Out of the Box: A Family’s Search for Child-Centered Services

1. Out of the Box:A Family’s Search for Child-Centered Services Sarah Lyons New Louisville, KY

2. 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

3. 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.

4. Happy 3rd Birthday! Now What?

5. Who Decides… • …where my daughter goes to preschool? • …what are the appropriate supports? • …who we choose for speech therapy?

6. Who Owns My Daughter?

7. 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

8. 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.

9. Good Transition • Early intervention & school personnel experienced in working with Deaf & Hard-of-Hearing children. Good Transition? • Lack of interest in exploring options.

10. 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.

11. Good Transition • Early intervention providers shared a lot of information with parents, grandparents and child care staff. Good Transition ? • Violations of confidentiality & ethical concerns.

12. 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.

13. 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

14. 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.

15. 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.

16. Top Ten Things Parents want Professionals to Remember: • We are not taking these choices lightly. • Respect our choices for providers, communication & placement. • Language development is our first concern but not our only concern. • Don’t rush us. • You are not the parent.

17. Top Ten Things Parents want Professionals to Remember: • You are not the parent. • We want the best for our kids. • Extended family members (typically) do not make decisions. • We want to know what you’re talking about – not talked down to. • Do not attend meetings if you aren’t invited.

18. #1 Thing for Parents to Remember Listen to your gut

19. At the end of the day… …you’ll do what’s right.