school!

After trying several doctors, you have found one that will approve a speaking valve for Tia's trach. Some doctors felt her respiratory
health was too weak yet. You really want Tia to be able to use this valve at school, but you don't care if she uses it at home or not. You've
asked the teacher to call a meeting of the team so you can tell them about the valve and to put an increase of speech services on her IEP
so she'll get the help she needs to get ready for the valve and then to use it.

You just found out today that Medicare will buy two valves every six months. They are somewhat disposable so everyone will have to be
careful with them.

What are you going to ask the school district for?
What are you going to ask the school for?
What do you hope will be the outcome of this meeting?
School Administrator
You are the principal for the school Tia attends. Tia is a 6 year old girl with a tracheostomy which was placed when she was 6 months
old and which her doctor says will be permanent. She has spina bifida as well as the health issues due to the tracheostomy. She is verbal
and scores right at her age for cognitive skills.

Tia has some behavior concerns. When she doesn't get her way, she holds her breath until she has to be resuscitated. Therefore,
oxygen, a bagger, and her suctioning equipment must always be close. She often refuses to follow the teacher's instructions. She can walk
with her braces but sometimes uses a wheelchair.

Tia receives many services while at school and at home. The district provides transportation, speech therapy, physical and occupational
therapy, a personal assistant in the classroom, and training to all staff working with Tia regarding her medical needs.

You usually participate in Tia's IEP meetings and have worked with the education team and the parents in order to coordinate some
services and funding for equipment or services. The parents have approached you with questions about obtaining funding for a new type
of valve for Tia's trach and for your support in getting more speech therapy for Tia so she can achieve the skills she needs to be
successful with the valve.

The classroom teacher has asked you to attend a meeting concerning Tia.

You are not sure what is going to be discussed at the meeting, but you hope to find out more about the possibility of increasing her
speech time without overburdening your speech pathologist. You are also wondering what this valve thing is and if the school has to pay
for one more thing for this child.   

What questions do you want to ask during this meeting?
What do you hope are outcomes from this meeting?   
Occupational Therapist
You are Tia's OT. Tia is a 6 year old girl whose greatest needs are in the motor area. Tia has spina bifida as well as other health
impairments. She is very verbal and can express her needs for suctioning of her tracheostomy, etc. She definitely has a mind of her own.
When she doesn't get her way, or enjoy an activity, she may hold her breath until she passes out which is very dangerous with her
compromised respiratory situation. She often cries when asked to work on range of motion or strengthening activities. She is highly
distractible.

You are scheduled to work with Tia for 20 minutes two days a week during Tia's recess time. Sometimes it is difficult for you to make it
to her school at the assigned time. Although recess is a good time for you to be involved with her class, you also feel that some time for
you to be alone with Tia is important.

You try to keep the classroom teachers up-to-date on Tia's needs, accomplishments, and challenges, but you have no time to meet
immediately following Tia's time and you have a very busy case load. Making it to the meetings concerning Tia is also quite difficult.
Today the team is meeting to discuss Tia's progress and your concerns about serving Tia and sharing information with classroom staff.

What questions do you have for this meeting?
What would you like to see as outcomes for this meeting?        
Classroom Teacher
You are Tia's teacher. Tia is a 6 year old girl with a tracheostomy which was placed when she was 6 months old. Her doctor has said it is
permanent. She has spina bifida as well as the health issues due to the tracheostomy. She is verbal and scores right at her age for
cognitive skills.

Tia has a number of behavior concerns. When she doesn't get her way she may hold her breath until she has to be resuscitated.
Therefore, oxygen, a bagger, and her suctioning equipment must always be close. She often refuses to follow teacher instructions. She
argues with and hits other children, which doesn't hurt them, but may cause them to hurt her. She is very sensitive to other children
being mean to her and she cries easily. It means a lot to her to have a friend to play or work with. She can walk with braces, but whines
and sits down when asked to go more than 3 or 4 steps. She refuses to push her own wheelchair more than 10 feet. Her social skills are
her area of greatest need at this time.

Tia receives services from several therapists and you and your staff try to meet often with them, but it is really hard to schedule meetings
because they are so busy and it's hard for you and your staff to get away from the students. The speech therapist has talked to you about
working on Tia's speech goals in the classroom. You feel that now the speech therapist wants you to do her/his job too!   
 
The team is gathering today to address your concerns with Tia's social skills and to plan for the sharing of knowledge among your staff
and the therapists.

What questions do you have for this meeting?
What would you like to see as outcomes from this meeting?        
Speech Language Pathologist
You are Tia's communication specialist. Tia is a 6 year old girl with a tracheostomy which was placed when she was 6 months old and
which her doctor says will be permanent. She has spina bifida as well as the health issues due to the trach. She is verbal and scores right
at her age for cognitive skills.

Communication, however, remains her area of greatest need. She has numerous articulation errors and often is not understood by other
children or strangers. She needs to greatly increase her breath control and stamina so that she can wear a different type of valve on her
trach. The new valve would improve her speech intelligibility and decrease the functionality and health problems of her having to
remove her vent and place her finger over her trach opening in order to speak.

You usually work with Tia at the end of snack time and beginning of free-choice play twice a week. You would like to begin doing some
type of group activity to provide Tia with support as well as to enhance the other children's interactions with her. If you did a group
activity you would have to decrease your other time with Tia, because your schedule is completely full.

You try to attend as many of the numerous meetings regarding Tia as you can, but find it difficult with your large caseload. It would really
help if you could do more “role release” with the teacher and have her/him embed the training activities during other opportunities on
days when you aren't on site.

The team is gathering today to address your concerns with Tia's communication plan and to plan for her progress toward being
physically capable of wearing a valve on her trach opening.

What questions do you hope to get answered at this meeting?
What plans do you want to share with the team?
What do you hope will be the outcome of this meeting?
Parents who are:
caring
intelligent
effective
depressed
facing crises
broke
broken
tolerant
culturally diverse
single
married
girls
boys
poor
rich
in a blended family
divorcing
working to make the marriage last
raising the children with a nanny or other caregivers
living with parents
absent
religiously diverse
sexually diverse
homeless
the child's grandparents
foster parents
Parents who can:
adapt
cope
bargain
fail
succeed
give up
try harder and harder
cry
cannot cry
pay for what is needed
cannot pay for what is needed
ask for help
recognize stress