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Featured Please - need help with our autistic son

Discussion in 'General Autism Discussion' started by ocmf1702, May 7, 2019.

  1. ocmf1702

    ocmf1702 New Member

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    Hi - please, I am looking for advice for my 11 year old son & others with experience with similar issues


    My son has been formally diagnosed with autism, lower IQ (67) and ADD. Not sure if there is anything else we may be missing. He has been seen by 2+ psychologists (including on a regular basis), occupational therapy, math and reading tutors, pediatricians etc.


    I am his dad - 38 yr old with bipolar 2 and likely some more mild depression and anxiety; on lamictal, citalopram. My maternal grandpa was diagnosed with bipolar 1.


    My son is getting more challenging - not easier. 80% of his time awake he is a good kind boy.


    The biggest problem we have is he absolutely 100% locks up with an inability to perform maybe 70% of days while getting dressed in the morning. We have tried to-do routine checklists, traditional punishments (taking away pokemon cards, etc), time outs, some mild spanking, etc.


    This is taking a significant toll on our family and truthfully; breaking our hearts and driving a wedge in our lives, etc. This is also creating an inability for us to get him to tutors, school, church, etc. There is definitely some correlation between him not wanting to do an activity and this problem (for example; if he needs to get ready to go play, do something fun, go to grandma's etc; there is usually not a problem - but if it is for school, church then more likely that there is a problem). I am really hoping not to have to take him out of our home and place him in some type of a treatment live in center.


    It is interesting because sometime he will have been dressed for hours, and when it is nearing time to go - everything becomes a problem. I am sure he has some clothing sensory issues - this is normally part of the problem (everything "feels weird" - pants too tight even though they are 2 sizes too big, shirts or collars too tight). He generally has developed a few favorites (even though for example with underwear a pack comes with 6 pairs - he will only wear one or 2) - he also does better with smooth clothing (Under Armor shirts, exercise pants - will not touch jeans). We have tried some specialty tight seamless autism shirts - really I don't notice a major difference with those.


    He becomes wildly frantic and emotionally/mentally paralyzed; unable to take any action. He will sit there (I assume in an autistic meltdown); saying "I just don't know what to wear"; "I need help"; "Will you help me", etc. We attempt to help and 100% of the time everything gets refused - "I don't want to wear that" and so on after cycling through every piece of clothing (many times with annoyance, irritation, "you're dumb" for proposing it attitude; sometimes does things to escalate the issue to demonstrate his discontent with us; sometimes very mildly violent with us). If we try to force clothing on him; the panic increases; physical resistance - and immediately the clothing comes off.


    Sometimes the only way out of the house is to grab some clothing and literally carry him out of the house and let him dress in the car - of course with sheer emotional panic and anger on his part.


    I feel threatening with losing a toy, etc only really makes it worse; but me and my wife are only human and don't know what to do even after many hours of psychologist visits and such. For example today; after missing his reading tutor appointment and 30+ minutes of meltdown; I set a timer for 4 minutes; and told him to get dressed within the timer or he would lose his opportunity to go see the new Pokemon movie. Nothing happened (meltdown, "I don't know what to wear", etc). I finally had to leave to work (mom will take him to school) - he was in sheer panic - chasing me down our apartment stairs in his underwear - "don't take away the pokemon movie" - just waiting for the police to be called on us. Always looking back - I feel like the threats make it worse; but we don't know what to do. I feel he must have some significant anxiety issues; but they are not formally treated. 100% of the time; he sees himself as the victim, sees no fault in himself - we cause the issue; we are mean; bad parents, etc.


    Please help or share any advice possible. Would love to know if you or someone you know has this problem and how to help.


    Thanks
     
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  2. Tom

    Tom Well-Known Member V.I.P Member

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    We are for the most part just people on the spectrum ourselves. There are a few with kids on the spectrum and a few both. I have heard of that behavior being very common with autistic kids. A behavioral specialist is maybe a good person to consult with. The little I have picked up from my wife that does that sort of work is that you must really stand your ground and be consistent with your rules. Have logical and reasonable consequences. Be firm but do not get upset or angry. The most important ingredient according to her is always show you love them and make extra effort to recognize/reward the good behavior. Kids pretty easily figure out that if they escalate the drama they eventually can wear down your resistance and get what they want. They also learn who is easy to manipulate and who stands their ground. With autistic kids it is not entirely selfish behavior. They really do not like changes and socializing and there may be learning or other disabilities. It is more difficult for them.
     
