Fundies and special-needs kids

[emmiedahl]

Do they have a Down's diagnosis and karyotype? I have relatives who have a daughter with 1p36 deletion that is identical to this. I have read a lot about it out of concern for them. They have distinctive facial fixtures kinda similar to Down Syndrome.

[Austin]

I was thinking about this. I wonder if the family that adopted Hana and her deaf brother bothered to get him some help. They did beat him when he didn't come when wanted.

I don't think that they allowed for his disability.

The arrest affidavit said that Carrie knew sign language, but when the boy was evaluated, he was found to be significantly behind in those language skills. So I don't know if she just didn't know it very well or maybe more likely, couldn't be bothered to communicate with him.

[persuaded]

This sounds like more than Down's Syndrome. I don't really understand the concept of simply giving up where a child is concerned.

She could just have Down syndrome.... the progress (or lack of progress, as the case may be) of kids with DS is hugely dependent on the environment they are in. The first three years is particularly important. I don't know if you've ever seen photos or videos of kids with DS who have been institutionalized in orphanages, for example. Many of them never learn to even sit up by themselves, most of them will never walk. (and Emmie, here I'm not equating your parent's choices with your sister to life in an orphanage. It sounds as though your parents are very loving, even though they may not have chosen to expose her therapies, etc.)

I have two children with DS. Jake spent the first few years of his life in a hospital and then went on to a series of deplorable foster homes. Now, at age 22 he is nonverbal, diapered and has great difficulty walking for more than short distances. My daughter on the other hand, is bright and sociable, very physically fit, plays the piano, dances ballet and jazz, knits and is able to responsibly and independently complete many tasks such as changing a baby's diapers, sweep floors. She even cooked our dinner tonight! (smoked sausage and penne pasta, I can't wait!) I'm sure her wonderful progress is at least partially due to the fact that she received physical, occupational, and speech therapy starting at the age of 3 months. I wish families truly understood how much early intervention will affects their child's entire life!

[persuaded]

This is concerning to me, and you seem to be concerned also. Public schools are required to provide education to all kids, and some of them are really good at it. Would your parents be open to enrolling her so that she could have access to free therapy and programs?

I don't know anything about the walking situation, but it doesn't sound good. If the braces are causing your sister pain maybe someone could suggest alternatives if she was in school?

Actually, they could still keep her at home, continue homeschooling her and avail therapy services through the public school system. The specifics vary from state to state, but they cannot deny therapy simply because your family chooses to homeschool. Would your family be open to having her evaluated with the possibility of getting some help?

[Guest Anonymous]

Actually, they could still keep her at home, continue homeschooling her and avail therapy services through the public school system. The specifics vary from state to state, but they cannot deny therapy simply because your family chooses to homeschool. Would your family be open to having her evaluated with the possibility of getting some help?

That's cool - not having any kids myself, I had no idea. Judging by everything AD has said about her family situation (her mother's depression and subsequent checking out of maintaining the household and child raising) I still think it might really benefit her sister to get out of the house and have outside attention for eight hours a day.

*Edited to insert words that I neglected to type.

[persuaded]

And wow, that hearing loss must have been tough for you as an adult. <3

Yeah.. it has been really difficult and I don't deny it. One minute I could hear and then the next I couldn't... just like that! It's called "Sudden Hearing Loss" (great name huh?) Thankfully I have some hearing left in one of my ears, but as you know sometimes "some hearing" really isn't much help. If there is any background noise at all, I can't understand speech and I have terrible tinnitus to boot. There is actually a new kind of aid (crossover) that could help me, but sadly I can't afford them. It has been a real eye opener for me to go from being just a person to being a "person with a disability." My kids have gotten really good at yelling and repeating themselves endlessly and stamping on the floor to get my attention, lol. And I've gotten much better about asking for help.

Ahh life... one long character building exercise :D

[GenerationCedarchip]

There seem to be very few fundie bloggers with kids (Far Above Rubies is one and I've seen a couple others but I forget who) but they seem very loving with their children. In my church growing up, people were very supportive of those with disabilities such as deafness, autism, Down's, etc.. and would actually help parents to get hooked up with therapy, doctors, etc.. However, invisible conditions and mental illness tended not to generate the same support and compassion. There was a guy my age who was bipolar and I remember the youth director saying that we may never know whether this poor guy was ill or just demon-possessed and that we needed to stay away from him for our safety but we should pray for him. Awful!

