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Autism Moms Have Stress Similar To Combat Soldiers (article)


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#1 Kathleen in VA

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Posted 23 January 2010 - 02:30 PM

http://www.disabilit...ms-stress/6121/

This could also apply to moms of other types of special needs children as well, I would imagine. Hope this research translates into practical help for these moms. :grouphug: to all of you who fall into this category.

#2 MamaSheep

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Posted 23 January 2010 - 03:04 PM

I read that story a while back and shared it with some other moms of kids with "challenges". Every one of them laughed and pointed out that combat soldiers get furloughs, and their tour of duty ends eventually, but being a mom is a lifelong commitment and it's hard to get breaks because not just any neighborhood teen is up to the challenge of your particular child. None of them disagreed about the stress levels, though. But you do learn stragegies to cope over time.

#3 Jean in Newcastle

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Posted 23 January 2010 - 03:10 PM

I wonder why they just focused on "moms of kids with autism" vs. "moms with children without disabilities". I would think that moms of kids with all sorts of disabilities (I'm thinking the kind that requires constant diligence and care) would have the same kind of stress. That's why it is so important to get respite care if you can get it. I used to provide respite care and it is very different from just hiring a babysitter.

#4 swellmomma

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Posted 23 January 2010 - 03:15 PM

I read that story a while back and shared it with some other moms of kids with "challenges". Every one of them laughed and pointed out that combat soldiers get furloughs, and their tour of duty ends eventually, but being a mom is a lifelong commitment and it's hard to get breaks because not just any neighborhood teen is up to the challenge of your particular child. None of them disagreed about the stress levels, though. But you do learn stragegies to cope over time.


:iagree:

#5 G5052

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Posted 23 January 2010 - 03:16 PM

My internist is perpetually amazed at how healthy I am despite all the challenges, and that we're still married after seven years. Apparently after that point, the number of marriages that survive what we've been through is in the very low single digits.

#6 LNC

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Posted 23 January 2010 - 03:21 PM

We have several special needs in our family, and I have found autism the most stressful. The social and behavioural impairment of children with autism results in a lack of support from friends, family and society at large. People are compassionate about physical and mental disabilities, but include an older child with autism and that compassion disappears.

Many people believe autism is no excuse for bad behavior. Etc. etc. etc. Hence, the unique stress and pressure!

Edited by LNC, 23 January 2010 - 03:40 PM.
Too much personal info...


#7 CactusPair

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Posted 23 January 2010 - 03:35 PM

LNC, I hope I don't embarrass you, but I wanted to say that

you are one of my heroes!

When I'm having a bad MS day, or another kind of bad day--I have many kinds-- I think of your strength for inspiration.

You're an amazing person.

:grouphug:

#8 myfunnybunch

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Posted 23 January 2010 - 03:37 PM

I wonder why they just focused on "moms of kids with autism" vs. "moms with children without disabilities".


At our university there is an autism research/education group. They focus their research on autism because that's their specialty.

I expect that the focus in this study has something to do with either the researchers' focus, controlling the variables in the study, or both.

Cat

#9 swellmomma

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Posted 23 January 2010 - 03:45 PM

We have several special needs in our family, and I have found autism the most stressful. The social and behavioural impairment of children with autism results in a lack of support from friends, family and society at large. People are compassionate about physical and mental disabilities, but include an older child with autism and that compassion disappears.

Many people believe autism is no excuse for bad behavior. Etc. etc. etc. Hence, the unique stress and pressure!


But there again it is not jsut austism. My kids don't have autism but they do ahve behavioural disorders that others don't understand. They are thought to be spoiled, or brats etc. There is no understanding or compassion for these children or their parents. The same is true for many behavioural/mental disabilities. If a child has a hidden disability(as in not physically disabled) the parents will face this level of stress whether it is a bipolar child, a conduct disorder child or autism etc. While the article focused on autism we should not be ready to claim that the parents of children with disabilities other than autism are not facing this same level of stress. Trust me, I am deep in the trenches now. It's not autism but it is just as hard, if not harder, at least there is program out there to help families dealing with autism. There is nothing out there to help kids like mine.

