The Girl Who Does Not Age

[propita]

If someone doesn't think you could care for a special-needs child, then don't have CHILDREN. Of ANY kind. Because any child, even if you adopt and they are healthy at the time of adoption, CAN become very seriously sick or injured. The risk is always there, and if you're not ready to incur it, then you're not mature enough to be a parent.

However, having been a disabled child has made me never want to have kids of my own, which, has led to several arguments with my girlfriend who does want to have kids. She keeps telling me I'd make a great dad, but having lived through a disability, I simply wouldn't want to wish that life on a kid. And also, I'm afraid, that BECAUSE of my disability, I won't be able to put in the time required to raise a kid. I just don't have the stamina.

I sincerely hope that I don't offend either of you--or anyone else.

Nerys, your advice was among the many reasons Hubby and I did not have kids. I had never felt a "need" to have kids, and by the time Hubby was done with school, I was almost 37 yo, and had worked for 16 yrs in a lab around radiation (both microwave and radiowave--supposedly contained in waveguides), fumes, high magnetic fields (up to 15000 gauss). By that time, we were concerned if all that, no matter that it was not constant exposure, would have an effect on a child.

Randy, your concerns echoed another of the reasons. While my problem was nowhere near as serious as yours, it impacted my life immensely. I was diagnosed as having dysthymia (low-grade chronic depression), which is supposed to be from formation of the brain. I didn't know this until recently, but, looking at my family, suspected that there was a genetic predisposition to depression. And it has been confirmed. I was so unhappy with myself growing up, hating myself, and being a perfect candidate for teenage suicide, that I could not inflict that on a child. And due, evidently, from this problem.

That aside, I watched a full show about this little girl, and Kennedy (a primordial dwarf on another show). I saw a lot of joy in those families despite the problems. I have tried to use my problem to help others I run into. I talk easily with people and it can become fairly apparent if they have the same/similar problem (5% of the population). I don't want them to continue to blame themselves for decades, but to seek help, diagnosis whether a physiological problem exists, and take steps to deal with it.

Sorry, digressing.

Good wishes to you both, particularly you, Randy. I hope you find the stamina if you do decide to have children.

 

[Miss Chicken]

I think that one of the worst things about coping with a child with disabilities is the attitude of society in general.

I have a son with moderate cerebral palsy. I was talking to a friend about some tests that had been done that showed that his fine and gross motor skills were that of a child of 4 years 11 months. Another woman who happened to be present who knew that my son was about to turn 9 said "Why are throwing him a 9th birthday party, you should be throwing him a 5th birthday party".

I had another woman tell me that he was born with cerebral palsy because I wasn't married in the church and therefore God was punishing me (to which I answered "and tell me why God made you such a bitch?")

My son went to a normal school and each year parents complained about him being in their children's class because 'the "retard" boy might hold their child back"

 

[Nerys Ghemor]

Ha! I like your answer to that woman!

Though I would also point out Jesus' response to a VERY similar question about a man born blind...very clearly this woman was severely ignorant.

And how anyone could think your son would "hold the class back"...I can't even get my mind around that one. A) You'd think these people thought congenital disabilities were contagious and B) One does not need to have full use of the muscles, to include even the ability to speak, for one's appropriate placement to be in a mainstream or even gifted class.

I could say a lot of other things about that woman, but I think I'd get myself banned.

BTW--for having children, adoption is always an option for people who believe they carry genetic disorders. Though of course ANY child runs the risk of being injured or becoming ill, so everything I said about assuming FULL responsibility and taking the bad with the good still holds 100%.

 

[Mary Ann]

I think that one of the worst things about coping with a child with disabilities is the attitude of society in general.

I have a son with moderate cerebral palsy. I was talking to a friend about some tests that had been done that showed that his fine and gross motor skills were that of a child of 4 years 11 months. Another woman who happened to be present who knew that my son was about to turn 9 said "Why are throwing him a 9th birthday party, you should be throwing him a 5th birthday party".

I had another woman tell me that he was born with cerebral palsy because I wasn't married in the church and therefore God was punishing me (to which I answered "and tell me why God made you such a bitch?")

My son went to a normal school and each year parents complained about him being in their children's class because 'the "retard" boy might hold their child back"

More like "retarded" parents holding their own children back with their ignorant attitudes. I've not been told this to my face (yet) but that's probably because I have a bit of a reputation as the loudmouth foreigner who knows more big words than they do. Your reply to that ignorant cow was spot-on.

 

[RJDiogenes]

This isn't directed at anyone personally in this thread; it's a general statement. Having a special needs child myself and having spoken with a lot of other parents of special needs kids, I can safely say that one thing that drives parents of special needs kids nuts is people who say "I couldn't do that" or "Wow, you must be a saint/angel/etc". Why? Because it comes across as being patronising, even though it most likely isn't intended to be. I bet that those of you who think you couldn't cope with a special needs child could do just that, because a lot of us thought the same thing until our special needs children came along. You adjust and do the best you can, sometimes with the help of a glass or two of chardonnay. It can be hard, but then my neurotypical kids can drive me as batshit crazy as my autistic son can.

