Autism Speaks: From the Town of Bedrock
Forcing Flu Shots on Health Care Workers: Who Is Next?

Autism, Stress and Can We Prevent Tragedy?

Puzzle help By Julie Obradovic

The first time I heard that someone had killed their child with Autism was several years ago. I was actually surprised there weren't more murder-suicides by that point in time, but I was certainly thankful there weren't. As I thought about the incredible stress so many people found themselves under, how isolated and desperate they were, and how completely overwhelmed and exhausted they were, it seemed almost inevitable that someone would lose it. Unfortunately, it has been inevitable. Parents are indeed killing their children with Autism.

I realize these murders induce tremendously strong feelings. Many people believe that absolutely under no circumstance is there any excuse for such behavior, and the perpetrators of these heinous crimes deserve not an ounce of pity or sympathy. Children by no means come with any guarantees, and at no point do we simply get to kill them because things didn't go according to plan. I get that mentality, I do. But I also have a deep desire to understand this behavior so that we can start to prevent it more effectively, if that's even possible. I'm afraid that if we simply shame or condemn parents who are having such violent thoughts they may be more reluctant to reach out for help. It's the most unnatural behavior in the world to kill your child. Clearly, clearly, something else is going on here.

One thing I have noticed about these acts is that they always fall into one of two categories: a planned murder-suicide that either kills them both or almost kills the parent; or a sudden, horribly violent attack with no attempt on the parents' life, but one that leaves them in a comatose and suicidal state anyway. This tells me that the parents are not acting out of selfishness, but rather agony and a very distraught state of mind. In a planned murder-suicide, the parent appears to feel obligated to also end his/her own life. They aren't murdering the child to run off to Mexico or go and finish grad school to further their career. They simply want the pain to stop for both their child and themselves and see no other way out. It's total and complete desperation. And in the instance of the violent attack, such as the recent stabbing, there's perhaps no thought what-so-ever. They just snapped.

Now, don't get me wrong, I'm not privileged to these peoples' state of mind, and I'm no doubt speculating. But as a mom who has suffered from depression, one thing I do know is that this was the hardest part of the Autism experience to share with anyone. I never felt comfortable talking to anyone about my feelings, especially since I feared I would be perceived as extremely selfish. There was no time for focusing on me, and really, I didn't have any idea how to manage the intense and profound sadness I was feeling anyway. It was better just not to deal with it at all than let it come spilling out messily with no way to clean it up. I always said I'd deal with it later. But funny thing, later always came out as anger and being ashamed of that only made the feelings worse, the perpetual cycle of guilt, shame, and pain accelerating in my own private hell. Thankfully, I never spent too long in one of those horrible places, but still, I remember that pain well. It was all consuming.

I wonder if as a community we are helping each other enough. When we go to conferences and support group meetings, our focus is almost exclusively on our children. Our lives are consumed with addressing their medical needs, educational needs, therapeutic needs, safety needs, dietary needs, social needs, financial needs, legal needs, and more. Collectively we have done an admirable job of networking and researching and advocating in order to do these things more effectively, and every so often I have seen sessions that focus on keeping our marriages in tact. However, I would argue we have done a horrible job helping ourselves. We know logically that you can't be good to anyone else until you're good to yourself first, but after meeting and befriending hundreds of Autism parents, I can't think of any of them that have ever really put themselves first. Not a one.

The truth is, we need the help. We need better strategies for dealing with the stress Autism brings, creating a support team around us, communicating our emotions to friends and loved ones, getting and asking for respite care, and more. We need time to take care of our physical health, our nutritional needs, and honestly, just to get some sleep or have a good cry. Perhaps we could allocate at least some of the money from our support groups and federal funds to start some sort of Parent Wellness movement. We need professionals to help educate us about the cycles of grief, anger, depression, and desperation that we repeatedly and routinely go through. We need these professionals to become more aware of the profound issues we are facing so that they can better address our needs and help us identify the psychological warning signs that we may not be heeding. We need them to spear head community education on our behalf to rally our neighbors and loved ones around us. I guarantee they really have no idea, as so many of us simply don't share it with them. And most important, we need to make a safe place for parents who are feeling this desperate to reach out for help without judgement or persecution, like a 24 hour hotline. If these resources already exist, we need to emphasize their availability, encouraging and extending their reach as far as possible. And if they don't, now may be the time to create them.

Autism has reached critical mass, and it is an unprecedented crisis unlike anything our society has ever seen. I urge our community to put the needs of our children first once again, but this time, by uniting to take better care of ourselves. I certainly don't have all of the answers, and I am well aware of the limitations that exist that prohibit us from taking better care of ourselves, but together, I am confident our community can do anything. If we make it important, it will happen. The better we are, the better we can be for our kids.

