*** LOG OPENED: Wed Aug 4 18:00:43 1999 --- Participants: disabled ChanServ Lonewolf Mooooooo --- *** huey`ette has joined #Disabled-RT *** Kark has joined #disABLED-rt hi Karen andd Huey Hi there *** Angel_27 has joined #Disabled-rt *** zlie- has joined #Disabled-RT hello ok I think we will go ahead and start Tonight's meeting is on raising disabled kids hi *** Woz has joined #disabled-RT We have looked at this subject from the grown up child's point of view. Tonight let's look at it from the parent's point of view. There is nothing quite so devastating as finding out your child has a disability. You might deny this with all your being, all of us want to think our offspring are perfect. Some adults simply cannot handle a disability and either abandon the child or give it up for adoption. Others feel obligated to keep the child and then abuse them, seeing them as a failure on their part-to produce healthy offspring. Other parents accept the child, the hardships to come and love that child with all their hearts. it was hard for my dad before All of this refers to a child born with a disability. What about an acquired disability? Usually the family bond is strong by this time and parents become protective, sometimes too protective. I raised three children with various disabilities. It is not easy to protect without smothering. Please say ok when you are done reading ok ok ok ok k But parents deserve some time to understand the situation wait a sec zlie 1. Case scenerio: You or your spouse has just given birth to your first child. Soon after birth, it is evident that the child has multiple medical problems, cerebral palsy being the biggest. What is your initial reaction? Can you handle the stress, pain, money etc it is going to take to raise this Sometimes it's fated *** In has joined #Disabled-RT as in its God's will? Do any of you have a special needs child I'm the child i don't *** In has left #Disabled-RT It is difficult to looke forward to your new child and hear devastating news right after birth If I'm the only one disabled then it 's not genetic It sounds cruel but some people simply cannot handle it what is your disability zlie it's like they have no rights tolove and be loved *** Ann has joined #disabled-rt polio polio is an acquired disability we will hit that in a moment ok each of you picture yourselves giving birth to a much wanted child and then discovering the child is disabled what is the topic please i just got here? parenting disabled children Karen lucky to have a caring and loving family ok I had needs and still do, my parents never talked about the way they handled it did they handle things in a positive manner? With me they did me too Daniel how did your parents handle it *** WonderW has joined #Disabled-RT for the new comers-here is our question 1. Case scenerio: You or your spouse has just given birth to your first child. Soon after birth, it is evident that the child has multiple medical problems, cerebral palsy being the biggest. What is your initial reaction? Can you handle the stress, pain, money etc it is going to take to raise this My mom did most of the raising, I think dad didn't know what to do, my mom is a take charge kinda person *** Ann has left #disabled-rt mine, both do their roles brb Cerebral Palsy is not genetic *** Ann has joined #disabled-rt I know but there are some disabilities that are yes, just clarifying ok I know Karen and Daniel and Yours were evident at birth I think I would be upset at first and all those thoughts that I can't handle this would surface but then I would brush myself off and go from there That is the thing that is supposed to happen Karen but it doesn't always thinking about my future is a headache Some parents do not want to acknowledge the child's existence that's bad Either give the child up for adoption immediately or finsd a permanent placement I here of terrible things that have happened they should give themselves and the child a chance Well I disagree zlie If they are that callous they will end up harming the child ! depends on the parents ability to handel things There are a lot of people out there that are childless a chance to accept and to love exactly max my dad hated my disability why? I have an online friend that was treated horribly in childhood because of her disability but given time and counsling people can often overcome max some parents dont have finances that is true also some lack skills some just heartless laura expand on that please parenting is the worlds hardest job true yes it is max sometimes the most loving thing they can do is to give the child up my disablity was aquired when i was 30 and for yrs my dad would not talk about.. what is your disability? *** Reader_13 has joined #disabled-rt talk about it that job varies with each child so thare is no blueprint to follow how long it has been huey absolutely most of you know that my daughter is adopting a special needs child she has been by his side since he was 3 days old cool lonewolf there has never been a child shown more love than this one *** WonderW has left #Disabled-RT for someone like me what do u think is best done for the future? so it was very good his young, unmarried mother gave him up 6 yrs zlie the mom need before birth? *** anny1 has joined #disabled-rt don't understand questions from zline or karen how old are you zline? 