If you're not raising a disabled child, shut the fuck up!

The BBQ Pit
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Goddammit! If one more person gets all superior and tells me how to raise my child ONE MORE TIME I will personally…personally…I don’t know! I’ll do something terrible because I cannot take this anymore!

I have a disabled child. I was having a conversation with some people about how much responsiblity a child our children’s age (9) can take. We were comparing notes. I was telling them how my child can’t take on the all responsiblities their child could and tried to explain why and they wouldn’t listen to me! I even tried to tell them that his doctors recommended that I don’t try out certain responsibilities yet because he is not ready for them.

Like the issue of cleaning up after himself. My son doesn’t understand what has to be done to keep a room clean or to clean one up so I help him (I give him verbal cues and if he doesn’t get it then I demonstrate what I mean then have him do it). Boy, what a mistake to tell them THAT! They kept telling me to make him do it (“That’s what I do with my kid and he listens to ME”) and to be firm and not give in. It doesn’t work that way! I DO try to get him to clean up but he really doesn’t get what I am trying to tell him so we clean together. “Don’t help him! He’ll never clean on his own if he knows you’ll help him!”. That may be true for other kids but they’re normal (god, I hate that word) and understand what is happening. (this is just one of the many, many examples we talked about)

I was telling them how one day my son flipped out and pulled the clock off the wall, broke my coffee table and pretty much made a mess of everything. The first words out of their mouth?- “Did you beat his ass?”! I told them no, of course not and they kept lecturing me about how he’ll always do it if I let him get away with it, blahblah (like I’m letting him do that!). I tried to tell him that he CAN’T help it, wasn’t trying to be a brat or having a fit because he didn’t get his way, did it only twice in his life and is on medication to help him out but they wouldn’t listen. I DO know how to handle it on the rare occasion he flips out like that (I use a lot of doctors advice, believe me) but their way does not work.

Don’t get me wrong, my son is a good kid and I do discipline him if necessary and he does take on some responsibilites but people do not understand that what works on their kids will NOT work on mine! They don’t understand that he cannot take on some of the responsibilites that other kids his age do. And they won’t listen to me! They just get an smug attitude and it really bugs me!

I DON’T CARE if you read a book about disabled kids! I DO NOT CARE that your Aunt Vera’s dental hygienist’s goldfish breeder’s step-cousin told them something about raising a disabled child. Not all methods work on all kids. YOU do not know what is involved. So if you don’t know what I have to deal with then shut the hell up! When you dole out your advice, the advice you give me just proves to me that you’re talking out of the side of your ass. So when I tell you something and try to explain why your method doesn’t work, listen to me! Don’t treat me like I’m an idiot or a bad mother because my kid doesn’t respond to how he is raised like yours does! I just need different methods than you do.

SHUT UP! SHUT UP! SHUT UP! SHUT UP!

I know there are other on this board with disabled kids. Do you get attitudes like that and if you do have you punched anybody out yet? <----I’m half-serious about that part

I don’t want to hear that their intentions are good because if they were then they’d listen to what I have to say and not have that friggin’ atttitude. I have gotten well-meant advice. I told those people why I wasn’t doing it their way, they listened to me and apologized because they didn’t know. For them, I smile and tell them it’s ok. For the others: aw…hell…I’m going to bed!

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That goes for “normal” kids too. Kids will respond differently to any given method. Do what works.

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I’m sorry.

People can be really awful, and alot of the time they don’t know when to shut up.

(((((((MaryAnnQ))))))

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MaryAnne, I swear I am gonna spit at the next person who tells me what my kids need or assumes that I like or condone their behaviour when they are being little monsters. I got real lucky in the big ball game of life and scored two kids with special needs. Of course if I parented them properly in the first place, they would be Normal. Let’s just ignore all the research on kids like mine and blame me and my SO for their problems.

And a fucking big kick up the arse of the next fucking know it all who asks me why my 7 yo is on Zoloft. He’s on Zoloft because NOTHING ELSE fucking worked and if they want to try natural remedies, they are welcome to find someone else’s 7 yo with OCD and then they can torture that kid! Do people really think I am fucking thrilled to drug my 7 yo? Do they really think that we would do it, if we realistically had any other choices? Do they have any fucking idea what it is like to parent kids with special needs and to have face the really hard choices?

And a special place in hell for my sister who will not let me talk about my kids in her presence. It is kinda funny how hard she works to change the subject - bitch!

At least this week we finally found a paed who was useful. Only took me 5 years.

thanks for starting this thread… I could rant for hours… psychs, psychiatrists, paeds, GPs, other fucking people…

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{{{Maryanne}}} and {{{{Primaflora}}}}
excuse my ignorance, but what is OCD?

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Obsessive Compulsive Disorder.