^This. Well said.

Not even a little bit. I find it bizarre that anybody would find it patronizing to be complimented for overcoming a hardship. I admire parents who raise disabled children just as I admire disabled people who thrive despite their handicaps. People who struggle to succeed, especially on somebody else's behalf, are to be admired more than people who have everything handed to them. That's just the way it is. Everyday heroism is overlooked far too much without promoting attitudes like this.

 

[Mary Ann]

This isn't directed at anyone personally in this thread; it's a general statement. Having a special needs child myself and having spoken with a lot of other parents of special needs kids, I can safely say that one thing that drives parents of special needs kids nuts is people who say "I couldn't do that" or "Wow, you must be a saint/angel/etc". Why? Because it comes across as being patronising, even though it most likely isn't intended to be. I bet that those of you who think you couldn't cope with a special needs child could do just that, because a lot of us thought the same thing until our special needs children came along. You adjust and do the best you can, sometimes with the help of a glass or two of chardonnay. It can be hard, but then my neurotypical kids can drive me as batshit crazy as my autistic son can.

^This. Well said.

Not even a little bit. I find it bizarre that anybody would find it patronizing to be complimented for overcoming a hardship. I admire parents who raise disabled children just as I admire disabled people who thrive despite their handicaps. People who struggle to succeed, especially on somebody else's behalf, are to be admired more than people who have everything handed to them. That's just the way it is. Everyday heroism is overlooked far too much without promoting attitudes like this.

I kept my first comment short and sweet, but since you asked...

"I could never do what you do" easily translates into "Thank the gods it's you and not me". It's not unusual to be told these things while struggling with the special needs (SN) child in public, and the speaker says supposedly soothing words but does NOT offer any help and just walks away. Honestly, this is as annoying as people who just stare.

These statements focus on the differences between SN and non-SN kids. They're. Still. Kids. They're not a different species. It's the focus on these differences which prevents SN kids and adults from being accepted as the full members of society which they are. My son is my son; he is NOT his disability. The same goes for the parents. We're not some special breed, either. We're parents who were handed a raw deal and got on with our lives for the good of ourselves and our kids, SN or other. Don't think for one moment that it takes "something special". Some days I hate being the parent of a special needs child; other days I don't even think about it. We all have good days and bad days. I'm not a hero; I'm a mom. Fate handed me some shitty cards and it's up to me to deal with them. What I'm doing is not heroism; it's basic parenting.

And man, oh, man, you find out who your real friends are. And it's not people who say these things; it's the people who accept you child for who and what he/she is. They would never say "I could never do what you do" because they do interact with your child.

To be blunt, if you honestly, truly could never do what I do, then don't have kids. Ever. How does anyone know their non-disabled child won't step in front of a bus and be paralysed or brain damaged? What would they do...abandon the child in hospital? Put her in an institution and pretend she doesn't exist? Kill her? Lock her in the attic with crazy Aunt Bertha?

Can you see what I'm saying? You may not mean anything patronising when you're saying these things, but that's how they can come across at the receiving end. I'm sure I'm a different person to whom I would have been without an SN child, but I started out the same. No heroism, no angelic status, and certainly no saintly status; just a short, overweight 41-year-old who drinks too much coffee and is now an expert at filling out forms and deciphering a severe speech impediment.

/soap box

 

[Deckerd]

To be blunt, if you honestly, truly could never do what I do, then don't have kids. Ever.

Well quite. But to be fair most people don't talk patronising shite to parents of disabled children for any other reason than discomfort. They should just keep their mouths shut but people are only human after all. From my own experience, good parents treat their kids like their kids no matter what level of ability they have. They see them as ordinary children, which of course they are.

 

[Adm_Hawthorne]

Well, this was a can of worms I had no intention in opening. Sorry for the irritation.

Though, for the record, I'm fascinated by what the researchers were talking about. The idea of figuring out a literal fountain of youth is intriguing even to a naive individual such as myself.

 

[Mary Ann]

Well, this was a can of worms I had no intention in opening. Sorry for the irritation.

Though, for the record, I'm fascinated by what the researchers were talking about. The idea of figuring out a literal fountain of youth is intriguing even to a naive individual such as myself.

Nah, it was just me hijacking your thread with my usual cement-brick-on-the-head tact. This topic was recently discussed on a LiveJournal group for special needs parents so the topic was fresh in my mind. It's also a serious pet peeve of mine, as you may have guessed.