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  3. BraidedPony

    BraidedPony Just Enjoying Survival V.I.P Member

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    i know nothing about this but will share a thought i have.
    Have him sleep in the clothes he will wear the next morning. i know that sounds strange but this would make the mornings easier and separate in his mind morning/dressing.
    There might be clothes that dont wrinkle as much? But wrinkles might be better than all the stress.
    For me sometimes changing from my nighty to street clothes is stressful because im going from nice cozy warm to cold clothes.
    Hope this helps, maybe not a good idea but might give you a good one....
     
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  4. Jojo_LB

    Jojo_LB Brilliant Enigma V.I.P Member

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    My 11-year old daughter does this. She's the one who decided to start doing this over a year ago because she absolutely hates mornings and being dressed the night before is one less thing she has to worry about.
     
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  5. Misery

    Misery Photo-Negative V.I.P Member

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    I actually went through alot of the stuff your son is going through.

    For context: I've always had alot of sensitivity issues regarding clothing. As a rule, all things I wear must be simple. No buttons/snaps, period. Back then, and even to this day, I will utterly refuse to wear anything like that.... no matter what. So, "smooth" Tshirts, and usually sweatpants (or simple shorts, in warmer weather), and that's it. You seriously could not pay me to wear jeans.

    It's hard to really articulate and describe WHY I cant handle that sort of thing. I suspect this is the case for many on the spectrum: we dont like something, and in our heads we understand why... but getting anyone else to understand why is nearly impossible.

    Anyway, my parents tried most of the same things you have. They didnt work.

    The biggest one though was anything that could be defined as "punishment". Taking something away, for instance. When that was tried on me, it typically had the opposite effect. After all, I was already in a panicked or messed-up state. And then suddenly, something of mine was being removed.... that's EVEN MORE PANIC. That's typically the one and only effect of "punishment" in a meltdown situation. It will always... always... always make it worse. A meltdown isnt about logic or rules or rebellion or any of that. We dont really have control of it... in fact, you could describe it as self control reaching a critical point, where it is about to collapse entirely. I know it sounds odd to many people... they always think "Well just dont act like that!" but... yeah, it doesnt work that way. The control simply isnt there.

    So the only actual solution is to prevent the meltdown from starting in the first place.

    Firstly: Find out what exactly it is about the clothing that is triggering it. There may be a common theme.

    Secondly: If that isnt working.... figure out IF it's the clothing doing it at all. What I mean is, this whole thing is about him getting ready for the day, right? Well... what IS his day? Could there be something stressful in there? School, for instance... I had ALOT of issues simply because I hated school and got bullied alot, so every now and then my anxiety over it would go through the roof. But in his case, it might manifest as the whole clothing thing. Like, maybe it's not the clothing, or the getting ready bit... it's what he's getting ready FOR.

    Thirdly: Patience. You're gonna need LOTS of it. There is no quick solution to this one. It takes alot of experimenting to find out what works, and what doesnt. Try different ideas out (new types of clothes, for instance, or maybe a change to the "getting ready" routine itself) and see how they do.

    Fourth: Really, the punishment bit probably should go. I know that, as parents, this seems like a natural answer, and in plenty of cases discipline is indeed the correct move. But it simply wont work on meltdowns and will only increase their intensity and frequency. Seriously, I cannot stress that enough. These meltdowns will become more frequent and more wild if that trend keeps up... went through it myself. Instead, let him know you're there for him, and on his side... even if he's being kinda hostile at the time. Roll with the punches as best you can. Alot of the time, that hostile attitude of his is more "venting" than anything. All that agitation has to go somewhere, and it's hard to find a good outlet for it (maybe that's something you can work on with him later?) But yeah, punishment just takes a meltdown that's already bad and turns it into utter hell for him. It works AGAINST him instead of WITH him.



    Anyway, I hope that helps. As I said, I went through the very same sort of thing way back when. Eventually, my parents reached pretty much the conclusions I'm mentioning here, and that's what worked for me.

    I hope things get better for you! Good luck.
     
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  6. Jojo_LB

    Jojo_LB Brilliant Enigma V.I.P Member

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    Oh yes, forgot to mention some points about what may work for your child, but Misery stated them well. Especially the points about punishments not working, so take the time to experiment with what does. Patience is of extreme importance here. Once you find what does work, try to be as consistent as possible.