Please leave your ideas in the comments section about what you would like to see in terms of effective support for parents from friends, loved ones, neighbors, and more. What do you think we could be doing better to help each other? What resources would you like to have in your own life for managing Autism?

Julie Obradovic is a Contributing Editor to Age of Autism.

Comments

Joanna

Thanks for this Julie. No one knows what it is like to walk in anyone's shows. I've been thinking a lot about this too. I think many of the murder suicides might have started out as a suicide plan, followed up by the reality that there would be no one left to care for the poor child. I wish all of these families peace.

Theodora Trudorn

To Aspie:

I have been generally a loner for most of my life. But I desired friends. However I was brutally picked on at school, and isolated when not being bullied by both teachers and students.

I needed people whom I could trust that I could talk to. But I was so akward at the time that no one wanted to. I had almost zero facial expressions till late highschool (learned to act out externally what I was feeling internally by watching and mimicking others, but this doesn't occur automaticly. It takes a conscience mental effort to do this)

I spoke in monotone most of the time. I didn't really understand my peers, and got along far better with middle aged adults that with anyone else.

I HAD NO ONE!!!! I was going through a nightmarish existance at home (which caused the PTSD)and at school people played head games with me that I did not understand at the time. I was extremely lonley, sad, depressed, and developed a social phobia that was to last for many years.

My meltdowns were constant and very violent. There was alot of self injury done in meltdown. Rage built up in me over a long period of years till I became detached from the world around me. I was put on Zoloft and became an unemotional robot.

I was finally diagnosed with Aspergers when I was 18 and in my junior year. My aunt immediately got me help through Burrell and the state DMH system. It is because of the years of therapy, hands on teaching, and help I recieved from them that I got out from under that dark cloud and became as sucessful as I am now.

At age 25 I live on my own, I now work for DMH as an advocacy specialist, with a specialty in transition programs and asperger's syndrome. I live in my own place with my two precious kitties, and have my dear better half, who also has AS, who's life is errily simular to mine.

And my story is not nearly as dark as some of those with AS whom I have met, took under my wing, and helped through the two Aspie groups that I started and run. Parents call me every day with horror stories, with themes I have discussed earlier.

Most of these parents can not get through the DMH system to get access to the programs thier children so desperatley need. So they sit there day after day, like I have described earlier. My two groups, one an advocacy group made up of both parents and young adults on the spectrum, the other a social group with developmental goals, are the only thing these guys have for help!

I'm all thousands across my state have. They are invisable otherwise. I carry a massive burden, and I will fight to get the difficulties we have faced recongnized and get my fellows the help they so desperately need with everything within me!!

I found I had a real talent for politics and have established quite a network of political allies that I use to this end. I have no idea if this answers your question.

I KNOW what I have is a disability. To think otherwise is to be in denial, and I am a realist. The first step in moving foward is realizing there is an issue. Until we realize this and act accordanly, more and more will continue to fall through the cracks.

Aspie

Theodora, are you naturally extraverted? Maybe I'm lucky that I was always an extreme introvert. Although I had some friends, I spent more far time with my video game console than with any of them. If you have Asperger's as well as an extraverted temperment, it must be very lonely. I hardly ever get lonely and only need a few conversations to keep me socially satsified. I'm very satisfied being alone unless I have nothing to do. When I do talk however, I can converse with friends on the phone for several hours at a time. I prefer the phone because it's purely verbal, with no need for eye contact or nonverbal body language. While it's easy for me to communicate on a computer or over the phone, it's more difficult when you have to use eye contact or body language. It's hard for me to interact with people and it's hindered me a bit.

Asperger's has given me both disabilities and super abilities. I am socially far behind but can instantly calculate mathematical solutions. In many cases I think too far ahead because the solution intuitively appears. I once loved doing calendar calculations. In higher math classes, however, some instructors saw that as a problem. I'm behind in my motor skills but ahead in my verbal aptitude. I also have an excellent memory and an ability to learn at a fast pace. It's much easier for me to understand numbers and computers than to spontaneously interact with others. It's simpler for me to obtain what I want or need than to randomly converse. At least with the former you can plan and strategize.

Benedetta


AWEtism Mom;
Don't be too hard on your church, maybe they thought you were having a spiritual moment with God and didn't want to interfer?

Well you never can tell!!!