[Lillybee]

Persuaded, are you on any kind of Medicaid or Medicare. I know that California's program might pay for the aids.

[persuaded]

Persuaded, are you on any kind of Medicaid or Medicare. I know that California's program might pay for the aids.

Sadly no. I have private insurance through my husband... actually my insurance is pretty good, but there is basically no private insurance that covers hearing aids. Shocking... at least to me.

[Lillybee]

Even if you have private insurance, if you are income and property eligible for Medicaid in your state, you can still qualify. If that happens, insurance is billed first and Medicaid will pay for what insurance doesn't.

[Letgo]

Several months ago I came across a blog with a list of "favorite" sites. I checked them out and one was a homeschooling site for families with special needs children that had EVERYTHING anyone could need, regardless of the needs of the child. The site said that no matter what extra help a family needed, it could all be handled at home. Families did not need to consult outsiders for therapy. There were testimonials from families who completely agreed, as I recall. Physical, occupational, and speech therapy all done at home. Whether you have a child with a hearing loss, autism, CP, prematurity, learning challenges, cleft palate, on and on, there was no need to go outside the family and most definitely no need to seek help at the evil government schools. I wish I had bookmarked this site so I could find it again. I almost cried for all the children in these families who will never receive the help they need.

[AnnoDomini]

Even if my parents could ever be convinced to let any of us go near an evil school, we couldn't, because we're homeschooling under the religious exemption clause, which enables my parents to school as they see fit without any government supervision or testing whatsoever, and also makes us not allowed to take part in any public school programs.

My sister too is still diapered.

[Rosa]

I will say, I have seen families let go of their beliefs when presented with a real, actual child that those beliefs don't serve - especially the belief that prayer is the cure for mental illness. We read about the ones who try to drive out the demon and accidentally kill the child in the newspaper, but I think the ones who seek out the best care they can find and either don't mention it to church friends or quietly evolve in their belief and eventually find a new congregation are a lot more common.

And of course, my parents eventually learned that spanking doesn't cure ADHD. Or I got too big to hit, I'm not sure which came first. Some combo I think - my mom saw that it wasn't working and finally stopped the escalation where I don't know if my dad would have stopped it on his own.

[Guest Anonymous]

Even if my parents could ever be convinced to let any of us go near an evil school, we couldn't, because we're homeschooling under the religious exemption clause, which enables my parents to school as they see fit without any government supervision or testing whatsoever, and also makes us not allowed to take part in any public school programs.

My sister too is still diapered.

How many kids in your family are still school-aged? You mentioned an 11 and a 6 year old, and if I recall correctly you have a lot of siblings. Are your parents adequately schooling all of the kids? I'm sure that they could revoke the exemption if they decided to.

Do you think that your sister with Down's Syndrome should be getting better care than your parents are providing?

[CanticleoftheTurning]

Yeah.. it has been really difficult and I don't deny it. One minute I could hear and then the next I couldn't... just like that! It's called "Sudden Hearing Loss" (great name huh?) Thankfully I have some hearing left in one of my ears, but as you know sometimes "some hearing" really isn't much help. If there is any background noise at all, I can't understand speech and I have terrible tinnitus to boot. There is actually a new kind of aid (crossover) that could help me, but sadly I can't afford them. It has been a real eye opener for me to go from being just a person to being a "person with a disability." My kids have gotten really good at yelling and repeating themselves endlessly and stamping on the floor to get my attention, lol. And I've gotten much better about asking for help.

Ahh life... one long character building exercise :D

Plenty of character building indeed!

When my hearing aid broke, I went through Voc Rehab to get a new one (my parents refused to help me, then they ended up disowning me, but at least I was an "adult" in the eyes of the state for Voc Rehab purposes). My audiologist had to write a letter saying that I do not function sufficiently on my cochlear implant alone, I need a hearing aid to get full benefit out of my jobs.

So, it's worth a try if you can't afford hearing aids, and you happen to work or are trying to find work. Sometimes they have the money to spare, sometimes they don't. You'll have to fill out a lot of paperwork which my Voc Rehab people were very helpful with, and then they paid the $2000 for a high powered aid for me, directly to the audiologist.

/sorry, off topic, lol.