    My daughter may have inherited at least one neurodevelopmental condition from me (we will find out over the next few months). While I'm not certain just yet, a lot of her behaviors scream "autistic" to me or look like ADHD, so I am raising her as if she has autism and ADHD. She is rigid in the sense that she does what she wants, when and how she wants, and she will get frustrated and upset easily if she isn't given this freedom. It is difficult for her to transition activities. She hates time limits. She hates feeling any sort of pressure or rush to do anything. She doesn't have frequent meltdowns, but she does get in dark moods often, and she has a hard time expressing what is bothering her.

    For the times that she lashes out at us and says rude and mean things impulsively, I tell her in a firm tone and voice (while remaining calm) that her talking like that to us is disrespectful, doesn't help improve her own situation, and that it just makes it worse for my husband and me, who are only trying to help and remain calm for her.

    I then tell her that she can do whatever she needs to do to chill out. I let her go off in a huff. I let her shut the door on us. I let her mutter angrily to herself in frustration.

    I also tell her that she may tell us what is bothering her when she is ready, because she probably needs time to think about it.

    Eventually, she tells us, in her own time, and in her own way. She apologizes. She hugs us.

    Taking stuff away doesn't help. I ask her repeatedly and calmly to put her phone down. And I wait. I just keep at it every 15-20 minutes, until she does it. If she gets short and impatient because I keep asking, I just say, "I know, but I am just reminding you in case you forget." And she does it, eventually.

    If there is something I want her to clean up (she loathes chores), I do the same thing as I mention above. I ask repeatedly, calmly and patiently, until she is ready to do so.

    If you need to discipline, don't hover over or stand in any threatening pose. Try to keep a neutral facial expression. Be as relaxed as you can. Take deep breaths. Keep a calm but firm tone. Speak slowly. Let them know you are willing to give them space to figure things out, but they have to try to calm down so everyone can work through to find the solutions together.

    So far, this method has worked really well for our family. I am still teaching my husband, he has a hard time understanding this method of course. Because I am autistic and have ADHD, and she has at least one of these things, then I have a pretty good idea of how her mind works.

    My parents did not raise me in the way I needed. So how did I learn how to raise my child? I just thought about what I would have wanted from parents and caretakers, and I do it. And it works.

    Don't spend any time listening to anyone who wants to give you their opinions about what you're doing wrong with your child. Typical advice, stuff that works for many children just won't work for children like ours.

    The best thing to do is understand the behaviors. What triggers the melt downs. What does your child like, what makes him happy, what makes him calm, what makes him lose his cool. Let him lead you. You have to do a lot more listening and paying attention to him.

    Best of luck in finding out what works for your family. :)
     
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  7. ocmf1702

    ocmf1702 New Member

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    Thanks - have you found anything that makes it better? Maybe its an 11 yr old thing? :)
     
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  8. ocmf1702

    ocmf1702 New Member

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    Wow - really really appreciate this. For me it is just so difficult to understand. It really helps to get your perspective. I get the trying new clothing idea. What about the school issue? Bullying, etc, wanting to avoid the day and the meltdown manifesting itself in that way? What advice for that issue?

    Thanks!
     
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  9. ocmf1702

    ocmf1702 New Member

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    Awesome - really appreciate the advice. I sound like your husband - just so difficult for me to understand and know how to deal with. This helps a lot to know someone else is dealing with this and to get some practical advice.
     
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  10. Jojo_LB

    Jojo_LB Brilliant Enigma V.I.P Member

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    I just let her be! Seriously..

    I grappled with this for years. Trust me. When she was around 7, 8, and I started noticing ADHD/autistic characteristics (but I didn't know they were ADHD/autistic characteristics at the time), I tried typical stuff for a while.

    Then someone told me she was "spoiled" and didn't get punished enough.

    Something told me that punishments didn't work though... even early then.

    It took a while, but I decided that I just need to let her be most days. I remind her to do the things she needs to do, like eat, brush her teeth, take a shower, keep hydrated, do her homework. I find that just asking her if she's done something yet is a good start. If she hasn't, then I respond with, "Well it is a good idea if you do this now 'cause it's almost dinner time/bed time/ etc", whatever plausible reason.

    Mornings used to be horror lol

    So she came up with just dressing up for school with clean school clothes at bedtime so she can just roll out of bed, brush her teeth, and maybe eat a quick breakfast if she has time.

    Typical parents would be horrified if they find out I just let her do what feels right.

    But they don't know what it's like to raise a child with different, unique needs. so *shrug* I don't listen to them.

    If it works for her, she's mostly healthy and can keep calm doing things her way, then that's how we will continue to do things, until her needs change.


