Believers in neurodiversity, please help de-program me (long, I'm sorry) - Mothering Forums

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#1 of 79 Old 04-19-2008, 10:11 PM - Thread Starter
 
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Hey all,

Let me give you some background first: I have two autistic spectrum kiddos; Malachi, my 3 year old son, who is considered "severely" autistic, and my daughter Tykie, 5, who has Asperger's. Tykie, I'm honestly not too worried about; she is very intelligent and is currently being called "gifted", particularly verbally (she has the vocab of a 14 year old!!!), and I believe that she will grow to be a functional, if quirky, adult. We are not pursuing any therapies for her at this time. My son is severely echolalic, and therefore we are working with a speech therapist to develop some alternate communication systems. I'm also teaching him sign language, and we have a lot of fun together scripting and echolalia-ing to each other. I am going to be homeschooling both of my kids, but they got their diagnoses from the special needs team at our local public school, as it was the only place within 7 hours of us that it could be done.

Now, I consider myself to be a proponant of the neurodiversity concept. I felt that way before I ever heard the word; during our very first visit with the SN team, I told the psychologist that I adored my children and wouldn't change them for the world. And she jumped in to correct me, saying, "well, you need to change them - for the better!" And even as I nodded, I felt a huge wave of sadness at the idea.

Yesterday, we finally told the team that we were definitely not going to enroll them in school, and that, at least at this time, the only therapy we wanted to take advantage of was speech therapy, for Malachi.

This did not go over well.

I'm going to spare you all the hours-long rant I could go into about the struggle that ensued, and just sum it up to say that now, I am deeply shaken. I do not want to torment my children (and it is tormenting them - the stress, meltdowns and fears I've dealt with since we started going to the school tells me that) to train them to fit in the NT mold and to eliminate behaviors that generally do no harm but make NT people feel uncomfortable. Please, don't get me wrong; I want to help my children develop skills to help them through this life. But I do not want to train them out of being who they are.

My biggest fear, one that the psychologist (not a mind-manipulator for nothing, that one!) touched on, is that if I don't do this, if I don't put them in every kind of therapy, take advantage of every kind of early intervention (I LOATHE that word!), put them on such-and-such diet, and basically turn their lives into one long intervention-fest, my children will never be able to survive independantly. That scares me.

Now, to be completely honest, I would love for my children to live with me always, if that's what they would like. I would be perfectly happy to have a generational home, with their familes (if they want them) all under one roof. I'm okay with that. 18-and-out was never my thing anyhow.

But what happens to my kids when I die? I know I won't always be here, and of course I'm tormented by the idea of my brilliant, beautiful, loving, wonderful, autistic children living in some kind of institution. And that's the future that the team painted for me - me, my husband, and two pathetic, lonely, reclusive children, mouldering in a house, until we die and the state comes and takes my babies to some grimy institution. It's my worst fear.

Sp, please, deprogram me. Please, tell me that I'm okay, my kids are okay, and this grim future is painted by someone who really wants those additional grants that the school receives for every "handicapped" child.

Okay, so maybe that's not right, either. But I'm struggling and terrified and I need some help and support.

Thank you, and boy do I hope this doesn't cause a huge uproar. This was the only place I thought I might not get roasted alive for this post.
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#2 of 79 Old 04-19-2008, 11:11 PM
 
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Honestly, I don't think this psychologist is coming from a wanting money standpoint. I think that she really feels that way. It is the current belief on autism that the more therapy, the earlier, the better. That being said we are pretty lax here. DS1 is in public school and has been for 2 years. He doesn't learn as much from us and is very trying emotionally so that is the best decision for us. Ds2(pretty much a stereotypical aspie) was rejected from our special needs preschool for being too intelligent and we decided not to pursue it. We also have a behavior therapist(who might not say it but is very very welcoming of the idea of neurodiversity). Basically we work to try to accomodate them at the moment while teaching them about the nt world. We do not force things on them that they do not want.

I don't think any time is lost if you decide not to send your children to school right now. If you can teach tham and their life is better at home, keep it that way.

