Caring for Children with Disabilities in Ohio: The Impact on Families part 2 of 2 — Transcript

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1. 0:00this stamina especially like the zoo i'd
2. 0:02love to take my kids to the zoo
3. 0:03i can't quite get up to the energy
4. 0:07like um tried it like two years ago
5. 0:10great for one disaster for the other we
6. 0:12ended up leaving
7. 0:14but um yeah it's it's an
8. 0:18it takes a lot it does and it is
9. 0:21isolating
10. 0:22it's been very isolating because it gets
11. 0:24hard
12. 0:25hard to go hard to do um
13. 0:29i can't tell you how many times for so
14. 0:31long i i couldn't sit through a movie i
15. 0:33couldn't sit through
16. 0:34a conversation because like oh gee
17. 0:36where'd he go what you know
18. 0:38what was that noise there's banging
19. 0:40gotta go find out what the banging's
20. 0:41about
21. 0:41so it's been very challenging
22. 0:45yeah it was really hard on my son who's
23. 0:47normal
24. 0:48when mallory got sick her behavior you
25. 0:51know how she questioned people was
26. 0:52really odd hard to
27. 0:53put up with and i think he really did
28. 0:56not he had one best friend
29. 0:58that um kind of knew what went on in our
30. 1:00home that he would like come over when
31. 1:02things weren't too crazy
32. 1:04but um other than that he did not have
33. 1:06friends in our house
34. 1:08and you know he's a little better about
35. 1:11that now
36. 1:12but i don't know that he would bring
37. 1:13them around her i mean she's certainly
38. 1:15not welcome to stop by his apartment
39. 1:17whenever she's never seen it and
40. 1:19and that but he does i mean i know he
41. 1:21feels bad about that and
42. 1:23up until she lost her phone privileges
43. 1:24he would still call her
44. 1:26every night before bedtime and tell her
45. 1:27good night even though she was
46. 1:29really annoying and yelling at him and
47. 1:31that he you know he doesn't blame her
48. 1:33for that or anything
49. 1:34but he doesn't need to not bring friends
50. 1:37home at all you know so i think
51. 1:41i think it was really hard for him and
52. 1:43then doing things as a family and that
53. 1:44we all
54. 1:45you know for my husband and i were um
55. 1:48we spend our time we're not with mallory
56. 1:51we're worried about her you know when
57. 1:52you're when she's happy you're happy
58. 1:53when she's miserable you're miserable
59. 1:55you don't sleep most the time you worry
60. 1:57no matter what's going on
61. 1:58and um you know so for us it it wasn't a
62. 2:01big deal to not go on family vacations
63. 2:04and not do all the family gatherings and
64. 2:07go out with friends and that but
65. 2:09but it's kind of hard to watch it was
66. 2:11kind of hard to watch my son not be able
67. 2:12to
68. 2:13have friends over
69. 2:17i was going to say pretty much the same
70. 2:19as i have two my two older children
71. 2:22they would have friends over but it was
72. 2:24you know please
73. 2:25keep them upstairs or plea you know like
74. 2:27i mean
75. 2:28and not in the mean way because i love
76. 2:30them and i will say that i think my
77. 2:32oldest two children are more
78. 2:33compassionate
79. 2:35than most children of their their um
80. 2:38years and have a lot of loving and yeah
81. 2:41just
82. 2:42it's they've opened up a whole new world
83. 2:43maybe more human as you would say
84. 2:46but then there's still that part of them
85. 2:48when they're you know once
86. 2:50is 20 and one is 18 there's still that
87. 2:52part of them like especially a little
88. 2:53bit a few years ago just
89. 2:54just keep them you know just just don't
90. 2:57tamper it you know they wouldn't have
91. 2:59their friends over without me there
92. 3:02to you know and then you always have
93. 3:03that third year out to hear
94. 3:05you know is everything going smoothly
95. 3:07has he gone down and is he starting to
96. 3:09like
97. 3:10embarrass them quite honestly and and so
98. 3:13you're always kind of
99. 3:15on guard to make sure that things can go
100. 3:17smoothly for these other guys as well as
101. 3:20for this guy without
102. 3:21and you know a lot of times we've been
103. 3:23invited as families to go places with
104. 3:25other people and
105. 3:26sometimes you agree and sometimes you
106. 3:28when they were younger we would drive
107. 3:30two cars
108. 3:31so my husband and i would give the
109. 3:32signal so the one of us could take the
110. 3:34other two
111. 3:35take the other guy and get out of dodge
112. 3:37while the other two stay
113. 3:38to keep the typical normal socialization
114. 3:42for the other half of the family
115. 3:44and my youngest son he has adhd which i
116. 3:47mean