#10 LNC

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Posted 23 January 2010 - 03:52 PM

But there again it is not jsut austism. My kids don't have autism but they do ahve behavioural disorders that others don't understand. They are thought to be spoiled, or brats etc. There is no understanding or compassion for these children or their parents. The same is true for many behavioural/mental disabilities. If a child has a hidden disability(as in not physically disabled) the parents will face this level of stress whether it is a bipolar child, a conduct disorder child or autism etc. While the article focused on autism we should not be ready to claim that the parents of children with disabilities other than autism are not facing this same level of stress. Trust me, I am deep in the trenches now. It's not autism but it is just as hard, if not harder, at least there is program out there to help families dealing with autism. There is nothing out there to help kids like mine.



I agree! I should have said "hidden disability". :grouphug:

#11 Sassenach

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Posted 23 January 2010 - 04:01 PM

I wonder why they just focused on "moms of kids with autism" vs. "moms with children without disabilities". I would think that moms of kids with all sorts of disabilities (I'm thinking the kind that requires constant diligence and care) would have the same kind of stress. That's why it is so important to get respite care if you can get it. I used to provide respite care and it is very different from just hiring a babysitter.


As a mom of a severely disabled child, I do see a difference between my stress levels and that of moms of children with autism. I am speaking ONLY for myself here. When I go to classrooms, or to the neurologist office and observe moms of kids with autism, I am always struck by how CONSTANT their work is. My son can't talk, feed himself, bathe, really do anything for himself. Even with all of that, I still feel that my job is easier than that of those moms. My son is pretty cut and dry. Physically, it's a lot to keep up with, but he is a uber easy going guy and mentally I don't find it all that stressful. Also, his educational needs are pretty easy to assess. With a child with autism, there is so much more to wade through. The same for lifeskills. It's just a different beast. Does that make any sense?


****reminder- I am only speaking for myself****

#12 transientChris

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Posted 23 January 2010 - 05:44 PM

I am sure that moms of autistic kids have a lot of stress. But I also know that moms of other kids with mental disorders have a lot of stress too. Even ones that are supposed to be so common like major depression. Well there is depression and then there is major depression and then there is something like major depression for which medications don't work. That is kid #1 who is doing very well now and has been for over a year. BUt then there is severe ADHD with PMDD thrown in and while that is not every day, it surely tries your patience for two weeks of every month (or like this month three weeks because her cycle is messed up). So, yes SwellMom, I agree with you.

#13 amydavis

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Posted 23 January 2010 - 05:58 PM

As a mom of a severely disabled child, I do see a difference between my stress levels and that of moms of children with autism. I am speaking ONLY for myself here. When I go to classrooms, or to the neurologist office and observe moms of kids with autism, I am always struck by how CONSTANT their work is. My son can't talk, feed himself, bathe, really do anything for himself. Even with all of that, I still feel that my job is easier than that of those moms. My son is pretty cut and dry. Physically, it's a lot to keep up with, but he is a uber easy going guy and mentally I don't find it all that stressful. Also, his educational needs are pretty easy to assess.


I do see what you are saying. I am a mother of four. My oldest ds has autism, the very classical type of autism along with mental retardation. I also have ds9 who is technically on the spectrum, with a diagnosis of asperger's (although cognitively he is gifted, and his symptoms are mostly social anxiety at this point). My dd5 has a speech disorder related to the cleft lip and palate that she was born with. Cognitively and socially she is fine. My dd14 does not have a diagnosis...although parenting her through her teens is going to give me some sort of one, but that is another thread altogether, LOL!

