Living with Achondroplasia: School Accommodations & Self-Advocacy — Transcript

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1. 0:04By the time Nora was in third grade, she
2. 0:05was going up to her ESC specialist at
3. 0:08school. This is the person who leads her
4. 0:10team for her individual education plan.
5. 0:13And she was putting in her requests for
6. 0:15her teacher and who she wanted, you
7. 0:18know, if she could have her friend in
8. 0:19her class. She would get very creative
9. 0:22in whatever she wanted. But what
10. 0:25impressed us the most was that she felt
11. 0:28comfortable enough to go up to an adult,
12. 0:33a person who she knows is in a position
13. 0:35of of, you know, authority and, you
14. 0:38know, advocate for herself, make her
15. 0:40demands essentially.
16. 0:41>> So the combinations I have in class, I
17. 0:44have a um a back support cushion and I
18. 0:50have a stool. And
19. 0:53>> where do you have that in the classroom?
20. 0:55>> In my desk.
21. 0:57>> So your desk?
22. 0:58>> Yeah. And my desk has those like for PE
23. 1:01I have like my own jump rope and smaller
24. 1:04heels of boobs.
25. 1:07>> One of the things that was important to
26. 1:09me during these walkthroughs was that
27. 1:10she was present from the first
28. 1:13kindergarten, first grade all the way
29. 1:15up. It was important that she was there.
30. 1:18Why? Because she had to feel
31. 1:19comfortable. And we also needed to make
32. 1:22sure that everything was measured
33. 1:24specifically to Nora, especially when
34. 1:27she was younger cuz she was really
35. 1:30small. And then I think that sort of led
36. 1:34Nora because she was a part of that
37. 1:36process that made her comfortable to
38. 1:39start advocating for herself.
39. 1:43We just always have that conversation
40. 1:45with her like you have to advocate for
41. 1:47yourself. I'm not there with you every
42. 1:50day at school. So if something hurts or
43. 1:53if something doesn't fit or if it
44. 1:55doesn't feel right or if you're not
45. 1:56comfortable, you know, you have to go to
46. 1:58somebody and say something. And it's not
47. 2:01easy with the medical issues and then
48. 2:04keeping up with school and then just
49. 2:06trying to be an average child. You know,
50. 2:08it's a lot. And everything that she
51. 2:10does, it's a little bit more exertion on
52. 2:12her. It's a little bit harder. I'm just
53. 2:15so proud of her cuz I know she's come a
54. 2:18long way.