Church is like everyplace else - it is full of good people but it takes time to make friends, for them to get to know you, for them to lose their shyness. Give it time, they sound like they are trying with their shadow program for special needs children.

I did not make a lot of friends at our church untill I taught bible school, after that it all opened up and there were lots of friends---- small church though - so I would not say they were much on support for special needs and all, but my kids sure had a lot of fun at weiner roast, egg hunts, hay rides, bible school and with me right there to watch and see what was not right, what was right, and what to work on. It was great for my son's social skills too, esp with me there to see how he did.


Benedetta

Claudine:
Sounds like you are a very good person. They know your views - well hummm they may someday come around and wake up.

Claudine Liss

PS My friend does not sitting around blasting those who blame vaccines..it's not personal. I also have another friend who never blamed vaccines for her child's ADHD....she too knows my views. Her child is having a lot of problems, her home life is hell...she is finally seeking help outside of mainstream medicine, I was very annoyed with her for years that she was not thinking out of the box, finally I dropped my annoyance and accepted her refusal..a few more bad situations and now she is open (thank God)...I have stood by her and nudged her to detox etc...I don't know what I am trying to say...just that all of this is so hard..I just want to be there for the people I can help regardless of their vaccine views...so many are on the edge. I fully blame our medical community. I mean come on!!!!

Claudine Liss

Benedetta,
I agree with you. Regardless, I can't go there with my friend and I just can't write her off. Her life is really tough. I am just there as a friend to help out the best I can. I am the same with my friends who have ADD/ADHD children. Their lives are tough. They all know my beliefs.

Theodora Trudorn

I know Kim. I appreciate all you guys do here. To act like AS and autism is not a disability is just plain stupidity in my opinion. To not expose the realities of the sitaction and to not help these kids is criminal.

I get upset however with those (and sometimes I do see it on the site, though I know many don't mean harm by it) who marginalize those with AS and the monumental difficulties we face. I have heard time and again that I don't really have autism that I'm just quirky and that those with AS don't really have a disability, and it riles me and burns my heart! (I hear it from the grapevine everyday on various sites)

I don't like it when misguided self advocates, not always intending anything bad by it, tell me that there is nothing wrong, that it is a personality difference. Such things keeps those from getting help who so desperately need it!

That is why I appreciate those here who seek to show the reality of the struggles of those with autism. I feel it is my job to make visable the invisable, those of us with AS. I am very flattered that I am highly thought of here and I hope to continue to partner with parents to make the realities known. :)

I thank all of you!!

Benedetta

Claudine
"She is very angry towards the whole movement that blames vaccines"

So she thinks that we have alienated the medical community because we saw what we saw?

She is angry at us?

I am pretty tired of people being mad at me for noticing my son having a stroke right after his DPT shot.

I know it is not your fault

Stagmom

Theodora, thank you. We try every day to show the reality of autism so that everyone around you CAN understand how hard you work every day. You have my utter respect and admiration. It isn't our intention to insult you, I promise. Autism at all levels is a challenge. That said, we will not allow those self-advocates who teach that treatment and prevention is not desireable or that vaccine injury is unrelated to autism to go unanswered. Every person has a valid story - they try to erase our children's stories and we'll always push back against that.

You're a welcome commenter here. Thank you. KIM

Theodora Trudorn

Please don't insult all of us with AS. It can be extremely dibilitating!! You have no idea what I go through on a daily basis just to appear acceptable to society and to get along. It is exhausting and very draining. And this is from someone with AS who is sucessful!!

Because I, unlike many of my peers, got the right help at the right time! So many of us don't. Many of us end up behind closed doors, invisable to society. We lock ourselves in tiny rooms, where maybe our only link to the outside world is a computer, usually in a parent's home. We sit there, year after year after year, not knowing what to do.

Difficulties in social interactions can be so severe they result in social phobia and many can't even come out of the house, let alone hold a job amongst fellow employees!! To be fair, I am not talking about all of us, but I get calls from desperate parents every single day about thier adult child with AS who is having violent mood swings and dark depression because they feel absolutely helpless and no one will help them!!

I am a self advocate. But I speak for what I know. I advocate for all of those who like me have AS, who fall beneath the cracks by the THOUSANDS in my state alone!! The picture is disturbing, and I will fight until my last breath to change this reality for us. Most of us have so much potential!! We are talented, smart, and when not under stress and depression, wonderful, friendly and open personalities!!

Please stop grouping all of us together with those who self diagnose! It is not helping and it doesn't speak to the reality of the invisable, who suffer day after day, in such lonliness that it would break your heart to see it.

Thank you!