[cindyluvs24]

I have to get up on my soap box for a second as a mom of a child with some special needs: A lot of people with developmental disabilities (and their families) prefer that we use "people first" language. Meaning instead of saying "a special needs kid" or "a deaf boy" etc, we say "a child with special needs" or "a boy who is deaf." It probably seems like a small thing but it does make a difference to a lot of us!

Ok that's all, stepping down.

ETA: this is something I'm still working on myself, too. It's a newer concept to me but I do like it.

This. My son has Asperger's Syndrome. I've always considered him to have extra needs, not special ones.

[jenny_islander]

I personally witnessed the outcome of the kind of child training systems that fundamentalists favor. Someone in our play group had a two-year-old who has not responding when spoken to, throwing things, etc., so she took her out back and beat her with a wooden spoon. (Yes, it was probably really supposed to be referred to by some euphemism, but I call a beating a beating.)

Come to find out that she wasn't responding to her mother because she couldn't hear her and she was throwing things at people because she felt like crap. She had double ear infections so serious that she was completely deaf. They simply expressed themselves as an all-over crappy feeling instead of localized pain.

She spent at least a week being punished for having ear infections because her mother followed a child training system that taught her to look for rebellion every second and interpret all inconvenient behavior as sin.

I don't know whether her mother, who told us the next week about the ear infections--the little girl had had a routine checkup in the meantime and the doctor caught them--ever connected the dots and realized what she had done to her own child and why. She never talked about why she had a wooden spoon in her purse.

[CanticleoftheTurning]

I personally witnessed the outcome of the kind of child training systems that fundamentalists favor. Someone in our play group had a two-year-old who has not responding when spoken to, throwing things, etc., so she took her out back and beat her with a wooden spoon. (Yes, it was probably really supposed to be referred to by some euphemism, but I call a beating a beating.)

Come to find out that she wasn't responding to her mother because she couldn't hear her and she was throwing things at people because she felt like crap. She had double ear infections so serious that she was completely deaf. They simply expressed themselves as an all-over crappy feeling instead of localized pain.

She spent at least a week being punished for having ear infections because her mother followed a child training system that taught her to look for rebellion every second and interpret all inconvenient behavior as sin.

I don't know whether her mother, who told us the next week about the ear infections--the little girl had had a routine checkup in the meantime and the doctor caught them--ever connected the dots and realized what she had done to her own child and why. She never talked about why she had a wooden spoon in her purse.

I hope you called CPS.

[ems]

There seem to be very few fundie bloggers with kids (Far Above Rubies is one and I've seen a couple others but I forget who) but they seem very loving with their children. In my church growing up, people were very supportive of those with disabilities such as deafness, autism, Down's, etc.. and would actually help parents to get hooked up with therapy, doctors, etc.. However, invisible conditions and mental illness tended not to generate the same support and compassion. There was a guy my age who was bipolar and I remember the youth director saying that we may never know whether this poor guy was ill or just demon-possessed and that we needed to stay away from him for our safety but we should pray for him. Awful!

I agree with the several of you on here who mentioned that fundies seem to be better about dealing with physical disabilities or very visible or well-known ones like Downs Syndrome than "invisible" disorders or mental conditions. It makes me think of Barbara Curtis. For those of you not familiar with her, she's a Catholic convert from fundie Protestantism. She's pretty mainstream, with kids in public school and a daughter who auditioned for American Idol; her current "fundieness" seems to manifest itself in her extreme right-wing political beliefs. Anyway, she gave birth to a child with Downs and then went on to adopt several more Downs children. While I find a lot of her beliefs extremely distasteful, I truly do admire her for this. But one of her big things is ranting about "Big Pharma," and she's said some offensive things doubting the validity of autism and mental illnesses. It's just never added up for me. I would think having children with Downs whom one truly loves would lend some empathy to other "special" needs, but I guess when you are skeptical about doctors, Pharma, psychology, those things just don't seem as real.

It could be, again, that people will talk the talk and we can't know how they would actually respond to a situation they've never been in.

AD, I wish I had some advice for you, but I hope/pray that your sister gets the help she needs... :cry:

[jenny_islander]

I hope you called CPS.

One of the moms in the play group was a mandatory reporter and she said not to call. Apparently a pre-stated number of audible blows to the covered buttocks with an implement does not qualify as a reportable incident.