    Editing to add that micromanagement definitely does NOT work for kids like ours.
     
    Last edited: May 7, 2019
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  11. Fino

    Fino Alex V.I.P Member

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    Have you ever just done nothing?
     
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  12. Misery

    Misery Photo-Negative V.I.P Member

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    I hate to say it, but there's no real solution to that part aside from something like home-schooling, or perhaps the sort of school that's entirely meant for students like him. I do believe there are autism-focused schools (and similar things) but I could be wrong on that, and even if I'm right, that sure doesnt mean there will be one nearby for it to be an option.

    But yeah... there's no solution beyond that. Unfortunately, the vast majority of teachers dont *really* take much of an interest in students, even those with special needs. I mean, I'll put it this way: Back in highschool, I knew who the bullies were, and it wasnt just about me. It was VERY easy to spot when they were pestering and tormenting others. It was like, how could you NOT notice? They werent exactly secretive about it. But the teachers STILL managed to either not notice, or just treat it as "not my problem". It was very rare that there was one that would DO something. And that's in a very calm, pleasant sort of area... I imagine that schools in urban zones have it even worse.

    One huge thing though: violence is never the answer to the bullying. Best to make sure he knows this. It just brings on waaaayyyyy more problems. The teachers *cant* ignore that, and it will end badly. I never did that myself, but I knew the faculty well enough to learn just how they operate, and the sort of procedures they have. They're the sorts of things that are universal to most schools.

    It may also not be bullies. The classes themselves can cause it. Schools have this idea that there is one, and only one, way to teach people something, which is usually an endless string of lectures. I always found these to be brain-meltingly tedious and boring. Which often led to MORE stress, actually. They simply wouldnt even entertain the idea of trying a different approach. And school as a whole is like that. They could do EVERYTHING completely backwards for a subset of students, but they do it anyway because "that's how it's done". Seriously, that's the "logic" behind it. So yeah, the school itself can be a problem.


    Of course, all of this is theoretical. This is all IF he's getting bullied. Gotta stress that. There's no way for you to know for sure, unless he tells you, or unless a teacher tells you (rare). It may be that he's not getting bullied at all... not every school is full of jerks! There are plenty of nice kids out there too (sometimes). However, that doesnt mean that the stress isnt there. For many on the spectrum, the simple presence of too many other people is enough to set us off. I think quite alot of us on this very forum have exactly that same issue. To some degree, we all have to learn to deal with it at least a bit, but even as adults, we still have meltdowns and such over it at times, or find ourselves completely drained after encountering too many. Even something like dealing with too many actual friends at once can do it, despite how silly that sounds.

    But to make things even MORE complicated, just because a particular day is a school day, that doesnt mean that the school part of it is what's causing the problem. It could seriously be anything. And unless he's able to describe it to you, you cant know for sure.

    It may be worth trying to have a talk with him, during one of his better moods. Like, simply ask him something like "When you asked for help the other day... what was it you wanted? What can we do to help?" It's much easier to explain stuff when calm, after all. Trying to explain something when you're a panicked mess is very hard. It is possible you'll just get random anger in response though. Random anger at things seems to go along with being on the spectrum, for some of us anyway.


    Most of all though... just be there for him. I know whenever I have a panicky moment, I often just need someone (a family member) to sit nearby and, I dunno, say encouraging things for a few minutes. There's all sorts of ways to do supportive stuff like that.


    Also, yeah, I know what you mean by it being hard to understand. The most annoying part: It's hard for those of us on the spectrum to understand as well. I dunno about others, but I have alot of bizarre behaviors, and even I havent the foggiest clue as to why I do some of them. Which seems absurd, but that's just how it is.
     
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  13. Misery

    Misery Photo-Negative V.I.P Member

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    Aye. Even despite all the stuff I've already said, in some situations, this IS the correct response.

    We are set in our ways. Interference is met with, well... lots of agitation.

    Doesnt mean that just letting things be is always the solution... gotta think it out, examine the individual situation and all. Sometimes it's a really bad idea to do that. But yeah, it's sometimes what works.


    I swear all of this stuff just sounds so bloody convoluted when written out like this. Kinda gives me some new admiration to what my own parents must have gone through, raising me, with all of my chaotic and random moods and problems.
     
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  14. ocmf1702

    ocmf1702 New Member

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    Thanks again - your perspective helps the way I can think about it and hopefully react differently
     
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  15. the_tortoise

    the_tortoise Lost Soul V.I.P Member

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    Have you tried rewards for getting dressed, without punishments for not getting dressed? Maybe let him choose the reward, too, so he feels he has more control and you have more chance of it being meaningful to him.