Aspie diagnosed at age 18 by nuerologist Dr. Askenosi.

Claudine Liss

Julie,
My son was so ill as a child with asthma and sinus issues. He was miserable and I was miserable. Each time I read of a murder/suicide of an autistic parent/child my heart breaks. I know how awful I was feeling when my own child was so ill and he was able to speak, his behavior was tolerable to a point, bottom line - he had issues but they were nothing compared to most autistic children and I was a wreck. No, I never thought of killing him or myself, but it was taxing on all levels. I have a friend with an autistic child, she does not blame vaccines...She is very angry towards the whole movement that blames vaccines....Regardless, I am alway there for her...I know the stress she and her entire family are under......she's a tough cookie and when friends get annoyed with her...I always tell them to give her a pass, that they have no idea what she deals with on a day to day basis.....

Aspie

To L Land: It's very typical of you to dismiss the thoughts of autistic adults. It's quite likely you think we were all self-diagnosed. I was formally diagnosed in my adolescence. You tell us we can't speak for your son? I could understand him more than most NTs could even fathom.

Henderson

One of the best pieces of advice I ever got on one of the yahoo boards years ago was someone said - take a walk, take time for yourself.

It took YEARS to finally do this. But, I finally did (much to the betterment of us all).

Now, I walk my dog (purchased for the dual purpose of my son and forcing me to take long walks). And, now I do Tai Chi. LOVE Tai chi - mindful meditation - you can't think of a thing while doing the moves and controlling your breathing. I end sooooo clear, so relaxed, so energized (and am better at home).

This was excellent advice - sadly, it took years to act on it.

Julie McAllister

Angie, my friend Lisa just forwarded this article to me. I'm the one that can be found at www.specialmomsheal.com. I am interested in helping to set up this hot line as well, whether with AoA or if they're not able to, through Special Moms, Special Healing. I've had this on my brain for some time now and your Google number idea just hits the nail on the head. I want to explore getting it started. Please come to my web site and click on Contact and send me an e-mail.

Julie, what a wonderful article!! Everything you wrote about is exactly why I started Special Moms, Special Healing and am planning the conference for April, 2011. The conference is completely focused on mothers of special needs children (not just autism as I think all mothers of special needs children go through the exact same issues with not being able to talk about the extreme challenges). The focus is not on the children, but on self-care for the mothers. Most of the presenters are mothers of special needs children themselves.

I suffered from severe depression myself and hate the idea of anyone else going through what I went through. Thank you for using your voice to put this subject out there.

Here is one of my mantras and the basic theme of the conference: Love Yourself as Much as You Love Your Children.

Julie
Son, Age 6, Asperger's Syndrome
Son, Age 3, Multiple food protein intolerances

Christine

I am the mother of a mid level functioning little boy with ASD. Unfortunately he wasn't formally diagnosed until the age of 4. He just turned 6. We didn't start intensive therapy or biomedical until about a ear and a half ago. The therapy has helped A lot and the biomeds have cleared up his horrible GI problems, but he was still tremendously anxiety ridden and an emotional wreck. We chose to try medication and had to go through several until finding the right ones. They have helped my son so much! They haven't taken away the autism, but they have made things so much better for him and us. I believe the combination of everything we have done has given my entire family a better quality of life. NEVER SAY NEVER about medication. We shouldn't be judgmental if a parent opts to go that route. You do what it takes to find the right answers for your child. In addition I would like to say that I am fortunate to live in a big city with lots of resources and we make a nice living. With all of those advantages, I have often found myself falling to my knees in despair and depression. Any breaks away are just temporary relief. The emotional wounds compounded by the lack of sleep and worry about the future are unbearable at times, but like all of you I soldier on. I know I have it good, if that is possible when it comes to dealing with this. A loving involved husband. Great therapists. Financial resources. No other children to care for. Even with my awareness of these things, my pain is my pain. We MUST support one another and not compare who's pain is worse. Were all hurting. Were all exhausted and were all doing everything within our power to help our kids. These parents and of course the children they have harmed or killed should have our sympathy. That doesn't mean we condone it. It is tragic on so many levels. The isolation and despair that comes with this is indescribable. We all need to take a look at each day and the help that is available to us and utilize it. It is hard to ask friends or family for help. You must do it to survive though. Even if your child is so severe that you can't leave them, you can have someone come to the house so you can go outside and take a walk or go to your room and lie down on your bed with some headphones to relax. It will feel awkward and hard at first but will get easier as you reach out more often.
My heart goes out to all of the other moms and dads dealing with this.