Misty, mama to my nurslings William(11/4/02) and Parker(7/13/04).
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#3 of 79 Old 04-19-2008, 11:24 PM
 
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I don't think any time is lost if you decide not to send your children to school right now. If you can teach tham and their life is better at home, keep it that way.
I'm not anti-intervention, more into relaxed, age appropriate intervention. I totally agree w/ williamsmommy. They are so young still - take your time! I'm sorry they were so rough on you.
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#4 of 79 Old 04-19-2008, 11:31 PM
 
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but here is how we view things.
My DD is Deaf. She is almost 5 years old and she does not speak. We believe that the hours of speech/listening therapy that would be neccessary to assimliate her into the hearing population is not appropriate. We believe she is healthy and whole as she is. She attends a school for the Deaf where she is surrounded by other smart children just like her. She has tons of language, even though 99% of the world doesn't understand her. We believe that the goal of most professionals, and many parents, is to turn Deaf children into hearing children....and we disagree. No matter the interventions, she will always be Deaf, and there is nothing wrong with that. We believe that all the therapies will do more mental. emotional and spirtual damage than the convienence of being able to speak a few words to the teller at the bank!

Again, this is just my experience with my daughter, but I have heard autism often compared tp the Deaf community by neurodiversity people, so I thought it might help.
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#5 of 79 Old 04-19-2008, 11:38 PM
 
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Sounds like the person you need to meet with isn't a psychologist-- it's an estate planning attorney, to set up a special-needs trust and guardianships for your kids.
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#6 of 79 Old 04-19-2008, 11:58 PM
 
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My DS received almost no therapy and we were given all the same warnings as you. He didn't respond well to therapy and it was clearly traumatizing him, so we terminated all services. He is extremely bright but I am not sure he will ever live independently. There really is no way to predict these things in very young children unless they are profoundly, profoundly impaired.

As far as when you die, it will be terribly traumatic on them no matter what. ASD children in good (i.e. non-abusive) family situations tend to get extremely attached to at least one parent. We've taken the precaution of having very large life insurance policies and we save more than 50% of our income for the future.

What matters is that their self-esteem remains intact and that they know they are loved and accepted unequivocally.
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#7 of 79 Old 04-20-2008, 12:12 AM
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making legal provisions ahead of time might put your mind at ease. then you can move on with the work of living and helping them thrive. they may never need those back up plans. i'd talk to a lawyer about setting them up so that the kids are not tied into them or have to work hard to escape the helping mechanisms you st in place if they're not needed.

i understand your fear. i went through this a while back and was actuially so terrified i didn't wanna go on a car trip for fear i'd die and DS would be left alone. it was just nutty. i see that now but the level of involvement in my fears about the future seemed perfectly logical at the time. i had been in psych hospitals before and seen the people who came there from group homes etc. i would literally kill to keep my son out of that situation. of course, there are other options, better places, and other legal set ups.

one thing my mother said helped me alot. she reminded me of a family friend that did not speak until very late and who wore a diaper until 5. he smeared poo on the walls. he went to UVA and now practices law in both DC and our home state. i also had a cousin who only ate 3 foods and pretended he was a dog for a year who is now in the marines (not my top carrier choice but to each his own) and quickly ascending the ranks. i could go on. many family members and close friends were or had children who went beyond "strange" and would definitely have been in many hours of therapy had they been children today. the most successful of them were people who's parents chose therapies carefully and who did not try to change their children. they taught them. this is a very important distinction. they taught them skills and taught them how to ease their relationships with others helped them understand how the NT world worked. they identified what problems were there and addressed those problems rather than engaging in wholesale psychological reprogramming.

going on this journey with my son i have come to understand some things. i am a bit like your daughter and a bit like my son. i am pretty sure that i fit on the autistic spectrum as well (i had no idea most people don't rehearse conversations. i never "played" with toys. sensory quirks, anger when others were imprecise, trouble pacing conversations) nobody worried about me because i was so bright and had a wonderful vocabulary. everyone was worried about the kid with the poo smearing problem. i am happy with my life but also live in a crappy apartment with two kids on a shoestring budget and had terrible problems w/ self sufficiency. i didn't know enough about how to be social to have a carrier outside the hard sciences. the "mentally retarded" kid with the "real problems" was more self sufficient earlier and now has a closet full of armani suits. go figure.