    Have you tried getting multiples of whatever he will wear, and letting him wear the same clothes every day? (Not literally the same set, you'd have multiples of the same set of clothes....although if he's particularly attached to one set maybe just wash it every day and try at every opportunity to find him a second set he will wear for when the first one literally falls apart at the seams.)

    If he wears pajamas to bed and doesn't want to get dressed, you could just let him wear his pajamas to school or therapy or shopping or wherever he happens to be going. Pick your battles, this one is not worth dying for......if he's having meltdowns clothing may just be the "straw that broke the camel's back"....if you can find a way where you don't have to insist he carry that last straw, perhaps you can all get through the mornings easier.
     
    Last edited: May 8, 2019
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  16. Autistamatic

    Autistamatic He's just this guy, you know? V.I.P Member

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    What you're describing is a well known aspect of autism which is commonly found in children and gradually becomes less prominent as the child grows up. I'm afraid I don't have much time this morning to explain in full but suffice to say - punishments don't work for many autistic people.

    It's called PDA - Pathological Demand Avoidance.

    Look it up and read as much as you can about it and you'll start to understand what it is and how to communicate with him better so you don't trigger him. He is reacting to your behaviour and you will never "teach" him better unless you change.

    Sorry to be so brief but I have to leave for work shortly. I'll catch up with this thread later :)
     
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  17. Gracey

    Gracey Well-Known Member V.I.P Member

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    How did mum get him to school?

    If fun activities are dressed for and happen more smoothly,
    big clue there :)


    Look for patterns.
    Is he more upset on certain days?
    (is there a subject, tutor, classroom, bully in his life on those certain days?)

    Are your reactions to his stress, stressing him further?

    Is he generalising?
    'All clothing is unsuitable' (when he's 'on one')
    It may be more about what he has to deal with when he is finally dressed rather than the clothing itself.
    Not dressing may delay the moment he has to experience something.


    It may also be that he's trying out some boundary nudging.?
    I couldn't really say for sure because I don't know your son :)

    Ask his tutors and any others who interact with him if they've noticed any changes.
    You can rule in or rule out any wider environmental effects, may help to isolate or pinpoint any emerging patterns.


    I've used a countdown in the past.
    Verbally reminding my own children how much time is left before something else will start to happen.

    Verbal reminders of time remaining and what I expected to happen in five minute intervals.
    I didn't watch or micromanage or nag.

    If I stated we were leaving the house in 30 minutes,
    We left the house in 30 minutes.
    Irrespective of various states of undress.
    (5 minute intervals, reminders to brush teeth, put on clothes etc.)
    I didn't raise my voice, threaten any loss of privilege, stress or barter.
     
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  18. SusanLR

    SusanLR Well-Known Member

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    Being an only child and growing up on the spectrum I went through this also.
    Clothing was always and still is at age 62 a big issue with me.
    What is ahead for the day after the getting dressed is where it starts. At least it was with me.
    If dread and anxiety are present before the clothes problem, I only noticed the feel of the clothes even more.
    Finding what is comfortable is so important. Soft, comfy clothes, no tags, nothing stiff, no belts, buttons,
    zippers. If anything the clothes should be so comfy it gives a sense of security like a big soft hug sensory effect.

    Beyond that, the one main thing I've seen here and is the most important is the punishment way of
    reacting to our actions. It just doesn't work.
    It makes everything that is already chaotic in our minds and sensations only worse and can lead to
    rebellion, sometimes lashing out in return. I was like that.
    Being on the spectrum all my life I have no experience with children as I never married or had children.
    But, I remember how it felt going through this as a child and yes, in time it usually gets better.

    We need the knowledge that we are loved and need to feel it as well as knowing it mentally.
    Offer loving kind support and the most simply put advice on here that fit me is
    Sometimes that was all that worked with me.

    I can only add to the above that this so true for one with autism from my own life's experiences.
     
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  19. Yeshuasdaughter

    Yeshuasdaughter Active Member

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    Homeschool
    Homeschool
    Homeschool
    Homeschool
    Homeschool
    Homeschool

    It will solve 200÷ of your problems.
     
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  20. Misery

    Misery Photo-Negative V.I.P Member

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    Unfortunately it's just not an option for many parents. What with other obligations such as work and so on. It's quite an undertaking, after all.
     
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