Autism Burnout | Autism PDD
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Autism Burnout

"Some of us cannot EVER 'pretend' eveyrthing is okay, or even be close to a normal family, as severe autism affects everything everyday - there are no 'normal' family outings or trips or anything -it is overwhelmingly hard and sometimes I wish I could escape - alone - to the bahamas or somewhere -

sorry to vent -"

Thanks for posting this Autumn. The main problem for me is that my son can "get by" as if he is "normal" but the truth is he is very affected in many aspects of his life and it is so easy for me to pretend that he is ok because we can get by, such as going to the grocery store, going swimming, ect. It is not without its problems, such as if he is expected to talk to anyone or interact. Then it can be very isolating. I can't begin to know what life is like with a severely affected child. My child is potty trained and can talk (although he has severe speech problems and stutter), things I probably take for granted because of all the other ways he IS affected.

But the thing is I sort of have to be my own reminder, because he will be so "perfect" in my eyes that is hard to remember that he can barely write his own name and he starting first grade, or that no one else can understand what he is saying except people who are with him frequently, or that he can't kick a ball or run or ride a bike because of his poor motor skills. All those "little things" that I am supposed to be working on with him every day, they get overwhelming too. But I really can't afford to take a break because then he gets even worse/ regresses. I just wish we could have a liesurely summertime like all the other families! I wish I had a husband to help me, or even my ex would help me!

Sometimes I get caught up in all these things, and the truth is I am very fortunate that he is high functioning, even though it puts us in this weird category where we don't quite fit in! Just hard to figure all of it out. We still have just as many goals, and we still get nowhere with them. So I really can't take breaks or cancel therapy appointments. But I am trying not to beat myself up and getting back on track this week!

ok sorry random thoughts... thanks for all your feedback guys!


HopeMommy198139264.8752662037[QUOTE=autumn]

Some of us cannot EVER 'pretend' eveyrthing is okay, or even be close to a normal family, as severe autism affects everything everyday - there are no 'normal' family outings or trips or anything -it is overwhelmingly hard and sometimes I wish I could escape - alone - to the bahamas or somewhere -

sorry to vent -

[/QUOTE]

Boy do I hear that!!!!!!!

That's what respite services were created for.  We all need respite, which means a break from autism.  Seek out respite services. Also, find something you like to do for yourself that gives you frequent, if not daily, breaks from autism.  Autism is a marathon, not a sprint. You will be dealing with it 2/7/365 for the rest of your life.  Of course, what needs to be done will change as your daughter ages, but she will always be autistic and you will always be the mom of someone who is autistic.  So you need to come to grips with dealing with it.  I've found that going a couple of times of weeks to an aerobic dance exercise class gives me a much-needed break from autism. Unlike some forms of exercise, which involve the body but not the mind that much, dancing FORCES me to concentrate on the choreography, so I can't think about autism or I'll trip!  It also allows me to get some of my anger about autism out through aggressive body movement.  Whatever gives you a true break is what you ought to seek out doing.  Good luck.

Autumn,

I know what you mean about the groceries....I needed to go grocery shopping a few days ago to get milk, Cheerios, Goldfish...the only things my son will eat these days. Well dad was out of town for the week and my son had a massive meltdown before we even got in the car. He ended up hitting his head in the driveway due to a throw down fit, and that made things way worse! I ended up calling all the family that I know could help until I found someone to come over so I could go to the grocery store.

If I had brought him with me he would have either a. thrown up in car, b. thrown up in the store, or c. waited until I got the shopping done then thrown up in the store with a basketful of food! Either way, unsuccessful trip- I feel your apin! No wonder we get burnt out

Autumn - U describe excatly how I feel ! And which is why I stopped posting every single day - I feel like I never have anything good/positive to say these days...

It's hard. Like Tzoya so aptly put it - autism sucks .... BIG time!