Matthew, my ds16 with autism, is a sweet child - but parenting him has always been mentally taxing. As he aged, that turned into a huge physical burden as well. I cannot explain to anyone who hasn't lived in my shoes just how stressful my life is. There is nowhere that we can go, nothing that we can do, that does not become overwhelmingly stressful if Matthew is included (which is most of the time). He is now physically stronger than most of us in the family, except for dh. However, I am required to pull and tug on him as if he were a toddler. Going to Wal-Mart becomes a huge ordeal. I may think we are doing fine, and then some sound or sight will "set him off." You then have a nearly fully grown male barging through the crowd, screaming as he goes. I promise you, we do not receive any sympathetic looks. Recently, he soiled himself while we were there. Dh took him to the restroom to clean him up, but Matthew didn't want to go. Dh had to physically make him enter the room. This was physically and mentally exhausting in and of itself. However, someone saw the struggle and called law enforcement. So, added to all of our stress was the embarrassment of being stopped as you shop by two police officers. They immediately saw our son's behaviors and apologized for the incident, but still... Someone who didn't understand our situation could have caused a lot of trouble. Outsiders, who don't understand, feel that he should just stay home. I, on the other hand, cannot simply choose what seems like the easy solution. Matthew has to learn to exist in our society unless I want him to simply be locked up at home. I have to worry about making him as manageable in society as possible so that his years spent here after I am long gone are as good as possible.
I have nerve damage in my right hand and right arm from all the years of physically handling him. I can only tell you that if I am holding onto him when he decides to lunge, it is enough to pull me down. And for the record, I am considered overweight, so it's not as if I'm some teensy person. He has broken every couch we have owned, just from the sheer force of how he moves. There are holes in the walls of his room (and a couple of others) from where he like to "flap" his hands for the sensory input. I have lost count of how many windows he has broken for the same reason. We train workers to do ABA (an educational method) with him, which is how he eventually acquired some language. So, he is teachable. We have a wonderful developmental neuro-pediatrician who has tried several medications with us, yet none seem to do the trick. The behaviors are exhausting. Even when he is in the hands of the workers, it is not stress free. I came home one day last week to discover that he broke the window in the front door and while the worker cleaned it up, he managed to do the same to the bathroom mirror. The next day he broke the bathroom window while with another worker. We were both there, helping him make cupcakes. In a split second, he darted and hit. He moves like lightening - you would have to see it to believe it. We have to rely on these workers for any respite, because our family is not able to manage him. Yet, how relaxing is it when I am away, if I have to worry about what will happen while I'm gone. Also, Matthew cannot tell me how he is treated, so that adds to my feelings about leaving him alone with others. My list goes on and on. I do send ds to a public school to give me time with the other children. But this is EXTREMELY stressful. They do not understand how autism is different from the other things they encounter in special populations. I have had to encounter attempts to write him up for sexual harassment (because he grabs at his crotch in front of others), stealing (because he got someone else's capri sun out of their lunch box)... I had to call meetings with even the principal to explain that Matthew is not cognitively able to understand that removing the drink caused deprivation to another, nor does he understand ownership. I had to explain that he is physically a normal teenage boy with hormones, yet mentally does not comprehend that he cannot touch certain areas if others are around. We have made leaps and bounds in that area...but I dare say most mothers never have to give so much consideration to such a "touchy" subject. He sometimes stays up all night, although thankfully that is not often. Still, if he gets up in the night, he will dump shampoo and any soap to make bubbles. He has flooded our bathroom a few times. He will devour a whole carton of ice cream, leaving the freezer door open all night if he wakes up. We had been locking our side by side fridge/freezer with a bicycle chain at night. However, he recently went to open the freezer and managed to pull the handle off...so...well...I guess you get the picture.

Sorry this is so long. But, I just wanted to say that I agree that autism is different. It is unexplainable to anyone not living it. But it is constant and never-ending. The public is unsympathetic and hurtful. I had one woman tell me he shouldn't be allowed in the Little Caeser's Pizza...(he was young and making vocal noises with his throat, sort of a low grunting noise as a stimulation). Another time a woman said to her friend, within earshot of me, that she couldn't believe I was having another one (I was pregnant with ds9). We had taken Matthew (about 5 at the time) for ice cream while his sister (about 3 at the time) was with grandma. I was holding his hand, he was rocking back and forth and humming. He was happy, we had been driving and listening to music (his favorite). It was a good day actually, having time with him doing his favorite things...yet to society it wasn't such a pretty picture I guess. It still makes me cry when I think of it... The only thing that's changed since then, is that he is older and therefore not a cute little kid. So...it's only getting worse dealing with the public. Once again, sorry this is so long.

#14 LNC

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Posted 23 January 2010 - 06:05 PM

I do see what you are saying. I am a mother of four. My oldest ds has autism, the very classical type of autism along with mental retardation. I also have ds9 who is technically on the spectrum, with a diagnosis of asperger's (although cognitively he is gifted, and his symptoms are mostly social anxiety at this point). My dd5 has a speech disorder related to the cleft lip and palate that she was born with. Cognitively and socially she is fine. My dd14 does not have a diagnosis...although parenting her through her teens is going to give me some sort of one, but that is another thread altogether, LOL!