so maybe your boy will have the armani suits, maybe he will have the interesting carrier after years of "finding himself" and the family in the cramped apartment where books take up more room than people, maybe he will need a group setting after you are gone, but if he is, as you say, of normal intelligence there's probably an equal chance of those three if you do what you're doing now, and a higher likelihood of the third if he is aggressively programed. that's just what i know from my experience though. no numbers to back it up.
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#8 of 79 Old 04-20-2008, 04:36 AM
 
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I would love to deprogram you but I need to deprogram myself first. The *only* worry I have about my neurodivergent kids (other than the worries I have about all of my kids such as illness, injury, abuse, negative incidents in general) is about their future ability to sustain themselves financially. They can grow up to be weird. I would love it if they all grew up to be weird. As long as they don't grow up to be homeless. Or forcibly institutionalized. Or forced to live with abusive people because they can't afford to leave. Or suffering from inadequate food, shelter, medical attention. Or... any of the other sufferings associated with not being financially "independent" (as popularly understood) in our society.

I am unable to work due to chronic illness (the autism has caused some work problems too), and I speculate with great fear what my fate would be had I not met my husband... or were he not the man of character that he is... and if he dies, I'm likely out of luck. So this is something on my mind.

One comforting thing regarding ASC people is that there are so many new fields and options coming into being now, that ability to work in a conventional setting isn't necessarily essential. There are entrepreneurial options, work-from-home options, contract options, many technological things, which may be more suited to an autistic person. As a parent, I try to encourage my children's abilities in whatever form they take---you never know what might be a career some day.

Another thing that comforted me, one related to "deprogramming," is letting go of the notion of independence. Human individuals are not independent. It's not in our nature. In spite of the popular myth of self-sufficiency, people are meant to be interdependent. That some kinds of interdependence (employment, for instance) are valued and labeled as "independent" while other forms of interdependence (public assistance, for instance) are derided and called "dependent," is not based on any objective judgement, but merely on popular societal prejudice. So, no, your children probably will not be independent. But neither will neurotypical children. And that's okay. So rather than "independent" vs. "dependent," it may be better to look at various circumstances of interdependence and the degree of agency offered to individuals in each circumstance.
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#9 of 79 Old 04-20-2008, 04:50 AM - Thread Starter
 
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Thank you everybody - especially thebarkingbird and Brigianna - for your comments. I have so much to take into consideration, by tomorrow morning, I'll probably have ever more. Couple of things, though, before I crash for the night:

i am pretty sure that i fit on the autistic spectrum as well

I'm actually staring to wonder about myself and my husband, as well. After Tykie's dx, one of the memebrs of the team told me that, since we had two children that have been on the spectrum since birth, it would maybe be a good idea for Isaac and I to be evaluated (not by the school, obviously!), as well. And it got me started thinking about the fact that Tykie is so very much like I was as a child (and, incidentally, apparently how my mother was, as well: I'm not certain my mother's on the spectrum). And my husband: If I had more info about what he was like as a child, I'd have a better idea, but I don't doubt at all that he belongs on the spctrum, as well. I told someone IRL that, and the scoffed and said there was no way an entire family would be autistic. But it doesn't really seem that far fetched to me.

I kind of got chills, because this: i am happy with my life but also live in a crappy apartment with two kids on a shoestring budget and had terrible problems w/ self sufficiency. and this: the cramped apartment where books take up more room than people describe me/my home/my life awfully well.

I would love to deprogram you but I need to deprogram myself first.

Maybe there's some kind of de-programming program we could enter.

