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.