Matthew, my ds16 with autism, is a sweet child - but parenting him has always been mentally taxing. As he aged, that turned into a huge physical burden as well. I cannot explain to anyone who hasn't lived in my shoes just how stressful my life is. There is nowhere that we can go, nothing that we can do, that does not become overwhelmingly stressful if Matthew is included (which is most of the time). He is now physically stronger than most of us in the family, except for dh. However, I am required to pull and tug on him as if he were a toddler. Going to Wal-Mart becomes a huge ordeal. I may think we are doing fine, and then some sound or sight will "set him off." You then have a nearly fully grown male barging through the crowd, screaming as he goes. I promise you, we do not receive any sympathetic looks. Recently, he soiled himself while we were there. Dh took him to the restroom to clean him up, but Matthew didn't want to go. Dh had to physically make him enter the room. This was physically and mentally exhausting in and of itself. However, someone saw the struggle and called law enforcement. So, added to all of our stress was the embarrassment of being stopped as you shop by two police officers. They immediately saw our son's behaviors and apologized for the incident, but still... Someone who didn't understand our situation could have caused a lot of trouble. Outsiders, who don't understand, feel that he should just stay home. I, on the other hand, cannot simply choose what seems like the easy solution. Matthew has to learn to exist in our society unless I want him to simply be locked up at home. I have to worry about making him as manageable in society as possible so that his years spent here after I am long gone are as good as possible.
I have nerve damage in my right hand and right arm from all the years of physically handling him. I can only tell you that if I am holding onto him when he decides to lunge, it is enough to pull me down. And for the record, I am considered overweight, so it's not as if I'm some teensy person. He has broken every couch we have owned, just from the sheer force of how he moves. There are holes in the walls of his room (and a couple of others) from where he like to "flap" his hands for the sensory input. I have lost count of how many windows he has broken for the same reason. We train workers to do ABA (an educational method) with him, which is how he eventually acquired some language. So, he is teachable. We have a wonderful developmental neuro-pediatrician who has tried several medications with us, yet none seem to do the trick. The behaviors are exhausting. Even when he is in the hands of the workers, it is not stress free. I came home one day last week to discover that he broke the window in the front door and while the worker cleaned it up, he managed to do the same to the bathroom mirror. The next day he broke the bathroom window while with another worker. We were both there, helping him make cupcakes. In a split second, he darted and hit. He moves like lightening - you would have to see it to believe it. We have to rely on these workers for any respite, because our family is not able to manage him. Yet, how relaxing is it when I am away, if I have to worry about what will happen while I'm gone. Also, Matthew cannot tell me how he is treated, so that adds to my feelings about leaving him alone with others. My list goes on and on. I do send ds to a public school to give me time with the other children. But this is EXTREMELY stressful. They do not understand how autism is different from the other things they encounter in special populations. I have had to encounter attempts to write him up for sexual harassment (because he grabs at his crotch in front of others), stealing (because he got someone else's capri sun out of their lunch box)... I had to call meetings with even the principal to explain that Matthew is not cognitively able to understand that removing the drink caused deprivation to another, nor does he understand ownership. I had to explain that he is physically a normal teenage boy with hormones, yet mentally does not comprehend that he cannot touch certain areas if others are around. We have made leaps and bounds in that area...but I dare say most mothers never have to give so much consideration to such a "touchy" subject. He sometimes stays up all night, although thankfully that is not often. Still, if he gets up in the night, he will dump shampoo and any soap to make bubbles. He has flooded our bathroom a few times. He will devour a whole carton of ice cream, leaving the freezer door open all night if he wakes up. We had been locking our side by side fridge/freezer with a bicycle chain at night. However, he recently went to open the freezer and managed to pull the handle off...so...well...I guess you get the picture.

Sorry this is so long. But, I just wanted to say that I agree that autism is different. It is unexplainable to anyone not living it. But it is constant and never-ending. The public is unsympathetic and hurtful. I had one woman tell me he shouldn't be allowed in the Little Caeser's Pizza...(he was young and making vocal noises with his throat, sort of a low grunting noise as a stimulation). Another time a woman said to her friend, within earshot of me, that she couldn't believe I was having another one (I was pregnant with ds9). We had taken Matthew (about 5 at the time) for ice cream while his sister (about 3 at the time) was with grandma. I was holding his hand, he was rocking back and forth and humming. He was happy, we had been driving and listening to music (his favorite). It was a good day actually, having time with him doing his favorite things...yet to society it wasn't such a pretty picture I guess. It still makes me cry when I think of it... The only thing that's changed since then, is that he is older and therefore not a cute little kid. So...it's only getting worse dealing with the public. Once again, sorry this is so long.



