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

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 3 rd 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 2 nd 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:  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.

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.

#1 Thing for Parents to Remember Listen to your gut

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