We were all staring at her with frozen, stunned expressions when she came back in, she rocked back on her heels a bit when she saw us looking at her, she never did that again where we could see or hear, and she never even talked about it to the kids either, even in code. (You know, "Do what I say or you know what will happen," etc.) So hopefully she learned something from finding out that she had been punishing her child for being sick.

[CanticleoftheTurning]

One of the moms in the play group was a mandatory reporter and she said not to call. Apparently a pre-stated number of audible blows to the covered buttocks with an implement does not qualify as a reportable incident.

We were all staring at her with frozen, stunned expressions when she came back in, she rocked back on her heels a bit when she saw us looking at her, she never did that again where we could see or hear, and she never even talked about it to the kids either, even in code. (You know, "Do what I say or you know what will happen," etc.) So hopefully she learned something from finding out that she had been punishing her child for being sick.

I really hope so too. That's just sick.

[DistantStar]

(And to add my opinion to what Beeks said, I don't care about the people-first language thing. It sort of annoys me, actually. What is important to me is that whatever terminology you use that your intention not be jerkish. Calling me a midget because you don't know how outdated and offensive that term is is something totally different from pointing and laughing at that midget over there. I expect much the same is true of other conditions/disabilities/whatevers as well. My opinions on language put me in the minority, I know. If people-first works for you, go for it.)

I expect as a fundie I'd be living with my family for my entire life. Due to my particular medical oddities actually birthing babies would be, at best, difficult and hazardous. A brood mare I am not. If modern BC were out of the question I simply could not get married. I'm not married, but the thought of theoretically not being able to for such a stupid reason is infuriating.

[AnnoDomini]

How many kids in your family are still school-aged? You mentioned an 11 and a 6 year old, and if I recall correctly you have a lot of siblings. Are your parents adequately schooling all of the kids? I'm sure that they could revoke the exemption if they decided to.

Do you think that your sister with Down's Syndrome should be getting better care than your parents are providing?

Um, school age is what, under 18? 6. I don't know if they're adequately schooling. Th now 9 yo is a super reader and the 5 yo is learning to read. Everyone else is to the best of my knowledge unschooled. I don't have anything to compare my Downs sister's care with so I don't know. I just wish they would do something about her walking instead of what they seem to be doing which is occasionally thinking bout it, not being able to think of a solution and wringing their hands andfeeling bad and not doing anything.

I could be wrong and they've looked at things and just never talked about it. But like Isaid she's almost 11 and still not walking and nothing visible done since the devices were tried.

[AnnoDomini]

(And to add my opinion to what Beeks said, I don't care about the people-first language thing. It sort of annoys me, actually. What is important to me is that whatever terminology you use that your intention not be jerkish. Calling me a midget because you don't know how outdated and offensive that term is is something totally different from pointing and laughing at that midget over there. I expect much the same is true of other conditions/disabilities/whatevers as well. My opinions on language put me in the minority, I know. If people-first works for you, go for it.)

I expect as a fundie I'd be living with my family for my entire life. Due to my particular medical oddities actually birthing babies would be, at best, difficult and hazardous. A brood mare I am not. If modern BC were out of the question I simply could not get married. I'm not married, but the thought of theoretically not being able to for such a stupid reason is infuriating.

DistantStar, add me to the list. Though my opinion may not count, being only family of special-needs instead of being special-needs myself (though I might have some undiagnosed mental thing). The intention is what I care for. If a person, we'll call her 'Alice' wants me to call her a 'person with special needs' instead of a 'special-needs child' I'll gladly do so. She just needs to tell me what she wants. One of my fears is saying something that offens somebody and that person not telling me how they feel but talking trash about me and assuming I'm bad.

[DistantStar]

If somebody talks trash about you behind your back without you being aware that they were offended, guess who the bad guy is? Not you. They should have said something. Just because somebody's intention is good doesn't mean I won't say, "Hey, just so you know, that term? It's really offensive these days," if need be. Usually they apologize like crazy at that point until I assure them that really it's okay, I'm not mad, but they should know for future reference. A bit of ignorance is dispelled and all is well.

I am trying so hard to think of anything resembling on-topic and mostly failing, except that I am so so so glad I never have been and never will be a fundie. I expect as my condition is physical and visible I'd get the "Oh-So-Special one who is some sort of message from God" treatment. Or in some circles, the ugly one which somebody in all seriousness told me online once -- that my condition was a punishment for my parent's sins. Charming, huh?