Thank you for sharing. I'm so sorry and I understand. :grouphug:

#15 Steph

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Posted 23 January 2010 - 06:32 PM

I have to agree that autism is different. My sister is special needs (CP and host of other things), and I have 2 special needs kids. I used to work with autistic kids. My niece is autistic and my nephew ODD, ADHD and others. And autism is unique despite the attention and support out there. It's a hard hard thing for moms. HUGS to all the moms of autistic blessings! You don't have an easy road!!

#16 Danestress

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Posted 23 January 2010 - 06:44 PM

Thank you for writing this post. I can't even imagine how a bad day must feel for you. Do you have a church family that is supportive?

#17 chiguirre

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Posted 23 January 2010 - 07:37 PM

:iagree: with Amy. My oldest is only 10, but I can see us having days like the Walmart day. Usually he does pretty well in public, but there is always that little something that can set him off and he's strong!

Based on my experience with Special Olympics, I do think autism (and other hidden disabilities that involve severe behavioral disturbances) are more stressful than other disabilities. There are actually very few autistic participants in my area and most of them are high functioning. I have to take my oldest to ds2's basketball practice and I get as many stares and glares there as I do at dd's Upward practice. The only exceptions are the the other autie moms who probably have had a few blow-ups even with their hf kids. I think it's hard to fathom how hard it is to control an explosive child unless you've tried to do it.

#18 amydavis

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Posted 23 January 2010 - 08:35 PM

Thank you for writing this post. I can't even imagine how a bad day must feel for you. Do you have a church family that is supportive?


We finally found a church that was willing to have a special needs Sunday school class. So, yes they are caring and supportive, but they can't handle him. So, we either sit with him in his classroom, or have a worker go with him. They want to provide a place where the children can be without parents, so mom and dad can go to class, but... They can handle the other two children who have different diagnoses, but not Matthew. (This isn't something that has been said to us, you can just tell.) After Sunday school, Matthew sits with us in church, and stays for the first 20 minutes. This is the time where announcements take place, we shake hands, the preacher says a prayer, and we sing a hymn. At this point, children in elementary school are released to "children's church." If we have a worker, they leave at that point with Matthew also (because he would never last through a whole service and sermon.) If we don't have a worker then dh and/or I have to leave with Matthew and miss the sermon.
He enjoys shaking hands and music, so the first 20 minutes are usually ok. However, he has become upset a couple of times where he threw a violent tantrum and actually tried to hit me. The whole church had to wait while the worker and I physically removed him (which was quite a sight, to say the least). We managed to make it to the doorway before he began repeatedly slamming his head onto the ground and screaming. Even though I know they know about Matthew, I can't explain how that feels - and how hard it is to walk back in afterwards.
I am thankful to have found this church; their support is mostly given to us in the form of acceptance (not too many stares). They are kind to Matthew and make an attempt to speak to him, etc. In fact, he is incredibly fond of his Sunday school teacher (and he loves Matthew as well). I hope in time we can manage to have him attend class unattended. But for now, it is a start.

#19 asta

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Posted 24 January 2010 - 04:20 AM

And then you have the spouses of combat soldiers who have children on the spectrum, are on the spectrum themselves, and have other medical issues.

Life is what it is. We either run with it or throw in the towel.

:auto:

Personally, I take the fast car approach. :001_smile:


a

#20 clarkacademy

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Posted 24 January 2010 - 05:04 AM

My son has autism I guess it's a club from all the replies. The work never ends, he is 11 years old and he has never slept through the night in his whole life. He has very few friends because other children do not react well to him. I wake up every morning to a mess he has made in my kitchen because he gets hungry when his meds wear off. My daughter won't have her friends over because he blurts out crazy things. People in public stare at the meltdowns of a child so very old. We spent a day at the magical kingdom he cried the whole day please take me home. One of the other posters stated you don't know it until you live it well you don't. I have no help really. His father can only deal a little at a time with him. I can't trust anyone to take care of him I have had bad expierences with that. I have lost the majority of friends and others who are still my friend mostly have exuses why they don't come over. He complained of a belly ache no tears no crying just said it hurt. I took him to the Dr. who had X-rays he was so constipated his colon had twisted they said another day it would have ruptured. Autism and pain are very weird because he doesn't seem to feel it like other people. We have locks because he will try to leave in the middle of the night. He can only eat certain foods and anything else is just not right. On and on I could say what it is like but noone will ever understand how if feels to live it. People judge and talk but until you are there it be nice if sometimes opinions were kept to themselves. In my opinion it is one of the worse things that society looks down upon and turns their heads. Our children are treated like diseases while we as mothers are pretty much forgotten. I would not trade my son for all the money in the world but life is not even close to the fairytale I saw the day he was born. It is not only our children who suffer we suffer. None of us asked for this yet here it is and we do the best we can.