24 ok lets move on depends on your situation now zie oops zlie I'm scared when it comes to thinking bout my future 2. Case scenerio: Little Johnny is 5 and has always been nervous, clumsy and walks on his toes. He doesn't seem to hear well. Finally your protest lead you to a specialist who tells you little Johnny has cerebral palsy. How do you react? You have scolded him harshly in the past for poor attention and never holding still etc, are you consumed with guilt? Are you angry it wasn't caught sooner? Does your parental guarding instincts immediately come out? the child your daughter adopting, did the mother know before birth that he had troubles no Karen but she was quite anxious to sign the final papers reader *** dot has joined #disabled-RT get educated... learn everything you can... forgive yourself for the past i agree with reader all good points everybody makes mistakes yeap Well this example is out of my life My youngest was diagnosed at age 5 how did you feel? Money is no problem to me but assistance is in the future First reaction was guilt and second was to protect When a mother sees her child in a vulnerable position she wants to guard that child closely but you know i think that is there no matter your chilrens age oh yes very true you learn very fast that u r ur child's best advocate so important to have a balance between protection and encouraging independence yes dot you sound like you have been there thats true anny still here it is anny but it is so difficult to do join #disabled-chat everybody thought the complaints i was having were all in my head.. then they felt very guilty then never believed me. *** Ann has left #disabled-rt yes it must be I'm sorry huey what did you say your disability is but my condition doesn't allow such independence masthenia gravis ah yes but as much as possible zlie zlie does your mom over protect you? hard to say do you feel stifled coz everytime they give reasons It's the best! IC my mother did after I broke my neck... dot could you add some more about being an advocate i would like to know how to let the child be independent yet i always worry that she will get hurt, i guess i'm pretty overprotective max what is zlie's dis polio polio zlie like when u have to deal with dox, when the child is too young to know what is best and schools u learn to write letters and get answers very fast yes my daughter isn't in school yet i see both types of moms,and dads< in my work with mentally disabled I felt like I went to war every school year but i have already put my 2 cents worth in because it isn't accessible parenting disabled child needs a lot of patients and money anny could you tell us a little about the differences? u learn very fast that doctors don't know everything oh how true dot i am a true believer in trusting your instincts sure do dot I had a teacher tell me my son's doctors were wrong that he did not have cp and he was not learning disabled-he was stubborn after all you know more about your child since you are with them most of the time some of the moms who focus on the disability and are very demanding of themselves have a harder time In my case I had to have the doctors write the school especially when they are disabled, you r the one that is with them thru it all 99.9% of the time why so anny when I was in the crippled children's Hospital, I saw parents that did more harm than good by being over aggressive and making enemies of the people they were trying to convince... had problems getting into school before i see kids who have been al but neglected that function intelectually at the same as others but have better skills becouse the have had to learn one way or the other for them selves. that is interesting anny dot what do you think about that thet's true anny ok here is the next question I had to compete with the other 3. Case scenerio: Alice has developed epilepsy, she wants to enter a bicycle race, do you let her? and what about rolller blading? football? driving? Her friendss are teasing her constantly about her blemishes from the seizure meds and she is starting to withdraw - what do you do? see how fwr she can do it they are the kids that don't make the sandwich perfectly but you bet they can get bread meat and cheese out of othe fridge and to their mouth on their own how far Let me add -her doctor has forbidden all these activities my daughter has spina bifida and hydrocephalus but we all treat her the same as her siblings. I might be overprotective in what i allow her to do physically but she has a lot of encouragement from everyone. that's great i think that no matter whet the child's disability is they all need encouragement whether they are disabled or not there comes a time when the person must learn his/her own limitations by experiencing the results of the actions true dot *** huey`ette has left #Disabled-RT ok the example is also from my life but it was my other son *** Driveshaf has joined #disabled-RT as far as the girl with the epilepsy, she could get involved in other ways it is very hard to deny activites that a child wants to do to fit in i say let the girl with epilepsy participate with a helmet I experienced it did you participate in dangerous activities hard to Fit in oh IC all she needs is one reaalllyyy good friend not too dangerous in my son's case-if he had a seizure while riding a bike he just kept on pedaling-which was very dangerous] I was thrown out once not a fairweather one by my little friends can you see yourself saying NO? *** Driveshaf has left #disabled-RT max yes but hardly think the law is specific on driving with epilepicy did he learn from his mistake, Lonewolf? how about encouraging the child to find other activities that aren't as dangerous to her health yes and it varies state to state no seizure 6 mo. before to get license renwed ok for girls usually but before computers were popular-rough and tumble sports foir the guys was the in thing in ? computer screen lights can trigger seizures so even that can be dangerous oh my what do they call it now besides in latest? uh I'm not up on the latest lingo Rad? oh ok get the pic zline? IC Radical? phew showed my age that time hehe I think lol with seizures there is a clear difference in choosing something that can be hurtful to only self and driving which could hurt another true anny 4. Case scenerio: Leonard is mildly retarded. He does well with maximum assistance. He is now 24 and wants to marry a retarded girl. How do you handle this? there are other hobbies that would interest both boys and girls having to choose is the hardest! dot-hard to tell a 16 yr old boy he can't drive his date that why God made mothers - to provide chauffeurs hehe *** ROCK- has joined #Disabled-RT brb does the girl do well without assistance? now wait a sec how many 16 yr old boys do you know that want mom along on a date? in texas it is his leagal right and not even a guardian appointed by the courts can stop if he is determined just drive them to a movie really annie? maybe my kids were just