I'm actually glad that I'm not the only one out there struggling through this right now.
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#10 of 79 Old 04-20-2008, 12:28 PM
 
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FWIW, I don't think you do need to be deprogrammed. You have a legitimate concern about your children's future, and you are wondering if you are doing everything that needs to be done to address that concern.
it is hard when our children are so little to envision what life will be like for them as an adult. What will they be like? Will they work? Have a family? Be happy? I think parents of NT kids automatically assume ( sometimes wrongly) that they can answer "yes" to all of those questions. Parents of differently abled kids know the reality of the situation and we have all learned never to assume anything. Anyways, my point is that, you are not being anti-neurodiversity, you're simply facing a valid concern.
As far as the psych goes, there are many theories on autism and treatment out there, including the "normal at all costs" one. That theory can embrace everything from traditional therapies to GF/CF diets and supplementation all the way up to physical abuse and aversion therapy ( can't remember the neame of that horrid school back east but I am sure everyone knows what I am speaking of). As a parent it is YOUR decision, not the psychs, to determine what avenues, if any, you will pursue to help your children learn how to function. The specialists can disagree with you all they want, and they often will, because they are not emotionally invested in your child's well being. They have an ulterior motive, they want to "fix" your kid. I guess basically what I am trying to say in this very long and disjointed post is this:
trust your instincts, don't lose sight of what you want for your kids because someone who isn't necessarily interested in your "whole" child makes a comment that is inappropriate. Therapy should be a compliment to your child and their skills, not a torture session. If it doens't work take it out, perhaps you can find a therapist that is a better fit later on down the road. And perhaps later on down the road you may not even need one.

PS... have you discussed this concern with your DP and your family? I once made a comment about group homes and my younger son to my sister. She informed me that when my nephews heard that Gabe was DX they told her that should the need ever arise ( ie she and I are both passed away) that they will take Gabe in. They did not want to see him in a group home and would never allow it. It was a pleasant surprise to me as I had never though my nephews would be wiling to take on caring for a diff. abled relative who is getting on in years, but none the less they would be more than happy to do so. I suggest you speak to your family about your worries, you might find a solution there that you never thought existed.

M : proud mama to B (16) : and G (8) and : x 2 :
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#11 of 79 Old 04-20-2008, 01:04 PM
 
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I worry all the time that ds1 will be able to care for himself later in life. Truth be known we are more teaching him life sustaining activities rather than just schooloing him. Probably more than an nt child because they could more just pick it up. I have a bil who is most likely on the spectrum. He is on ssi and his girlfriend helps him out a lot. I would worry a lot more if she wasn't around.

Misty, mama to my nurslings William(11/4/02) and Parker(7/13/04).
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#12 of 79 Old 04-20-2008, 01:16 PM
 
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Sounds like the person you need to meet with isn't a psychologist-- it's an estate planning attorney, to set up a special-needs trust and guardianships for your kids.
This. There are lots of services that allow a person to live in their own home, with alternative family members/friends or in a small group home. Institutions aren't the norm now-a-days.

With that said, 3 years old is far too young for them to be assuming that your child will not live independently or they NEED all these therapies. Kids with ASD develop just like other kids, just not the same way. We can't assume a NT 3 year old will be capable of supporting themselves at 18 either. There are just too many variables to consider with ANY child, so I don't get wrapped up in what my Autistic child will or will not be able to do.


Yesterday a local program put on a day-long class for parents that dealt with Autistic children and the transitioning into teenagers and beyond. I didn't get to go because I had other stuff come up, but it sounded like it was going to be educational. I'll have to ask a couple other moms that went how it was. But perhaps there are similar things in your area for series like this?

Lately our area has been privilege to "Parent Training" classes that have been awesome for us. They are aimed at families with Autism and help parents wade through the legalities, school, IEPs, therapy options (if you choose) and networking with other parents. Even things like how to get insurance, funding etc. It would be really cool if more areas did this. It also helped those with young Autistic children connect with parents with older children, you can learn a lot from each other and there is a lot of piece of mind in that.

Mom to Joscelyne 14, Andrew 12, and Mackenzie 10 and wife to Nate.
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#13 of 79 Old 04-20-2008, 01:43 PM
 
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I speculate with great fear what my fate would be had I not met my husband... or were he not the man of character that he is... and if he dies, I'm likely out of luck. So this is something on my mind.
Same here. I am completely dependent on my husband and I'm not sure I could live fully independently. I wish I had known this about myself earlier, it would have saved me many exhausting and fruitless battles.

I wonder a lot if the fact that I'm female gave me this solution. I know there are men financially supported by female partners but it is less common and there is still a stigma attached to it (my BIL is currently supported by his wife, living in his FIL's house, and the tension is very high-- I doubt it would be as bad, if the genders were reversed).