#21 amydavis

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Posted 24 January 2010 - 10:15 AM

And then you have the spouses of combat soldiers who have children on the spectrum, are on the spectrum themselves, and have other medical issues.

Life is what it is. We either run with it or throw in the towel.

:auto:

Personally, I take the fast car approach. :001_smile:


a


Oh trust me, I know many people have it far, far worse. I hope I didn't seem as if I hated my life. I wouldn't trade it, or my son, for anything. I was only agreeing that autism, compared to other disabilities, creates a level of stress that is difficult to comprehend if you haven't personally experienced it. I deal with multiple disabilities within my immediate family, and then even more within my extended family. I have also worked with various types of children - so, I was just sharing my perspective. It was actually hard for me to type and share the "downside" of my son, because he is and always will be "my baby." So, just for the record, despite all the bad...and there is A LOT of it, he brings me A LOT of joy. As many tears as I have shed about his difficulties and how others treat us - I have shed just as many that were "happy tears." While my saddest memory may be the ice cream shop, my happiest memory is far greater. It will never be able to be fully explained in words...one of those, "you had to be there" moments (that thankfully my husband shared with me)...but I'll try. Matthew loves music - let me rephrase that - Matthew ADORES music, picks up tunes and songs almost as quickly as he moves, lol. Anyway, we were driving through the Blue Ridge Parkway, and it was stunning. Matthew was riding between his dad and me, and honestly we weren't sure what he was "getting" from the ride. Then he began humming, although humming just doesn't really explain it. It was hauntingly beautiful. We turned the radio off, and just sat as we drove, being serenaded the most beautiful background music from our son. It totally "fit" with all we were taking in from our drive, and my dh and I were just so happy to know that Matthew must be "getting" something from the incredible views. We stayed so quiet, fearing that we would interrupt his own song, and we didn't want it to end. How I wish I had brought a recorder with us... Anyway, I promise you, this family seizes joy in every moment possible. I was only sharing the downside because the thread was about that...and because despite the joy, my pain is significant and it felt like an appropriate place to share that side of my life. Thanks everyone for reading my long posts...

#22 asta

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Posted 24 January 2010 - 10:24 AM

I'm sorry Amy - I didn't mean to demean what you were saying. I meant to demean the NYT, whom I tend to think are a bunch of nimrods in general.

Yes to the humming. So often I wonder what symphony is playing out in kiddo's head.


a

#23 JFSinIL

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Posted 24 January 2010 - 11:01 AM

Amy noted "Outsiders, who don't understand, feel that he should just stay home. "

I always figure, when out in public if Joe acts odd and folks start to stare (etc.) "Nuts to you, if you don't like seeing/hearing my kid, you can stop staring or LEAVE!!! " People with disabilities have as much right to be out in public as "normal" folks. I do think people with more visible disabilities get cut more slack, though.

I or another family member is with him 24/7 (except when he goes off to school..which ends in a little more than four years then he will be home 24/7.) As will I unless I can make my 6-ft son go to the grocery store/library/etc. with me. Since he is as much a TEENAGER now as a person with autism, believe me, Mom and Dad are his least favorite people to hang around with :glare:

#24 MamaBearTeacher

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Posted 24 January 2010 - 12:35 PM

I have kids with severe autism and I can really relate to what others said in this thread. I don't think I am strong enough for this though. My oldest is 8 and as he gets bigger and the years pass it gets so much harder. We had a week of no sleep with maniacal giggling and at this point I am feeling very weepy like I am losing it. I've developed physical problems from the stress. My sons are also profoundly gifted though nobody believes that. The WTM approach is great for them and I can use materials at the high school or university level to teach them and they learn amazingly quickly. Teaching them is not hard at all. The hard part is keeping them seated and getting them to stop screaming. This is exhausting. There is no way I could send them to school but it means I am with them all day and my husband helps at night after working all day. We are really exhausted. We have no support at all. My sons worry about their future, they are sad that they can participate minimally in life. It makes me sad because I know they have so much to contribute.