Lisa

I have a friend, a wonderful strong, bright woman, who is addressing this point. We don't know what to do for us, nor how or when.

She is even holding a conference next spring for mom's of special needs kids and we hope to teach moms the importance of self care, and how to go about doing it.

I hope this starts a trend of mothers getting the help they need to not only survive, but thrive.

See here for her blog, story, and more info:

http://specialmomsheal.com/

Angie

I really want to work on a proper response to this article (GREAT WORK AGAIN JULIE!) when I have more time later tonite (hopefully)...I only have a quick second now so I thought I would at least post that at TACA's website, they have an online chat feature that is 'manned' a lot of the time, in face everytime I have been to TACA's site, I have seen that there WAS someone ready and willing to chat...and I believe that they are there to answer questions, and I believe that they are all parents/families in the Autism communities, all who have 'been there done that'...

I used the chat once, I had an absolute MESS of a day, everything that could have gone wrong DID go wrong, including our one and only family vehicle...I originally went there to ask if they knew of any grants/help for families in immediate crisis but ended up being able to also vent and get some needed support and I felt SO MUCH better...

A hotline, or even expanding the chat to advertise/offer more 'support' from TACA would be a GREAT THING!

I see Lisa has said that TACA has tried to get a hotline passed in the budget....have you guys looked into 'google voice'..its a FREE service, you can get a FREE phone number...and then that number can be forwarded to other number(s) and you can change the numbers/make a schedule and change that schedule as often as needed...ALL FREE, including FREE transcriptions of your voicemails sent to one or more email addresses (that you can also change as needed)...SO, what if you got a FREE google number, where, volunteers, like those who 'man' the chat feature, then can have the free google number (you can even try to spell out/request a specific number too) the person needing the support can call the free google number (and if not a toll free number, many many many cells now offer free nationwide calling too...and heck you can even forward the toll free TACA number if you have it to the google number which will transfer calls to free to whomever is the volunteer at the time).....
ALSO, although I just signed up and started researching just how google voice works, I believe that when someone calls the free google voice number, and it transfers the call to another number, if the number it transfers too is a cell number, that those calls DO NOT take away any incoming minutes from your cell plan...
So, if it works like it says, it wouldnt cost ONE PENNY for TACA to set it up, NOR would it cost any volunteer any cell minutes (I believe that it doesnt apply to prepaid cell services, but I havent looked into that specifically so it might or might not also be free to prepaid cells...)...

Then all would be needed would be a volunteers to 'man' the line, and then a volunteer to be the coordinator who would make sure the phones are always 'manned' and then the coordinator would also be responsible for changing/scheduling the google voice number to transfer to the scheduled volunteer (and from what I have read, you can 'preschedule' the whole week at once, to mean that you can forward the google number to any one phone at any one time...OR even MULTIPLE phones to the one number...so lets say TACA's business hours are till 5 or 6pm, you can forward THAT number for free to your google number, then the google number would forward to your volunteer along with any calls that come directly to the free google number...
AND you can have the google number ring to more than one phone number too, so if two volunteers overlap the first one to pick up gets the call...

its really a GREAT service than can be used for so many different things, and I think this would be the PERFECT thing to do AT LEAST until a budget for it would be passed...BUT then again, IF this works out, then there wouldnt be a NEED for any money and that money can go towards helping more families!

Ok, so I said I only had a second..LOL! I do have other thoughts/opinions about the subject matter that I need to think about how best to get my thoughts across, and it takes more 'thinking' time...so I will write more later about that...

But had to add this suggestion about someone being able to the TACA chat for questions/support...but also the idea of the FREE google voice number/info...

IF TACA wants to try to set this up, I would be MORE than willing to help set it up and/or volunteer to work as the coordinator as well as a volunteer support person....if Anyone from TACA isnt interesting in working out a hotline this way...what about AoA, having an AoA support hotline like this? if AoA wants to pass doing it this way, i have no issue with seting it up and just doing it as a group of us parents..we all need support and I am sure that even if I volunteered to help support others, that there will probably be a time that I too would need to call into the line and still get support from others just like us... ya know?!?!

Thoughts?


Thanks!
Angie
Mom to Ethan, Alex, and Megan

Theresa O

"I wonder if as a community we are helping each other enough." Julie, this is an incredibly selfless sentiment. The parents on this site amaze me every day with the way you reach out and help others, even in the midst of your own challenges.

I wonder, though, if another piece of the puzzle is making charitable organizations aware of the needs of the autism community, so that you can get your share of what's out there from people who want to give.