I do this too.  I cancel his therapy appointments, etc.   You're not alone.  Sometimes you just need a break, but we all know we get right back to it.  I love the suggestion about joining an aerobic class.  I used to do that all the time before my son was diagnosed and recently haven't found the time because we're so busy.  I'm going to look today for a class because that will give me a much-needed break.  I feel everyone's pain. We have known (unofficially) that my son was autistic with severe adhd for about a year. We just got the official DX and it has definately been very hard on me. I love him for who he is, and wouldn't change him for anything in this world, but it just gets to be more that I can bare at times. This last 6 months has really taken a toll on me and I have just recently had to get a therapist of my own. From what I am seeing, this is a common problem of parents with autistic children. My entire life revolves around my children. ME time???...have no idea what that is anymore, and that is ok. Are there any other parents here that have had to seek their own therapist because of this?? Does the emotional pain that I feel for my son, ever get easier? mandyanthony39265.3103009259Mandy - makes perfect sense - kind of like the old sayign we are dam*ed if we do and dam*ed if we dont - it feel like beign stuck - you cant give up though - it is beyond hard..........I need breaks although I find it hard to take them since I continually worry that I will miss either a treatment or a legal procedure that will make our lives easier.  Some days I hear the voice of the devil saying "That's the hell of it, nothing will make it easier!!!"  [That the punch life for a joke I heard a long time ago, in a different life.]

Only thing that makes sense is to pace myself, and prioritize, but with the knowledge that the priority is not the obvious one.  Staying safe and sane is 1st.

I have wondered if I should post about burn-out before.  I am glad that someone was brave enough.
I honestly think I've felt the burnout yet. I have always taken at least 1 weekend a month of me time. I've had to. Even before the diagnosis, I had to have the time. My therapist has always said I need to take more "me time." (I've seen therapists on and off for over 5 yrs now.)

I know I've got lucky with Daniel being high functioning, but even if he was severe, I would still have to take the me time. It's something I very much know I NEED to stay sane. And I highly support everyone doing it. I know it's not always easy to find someone to help, but there are things out there to help support your sanity for the sake of your children.
I DO get respite time, and feel guilty because it just does not seem to be 'enough'. I even had my provder ask if I had considered a family home for my sweet son to live in, then I would only see him weekends - wow talk about THAT guilt - especially because I found myself fantasizing about a 'normal' life....I feel guilty even WRITING it....I know exactly where you are coming from Autumn, I find myself wondering all of the time what life would be like if Skylar didn't have the problems that he has. I wonder all of the time, what he would be like. And then the guilt takes over because I even thought anything like that. I could not imagine putting him in a home for many reasons, one major reason being, that no one could possibly love him like I do, and although I have other children in which I love more than life, I simply cannot picture going the rest of my life without my Skylar. I constantly think that if I only understood him better, than I could help him more. But at the same time, I can easily say that no one will ever understand him the way I do. I dont know if that makes sense to anyone. 

Autumn and others,

I feel your pain. I really do. That is why I took a brake from the forum and everything else.  When Shawn was younger I cannot tell you how many carts full of groceries I left sitting.  I even had several of those wonderful throw up instances with the tantrums(he had a GREAT gag reflex!). What is great is I CAN laugh about it now! Shawn is still autistic and with puberty has come another range of special issues(how do you tell your prankster son that telling your friend that he saw her husband with anothert woman is NOT a tactful practical joke!), but some of the other things have gone away. Tantrums are not previalent any more. Trips to the grocery stores are ok(as they can be with a teenage boy wanting EVERYTHING!) and communication is good. We talk about his autism and how to treat it. I hope this offers some encouragement for those struggling. I really do recall those times. Good luck and take time when you need it.

I think I am suffering from Autism Burnout again. I go through these periods where I dont want to do anything related to Autism, slack off on my son's At-Home work, find reasons to cancel therapy appointments that seem justified at the time - like I am not feeling well and just dont want to look at/ think about/ deal with my son's Autism. It usually only lasts about 3 or 4 days and then I pull myself together. Does anyone else go through this? It usually happens for me after my son has been doing really well and since he is high functioning, I can pretend it just goes away until I am reminded once again how affected he is
I definetly take a break from all the autism stuff.  Infact. many times I just do things without even thinking that my son even HAS autism.  We are still a regular family!  And I don't consider that being detached or anything, just that life goes on!  When I feel the need for knowledge or encouragement, I have my go-to resources available.  Im just like you , i do things without even thinking my child has autism. We go everywhere and do everything. Sometime it doesnt work out but we still try it.Hopemommy, I know how you feel- c's schedule is so hectic somedays with therapy...it gets draining. Just thinking about it all can be draining. Hang in their!