#25 Pink Fairy

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Posted 24 January 2010 - 01:00 PM

I never realized how difficult things could be for moms and families of autistic children. :crying: Thanks for opening up my eyes, and tremendous hugs to all you moms of children with hidden disabilities.

#26 transientChris

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Posted 24 January 2010 - 01:46 PM

Yes I do know how hard autism is because I have seen a few of my friends struggle with their older children. But please be sure to note that families of some other children struggle a lot too. Bipolars also can be wild and uncontrollable. SInce they are not intellectually diminished, a lot of people don't understand. In a way its even worse because when they are doing something bad, they know exactly what they are doing and can be destructive in a very deliberate way. HOwever, if they are medicated or not on a manic high, they would never do such a thing. I only had a sister with this but it was stressful enough. Then there are the parents of schizophrenics who sometimes even lose their lives to the disease. OR how about major depressives whom medication doesn't treat? HOw is the stress of a suicidal person compared to the stress of an autistic? I am so aware that parents of autistic children have very severe stress. I just think that parents of mentally ill children also have severe stress. Theirs is often not as long lasting simply because many mental illnesses usually appear in adolescence or early adulthood. But then you have your mourning happening later. It is a severe shock to find out that your bright, kind , well functioning child suddenly turns out to be severely disabled., if only for periods of time. Let;s not play who has it worse. I acknowledge that many of you have it very hard. I don't have it that hard. But I know that others with mentally ill kids also have it very hard.

#27 asta

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Posted 24 January 2010 - 03:00 PM

Yes I do know how hard autism is because I have seen a few of my friends struggle with their older children. But please be sure to note that families of some other children struggle a lot too. Bipolars also can be wild and uncontrollable. SInce they are not intellectually diminished, a lot of people don't understand. In a way its even worse because when they are doing something bad, they know exactly what they are doing and can be destructive in a very deliberate way. HOwever, if they are medicated or not on a manic high, they would never do such a thing. I only had a sister with this but it was stressful enough. Then there are the parents of schizophrenics who sometimes even lose their lives to the disease. OR how about major depressives whom medication doesn't treat? HOw is the stress of a suicidal person compared to the stress of an autistic? I am so aware that parents of autistic children have very severe stress. I just think that parents of mentally ill children also have severe stress. Theirs is often not as long lasting simply because many mental illnesses usually appear in adolescence or early adulthood. But then you have your mourning happening later. It is a severe shock to find out that your bright, kind , well functioning child suddenly turns out to be severely disabled., if only for periods of time. Let;s not play who has it worse. I acknowledge that many of you have it very hard. I don't have it that hard. But I know that others with mentally ill kids also have it very hard.


The saddest part being that autism doesn't kill, and mental illness does.

Severe illness in general is just hard.


a

#28 swellmomma

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Posted 24 January 2010 - 05:30 PM

My son has autism I guess it's a club from all the replies. The work never ends, he is 11 years old and he has never slept through the night in his whole life. He has very few friends because other children do not react well to him. I wake up every morning to a mess he has made in my kitchen because he gets hungry when his meds wear off. My daughter won't have her friends over because he blurts out crazy things. People in public stare at the meltdowns of a child so very old. We spent a day at the magical kingdom he cried the whole day please take me home. One of the other posters stated you don't know it until you live it well you don't. I have no help really. His father can only deal a little at a time with him. I can't trust anyone to take care of him I have had bad expierences with that. I have lost the majority of friends and others who are still my friend mostly have exuses why they don't come over. He complained of a belly ache no tears no crying just said it hurt. I took him to the Dr. who had X-rays he was so constipated his colon had twisted they said another day it would have ruptured. Autism and pain are very weird because he doesn't seem to feel it like other people. We have locks because he will try to leave in the middle of the night. He can only eat certain foods and anything else is just not right. On and on I could say what it is like but noone will ever understand how if feels to live it. People judge and talk but until you are there it be nice if sometimes opinions were kept to themselves. In my opinion it is one of the worse things that society looks down upon and turns their heads. Our children are treated like diseases while we as mothers are pretty much forgotten. I would not trade my son for all the money in the world but life is not even close to the fairytale I saw the day he was born. It is not only our children who suffer we suffer. None of us asked for this yet here it is and we do the best we can.