Not to piss you off MaryAnnQ (god knows I dont want to do that after your post!) but maybe you should look at this differently: these well-meaning boneheads dont see your kid as disabled, they see him as ‘normal’ and expect you to treat him as such. Smile, nod and tell them: “Yes, I will try that” then change the subject. Be glad they arent treating the kid like a freak, like he ISNT normal.

And really, who cares what they think of how you raise/discipline your child? Just dont tell them you help clean his room, and that he broke a clock… they dont see anything ‘wrong’ with him, and I would think for a disabled kid, that would be nice.

speaking ONLY as a mother, not an expert
My youngest had a problem with his speach, he stuttered for years, and is finally growing out of it. My family thought he was stupid, defective. I would have given anything to spare him from that. No matter what he does in his life - they will always think of him as stupid.

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Anyone who has a problem with Zoloft, Paxil, Prozac, etc . . . can take it up with my entire fucking family. 70+ people. Some of us are less . . . tolerant than others. I was on zoloft at 16 or so and should have gotten on earlier. Almost died before I got on it.

There are a lot of people in this world who seem to think they’re the exception to everything.

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My 2cents for what it’s worth.

I can appreciate the “bad advice from clueless people”, since I have a disability myself. The ONLY solution is to NOT EVER discuss your childrearing issues with them. Don’t discuss what medications they’re on either. I’ve found personally that health/mental health issues get very heated and if I want to remain friendly with someone I don’t discuss them. In the end, it’s really none of their damned business anyway. If some parent says “I notice Jack doesn’t clean up after himself very well” I would probobly reply “Yes, that’s something we’re working on together”. Any additional comments from them would be answered with the exact same reply.

On the other hand, if you DO need a place to vent or discuss your childs special needs, perhaps there is a parent support group in your area? It sounds like the kinds of people you’re having these discussions with are not the rational type.

I’ve found that MANY people only want information about you or a childs problems because they want to give their opinions or are nosey. Deny them that opportunity and they’ll leave you alone.

Zette

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Why in the world were you talking with them? Relatives?

We got lucky in that everyone sees us as being so “noble” or “selfless” (or some such thing or another). So when our kids have problems we generally get sympathy–except from our parents, of course, who just know that we are being way too hard on the kids.
(My brother-in-law and his wife, from whom I never heard a criticism, adopted a couple of special needs kids after their own kids got up to middle school. A few months after they got custody, my sister-out-law told us “If I ever told you that you were too hard on your kids, I apologize and take it back.” I guess they are running into the same sort of grief from her family.)

I can’t escape from my mom (although I can nod my head and go on without engaging in conversation), but I don’t know why you’d continue a conversation with someone who was being a jerk. Would you have continued talking with someone who told you that your weight was wrong (or that your hair was badly styled)? Of course, not.

When you encounter jerks, don’t encourage them. Ignore them. You will never be able to change their narrow little minds, so don’t waste your energy.

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Oh, yeah, I have plenty of support groups. :slight_smile: I don’t know what I’d do without them. The people I’ve had problems with are mainly clients. I’ve found that with a lot of women the subject of kids comes up. I try to get it so that we discuss their kids but they see the picture I have of my son on my station (he has his Special Olympics uniform on), they get curious and ask a lot of questions. The majority of the questions are just curiosity, wandering what his disability is. I don’t mind those in the least. Sometimes they ask if it’s hard to raise a child like that. Most of the people that ask DON’T give advice, but enough do that it caused my rant.

I don’t have that picture on my station anymore.

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I have been blessed that all I get from co-workers is a bit of sympathy and concern for my daughter. It does not become a topic of conversation and I get no advice. Is that because they are mostly guys or is it because I’m a guy? The women I’ve worked with at other jobs with more women (we are now up to 20%!) rarely offered advice, that I noticed. My and my wife’s families haven’t offered any advice–to me, that I’ve noticed. Wife has gotten some, especially from her family. Is it that they have been advising me and I just ignore them so successfully?

Okay, the “I’m sorta there, too, and might have learned a thing or two about people” advice part. Ignore them. When the topic arises anyway, say “We’re doing everything we can and are optimistic about improvement.” If that doesn’t shut them up suggest that they speak to his doctor/your SO/their own doctor because any one of them knows more about your son’s condition than you do. Then ignore them. Sometimes it’s helpful to play dumb.

iampuhna sez:

I have first dibs on those jerks (not your family!). I am so fucking pissed about all of the Prozac jokes. I can state unequivocally that the shit saved my fucking life and I wish it had been invented thirty years earlier. And if I had been brave enough to admit I needed it.

