What’s best for our deaf child? - a parents perspective, 24-10-2009


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The FEAPDA congress dealt with the vital but not always easy relationship between families, teachers of the deaf and other professionals. How can this be a useful and effective relationship?
Inge Doorn, one of the keynote speakers, presented: What’s best for our deaf child? - a parents perspective.

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What’s best for our deaf child? - a parents perspective, 24-10-2009

  1. 1. A parent's perspective FEAPDA Inge Doorn What's best for our child?
  2. 2. Introduction <ul><li>Three children </li></ul><ul><li>Jara is deaf </li></ul><ul><li>Studied Sociology </li></ul><ul><li>Working with the FODOK </li></ul>
  3. 3. A father?
  4. 4. What's best for our child? <ul><li>Parents have to make a lot of choices, like: </li></ul><ul><ul><li>Do you use signlanguage? </li></ul></ul><ul><ul><li>Do you want a Cochlear Implant for your child? </li></ul></ul><ul><ul><li>What kind of education do you choose? </li></ul></ul><ul><li>How do you find out what is best for your child? </li></ul><ul><li>What role do professionals play? </li></ul>
  5. 5. <ul><ul><ul><ul><ul><li>Jara </li></ul></ul></ul></ul></ul><ul><li>Born after pregnancy of 26 weeks </li></ul><ul><li>Vulnerable lungs </li></ul><ul><li>Her physical condition influenced our decisions </li></ul>
  6. 6. Deaf, than what? <ul><li>4 months old </li></ul><ul><li>Audiologist: special relationship </li></ul><ul><li>FODOK: booklet </li></ul>
  7. 7. Family support? <ul><li>Second appointment: list with names of family support services </li></ul><ul><li>Not used to ask for help </li></ul><ul><li>So many questions... </li></ul><ul><li>Yes! </li></ul>
  8. 8. Family support! <ul><li>6 to 8 times a year </li></ul><ul><li>to observe Jara </li></ul><ul><li>for a quiet chat </li></ul><ul><li>information about: developing communication, hearing aids, signlanguage, education etc. </li></ul><ul><li>counseled us emotionally </li></ul>
  9. 9. Sign language? <ul><li>Our communication? </li></ul><ul><li>Would we be able to share our feelings? </li></ul><ul><li>Would we be able to learn a new language? </li></ul>
  10. 10. Sign Language! <ul><li>We followed different courses: </li></ul><ul><ul><li>a short course for the two of us at home </li></ul></ul><ul><ul><li>a course for family and friends at home </li></ul></ul><ul><ul><li>a couple of courses with other parents </li></ul></ul><ul><li>Family support offered the right solution </li></ul>
  11. 11. Playgroup? A deaf woman came to play with Jara No
  12. 12. Cochlear Implant? <ul><li>Our family worker played a mayor role: </li></ul><ul><ul><li>she gave us a lot of information </li></ul></ul><ul><ul><li>answered our questions, </li></ul></ul><ul><ul><li>spoke about the different CI teams, </li></ul></ul><ul><ul><li>the risks of surgery, </li></ul></ul><ul><ul><li>clarified information we received from hospital and </li></ul></ul><ul><ul><li>spoke with us about our feelings, doubts and fears. </li></ul></ul><ul><li>Hospital care was poor, which made us hesitate </li></ul><ul><li>We asked the FODOK for some booklets </li></ul><ul><li>We spoke with a lot of parents </li></ul>
  13. 13. <ul><li>Jara was 2,5 years old </li></ul><ul><li>We hoped that the future </li></ul><ul><li>would be easier for her. </li></ul>Cochlear Implant!
  14. 14. What education? <ul><li>Family Support informed us about the different schools. </li></ul><ul><ul><li>special education (school for the deaf) </li></ul></ul><ul><ul><li>regular education </li></ul></ul><ul><ul><li>bilingual education in the neighbourhood </li></ul></ul><ul><li>Together we visited that school, and decided to go there. </li></ul>
  15. 15. Preschool? <ul><li>over three years old </li></ul><ul><li>not enough knowledge to work with deaf children </li></ul><ul><li>together with Ruth </li></ul>
  16. 16. Primary school <ul><li>A lot of attention to Jara's development </li></ul><ul><li>Good contact with all the different professionals: speechtherapist, cesartherapist, audiologist, gymteacher, signlanguage teacher, etc. </li></ul><ul><li>Focus on social skills and deaf identity </li></ul>
  17. 17. Primary school <ul><li>Focus on the parents. </li></ul><ul><li>We are well informed: class visits, notebook, etc. </li></ul><ul><li>We discuss issues we have with Jara and together we look for a working solution. </li></ul><ul><li>Working relationship? Yes, due to frankness and acceptance. </li></ul>
  18. 18. End Child Support End of Child support More questions!
  19. 19. Again, sign language or not? <ul><li>Different opinions about using sign language. </li></ul><ul><li>Parents now have to gather relevant data themselves. </li></ul><ul><li>Important focus on the complete child! Not only on what he/she should learn with an implant. </li></ul>
  20. 20. Regular and special education <ul><li>4 days special education, 1 day regular school </li></ul><ul><li>Participate in the hearing world </li></ul><ul><li>Parents arrange this themselves </li></ul><ul><li>Schools are willing to participate </li></ul>
  21. 21. What's best for our child? <ul><li>Parents are constantly looking for answers to their questions. </li></ul><ul><li>It's important that parents are well informed so that they can make the right decisions for their child. </li></ul>
  22. 22. A working relationship? <ul><li>Professionals should put their knowledge and skills at the service of deaf children and their parents. </li></ul><ul><li>Ideally every parent should have a professional sparring partner. </li></ul><ul><li>Professionals and parent organizations should work closely together. </li></ul>
  23. 23. Thank you very much for your attention!