See but this sort of thing is not limited to Austism. My son is not on the spectrum yet you just described my life. Today I picked the kids up and we went to value village. While there ds had a meltdown because I caught him trying to steal, he punhced me in the face and took off. I head up to the till get everything rung in, am about to pay and he shows back up and punches me again. It took a moment and a scuffle but I got him restrained and tossed him in the back of the cart. The clerk tells ds she is going to call the police to arrest him for punching me. This sets ds off more, he bolts out of the store and is running down the street, I lose sight of him at a corner, no clue where he has gone. I get the other kids buckled in the car to have them contained and safe. Ds comes back, sees clerk coming out of the store with a phone and bolts again. Eventually he came back but in the meantime I have spent 45 minutes just trying to leave with him disappearing. We have had several more meltdowns today since coming home, and have only been back for 1.5 hours. I have no friends left because they don't understand him. I have had dr's, shrinks, and teachers cast him aside and claim he will be in prison for the rest of his life, or that he will never succeed in life. Due to his behaviours(and dd's) I have a SW interferring in my life. And the list goes on. The stress is high no matter if it is Austism or not. My dd is best friend's with an Autistic child. She is a med/high functioning, her brother has classic autism. They have workers coming and going every single day, aides at school, extra help etc. I get a SW and threats. School claimed that they were not severe enough to get help yet they could not function in a classroom setting. Dr's refuse to do treatment, meds are not enough for ds and not working at all for dd, so no help there. No extra services to help kids like mine, just a lot more headaches. If I could tell people he had autism there would be a lot more sympathy. Try telling someone he has conduct disorder along with his other list of disabilities. I have been told by the kids shrinks that conduct disorder is considered to be one of the most severe mental illnesses a child could have. Try raising 2 kids with it. Being told that one of them will never be normal enough to lose the label. That when he turns 18 the title changes from conduct disorder to antisocial personality disorder which is the new name for psychopath. It is not a matter of which disease/disorder is worse but an acknowledgement of the severity of both and the level of stress that places on the parents. I wish my son was autistic, at least then I would only have to worry about accidental self harm, not that I am raising the next serial killer.

#29 grace'smom

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Posted 24 January 2010 - 08:24 PM

:grouphug: Thank you all so much for your willingness to share such intimate details of your lives with disabled children. Your courage in life is amazing and I am keeping you all in my prayers. I feel like nothing I can say after reading this will be good enough, but I just wanted to say how grateful I am that you chose to share your thoughts. :grouphug:

#30 Natalieclare

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Posted 24 January 2010 - 08:26 PM

Ladies,

I wish I could stretch my arms around every one of you. And give you a bit of a break, too.

:grouphug::grouphug::grouphug::grouphug::grouphug:


May untold fathoms of grace and strength be yours.

#31 Kathleen in VA

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Posted 24 January 2010 - 10:23 PM

I never realized how difficult things could be for moms and families of autistic children. :crying: Thanks for opening up my eyes, and tremendous hugs to all you moms of children with hidden disabilities.


:grouphug: Thank you all so much for your willingness to share such intimate details of your lives with disabled children. Your courage in life is amazing and I am keeping you all in my prayers. I feel like nothing I can say after reading this will be good enough, but I just wanted to say how grateful I am that you chose to share your thoughts. :grouphug:


Ladies,

I wish I could stretch my arms around every one of you. And give you a bit of a break, too.

:grouphug::grouphug::grouphug::grouphug:


May untold fathoms of grace and strength be yours.


:iagree:

#32 MamaSheep

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Posted 24 January 2010 - 11:27 PM

I wasn't going to say much in here, as I know my son values his privacy. He's on the "higher functioning" end of the spectrum, which in many ways is a huge blessing, and in other ways only brings up a whole other kind of challenges. But I just have to say this. It IS hard. There ARE tears, and sleepless nights, and bruises and bite marks and blood and breakage, and rips and frustrations, and humiliations, and desperate moments when you haven't seen that knot you tied in the end of your rope in weeks. But I have also noticed that for us, at least, there are compensating moments--moments of clarity, of beauty, of insight, moments when you feel God's presence in your life in ways that would be impossible if your heart had not just been shredded sixteen ways from Sunday and left you open to that special kind of connection. You notice little things that "normal" families take for granted and you hold them and cherish them like little glorious diamonds set against the dark velvet times. You live more intensely in the good ways, as well as in the bad ways. It IS life in the trenches, but God is in those trenches with us, and after all is said and done it is, and will be, worth all the tears--both those of sorrow and those of joy. I am grateful for the experience.

Edited by MamaSheep, 24 January 2010 - 11:29 PM.