My main hope for my ASd son and DD is that they can apply their intelligence to a lucrative career. I do worry though that social skills and being a "people person" end up winning in the end, over intelligence. This seems to be the case except in a few hard science professions and maybe certain areas of medicine.
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#14 of 79 Old 04-20-2008, 02:00 PM
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my neurodivergent kids (other than the worries I have about all of my kids such as illness, injury, abuse, negative incidents in general) is about their future ability to sustain themselves financially. They can grow up to be weird. I would love it if they all grew up to be weird. As long as they don't grow up to be homeless. Or forcibly institutionalized. Or forced to live with abusive people because they can't afford to leave. Or suffering from inadequate food, shelter, medical attention. Or... any of the other sufferings associated with not being financially "independent" (as popularly understood) in our society
i have been homeless, at the mercy of social services, in psych hospitals, and stayed with very pad partners because of my inability to "fit in" in the work world. that part of my life was starting to end in my early 20's and by 26 i know that i could make it on my own. it was a hard long road (just being realistic here) but the reason i made it was my family. they were there to bail me out and then to help me build the skills i needed to make my life work. my mother explained social situations at work, my dad helped with money management, my husband helped me get better at integrating all these skills. if anything ever happened i could leave and be ok. once during a particularly rough period he laughed and said he better behave himself because he'd helped make me the kind of person who could walk if i needed to. i will always need a support person to help me navigate the world but i am perfectly capable of making my own decisions. i need help with the data.

if anything should happen to you (i hate these morbid conversations but they're important) you might not need an institutional level of care for your kids but you would need a supportive family and a stash of cash for the inevitable financial mess ups. really, things can be ok.

i LIKE my apartment w/ all the books and art supplies. i LIKE my history. i have seen and done things most people will never imagine and seen a side of the world they pretend doesn't exist. my eyes are open.

so don't give in to fear about the inevitable difficulties. they are there and every SN person has their own particularly interesting set.
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#15 of 79 Old 04-20-2008, 02:20 PM
 
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I am unable to work due to chronic illness (the autism has caused some work problems too), and I speculate with great fear what my fate would be had I not met my husband... or were he not the man of character that he is... and if he dies, I'm likely out of luck. So this is something on my mind.
Life insurance. This is why healthy young people get life insurance. So that if they die, the ones they leave behind will have an income. And an estate planning attorney.

Dh and I had our will drawn up for about $500. We make a minor sacrifice to keep our life insurance up to date. And we have two children who I'm pretty sure WILL be able to "make it on their own" (one mildly neurodivergent, one who probably qualifies as neurotypical). But when I was pregnant with #2, couldn't sleep for fear that something should happen to us and no one (or the wrong people) would be raising our children.

We didn't have that $500 at the time, and we're still paying off that debt (in a round about way because we didn't pay off a credit card because of it). But, I feel a lot better.

Here's my point of view from someone who's usually pretty gung-ho about therapy:
-The brain cannot learn when it's traumatized. If putting your child into therapy is going to be traumatic, don't do it.
-You are the best judge of what will and will not work with your child. No outsider can tell you that.
-You can learn how to do a lot of things yourself that will help your child (sensory diet, etc.). If your child reaches a point where s/he is frustrated AND you can't help them anymore, then outside therapy might be in order.
-Is living independently the best goal for both of your children? Will your child want to live independently when he's 25? 35? (FWIW, my brother didn't really live independently until he was close to 30.)

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#16 of 79 Old 04-20-2008, 03:44 PM
 