One specific organization that comes to mind is Key Club, the high school arm of Kiwanis. Every year or two, Key Club International comes up with a "Major Emphasis Program," which is supposed to guide the efforts of local Key Club chapters. Each chapter continues to do its regular volunteer work (serving at soup kitchens, visiting nursing homes, etc.), but also makes a special effort to donate time and money to organizations that are tied in to the Major Emphasis Program.

This year, the Major Emphasis Program is "Live 2 Learn," so Key Club chapters all around the world are doing extra work with mentoring, tutoring, etc. Although it's possible that autism families can seek help from local Key Club chapters through projects connected to this Major Emphasis Program, I think the best move is to campaign for autism charities (particularly those providing truly basic needs, like the respite care that is so clearly needed, judging by the comments I read on this site) to be the Major Emphasis in a future year.

I think that this would have to be part of a coordinated effort, with several autism advocacy groups working together to ask Key Club International to consider their cause. I know there is a lot of disagreement over the uses of the money donated to (for example) Autism Speaks, so perhaps it would be best to focus on a few really non-controversial initiatives that several autism advocacy groups pursue together. One example that springs to mind is AWAARE (http://awaare.org/), the autism wandering initiative. Kids need LoJack; Key Clubs can fund-raise so parents don't have to spend more out of pocket. Doubtless, there are other initiatives that are non-controversial and would bring real help to lots of families affected by autism. Having multiple autism advocacy groups put all these projects into a request, and signing it together, would likely make a strong case for becoming a Major Emphasis Project for Key Club International.

You're up against big competition, including (IMHO) flawed "charitable" initiatives like UNICEF vaccination campaigns, which so frequently get funded by volunteer organizations... but I think it's possible to make a really compelling argument as to why Key Club International (and other organizations--I only named the one I used to work with in high school) should focus its volunteer and fund-raising efforts on projects benefiting families affected with autism.

Just throwing that out there. Sorry to ramble on and on, but I think it would be great if groups that already want to do good could be made aware of the severe plight of many families right in their own backyards. You do so much to help each other. It's time to ask others to pitch in.

Son in Recovery

When my son has a bad string of days I sometimes think about taking my own life... but then who would finish his recovery?? His bad days are few and far between now - thank goodness! It's hard, especially when all our close friends left once we received the diagnosis and my family is over an hour away. Thank goodness I work full time and have to travel 2-3 times per year - it's the only break I get. I don't know how I feel about these actions - I know that folks are stresses and can understand the frustration and loneliness...it is very sad.

L Land

Tara,
Autism does disable my son. Autism affects our whole family because of his inabilities to care for himself, to communicate, and go to school or work. I question the accuracy of your statistics on percentages of children that gain communication skills. I also think that you are confusing your unique personality and identity with the disability/condition/disease of autism.
To use an analogy, you (and the other "Autistic Self Advocates") have a little bit of a sunburn but my son has third degree burns. The conditions are totally different, the treatment is totally different as is OUR reality. People with sunburns don't compare themselves to people with third degree burns.
Please don't compare yourself or try to advocate for children when you do NOT understand what is disabling to them.

Lisa @ TACA

We have been trying to fundraise for years on a hotline. Have it in a proposal and have presented it 2 dozen times.

It's not been funded yet so we do it daily on a shoe string.

gammicca

I wasn't going to touch this other than to say supports need to be put in place. But as a mother that has had to literally lay across my son's body while he tried to attack me, bite me, had previously knock my teeth out, came close to causing car accidents, pulled gobs of hair out, etc. I feel we are subjected to things like those in the military, but almost worse. We need to look at this because it is a crisis children and their parents are dying. When you see the horrors of placement facilities, the abuse and victimization, when you are faced with not knowing what will happen, when a mother and care provider themselves have been killed by their children, what is a community to do?

If you say you cannot imagine doing this to your child you are lucky you've never been in that place. Really because it's not a good place and I've interviewed parents that didn't want to be there, and it does happen immediately, and often cannot be controlled. That is what crisis can do, especially after years of insidious trauma.

We need to bring light to this, show all aspects, and saying you wouldn't do it only gives power to those that say this is a small segment of what is transpiring. It is not, it is more prevalent than folks think, but disclosing also is just not possible in most instances and we do need to think of better ways to get this beyond being marginalized because innocent lives are being lost and we are not finding out the whys for prevention and to gear support where needed. I did stop saying I would never do such things because of course folks will readily agree and move on. I've replaced it with I want to know why these things are occuring because we need prevention and to stop it.

