out of the box: a family’s search for child-centered services sarah lyons new louisville, ky
TRANSCRIPT
Out of the Box:A Family’s Search for
Child-Centered Services
Sarah Lyons NewLouisville, KY
The Power of Parents
• 1 Parent = A fruitcake• 2 parents = A fruitcake and a friend• 3 parents = Troublemakers• 5 parents = “Let’s have a meeting”• 10 parents = “We’d better listen”• 25 parents = “Our dear friends”• 50 parents = A powerful organization
From the Parent Leadership Associates www.plassociates.org
A journey begins….
• We met our daughter when she was 6 weeks old• She was diagnosed with profound
bilateral SNHL at 2 weeks
• She was in early intervention at 5 months
• We started visits at 15 months• Placed in our home at 17 months.
Happy 3rd Birthday!
Now What?
Who Decides…
• …where my daughter goes to preschool?
• …what are the appropriate supports?
• …who we choose for speech therapy?
Who Owns My
Daughter?
This is the way you ought to go….
• From early intervention to…
• Center-based program for D/HH children to…
• Public elementary school with a D/HH program
Good Transition• Early intervention in our area starts
the transition process 3 months after the child’s 2nd birthday.
Good Transition ?• Pressure to commit to a preschool
program one year in advance, before any meetings with the school system.
Good Transition
• Early intervention & school personnel experienced in working with Deaf & Hard-of-Hearing children.
Good Transition?
• Lack of interest in exploring options.
Good Transition• A system existed to allow continuity
of approach in language strategies and technological support.
Good Transition?• Part C providers worked for the school
contracted to provide Part B services and the affiliated implant center.
Good Transition• Early intervention providers shared
a lot of information with parents, grandparents and child care staff.
Good Transition ?• Violations of confidentiality & ethical
concerns.
What did we think?
• Behavior of some early intervention providers created distrust.
• Not happy with observations of center-based or public pre-school classrooms.
• Most importantly, other families’ experiences supported looking outside the box.
What were our options for pre-school services?
• Center-based program for D/HH kids (four half days per week)
• Public preschool with classroom support (four half days per week)
• Current private preschool (five full days per week) supplemented by a service plan
What we chose
We chose to leave our daughter in private preschool with a service plan through the public school system.
We are the first family in our school district to choose a service plan for a
three year old.
What we chose• She receives one-on-one sessions twice a week
with a Teacher for the Deaf & Hard of Hearing & speech therapy at a local elementary school
• We kept private speech therapy for a total of 2 hours, 45 minutes of services per week
• The rest of the time she is surrounded by typical language models in a preschool program with a strong focus on academic readiness.
Top Ten Things Parents want Professionals to Remember:6. We are not taking these choices lightly.7. Respect our choices for providers,
communication & placement.8. Language development is our first
concern but not our only concern.9. Don’t rush us. 10.You are not the parent.
Top Ten Things Parents want Professionals to Remember:
1. You are not the parent.2. We want the best for our kids.3. Extended family members (typically)
do not make decisions.4. We want to know what you’re
talking about – not talked down to.5. Do not attend meetings if you
aren’t invited.
#1 Thing for Parents to Remember
Listen to your gut
At the end of the day…
…you’ll do what’s right.