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iit was a hard long road (just being realistic here) but the reason i made it was my family. they were there to bail me out and then to help me build the skills i needed to make my life work. my mother explained social situations at work, my dad helped with money management, my husband helped me get better at integrating all these skills. if anything ever happened i could leave and be ok. once during a particularly rough period he laughed and said he better behave himself because he'd helped make me the kind of person who could walk if i needed to. i will always need a support person to help me navigate the world but i am perfectly capable of making my own decisions. i need help with the data.
This is where I'd more or less fall in. I can't manage finances at all. I can't manage bills. These are the 2 things that hold me back, but totally doable. We almost lost everything because of my inability to comprehend these 2 simply things. I had a hard time finding a job that I'd like, I get bored VERY easily. I hate dealing with social intricacies of a regular job. I was a pre-k teacher for a few years, kids are easy to interact with. Then I was a director of a center, but I could close my office door and be away from everyone. But that was still not "it" for me. I was good at it, but I was bored. Now I run my own business and even am starting to make more than DH. Its perfect. Its my Autistic traits that allow me to be successful in what I do and I can work alone. (except for my clients of course, lol) We have it set up so we are not reliant on my income if need be, so there is not a ton of stress on me. And Dh manages finances and stuff. If I had someone to simply manage my finances and money I could live %100 independent. Its just not a skill I grasp, fortunately I've always had DH.

Mom to Joscelyne 14, Andrew 12, and Mackenzie 10 and wife to Nate.
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#17 of 79 Old 04-20-2008, 03:55 PM
 
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Yes to the life insurance. DP got some about 2 wks ago. Both Sam and I have AS and he is self-employed. He does computer programming at home. Working at home seems to be the new thing now, and by the time your children will be old enough to work, most people will probably be working at home. I'm also hoping that, by that time, autistic people will be valued in society, at least, a lot more than they are now. Supposedly there are a lot of children out there with an ASD. If allowances aren't made somewhere in the work force, there will be a lot of unemployed people out there. People will be complaining about the rise in taxes to support people. I can almost guarantee that there's going to be allowances made for ASD children when they enter the work force and less workplace discrimination because there's going to have to be, YK? There are autistic people out there fighting for it and a presidential candidate (Obama) who seems like he might work to put an end to it. Hopefully something changes soon.

ETA: You don't seem to need reprogramming to me. You seem like a mom who is worried for her child. I'm really glad that there are parents out there who don't want to change their autistic children. That's a sign to me that things are changing for the better.
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#18 of 79 Old 04-20-2008, 10:11 PM
 
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Just wanted to offer
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#19 of 79 Old 04-21-2008, 01:51 AM
 
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Oh, for what it's worth we do have life insurance. Not enough such that the untimely death of one of us, especially my breadwinning husband, would not financially devastate us though...
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#20 of 79 Old 04-21-2008, 08:35 AM
 
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That fear was what prompted me to apply for disability. While I can manage to find a job, I burn out on it just managing the daily social aspect. I clock overtime finishing things that I'm not getting paid for. And the learning process is oh so hard. Constructive criticism is the hardest thing for me to hear. (please tell me I'm not the only one that cried when I got a Mod warning for a misplaced post in TAO? )

I do not have life insurance though.

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#21 of 79 Old 04-21-2008, 08:43 AM
 
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I didn't read the replies because I'm on my way to school. I'll come back, promise!

However, short version: I don't believe in the "magic window." I know some of you believe in an autism "epidemic," but in reality there are tons of adults being diagnosed, adults who are higher-functioning now than they were as children. Many of us got through without much useful therapy or, like me, tons of utterly useless Freudian analysis designed to ferret out the trauma that "made me that way."

That said, some early therapies can be really great. I always wish that I'd had a chance to (especially now, as an adult) have some more sort of really practical OT to help with sensory issues and self-care skills.

If you're genuinely worried about the future, and I say this to all of you with love, spend some time lobbying for better options for autistic adults. Help with life skills, options for living other than "with mom" or "in an institution" for those who can't manage alone. ALL THE MONEY is going to EI and school-aged stuff, with the idea that this "magic window" of intensive therapy will make some of the kids "better" and the other ones were "too low-functioning" to matter much anyway.

I am all ABOUT neurodiversity. But I acknowledge some very real limitations faced by autistic people. Work for change in that area.

FWIW, I think you're doing the right thing by giving your kids a breather. You can always re-evaluate. Really.
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#22 of 79 Old 04-21-2008, 08:47 AM
 
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Originally Posted by meowee View Post
Same here. I am completely dependent on my husband and I'm not sure I could live fully independently. I wish I had known this about myself earlier, it would have saved me many exhausting and fruitless battles.

