today i read: Don't Mourn For Us.




yes, i regret and sometimes grieve that my son is autistic. but i rarely wish for someone other him. a non-autistic kristav would not be MY kristav. i rejoice in each new thing he learns, in each obstacle he overcomes, and in every moment we can actually "meet" in our relationship. i do wish sometimes that it didn't have to be so hard for him, that we didn't have to fight the school system, the state, the bus driver, the teacher, or just the passerby on the street. i do wish people wouldn't feel sorry for me or correct my perceptions of my son (or tey to). but i love this little boy named kristav. he is my son, and i am learning to meet him on his turf. There is truth and joy in one understanding: "The ways we relate are different. Push for the things your
expectations tell you are normal, and you'll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without
preconceptions, and with openness to learning new things, and you'll find a world you could never have imagined. "




i will admit my experience is different than many others. i was just dang relieved to find out i wasn't crazy . and from that point we could now move and find him the help he needed, and the help we needed, to help him function in our world. and we have. he speaks, he dresses himself, he is potty trained. i don't think any parent other than a parent of a differently-abled child can even begin to understand how much those milestones, which were so much easier for my "normal" girls, mean to me and my child. i have learned an appreciation for all my children i never had before kristav was born. each is unique. it is not for us as parents to wish they were different in some way, in any way, but instead to do our best to raise them to be the best they can be. and that responsibility is no different for me with my differntly-abled son, than it is for me with my "normal" children.




"You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who
does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is
obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And
we're here waiting for you. "

he's waaaaaaaaaaaaay hyper today. we're working on getting all the doctors he needs together, but i think it's about time to consider something for him. not sure i want to go with rytalin, but i have to do a bit of research so the doctor doesn't just shove stuff down our throats for him. he finally quieted down when chris came home. but for awhile there he was a pack of elephants all on his own! (a pack of racing elephants judging by the speed of the thudding going on over my head!)

posted by domynoe on 9:00:17 PM | note me

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5.24.2000

every saturday a person comes to help with my son. this person is a respite care worker. respite care workers give parents a break from parenting the differently-abled child. in kristav's case, they help him with his chores and homework, and they play with him and keep him happily occupied for several hours. they become a part of his life, and he does develop attachments.




the problem is, the turn over rate in respite care is horrendous. so the child develops an attachment, and then the person is gone, out of their life. on top of losing the relationship that he's developed with this person, the routine is broken. i worry about my son....are all these dropped relationships going to make it harder for him to trust people? but i keep trying. i do need the break and he does need another male figure in his life to play with him and do things with him (too often the women try to get him to sit and read and stuff and don't just rough house and play, so i usually specifically ask for men).




the most recent one just moved out of state....so this saturday we all get to meet a new "friend".

posted by domynoe on 1:04:19 PM | note me

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kristav's asleep before midnight. will miracles never cease! ;)

posted by domynoe on 1:50:31 AM | note me

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5.23.2000

my son is up for his 3 year review with the school. so i get to fill out all these forms that ask about his behavior, plus have to sign permission for the school to do testing and observation. in a month or two we will all get together and discuss the results and what would be the best for him next year. i want him in a traditional track next year, this year round stuff is rediculous.




sigh

posted by domynoe on 10:20:21 PM | note me

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one small observation today. kristav is a spinner, he likes to spin toys no matter what. i think it may be his calming mechanism. unfortunately it also tends to "separate" him from the world, so we try to minimize how often he does it. it used to be, even when watching tv, if you took his spin toy away he'd tantrum. and this boy REALLY tantrums. we're talking, 3 - 5 hour, scream-at-the-top-of-his-lungs, throw-things-around tantrums. (i always wait for the police to knock on my door with complaints from the neighbors about child abuse, when all we did was take something away or told him no...sigh).




well, this afternoon, he's watching a movie and he starts spinning. i ask for it and he gives it to me. then, instead of a tnatrum, he says, "stop..go away!' a couple of times, then starts watching the movie again.




it's the small victories that make our day sometimes...

posted by domynoe on 8:06:25 PM | note me

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finally some satisfaction..i hope. once again the bus driver on kristav's route home has had a STUDENT tell me my son has been bad and i have to do something with him and so on and so forth. i finally called transportation and the gentleman there was as upset as i was over the situation and will talk to him (the driver). hopefully something will be done to show this driver that he has some responsibility on the bus and that sending a student to tell me what is going on and that i have to fix it is totally inappropriate.




most of these bus drivers have no training in handling differently-abled kids. they are people who have clean dmv's and no records of abusing kids and can drive a bus...that's pretty much it. so i understand that when a child acts out and doesn't respond to verbal correction, these drivers often do not know what to do. so a lot of the problem is on the school distract's lack of training for these drivers. by the same token, just the fact that these kids are transported on their own smaller buses with less passengers should be an indication that these kids do not think, remember, or behave like other children.




or am i the only one who sees it that way?

posted by domynoe on 4:58:16 PM | note me

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please remember, today is the day of the national call-in day to show support for the Family Opportunity Act. this bill would give our differntly abled children better and more access to the health care they need. please help children like my son live healthier and fuller lives. thank you.

posted by domynoe on 4:43:21 PM | note me

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yes, we disappeared for a day or two here. weekends tend to be that way, well, at least sunday and mondays for now. that's when "chwis" is home. it has been a wonderfully quiet couple of days with kristav actually...amazingly so considering he didn't got to church on sunday. but then, that may be why too. he goes with his dad, and dad often isn't with the program. you see, with kids like kristav, EVERY ONE needs to be doing the same things to reinforce them. but while the rest of the world works on making kristav stay with them and/or hold their hand when its time to go somewhere together, dad let's him just race on out to the car. he comes back from time with dad, and it can be tough getting him back with the program at home.




not that we're totally regimented ourselves. heck, i personally hate being "overly" scheduled. but there are things we are trying to teach kristav, and to do that EVERY ONE has to be trying to teach him. it just takes that much longer for things to sink in when even one person doesn't follow through with what we are doing.




this week ought to be interesting. kristav hasn't asked yet but i am sure he will soon. his big sister is gone for a week at science camp. that's a big change in routine, even though he and she tend to interract the least of all of them. (it's that 13 year old thing). we'll see how it goes.

posted by domynoe on 2:53:08 AM | note me

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