View Single Post
Old 03-21-2006, 10:29 PM   #1 (permalink)
Sage
hoarding all the big girl panties since 2005
 
Sage's Avatar
 
Location: North side
"Devlopmentally Disabled" Children

(DISCLAIMER - I hereby state that, in making this post, I don't mean to offend anyone or make anyone feel like I don't respect their personal point of view. I am stating MY OPNION on this matter, and I fully respect everyone else's right to have an opnion different from mine)

As some of you may or may not know, I recently started a job as a Home Healthcare Aide. I got this job through my chiropractor, who has a daughter who is "Special Needs." She has a rare condition that, among other things, caused parts of her brain to not develop. She literally has empty places in her skull where brain should be. Along with the brain problems, one of her eyes is smaller and weaker than the other, and her right side is generally weaker than her left. She just turned two. Her parents are doing a very intense "thearapy" on her through The Institutes for the Advancement of Human Potential (http://www.iahp.org/), and have been for the past eight months or so. Her mother, S, has her entire life and existence wrapped up in doing this program with A, the little girl. Literally, S spends every single waking moment thinking about A, talking about A, being with A, doing the program with A, etc etc etc. Mr. S is also involved in the rehab, but he works as a teacher and as a chiropractor, so during the weekdays there's a helper who comes six hours a day to work with S.

Having come up against this situation, where there's someone who is putting her entire life aside for the sake of her child, I have done a lot of thinking. I do not believe in trying to turn a child that is not "normal" nor will ever be "normal" into something that is as close to "normal" as their physical bodies will allow. And I definitely don't believe the "To me, my child is 'normal' because s/he is the only child I have" line. I'm sorry, you know what is normal for a human being- having gaps where brain should be is not normal. Having seizures up to fifteen times a day is not normal. Being two years old and not able to crawl is not normal. Therefore, I find the trying to make the child "better" to be a selfish action, because it is trying to take something that is broken and cannot be fixed and make it into something as close to yourself as possible. Trying to "fix" your child at the sake of your own life is selfish, not selfless- you're neglecting the wonders of your own life, a life that was given a perfect body to be lived in, for the sake of your child, who will never ever be normal. I feel that throwing one's life away for the sake of their broken child is foolish, as you should live your life first and foremost in order to care for your child the best you can. Perhaps they'll never get past the drooling stage if you focus on yourself instead of them, but you will be a whole and complete person, making the most of your life. S mothers A constantly, calling out to her when she's even in the other room, and is ALWAYS with her, at the sake of her husband, her own personal life, her own mental well-being, and her own self. She sees it as a noble endeavor, I see it as useless.

This mindset comes from my belief in how we are before we have bodies. I do not believe that every body is special- the spirit inside the body is special, but the body is just the thing that transports the spirit around. If I was going to be born with a broken body, I would rather hit the reboot button and try again than live my life trapped in an existence that I could not live to the fullest. If Martel and I were to get pregnant and found out our child was "devlopmentally disabled," we would have an abortion and try again. I would not feel remorseful for "what might have been" because I would know that the body was just the vessel, and the spirit (what mattered) was still living in the "ethers" and could be given another body, a perfect body, when the time was right.

I would also like to add, for the record, that I am NOT IN ANY WAY saying I think we should euthanize everyone with a developmental disability.

Perhaps this makes sense to you, perhaps not. Maybe you're angry at me for even thinking such things, maybe you agree. I've been thinking about this a lot, and want to share my perspective with you in the hopes of gathering more perspectives, perhaps even from people who have friends and family members who were given little hope of devloping normally and who exceeded expectations. I want to expand my point of view, and talk about this, because it bugs me to see someone I am friends with take on what is, to me, a wholly fruitless endeavor day after day after day.
__________________
Sage knows our mythic history, King Arthur's and Sir Caradoc's
She answers hard acrostics, has a pretty taste for paradox
She quotes in elegiacs all the crimes of Heliogabalus
In conics she can floor peculiarities parabolous
-C'hi

Last edited by Sage; 03-21-2006 at 11:04 PM..
Sage is offline  
 

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 61 62 63 64 65 66 67 68 69 70 71 72 73 74 75 76 77 78 79 80 81 82 83 84 85 86 87 88 89 90 91 92 93 94 95 96 97 98 99 100 101 102 103 104 105 106 107 108 109 110 111 112 113 114 115 116 117 118 119 120 121 122 123 124 125 126 127 128 129 130 131 132 133 134 135 136 137 138 139 140 141 142 143 144 145 146 147 148 149 150 151 152 153 154 155 156 157 158 159 160 161 162 163 164 165 166 167 168 169 170 171 172 173 174 175 176 177 178 179 180 181 182 183 184 185 186 187 188 189 190 191 192 193 194 195 196 197 198 199 200 201 202 203 204 205 206 207 208 209 210 211 212 213 214 215 216 217 218 219 220 221 222 223 224 225 226 227 228 229 230 231 232 233 234 235 236 237 238 239 240 241 242 243 244 245 246 247 248 249 250 251 252 253 254 255 256 257 258 259 260 261 262 263 264 265 266 267 268 269 270 271 272 273 274 275 276 277 278 279 280 281 282 283 284 285 286 287 288 289 290 291 292 293 294 295 296 297 298 299 300 301 302 303 304 305 306 307 308 309 310 311 312 313 314 315 316 317 318 319 320 321 322 323 324 325 326 327 328 329 330 331 332 333 334 335 336 337 338 339 340 341 342 343 344 345 346 347 348 349 350 351 352 353 354 355 356 357 358 359 360