I wonder a lot if the fact that I'm female gave me this solution. I know there are men financially supported by female partners but it is less common and there is still a stigma attached to it (my BIL is currently supported by his wife, living in his FIL's house, and the tension is very high-- I doubt it would be as bad, if the genders were reversed).

My main hope for my ASd son and DD is that they can apply their intelligence to a lucrative career. I do worry though that social skills and being a "people person" end up winning in the end, over intelligence. This seems to be the case except in a few hard science professions and maybe certain areas of medicine.
Me three on the husband thing, and from what I understand that is way more common than I realized among autistic women.

I'm trying to do the career thing. I'm a hyperlexic, trying to become an academic. The people skills thing is huge.
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#23 of 79 Old 04-22-2008, 09:02 PM - Thread Starter
 
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Thank you, everybody for your replies. I appreciate them.

For now we're doing speech therapy to help us learn to use the PECS together, and I'm teaching him sign language. Better communication (and the SP actually tells us we're able to speak his language really well ) is our biggest drive right now. We're also working with an OT on sensory issues and hopefully, eventually, life skills. I have a phone appt with an ABA therapist to discuss things, because I essentially know nothing about it, but although I'm going to talk to her about it, we're not starting anything new right now. And the stuff with the OT will be about once a week right now, mostly for them to teach me how to help Mali. I've been firm with her about not wanting to change him, but rather give him some helpful life skills. Frankly, I find eye contact a little uncomfortable with anyone other than my children and usually my husband, so I don't see the need to force eye contact. She was resistant initially, but finally seems to have become more accepting that her goals are not our goals. It also helps that she knows that she's not trying to train him to fit into a normal school classroom.

As for the life insurance, I think it's a wonderful idea and I hope to be able to implement it ... eventually. Same with having a lawyer draw up a life plan for both kids. Unfortunately, we have no money. We're just barely scraping by, frankly. We're hoping to be able to get DDD assistance and possibly SSI for Malachi (I don't think Tykie would qualify; she's too high-functioning for the school services, at least), so I can be home with the kids at all times, as opposed to having to leave them (gawd knows with who!) and go to work. I have no idea how we could afford life insurance or a lawyer.

Thanks again.
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#24 of 79 Old 04-22-2008, 09:33 PM
 
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I am fortunate enough to have found my professional Autistic niche, so I have no problems supporting us, and making sure we have retirement/insurance/estate taken care of. But to be honest, nobody believed in 1984 when I was spending rediculious amounts of time obsessing over computers, that it would be a viable and lucrative career path. It was a quirky diversion, something people believed inhibited me. I would never be able to feed a family by clacking away on a keyboard... Thank the DNA my dad was an early adoptor and a bit of a technophile himself, because we suffered much criticism for wasted time and money, doing what now amounts to nice earning potential.

I see my Autistic 3 year old and how obsessed he is with codes and numbers, and keyboards, and devices and I am proud, excited, and a bit intimidated. He will probably be loads better at code writing/cryptography/analysis than me because he is starting earlier, and he has less obsticles than me (more accepting culture, both parents on-board, unlimited access)... Not saying he has to do this, but it seems like it is what he is already driven to do - hah yesterday he kept begging me to draw "14". I think all of these things, and I don't really even take into consideration that he is only just now using words, and most of that is scripting (heck most of my words/sentances are scripting). I mean I developed those things myself, even if a bit delayed, I still did it. I just have a lot of confidence in his priorities, because I have a lot of confidence in mine. If he needs adaptive language he will just do it. If he needs to write, he will just do it. If he needs to work at the mall even though dealing with people sucks, he will just do it. My role is to show my kids anything they want to know, or help them find the answers they need, I mean obviously I help them a lot but my primary job as a parent is making sure they know they can come to me for help accomplishing their priorities, but that is the big thing... they are priorities set by the individual, not by the therapist, or parent, or schools, or anyone else. I think people (even 3 year olds) know what will make them happy better than anyone else does.
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#25 of 79 Old 04-22-2008, 10:02 PM
 
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I personally don't view autism as neurodiversity. Different interests and skills, yes, but autism, no.

