Created by and for people with physical disabilities.

Parenting a Disabled Child.

Aug 04, 1999

This is an archival transcript of one of our past meetings. We don't have scheduled topical meetings anymore, but we're not opposed to the idea of bringing them back if someone is willing to commit to hosting them on a "long term" basis.

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