117. 3:47really 88 and he's a great kid
118. 3:51he really has it
119. 3:55and then also going to what we've been
120. 3:57through
121. 3:58um my children are of age to have
122. 4:00families
123. 4:01and um you know when they're struggling
124. 4:03with mom i don't want to have any kids
125. 4:05because my daughter's disease is a
126. 4:07genetic
127. 4:07disease and there's a 50 chance they
128. 4:10could have a child like katie
129. 4:12and you know they've grown up with it
130. 4:14and they've appreciated it
131. 4:16and they and they understand the whole
132. 4:18dynamism but they're like mom i don't
133. 4:19want to have
134. 4:20i don't want to go through what you go
135. 4:22through because it bothers me because
136. 4:28i've always tried to be that strong
137. 4:30person
138. 4:32to show my kids that yeah you can do
139. 4:34anything you should have to do
140. 4:35but and i i you know well i'm not just
141. 4:38now
142. 4:39or watching my kids drive and have kids
143. 4:42too
144. 4:42you know and i'm not being selfish but
145. 4:45in a way i guess i am
146. 4:47you know because you know i don't know
147. 4:50it's
148. 4:50so hard children with disabilities are
149. 4:53much more likely to use physical therapy
150. 4:55occupational therapy and speech therapy
151. 4:58services
152. 5:00coordinating and engaging in these
153. 5:01services requires additional time and
154. 5:03effort
155. 5:04on the part of their families they say
156. 5:06children with autism need to have
157. 5:08their intervention service as soon as
158. 5:10possible however i've been on a waiting
159. 5:12list for a year
160. 5:13and i can't get help i'm one of those
161. 5:15that you know
162. 5:17can't get it because i'm not poor enough
163. 5:19i can't get it because i
164. 5:21you know i can't afford it so i'm that
165. 5:23in between person that cannot pay for
166. 5:25all these services that need help
167. 5:27and that is all i ask as far as
168. 5:29medically
169. 5:30is to help them step in with medical you
170. 5:33know
171. 5:33um bills and so forth she takes
172. 5:37you know a lot of times she's got nine
173. 5:39specialists and six therapists
174. 5:42and so balancing her schedule
175. 5:45which is really a full-time job for
176. 5:47myself
177. 5:49and still having normal lives for the
178. 5:51other kids has really been
179. 5:53the struggle that we find
180. 5:57and like i said i just don't work so i
181. 6:00mean
182. 6:01try to throw that into the mix now you
183. 6:04can get
184. 6:04diagnostic help you go get your child
185. 6:06diagnose diagnosed
186. 6:08okay they can't help you with autism but
187. 6:10then they can help you with epilepsy
188. 6:12and everything else they will not help
189. 6:14you with autism so therefore i'm stuck
190. 6:17back at the beginning
191. 6:18trying to look for more help to go
192. 6:20through so i could take him somewhere to
193. 6:22get speech occupational
194. 6:23and all that stuff but he doesn't have
195. 6:25it except at school and here school is
196. 6:27saying we can only do
197. 6:2815 minutes we can only do 30 minutes of
198. 6:31ot
199. 6:32in speech yeah we can go ahead and do 90
200. 6:34minutes we'll do that for you because
201. 6:35obviously he's not speaking so therefore
202. 6:39we can do speech but he needs more on
203. 6:42the at
204. 6:43home and if you're that middle person
205. 6:46you cannot get help and if you are
206. 6:49somebody who doesn't work and you do
207. 6:52stand with your children a lot and so
208. 6:54forth and
209. 6:56the income thing is what's really really
210. 6:58hard
211. 6:59there's no other family close by and
212. 7:01really nobody who can
213. 7:02get involved because you know it's a
214. 7:04system that you have to learn so i've
215. 7:06sort of
216. 7:08devoted my time to making sure she has
217. 7:10what she needs and
218. 7:11you know it's what i want to do but it's
219. 7:13stressful and stressful when you hit a
220. 7:14roadblock and you've got to keep pushing
221. 7:16and fighting
222. 7:18certainly puts some pressure on the
223. 7:19family too but
224. 7:21she needs it she deserves it and she's
225. 7:23had a tough way to go
226. 7:24and i want to make sure that that
227. 7:26doesn't happen again for her
228. 7:28the ohio developmental disabilities
229. 7:29council funded this project
230. 7:31which was a collaborative effort among
231. 7:33anthony gowdy of the james m anderson
232. 7:35center for health systems excellence at
233. 7:37cincinnati children's hospital medical
234. 7:39center
235. 7:40susan haverkamp at the ohio state
236. 7:41university nice hunger
237. 7:43and lauren rambam and barry jamison at
238. 7:46the ohio colleges of medicine
239. 7:47government resource center