We are an RDI family, and Dr Gutstein points out two very important issues. One: only 1% of HFA's marry, and Two: nearly all autistics "want" to marry/have relationships. As time goes on static skills (single cause-effect situations) in autistics increase, while their dynamic skills (needed for problem solving and relationships) decrease, while the reverse is true for NTs. RDI views autism not as "neurodiversity" but as something that can be remediated through stimulation of the less active parts of their brain, to increase the quality of life of the individual.
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#26 of 79 Old 04-22-2008, 10:13 PM
 
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Originally Posted by babysbum2 View Post
I personally don't view autism as neurodiversity. Different interests and skills, yes, but autism, no.

We are an RDI family, and Dr Gutstein points out two very important issues. One: only 1% of HFA's marry, and Two: nearly all autistics "want" to marry/have relationships. As time goes on static skills (single cause-effect situations) in autistics increase, while their dynamic skills (needed for problem solving and relationships) decrease, while the reverse is true for NTs. RDI views autism not as "neurodiversity" but as something that can be remediated through stimulation of the less active parts of their brain, to increase the quality of life of the individual.
How much of that though, has to do with the people that have HFA vs our societies in general and the demands we make on people to act "normal" aka the way we think they should? Sometimes society takes issues like autism and makes them far worse then they need to be because of it's rigidity and unwillingness to accept differences in people. Not all of us feel the need to normalize our kids at all costs. I am willing to take the chance that my son will develop as he is meant to throughout the course of time, rather than insist he participate in therapies that tax him and make him unhappy.

M : proud mama to B (16) : and G (8) and : x 2 :
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#27 of 79 Old 04-22-2008, 10:24 PM
 
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Dr Gutstein points out two very important issues. One: only 1% of HFA's marry
A bit off topic but, do you have a reference for that? I wonder how on earth he'd know that. I smell a fish.
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#28 of 79 Old 04-22-2008, 11:25 PM
 
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put them on such-and-such diet, and basically turn their lives into one long intervention-fest, my children will never be able to survive independantly. That scares me.
JBug, sorry, I didn't address you directly, but the subject in general, which I'll come back to in a moment. I just wanted to say that I empathize with you - it is overwhelming at first to be confronted by all those interventions. The reason I love RDI is because it doesn't feel like an intervention; it's actually fun and the parents get a lot out of it as well. It is taming my dh, and bringing more of his feeling and thoughts out, more than anything else has. We also do social stories and some sensory activities; which I enjoy. I would not do interventions that took away our enjoyment in life (ie I don't have much energy for ABA), or didn't enhance the quality of our lives.

We are going to try the food allergy tests and diet, just for an experiment. I was convinced by a friend who uses it with her son, and had great success, and who claims that we would barely notice any difference in our lives, as almost everything comes in optional "gluten free" versions these days. Couldn't bare to go without chocolate!!

Quote:
do you have a reference for that? I wonder how on earth he'd know that.
Feebee, I doubt Dr Gutstein would publish that statistic everywhere if it wasn't based on fact. He has a lot at stake if he were to be making things up.
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#29 of 79 Old 04-22-2008, 11:30 PM
 
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How much of that though, has to do with the people that have HFA vs our societies in general and the demands we make on people to act "normal" aka the way we think they should?
because, autistics WANT relationships and friendships, but they dont' have the Theory of Mind to get what they want. My son is a classic example: he finds it highly distressing that he has no friends. He is always stating his desire for frienships, yet he is unable to do anything but parallel play or resort to aggression. Then he feels awful about himself because "somehow" it all goes wrong. As his mother, I want to do the best for him and help him out; help him develop the missing pieces to aquiring a TOM that will be adequate enought for him to establish collaborative friendships.
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#30 of 79 Old 04-22-2008, 11:58 PM
 
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My suggestion is at a time when you've had some time to think it through to really question the premise of your question. I don't accept the choices are torment the child or accept they will live with you forever. I'd try to think about what your kids will want and need and what will make them comfortable. ABA isn't the only option. Putting them through things you don't agree with are not the only option. There are therapies that may make the kids feel more comfortable in their own skin and more confident in their relationships with other people and I believe they deserve to have that options. To the extent that we pursued interventions our motivation hasn't been to change the child, but to help him be comfortable with himself and with being in the world.
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