I also don't impose my views on anyone and Juila I appreciate this article very much and others please know your efforts are appreciated. But when I sit at an international conference that addresses, violenence, abuse, trauma and there is very little if anything said about this, that is bothersome. We will not get the help we need until we address what that need is and then attach that support/service/intervention to it in my mind.

AWEtism Mom

My apologies, I see my post has several typing errors, but the most glaring I cannot let "slide!" I wrote "thanks to biomedical intervention for my children, whose behaviors have NOW gotten better, this darkness is now behind me." I accidentally typed "not" instead of now! A VERY important word!

AWEtism Mom

Even in my darkest hour I would never have fathomed ending my children's lives, but I have fantasized ending mine (although I doubt I ever would). Thanks to biomedical intervention for my children, whose behaviors have not gotten better, this darkness is now behind me. I have no family in the state where I reside and my friends, one by one have moved away. Most people "don't get it," including even my workaholic husband. "Just go to the gym and workout" he tells me and "put your kids in the daycare." Yeah, right, they aren't equipped to help watch autistic children. "Hire a babysitter." Yep, not too many babysitters out there that can watch autistic children properly, let alone two and one typical that is extra high energy. The one lady I did find to help that was qualified was $20.00 and hour, kind of cost prohibitive! Then I tried the respite agencies and went through MANY unqualified worker, found one that I thought was great only to realize she was stealing things from me (DVDs, all of my typical child's piggy bank money we'd saved for years ($75.00), food, toiletries, etc. You think you are going crazy! Where IS that new bottle of shampoo I just bought? What happened to my Disney DVDs? All this, not to go out for drinks and dinner but to just get a shower ONCE A WEEK, clean the house, or work on getting medical reimbursements/paying bills! There is NOTHING there for us for support. They have "seminars" around town here for all kids of things offered for special needs parents, but guess what? You cannot bring your children! Or they say they will "provide childcare" and then they have ONE adult for fifteen kids. Unrealistic. As far as sympathy, I usually get a "I hope things get better for you" from mom's of typical kids and advice that would never work in my situation. I've had family visit (from my husband's side - out of town), they take one look at my disarrayed house and say "you need help." Yep, stating the obvious always helps (LOL). I did reach out once, in the depths of despair where I really wanted to do myself in and I called the Boys Town hotline, it was a guy that answered and he helped me feel better about a lot of things. I also finally found a church that helps serve special needs children (by providing shadows during Sunday school), but one day I had a particularly rough morning getting the three kids to their prospective classrooms and I collapsed on a bench sobbing and not ONE person at the church came to provide me comfort, they instead just walked past me (as if they did not see me and I was sobbing pretty hard). Makes you wonder, right? Even in my most stressed out mode, I will take the time to ask a tear-stained individual if there is anything I can do to help them! Sometimes I feel like I am floating on an island all by myself, its getting better as my kids get better, but I am still floating. . .

Tara Marshall

Of course the parents need more support. But they also need REAL information on children who have recovered or gained skills from therapies, not just more "autism awareness" garbage that shows the lowest functioning children at their worst.

They need to know that with intensive Early Intervention, the latest studies show that between 75 and 90% of Autistic children develop useful VERBAL communication, and even more are able to communicate through alternative means, such as PECS and sign.

They also need to learn how to empathize with their child, and stop thinking that "my way of life is better". Disability self-advocates have been fighting that notion since the era of civil rights - the idea that since "I wouldn't want to live that way, they don't either," which leads to the idea that all disabled individuals would prefer euthanasia than life with the disability. Everyone with a disability, from the Deaf to people with ALS has had to face that stigma and stereotype, it is now the turn for the Autistic Self Advocates to take our turn.

I am Autistic. It is an essential part of my personality and my identity as a person. Autism does not disable me - the doubt and fear of people who are not Autistic and do not understand me is what is disabling.

Deb in IL

I thank God for my in-laws who are very supportive with the biomedical path and follow the diet when Nate's with them. It's hard to get away - any slip of the diet and he has a regression until he's clear of the offending food. This weighs on me. If I am not watching him, someone else can harm him with candy or fast food or a cookie. Who else is expected to be that compliant?

Well, ladies (and gents), my girlfriends started planning a weekend in Vegas back in March and I said "I'm in". It was last weekend - husband had full control of the kids, in-laws took them for an overnight, too. I could go to any restaurant and not worry about the menu (I'm GFCFSF myself, but I can live with the consequences). I didn't have to pack dozens of bottles of supplements. It was a welcome relief. I am recharged and feeling motivated. If you can swing it, I recommend a weekend away to recharge the batteries.