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I have one son who is ADHD, and I know that it is not quite the same as what you are going thru but it is a challange in itself. He is also deaf in his left ear. Not to mention the fact that he was just hit by a car in May.
I get so many people who tell me how to handle him when he gets out of hand it isn’t funny. My family feels that I am wrong in medicating him and tell me so all the time.
You know what people? I fought to keep him off meds! My mother lives for anti-depressants and I never wanted a child of mine dependent on a drug for day to day functioning.
He is not so drugged that he is a walking zombie, but it is amazing now what his teacher and others have to say about him. He is in the gifted program at school now because he can actually sit still and focus on the task at hand.
After having him in a wheel chair and unmedicated for a month was living hell. I felt so bad for him because his system was go, go, go, but he was trapped in a body cast.

My youngest son has ITP. A platelet disorder which causes him to bruise terribly at times, and if it gets bad enough we have to watch him for headaches because that can mean brain hemorage.
Nobody really puts in two cents about that one except when we ask them not to play to rough with him.
You see we never know when this is going to strike. It comes with no warning. He is showing signs of ADHD himself, and is never still and loves to play very rough.
When people do critisize it is to tell us to let him be rough and play like a boy should.
Um, no!
If he gets into the habit of being rough and this comes on he could die. We still let him run and do, but wrestling and dare-devil stuff we have to curb.

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I cannot express to you all how awful I feel hearing this. That other people (PARENTS, no less) are as insensitive and ignorant as this positively nausiates me.

While I do not walk in your shoes, I am so very sympathetic. I was diagnosed with epilepsy when I was a pre-teen. My parents didn’t make a big deal and urged me to be low-key also. Not that I should be ashamed–but to avoid the thoughtless and hurtful comments of others. It worked to a certain extent.
I have been on medication all this time. I’ll never be off it. There will never be a day when I will wake up and not have to go to that bottle–count out the pills–check to see when I need to re-order my perscription. I’m NOT complaining. It’s part of me. Part of who I am. And I think that responsibility it forces upon me makes me a better person.

When I worked as a tutor for LD kid in college (I despise the term LD–please suggest something better?), I found that they looked at their unique situations in the same light. What a great, determined, sensitive group they were–down to a person. And fighting their way through college classes where profs sometimes weren’t as sympathetic to different needs from students. That’s why I loved being there–I loved seeing those kids prove everyone wrong. And it is to YOU–the parents who are constant and secure in your love, who shower your children with support and confidence, who continually force the world to tear down the walls of ‘normalcy’ and accept each child as an individual of supreme importance–it is YOU who I give my respect and heartfelt thanks for always understanding that the child is far more important than the ‘rules’ that are placed upon him/her.
I have wondered who has it ‘worse.’ Those who have a life of surmounting difficulties, or those who do not and are never exposed to how great the human heart and mind can be. I’d choose the second group.

Just a side note: A ‘person’ recently asked me if any of my kids were at ‘risk’ for epilepsy. When I told them my kids had a 50-50 chance, they said how awful that was. And wondered how I would deal with it…sob, sob
I laughed. I told them I would deal with it when and if it happened. I told them I had been dealing with it for most of my life. I told them that no one is safe from any number of life-altering things. I told them the only thing I worried about was my kids being treated differently by people who wouldn’t take the time to look past the disorder.
The ‘person’ didn’t get it. That’s okay. I do get it–and you’ve got me on your side. Not much, but a little help is never a bad thing.

What lucky kids you all have to have parents who care so much about them.

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I have found that when people ask me my opinion, they are not asking me for my point of view (which apparently, I am not allowed to have despite the first amendment), what they really want is for me to agree with them.

If you cannot avoid these pin heads (especially if they are family) just go to your mental happy place and come here anytime to rant and rave.

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My daughter recently started on new meds that leave her in a daze. She can hardly do her schoolwork and acts like an especially needy four-year-old. I cry when I think about how, during a period between Tegretol and the new stuff (she’s also taking Depacote, which seems to do nothing), she was smarter and more alive than I’ve seen her in years. She has a rather biting sense of humor under it all and a very philosophical attitude.

The teacher has been very controlling and tried to bully my wife into signing a form that would give the school some of daughter’s legal rights. Wife said she would have to go over it with her lawyer.

After spending three hours helping daughter with her math assignment Thursday I wrote the teacher a note explaining that she had done all she could, that her meds were causing this, and that we are seeing her neurologist on Tuesday to try to improve things.

Friday comes and Daughter says she gave teacher the note, but the teacher doesn’t mention it in the note she sends home. Instead, she starts demanding a meeting “right away.”

Listen, you controlling cunt. We’ll have the meeting AFTER we get the meds straightened out. It does nothing positive for my daughter if we to go in there and listen to you go ‘tsk-tsk’ while she sits, barely there. We know she has a problem. She knows she has a problem. We are doing what we can as quickly as we can. In the meantime, she’s not a discipline problem so shut up and try to be understanding for a second.

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Aaaargh. Fucking bloody fool, dropzone! Not you the teacher!