The idea of a literal fountain youth is definitely intriguing. Imagine the possible consequences if this genetic anomaly was identified and isolated. That would be its own thread, I reckon.

 

[Adm_Hawthorne]

I probably would have moved there in my next post if this thread hadn't gone the way it did.

However, I'm wondering how she can have the bone structure of a 10 year old but not the physical qualities of a 10 year old? She looks like she's a little over 12 months old.

 

[Finn]

^acculumation of minerals and other particulates she has been exposed to for 16 years. She's still what she eats, etc. Plus stress from moving around, imagine 16 years of crawling on all fours.

 

[farmkid]

However, I'm wondering how she can have the bone structure of a 10 year old but not the physical qualities of a 10 year old? She looks like she's a little over 12 months old.

They might have been referring to her growth plates.

 

[Adm_Hawthorne]

Growth plates make sense to me more than mineral accumulation for some reason.

 

[RandyS]

However, having been a disabled child has made me never want to have kids of my own, which, has led to several arguments with my girlfriend who does want to have kids. She keeps telling me I'd make a great dad, but having lived through a disability, I simply wouldn't want to wish that life on a kid. And also, I'm afraid, that BECAUSE of my disability, I won't be able to put in the time required to raise a kid. I just don't have the stamina.

Randy, your concerns echoed another of the reasons. While my problem was nowhere near as serious as yours, it impacted my life immensely. I was diagnosed as having dysthymia (low-grade chronic depression), which is supposed to be from formation of the brain. I didn't know this until recently, but, looking at my family, suspected that there was a genetic predisposition to depression. And it has been confirmed. I was so unhappy with myself growing up, hating myself, and being a perfect candidate for teenage suicide, that I could not inflict that on a child. And due, evidently, from this problem.

Good wishes to you both, particularly you, Randy. I hope you find the stamina if you do decide to have children.

Thanks for the good wishes, and they are returned. And sorry to hear that you hated yourself growing up. That's one problem I never had. My mom and my grandparents told me that I was just as good as anybody else, and I should never let anybody tell me different, which many, including my dad, tried. In fact, they often told me that I was better than most people because my cerebral palsy made me special. And I've always felt that way. Special that is. Even when living with it gave me a hard time. Which of course, it still does. But hey, I'll survive. I always have.

 

[Miss Chicken]

I once asked my son - If you could have the choice of not having cerebral palsy would you take it?" My son said know because "that is who he is". He also said that having cerebral palsy meant certain pressures weren't put on him i.e. he wasn't expected to be good at sport etc. Most of his friends have disabilities and he is comfortable with them as friends. He also works in assistant employment where most of the workers have disabilities. He likes his job which he would have to leave if he wasn't disabled.

A doctor once said to him about the difficulties of my son being disabled. My son said "at least I can never be made to go and fight in a war".

 

[RJDiogenes]

^^ Now there's a good attitude.

Can you see what I'm saying? You may not mean anything patronising when you're saying these things, but that's how they can come across at the receiving end. I'm sure I'm a different person to whom I would have been without an SN child, but I started out the same. No heroism, no angelic status, and certainly no saintly status; just a short, overweight 41-year-old who drinks too much coffee and is now an expert at filling out forms and deciphering a severe speech impediment.

It's unfortunate that you feel that way. You should at least learn how to take a compliment.

 

[Mary Ann]

^^ Now there's a good attitude.

Can you see what I'm saying? You may not mean anything patronising when you're saying these things, but that's how they can come across at the receiving end. I'm sure I'm a different person to whom I would have been without an SN child, but I started out the same. No heroism, no angelic status, and certainly no saintly status; just a short, overweight 41-year-old who drinks too much coffee and is now an expert at filling out forms and deciphering a severe speech impediment.

It's unfortunate that you feel that way. You should at least learn how to take a compliment.

Well, I reckon I'm simply doing my responsibility as a parent, and I believe that doesn't require complimenting. Just my take on things.

 

[RJDiogenes]

I'm sorry if I came off as harsh. I just think that excellence should be acknowledged and admired, especially in a world that so often worships banality and low standards.

 

[trampledamage]

I'm sorry if I came off as harsh. I just think that excellence should be acknowledged and admired, especially in a world that so often worships banality and low standards.

Now that she's explained it more fully, I can see macloudt's point - to say "I could never do what you do" is actually pretty dismissive, even if said with the best of intentions.

Parenting of a child is something I deliberately never judge people on and rarely directly comment on, because I know I must look like the mother from hell sometimes

 

[archeryguy1701]

That is just insane... the combination of things she has going on is very surprising and intriguing. Her mind and body have seemingly stopped all progression, and she can recover from almost anything. On one hand, I didn't really like the last quote from what I'm assuming is the dad that sort of paints her as a science project, but on the other hand, I can't help but wonder what's going on inside of her. Very, very interesting.