Karin

Julie, thanks for this great article and for speaking up. A hot line is a great idea.

samaxtics

This is weird timing.
I just sent a letter off two days ago to our MLA asking for their continued support of our Family Support for Children with Disabilities Program. We no longer have a contract with them for respite, etc. but I was asked to write it and I really should have done it whilst we were under contract. It is important to let elected officials know how vital these programs are for families with children with disabilities: Parents need to show them that the need is great and the benefits numerous.
In my letter I tried to make a few points:
1. That our family did not have local family supports.
2. We were/are a one income family due to my child's disability and many of the therapies we used were not covered under healthcare. Paying qualified babysitters so we could have time to de-stress was way at the bottom of the priority list. Finding qualified babysitters was another problem altogether.
3. The demands on families with special needs are greater and more taxing than those on neurotypical families. Facilitating down-time for parents helps parents better care for their children which impacts positively on society.
Our area doesn't have a local autism support group so when I first started out I hadn't a clue about the different programs available to parents. And the government isn't about to knock on your door to enlighten you either but I was fortunate to meet another parent who clued me in.

Adam M

My sister sent me this and said it made her think of all us parents trying our hardest for our disabled children. It's great inspiration.

http://www.tangle.com/view_video?viewkey=8cf08faca5dd9ea45513

Adam M


I find this very encouraging.
http://www.tangle.com/view_video?viewkey=bbb04ab3b2c1fb244f33

Adam M

Oops..... hand..... God's mighty hand

I don't know where I'd be without a few good friends and relatives that will watch Zach for us when we need a break. In particular my sister, my dad & step mom and my wife's parents. They are all on the same page with us about the Hg / vaccines too. They really are the salt of the earth. We belong to a small church but the pastor is trained as a family counselor. He's a good listener. But the most important help I've got is from above. It's how I know that in the end this all works out for the good of those who love Him. See Romans 8:28.
The things that have happened to Zach and our family weren't to punish us but to prepare us. And He is doing this to bring me closer to Him.
"Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.
1Peter 5:6&7

Julia C.

I remember once talking to a fellow autism mom, and we were talking about a recent story involving a murder suicide by and autism parent, and I expressed the exact feelings of this article- that though it was unbelievably horrible that it had come to this, I also had compassion on the mom because of the kind of hell she must have gone through to get to such a place in her mind. I will never forget the look on my friend's face which was surprise and relief. I imagine that she had gone through many dark days as a parent of a mid to low functioning child, and she couldn't fathom that anyone would ever be able to understand that kind of desperation.
As a community, I think what we need most is hope. Something to hold on to, something that gets us through the hard times and allows us to keep going when we would rather give up. For me, hope comes in the form of understanding friends and family, and the knowledge that someday God will see to it that everything is made right. The wicked people who have brought this plague upon us will be brought to their knees and forced to face the shame of their actions, and our children will be made whole again, by a wise and loving God who is their creator.

tammy

I agree with everything but the selfishness i think alot of the murders are selfish,im sure their are some that think they are helping themselves and child from pain and misery,i feel the same depression,guilt,pain etc but i try to be positive because i cant help my son if im not.my goal is to take care of my son and try to get him to care for himself the best he can,i wont give up on him,i believe god has given him to me for a reason i love him more than anything and could never betray his trust to hurt him! if more parents had more time to themselves they wouldnt be so stressed 24/7 care is draining!! there is so many ways we could get help and noones making that possible.we need help!!

CT teacher

Do not forget that mind altering drugs can cause violent behavior in susceptible individuals, especially in young people. Big Pharma cannot be let off the hook here. If you do a search of many of the mass killings that have been perpetrated by young men in recent years you will find a link. It's never spoken about though. I watched my own 7 yr old niece turn into a violent monster after she was given tranquilizing drugs. Autistic kids are often given such drugs, are they not? Their poor, depressed parents are also probably medicated as well. Perhaps this is a line of thinking that demands more scrutiny.

Adam M

I don't know where I'd be without a few good friends and relatives that will watch Zach for us when we need a break. In particular my sister, my dad & step mom and my wife's parents. They are all on the same page with us about the Hg / vaccines too. They really are the salt of the earth. We belong to a small church but the pastor is trained as a family counselor. He's a good listener. But the most important help I've got is from above. It's how I know that in the end this all works out for the good of those who love Him. See Romans 8:28.
The things that have happened to Zach and our family weren't to punish us but to prepare us. And He is doing this to bring me closer to Him.
"Humble yourselves, therefore, under God's mighty, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.
1Peter 5:6&7

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