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SPED Family Stories Presentation
Transcript of SPED Family Stories Presentation
Project Emily Caroline Lisa & Jeff "This is our life, what God has given us, and He had a purpose for it." "Lifeline's goal is to meet the unique needs of families of those with special needs. When someone is drowning, a life preserver is extended. Our hope is to extend a similar lifeline to families struggling to be caregivers. LifeLine's purpose is to help caregivers thrive, not just survive. It is also our hope to show forth Jesus, the only giver of eternal life." provide support, information, and respite care aimed at families with children, but goal is to serve across the lifespan ParentLink training & classes Parents' Night Out Spina bifida incomplete "zipping" Lisa lost weight during pregnancy... "We knew how to plan since we knew early..." Miracles:
surgey 4 hours after birth
no one expected health to be as good as it was...
came home at 13 days
shunt in at 9 days (not permanent...) "So many families are basically told, these are the issues…you basically need to abort and start over. So thankful that my doctor didn’t do that. He said I’m with you all the way" "Most Christian schools don’t take kids with disabilities…Oakwood was willing to give Emily a chance. What they have accomplished with her is nothing short of amazing." 1st grade achievement testing--right on track! major medical crisis during 2nd grade (puberty); repeated 2nd Lisa as aid 2nd & 3rd didn't need Lisa much in 4th...reading is the most difficult thing Spelling testing: post-high school KJV Bible non-verbal until 4 (not something that usually goes with spina bifida) "When she was born, I never dreamt that a Christian school education was possible. It takes more energy than it does money. They don’t get any funding from public sources. To a degree, I understand why they don’t usually want to accept kids with disabilities." "Having finances to send kids to Christian school is tricky." TennCare “We’ll pray about it.” Somehow the bill is always paid within 3 or 4 weeks of the school year ending. Opposites--small & behind vs. big & ahead Potty training: wants to "be like sissy" “If God can give us what we need for Emily, He will give us what we need for Caroline.” "at home" with children with special needs "What's a disability, and do I have one?" LifeLine's influence future advocacy senses when others need help Education Social & faith community Health Care
Employment Transportation & housing Policy & Research Interests What the Future Holds continue at Oakwood, if God provides the funds wants to go to college funding concerns: IQ close to average small funding from state--Family Support in Tennessee grant--invested in house "If I could just make a little bit more money..." vicious cycle vicious cycle "forced poverty" "forced poverty" hippotherapist "We have always been part of churches that make her part of the church. They not only serve her but allow her to serve. That will be our continued goal. We could not have made it without our church family." "Teaching [Emily] to drive would be a very large lesson in faith" ADA accessible vs. functionally accessible "People don't always pursue grants, but I wish they would" information to families with prenatal diagnosis: "life can go on and it will be a good one" including family as a whole The Beach Horsebackriding Cruisn' Recess Cooking Dinner do everything with the family Undercut cabinetry Swings just for Emily 3 weeks at Oakwood... trunk control beyond what physical therapy can do hand-petal trike from the Civitan Club Caroline, riding on the back started at 2 1/2 end of 2002 women's retreat moved out of church in 2009 CPRC grant—Community Parent Resource Center grant—U.S. Dept. of Education, Office of Special Education—rarity b/c first time to write a grant (no professional writers) AND Christian ministry—we had 6 years of experience / knew the lingo 11 mo. battle with Hamilton Co.
non-verbal until 4