She’s on par with the two fuckwits who told me last week that my 3 yo will talk if I just use a high pitched babyish voice with him. :rolleyes: Don’t need any actual speech therapy YK. They’re just gonna haul me in there for ‘goal setting’ and talking about my kid in derogatory terms in front of him.

Oh and have a go at me about how important therapy is ‘for kids like this’. Well howsabout they do some therapy then? As opposed to harassing me for being a bad parent because I won’t put him in special ed classes?

I hope you can sort something out with the meds dropzone. And I hope a large meteorite sorts the teacher out.

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Yes, you’re right. The average six-year-old can do all those things. Are you aware that I already knew that? Are you aware that my son already knew that? Are you aware that there is nothing wrong with his hearing? Then why in the name of fuck did you just say that right in front of him!

Don’t start whispering now. It’s too late and all you’re doing is teaching the other kids to point and whisper rather than talk about these things. He has hypotonia. It’s not so bad. It’s not contagious. He just needs extra time and instruction to learn physical tasks; his mind is as sharp as a tack. No, he is not coddled! Unless by “coddled” you mean that we don’t spend every waking moment forcing him to do physical therapy that leaves him so tired and frustrated he collapses on the floor and cries like a baby. God forbid we let him be a normal kid and play or do schoolwork once in a while, huh?

I don’t really care what your grandmother did with your uncle. Chances are your uncle didn’t have my son’s problem, it’s quite rare actually. He has a good network of medical professionals built up around him, and a lovely bunch of teachers who listen to them. I know it hurts your feelings to hear this, but I care more about what they have to say than what some old bat I’ve never met did forty-odd years ago.

Both of my sons are wonderful, thank you. I’m not particularly concerned if the baby gets diagnosed with hypotonia or not. I just want my boys to be happy. Happiness doesn’t require being perfectly normal.

Thank you for your concern. Now go away.

Sincerely,
Kenneth’s mother

PS to the Pope: Why haven’t you canonized Maria Montessori yet? If what her schools do with kids like my son isn’t a miracle, I don’t know what a miracle is.

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I know how you feel. I have a friend who has a 3 yr. old son with CP and a brain disorder. He hears perfectly and can see, he has no control over his body. She says everybody looks at him like a freak. Rather than tell her anything, because I know how difficult it is raising a handicap child, I ask her questions. He also has to be fed through his stomach. He will die one day unless a miracle happens. He is a beautiful boy and smiles at what makes him happy. A parent of a normal child or a handicapped child can only raise them by their needs and what the doctors say or by just knowing their child. My friend was told to feed her son all night through the tube. She said the heck with that. He would pull it out(guess he got full) and milk would go everywhere.

So Maryanne just ignore the stupid asses and best of luck to you. Prima you too.

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Fuck 'em. Anally Rape them for all I care.

Yes, there are children who can flirt with normality just fine. There are also children who cannot, and attempting to judge them on ‘normal’ rules is a failure of society. Parenting the special ones is a great challenge for just this reason. They are different, they are new, they are not everybody else’s kids.

My family seems to specialize in different kids, special needs in ways most people ignore. Being us, we have grown up differently and driven our parents to distraction with our abnormalities. Other people suck. Don’t let them deter you from being, and knowing that you are, a really great parent of a really great kid.

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We take in foster kids. The ones we have now are physically 4 and 3. The mother-fucking county doesn’t want to pay for them to have ass-piping special ed, doesn’t want to pay for them to have dick-licking occupational therapy, doesn’t want to pay for them to have muff-diving speech therapy, doesn’t CARE about what these children need. Never mind that neither one of them can speak intelligible English; never mind that neither one of them can hold a fucking fork correctly in order to feed themselves; never mind that for a while the older one could hardly fucking WALK and that he’s got proven brain damage not to mention the social disorders they both have, caused by the first 2 or 3 years of their lives having been spent abandoned in front of a goddamn TV set being ignored while their parents fought in the background. (Their parents are syphilitic donkey-raping whoremasters, anyway.) The fucking state doesn’t think they NEED to have therapy every day, or even twice a week. Wouldnt’ once every other week be fine? SURE, if you want them to be county cases for the rest of their shit-eating LIVES, goatfelch!!! And then of course there’s the people who insist the state is RIGHT and that we are parenting them wrong. FUCK OFF, BITCH! You don’t live with these kids! Sure, if you talk to them within an hour of their speech class they almost sound like they’re speaking English! But if you dont’ reinforce it every day they forget! And don’t even tell us that if we keep helping the boy put his clothes on he’ll never learn. He tries, all right, but halfway through he forgets what he was doing and just stands there in a catatonic looking fit staring at the wall! SURE he’s fine and eh doesn’t need special ed! Ball-licking cock-face federalist swank-whores.