Families Not Seeing Eye to Eye All Thoughts Welcome

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In a message dated 3/25/04 5:13:14 PM Pacific Standard Time, Mito writes:

In addition I have been mildly chastised about discussing the disease in front of Abigail

I loved Jean's response, but wanted to add my 2 cents about educating the child.

It is VITAL for the child to understand their disorder. It isn't going to magically go away, and they are therefore going to have to deal with it their whole life. How without information? My child is 16. I taught her to say "mitochondrial myopathy" when she was 5. People would stop me in grocery stores etc and ask rude questions like "what's wrong with her?" or "is she retarded?" "can she speak?" and on and on. I wanted to slap them. Instead I taught my daughter manners by smiling sweetly and thanking them for their concern, then correcting them by informing them there is nothing at all "wrong" with my beautiful daughter, she was born with a metabolic muscle disorder that causes otherwise nice people in grocery stores to ask rude questions as if she weren't there. I then invited them to watch the MDA telethon in September and learn about all the beautifull intelligent young people like my daughter who their donations might help to walk and answer these questions for themselves one day.

Meanwhile I felt it was important to educate my child about her condition because such knowlege may well save her life one day! What if you are in an accident and your child is maybe less injured and you aren't able to speak to tell medics what is and isn't normal for her or safe treatment for her? Or she is injured at school or while out with a friend -- you trust her teachers or friends that much in those crucial moments before you meet them at the nearest hospital? I don't. It's hard enough getting professionals to listen to me about my daughter and I AM a medical professional as well, well-meaning friends or teachers just don't have the knowlege you do about your child. Your child should be equally well armed with as much information as they are able to carry in their heads and comunicate to people. Don't rely on medic alert bracelets either. You can't be with them to advocate with them every minute, and they will eventually grow up and be responsible for themselves. You can't plan to thrust the whole nut on them on their 18th birthday.

Too, I have to speak to what it is like growing up different and NOT knowing why. I have Asperger's, a form of autism, only 49 years ago there was no such thing. It's only been discovered maybe 20 odd years ago (I recieved a tentative diag at age 27 when it was only a concept) and wasn't acknowleged by the medical community as a genuine diagnosis until the last decade. I was always just "different". Other kids teased me, beat me up, abused me. My own sister abused me and I wanted only to die from the age of about 7 onward. My parents worried, I'd hear them at night asking each other in frantic whispers, "what are we going to do about Kathy?" like I was stupid or something and would never be able to take care of myself, a burden they had to do something about. They didn't trust me to talk to ME about my problems or their concerns, to everyone I was just this wierd alien THING they had to deal with and "do something about". I would have given ANYTHING to have a name for the thing that was "wrong" with me, that made me different, to know there were other kids just exactly like me somewhere, that I wasn't defective but that like all the others that are like me I had special gifts that I would be appreciated for one day. Only in the last 8 years of my life am I finally NOT suicidal and know I'm not defective, I am like thousands of other gifted people just like me, swans raised by clumsy ducks. 40 years of my life was wasted by NOT KNOWING. I'd give a lot to have them back.

My daughter resents being different, but at least she knows what it is and how it is treated and what is a reasonable expectation and what is not. She has rods in her back. It is not for instance a reasonable expectation for her to bend her spine and touch her toes: it's not a limitation I am imposing it is defined by the laws of physics. Other limitations are self-defined: she knows how far she can walk before she needs the chair. Others are imposed by ignorant people, as when people expect less of her in school "because she's crippled". She's not crippled, they are. She is an honors student in 10th grade getting A's and B's, and she does this because I do NOT expect less of her. So it's important to define your expectations reasonably, but DO define them. Without definitions your child has nothing to reach for.

kj

mom to De-Arbra age 16

complex III (+2 others I forget cos they were less important to the doc)