I think I have had about 3 mini breakdowns due to dealing with autism where I just shut down, cancelled therapies.. and couldnt read about it or did my best to focus on something else...

This is our first summer in 4 years without therapies going on at least 3x a week or more.. I was so burned out from always scheduling thing around her therapies and never getting down time with her

 What compelled me the most was paying money for what I could do myself. My BCBA is pretty upset with me for quitting her again but $80/hr to prompt Sarah to say hi to kids was just eating at me and I quit...she needs help but I can help her for free:) I take her to mall and petstores and park just as a nt kid but it still is hard when she needs total care someday...she is happy as long as she is busy with activities so I always come up with things to keep her engaged..she never regresses when we take these little breaks..your child will let you know when it is time to get back in the game  Its okay to take a break..necessary to charge your batteries:) Hang in there!

Your not alone..I do this often. Otherwise I would go crazyI have shut downs all the time. I feel overwhelmed and frustrated and I find that the better I am handling things, the less I am on this board! When all is well we are going swimming, to the park, outside with sidewalk chalk, whatever is fun.... then we have a bad few days and I cancel appointments pretending I am ill , or that he is not feeling well. Sometimes I just can't deal with his therapists.... we have all been there and we all need a break sometimes. Autumn, I would love to join you in the Bahamas! I have never wanted to take a trip alone until autism entered our lives.......Thanks BabyBoy2005. It sure is hard, isn't it? FOr us goign otu in public almsot cannto be done now. Just yesterday my cart of groceries was left again in the middle of the store as my son had a meltdown. Sigh. Let's all continue to encourage each other, I am sorry to be a downer so much, I feel very weary of it all lately - must be summer.
nupurb39512.9828587963I hear ya!!! Everyone needs a break... even parents with NT kids!! Hang in there and just go with my moto " if mommy is ok, everything else will be"... meaning take care of mommy first since she is the one thatr runs the show...

Some of us cannot EVER 'pretend' eveyrthing is okay, or even be close to a normal family, as severe autism affects everything everyday - there are no 'normal' family outings or trips or anything -it is overwhelmingly hard and sometimes I wish I could escape - alone - to the bahamas or somewhere -

sorry to vent -

I think it's very improtant to take time away from whatever it is in your life that is difficult. We are not superparents - we are ordinary people who have been given extraordinary challenges. It's OK to need a break. It's OK to ask for some time to yourself.

Mysh

You are not the only one. And you should keep coming back. I have needed moral support from others with children like mine, being better or worse and I have found that here. For those that have the children that are not quite so severe, those are the ones that give me hope. They shine the light at the end of the tunnel. I keep telling myself, that although my Skylar is very High Functioning, that with enough help and hope that he will one day lead a fairly normal life.

I wasn't offended by anything said, it just makes me realize how DIFFERENT these children really are. But most of us parents are all the same, we love them unconditionally, try with all of our might to make life as easy and enjoyable as possible for our kids.

I have read some many stories here in my short time on the forum, some have made me wish "why can't I?", some have made me think, "And I thought I had it rough", that is the point to all of this, to make the world AWARE! I am so glad that I found this.

Fred there are times when I feel that I am in the wrong place here at this board. So many have high functioning children, and I see what,or hear what their children can do and mine cannot do, that I feel "out of place". And yes I am jealous of the things they can do with their children. I find myself wishing "why can't I"?

But I still come back here, because there are alot here who have helped me so much.

So I guess you are right..there are those of us who do shy away...esp. when you are single and feel as if you are the only one with these stupid autistic problems.

I never meant that high functioning children have it easy...I know they don't..what I meant was that in comparsion to my son...well I wish he was more high functioning,because then maybe it might be alittle eaisier to get thru to him, or to have other people who are suppose to help...help...Please understand I know all these children have it difficult...I just wish I could reach mine...or go out into the community without fear of a major meltdown,to see him smile would be a wonderful thing.