hard headed hehe like ma remember the show that was on about the downs syndrome boy it is true, the deal is that most mildly mr persons don't realize this right well that's true also I believe that issue came up on that show and what if these two people give birth to a child they cannot care for max we know a mr couple that is married thay do good together do they work etc? someon else handels the money reader ok thay work together What about the so called normal couple that cannot care for their children true also i know several mr couples, they have different issues to deal with but usualy do ok with some outside support but think about it-is it fair for an aging parent to have to deal with supervising this couple and any children they have? always conservatorship or similar that is bringing in an outsider max? at some point it is correct and proper for seniors to have help like a lawyer or something? I know a woman (no disability) that was raised by her grandparents--who can say they will be bad parents just because they need some outside help... oh well I would think that would be a difficult issue we quit having children at some age thare is a reason for that someone would need to help them individually anyway, children s a much larger issue, they have birthcontrol that can be given in 1x mo shot not sure how I would as a parent, handle that but can you force the to take it anny? you will learn just as you always have this gets into a person's personal rights... not me max-I meant if I had to deal with it yes it does reader aren't there some kind of parenting classes that they could take, to make sure that they understand what having a child is really all about do the mentally retarded have less rights? judi you will do the right thing! certainly not lw, but there are ways to be persuasive max I don't have a mr child or grandchild ok anny generalization they actually have more rights, legally how so anny? ok max i recall there was a big thing about having mr ppl sterilized because of that very argument mr persons act of 1977 outlines special rights in mr facilities yes dot I guess we never know how we would handle something exactly until that issue becomes our own *** Reader_13 has left irc (Quit: Always searching for a special woman!) true last question and think hard on this one 5. As a parent, what would be the hardest thing to accept of a disabled child. zlie? max? lack of love from the child god answer sorry, back to previous question for a bit, i think anyone with a disability would have to think hard about being able to cope with a child, God knows it's a job and a half without having a disability That they might not be able to give you everything like the others good that's right dot but sometimes the mr cannot grasp the concept ROCK? yes yes that the dreams of what a child will accomplish will not be met dot , I think it depends on disability because just because Im in wheelchair doesnt mean I couldnt be a mom.....in my opinion Karen being mentally and phisically able no bev, it would just be harder yes Yes O really can't angel what would your answer be Karen I can;t thats true dot Who? I was asking Karen what her answer would be dot what about you bev? I not sure what would be the hardest thing I just think parents want more for there children then what they had daniel? im not sure sacrifices would mean a lot to the disabled and that it must be hard to accept that they cant get or give that to a disabled child my mom dies everything she can to protect me but it was important for her to make sure I leasrned independence I think all of your answers are excellent ones did If I can leave you all with 1 thought my mom too angel yes? When you ask my mom why haven't you gone on vacation and her answer would be Karen needs me I think parents dont get enough credit a mother that gives up a disabled child she cannot physically or emotionally or financially care for-is showing her love by doing so ppl see their children as extentions of themselves, it is very difficult how intuitive anny every1 hopes for a healthy baby yes new ones have to be born a grieving begins Guess its a test from God yes but i think we all adjust, because we really don't have a choice i once heard a story I don't think God tests us what is it like to have a disabled child go on dot it is like planbning a trip to Italy you get all the maps you learn the language u can't wait to go see the leaning tower of Pica etc u get the picture u get on the plane and then u land in Denmark u r totally unprepared lol but u go out but always lost and buy new clothes what was the parting thought learn the language find the landmarks same with a disabled child true dot ppl are very flexible max-not to judge a mother that gives up a disabled child cool yes lw it is a lifelong process adjusting to a disability for parent and child however, i would dare judge a person that would allow that child to die But as a disabled child you may think you were not good enough *** Just_me has joined #disabled-rt well I do have a problem with one thing.... its sad becuase she was given that choice I raised three kids with disabilities, epilepsy (brain cyst that was removed), cerebralpalsy and juvenil rheumatoid arthritis women that say they are going to have an abortion because they find out something may be wrong with the child from experience I can say-you cope-you make mistakes and you learn and you love I agree kark if my mom had done that I would not be here u have had ur life full but i bet u r richer for it, lonewolf and I have a good life bev I think that is sick i was given the choice to let my daughter die or live so was my mom dot yes dot I don't regret a minute i thought that was the worst thing they could have said to me while my daughter lay in the next room abortion is a hot issue but my personal beliefs are that it is murder they told my mom to take me home and let me die i was talking about post birth bev sick about the abortion? i believe that too, lonewolf abortion is totally wrong yes-I think it is horrible but again that is my opinion he child is innocent every life begins for a reason ok, I was just confused of what we were referencing