So I am sorry if I offended anyone.I so did not mean it that way. Isn't funny the types of things you wish for?

vcuddy, autumn, etc, don't worry about having offended anyone.  The range of severity with autism is a big elephant in the room.  I know how it feels to have parents of typical children complain about what seem to me to be petty concerns and I'm sure that some parents on this board feel the same way about the concerns of some of us who have kids who are less severely affected.  I think this is a topic that shouldn't be taboo.  We all have our struggles and concerns, true, but I sometimes feel that parents of more severely affected kids shy away from this board because they feel that they don't belong or have a hard time reading about other kids and stuff.  It's a touchy subject and I think it's one that should be acknowledged without any guilty feelings from anyone.Thank you MAndy for your words....As much as I tend to shyaway..I have found support here..this is pretty much the only "family" I have. It has been a long road for my son and I...and it is still winding and winding...I want to see the light at the end of the tunnel..but I am having a hard time right now seeing it. I never thought of the high functioning children as showing the world what autistics can do...and maybe it will be these children who will "drag" the more affected with them in the quest to help people see that "they all are people and deserve as much respect as any one esle.I'm definitely in a burn out phase.  At least by now I feel it coming and I know to back off so I don't hit the break down phase.  I had 3 autism books on my nightstand and I just returned them to the library half-read (which is unusual for me.)  I sometimes feel that this autism burden would not be so big if I didn't have to carry it all myself.  That's what gets me down the most, not my son.  I haven't had the time or energy to post much on the board, but I do read the posts daily and get a lot of encouragement just knowing that there are so many others out there who fight the same battles and have the same worries.I go through periods where I try to focus on other things, and other times I have no desire to read about/talk about autism.

I agree that we all need a break sometimes and that you shouldn't feel bad about it, which if you are anything like me is easier said than done.
But in the end, a week here and there is better than pushing too hard and burning out permanently.

As a teacher and IHT I see burn out all the time. TAKE A BREAK! You can drag your self through it for a few months and do everything half way or take a week vacation form it and get back on track.  It is so important for you to get out of the house and take some time for your self. The burn turns quickly from mental to physical and as we all know if you’re sick and out life falls apart for your family. There are many night out resources for families let me know if you need some info.

Make time for yourself.  When you are having successful sessions and you are seeing progress is when you should stick it out and keep it up.  YOU CAN DO IT! When you not having successful progress then take a little break.   That's how I would do it.  Pull yourself together when it's really important let yourself go when its not (nighttime, in the car, whereever you can) and remember to make sure you make time for yourself.   Time, Consistency, and Patience is the key to teaching any child with or without special needs. I have taken quite a few breaks over the past few years.  You just get to the point where homework, therapy, etc takes over and the last thing you want is to read about it online or anywhere else.  Take the time you need.

[QUOTE=shenom]VCuddy and Autumn.....an any others with a child on the more severe end
of the spectrum. My heart really does go out to you. Personally, I know
your struggles are much harder than mine. I'm fortunate in that my son
is mildly affected and for the most part our lifestyle hasn't had to change
too much as a result of his autism. We can take him pretty much
anywhere without fear of melt-downs/trantrums, aren't limited to the
types of family vacations we want to take, and for the most part, live a
relatively "normal" life.

I often have to remind myself how much more difficult others have it and
how much harder it could be. When I start whining about the minor
annoyances that are part of my son's autism (picky eating for example), I
quickly stop myself and think about how much worse it could be.

Your struggles pale in comparison to mine, and I applaud you for the
courage and strength you exhibit on a daily basis. There are so many
times I've questioned why some kids seem to be hit with autism so much
harder than others. It just doesn't seem fair. [/QUOTE]

 

Very well said

VCuddy and Autumn.....an any others with a child on the more severe end
of the spectrum. My heart really does go out to you. Personally, I know
your struggles are much harder than mine. I'm fortunate in that my son
is mildly affected and for the most part our lifestyle hasn't had to change
too much as a result of his autism. We can take him pretty much
anywhere without fear of melt-downs/trantrums, aren't limited to the
types of family vacations we want to take, and for the most part, live a
relatively "normal" life.

I often have to remind myself how much more difficult others have it and
how much harder it could be. When I start whining about the minor
annoyances that are part of my son's autism (picky eating for example), I
quickly stop myself and think about how much worse it could be.

Your struggles pale in comparison to mine, and I applaud you for the
courage and strength you exhibit on a daily basis. There are so many
times I've questioned why some kids seem to be hit with autism so much
harder than others. It just doesn't seem fair.

I am sure vcuddy who commented 'she envied the parents of hf kiddos' knows that it is hard with those hf kiddos. I think her point was those of us with severe spectrum children with m.r. and complete total care needed (my son is 8, not potty trianed, we still feed him,has never slept thru the night, hurts himself, etc etc etc ) and also not able to go ANYWHERE - never a vacation - wow.... or even to the lake ....much less the corner grocery store or any event - I think she means, and I know I do, that it is hard enough with ANY level on the spectrum, but life is ABSOLUTEY abnormal ALL the time with severe children - with severe, there is NO way there will ever be marriage or childen or college or independant living - not even a HOPE for it -and the here and now is very difficult to live in. It is very hard to not feel sorry for ourselves...and everywhere you go, people stare, as it becomes apparant within seconds your child is 'not normal' and never would be mistaken for normal.........

So, if I may try to speak for vcuddy , I know she knows it is tough for ALL of us, she was just relating to us with severe issues -

please, do not take offense!

I didn't take a offense and I do not mean to gain sympathy, I just get that all the time and sometimes GRRR I dont know I just get tired of hearing how "lucky" I am that my child is HF. Did I mention I have major PMS? 
(((((((HUGS))))))) to all of you, I dont know what I would do especially being a single mom with no help from anyone, except occasionally my mother, if my son were severely affected by Autism/ severe/ classic Autism. The closest he came to self-injurous behavior was hitting his head to help him speak, which thankfully he outgrew. I just dont know how all of you deal with. I know I am lucky that my son is high functioning, I am. I guess just being a single mom alone is hard, but added to that two small children and one with HFA and it just gets very depressing and I get on major burnout - even with Prozac and Xanax!
But I am thankful for all of the things he can do, and I am thankful that I can still have some hope for his future even though I can't be certain how things will end up. And don't say there is no hope for your kids You don't know, either, right? I guess none of us know.

I don't think that anyone has it better or worse than someone else with an ASD child, just that the challenges are DIFFERENT and everyone's ability to handle those challenges are different.  I saw a family at Disney World in January whose son, maybe 9 or 10, obviously had what you would call "high functioning" ( he was verbal and probably potty trained) autism, but he was having anxiety attacks and talking so much about nothing that no one was even listening to him.  Yet there he was at Disney with his family.
"I ENVY THE PARENTS WITH HIGH FUNCTIONING CHILDREN..."

I just want to remind everyone that parents of high functioning children do not have it easy. Our children have tons of challenges, our hearts still break for them, and we have no idea if they will ever lead a "normal" life. They have IEPs, Paraeducators or teachers aids, require ABA therapy at some level, attend several weekly speech, OT, PT, and behavioral therapies. They have setbacks, regressions, meltdowns, few if any friends, get made fun of, and whats worse is they KNOW they are different. They have motor delays, speech problems, digestive problems, food sensitivities, and may be unable to detect when someone is lying to them or manipulating them. They have a very high rate of depression, anxiety, suicide, ect. Many will need lifelong care at some level. Even if our kids do get through college, they may be unable to hold a job due to lack of social skills. Many will never drive a car or be able to manage their lives. Many will never get married or have children, or be able to relate to their children/ spouses well.
It is not a picnic!

MAN I THOUGHT I WAS THE ONLY ONE FEELING SO DRAINED ...AUTUMN I SO KNOW WHAT YOU MEAN ABOUT NO FAMILY OUTINGS..I WOULD LOVE TO GET MY SON TO WALK TO THE SWIMMING POOL IN THE PARK, BUT HIS MELTDOWNS ARE UGLY...AND DRAINING ON HIM AND ME...I FIND MYSELF SO EMOTIONALLY DRAINED THAT I DO NOT KNOW WHICH WAY TO GO WITH ANYTHING...I WOULD KILL TO KNOW WHAT A FULL NITES SLEEP IS, TO BE ABLE TO TAKE MY SON TO THE STORE, TO BE ABLE TO LAUGH RIGHT NOW WOULD ALSO BE GOOD. I HAVE SO MUCH ANGER IN ME....MORE THAN EVER, THAT I FEEL A BREAKING POINT IS NEAR...

I ENVY THE PARENTS WITH HIGH FUNCTIONING CHILDREN...

 

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