Robert and I are more or less alone on this autism ride here where we are. We dont know anyone else with autistic kids other than the people on this board so I thought it would be easiest to ask you guys this question.

I have had anxiety since I was 14.

This past year and a half has been a roller coaster. Autism sure seems to be at the front of it a lot.

Have any of you had any increased anxiousness or stress response since autism came into your lives? (I probably already know the answer) I just want to know how you handled it-- medical or natural. I have a lot on my plate and its been kinda tough.

A<><

JungleButterChick aka JungleButtGirl aka Ovarian Aroma,

After Vincent's diagnosis, the major stress of seeing 'no cure' on every bit of info I tried to read on autism, sent me into hell on earth. I believed every grim forecast....well, anyhow that's when I started having really bad heart palipitations and shortness of breath, black outs but also a really great buzz like at dental surgery when it started beating again...it turned out I have mitral valve prolapse. I've had to take meds for it every since my dx. I take what's called a beta blocker which basically blocks adrenalyn from my heart and makes it always beat steady and rythmic. It's a condition I had before his dx, maybe even born with it, but the stress made it act up. I might need to get it fixed with heart surgery if it worsens, or, could be like many people who have it all their lives but it doesn't get worse quick enough so they die of old age before they need surgery.

So, that's my story.

I have post traumatic stress sydrome from my childhood, so my anxiety is managed through shear will. It has been worse since having children - period.

I live in two worlds, like Jekyl and Hyde. By day I am a confident, educated, empowered woman in control of my life and I am content and happy. By night I live a fear riddled existance. It starts as I drift off to sleep with endless violent nightmares. My dreams, and subconcious thoughts are always negative and out of control. As I wake each morning I climb out of more nightmares. If I am woken early, or woken when I am dreaming I can recall horrific dreams but prefer not to. I have lived with this for YEARS. All of my nightmares are about death, death of my children in particular.

In my sleep I have desperately attempted to rescue my children in an upside down car that has flipped into the water and I rarely if ever save them. I have pulled them from burning buildings, searched for them and found them frozen white in abandoned freezers, I have run them over accidentaly in the car and sat on the drive way screaming as they have blood pouring out their ears and eyes, I have wrestled with strangers that disappear into the crowd taking my baby, and have found them accidentaly smothered, and knocked off their bikes by passing trucks off the road. In my nightmares I turn up to school to collect them and they are not there and no one has seen them all day despite me knowing they were dropped off. They have been in head on car accidents, fallen off bridges, fallen off rooves, attacked by dogs in the park........ I have walked down thousands of hospital corridors to have doctors shake their heads and break the news to me as I collapse in a heap. I have only 5 children, but I have been to hundreds of funerals, all theirs, in my dreams... This I live with, this I have every night and why I hate going to bed most nights.

I am better now, but in the day I used to panic if I could not see the children. Or know exactly where they are and who they are with. I can now let my kids go with friends for the day. Or entrust them to others, and I am alright about Breezsha being away from me providing she has a charged cell phone. I am still unable to let my children go with anyone if there is swimming involved. If they are swimming I have to be there. When I was 9 I saved my 7 year old sisters life in a swimming pool, and I girlfriend lost her two year old son to a drowing accident. I sat by his coffin all my sences soaking up the image of him pale, still, beautiful, but dead and it burned into my head.

The freakshow existance is fed my the news media. I watch the tv news and images of death and ways to die bury themselves in my head and then I relive them in my nightmares. After the Asian Tsunami's I had weeks of dead baby in the waves in my head. Screaming women and panicing parents. I was unable to watch the Beslan images but I still caught enough for it to be added to my video library in my head. Bombs, blood, knives, accidents, burning, asphixia, overdose, abduction, suicide, running with scissors, walking over thin ice that collapses in the centre of a pond. I can not get to my son as he struggles to get out of the water and I cant get to him as his breathing seizes up and he slips under the water. Endless, endless, endless death and burials, bodies, cremations...

I have not been able to stop thinking about Steve Irwin and his family. Steve was a particular favourite of ours anyhow. But my ****ed up head has absorbed and fixated on their greif. It feeds my fascination and subconscious mind so that I shall be quite tormented for months I imagine.

So - has an autistic dx made my anxiety worse? I dont think so.

SM-- I've definately heard about your horriffic childhood and you and P are definately nothing shy of heroic making it thru that. No children should have to endure what you did.

I cant say that my childhood was as horriffic, but I was constantly told I was fat, ugly, and stupid (by my dad's sisters and parents). Three things I was not but I believed it and became those things. I was just different than my 'perfect in every way' sister.

I have a lot of anxiety from the comments made by those people-- and my parents never protected me because my grandparents often times came to my parents' rescue when they were in need. So they gambled my emotional well-being for material well-being.

Worrying about the consequences of my actions or possibilities of tragedy is a huge problem for me. When Aaron was diagnosed, I knew it was all my fault. Eventhough I took precautions before all our kids were born, to make sure that our kids didnt have vaccine induced autism.

But I built the house while pg with him and he was given augmentin-- so naturally, I took the blame for it all. Despite that everyone else said I couldnt have controlled it.

I have had 2 cycles of greif. Before and after his dx.

I worry all the time that Im going to die and that my husband will have to do this all alone and that the kids wont have a mommy.

My new job offers benefits. Im going to take full advantage of them as soon as I get them-- (in about 60 days).

Im not much into medicating my problems, but its starting to get rediculous and I want to make sure there isnt anything else wrong.

For me, it was mostly stress rather than anxiety. First DH and I went through all those Elizabeth Kubler-Ross stages (just like dying or death), with anger, denial, acceptance, etc.; then we went through (typical of two scientists) a stage of doing nothing but trying to read everything we could, learn everything we could, and try to decipher what Andrew needed vs. what could be provided by us or by the local school system. AUGH.....exhausting, frustrating, and just a wee bit stressful (yeah, that was a small understatement). But working as a team, we were able to vent to each other when the frustration and anger got to be too much for either of us to bear.

I can't imagine trying to do this as a single parent, and I bow in humble appreciation to all the single moms (or moms with husbands who don't get involved) on the board who struggle through this every day, you gals ROCK!

I'd highly recommend getting counseling or some kind of support from your company's benefits plan. If I had to do it all over again, starting from when Andrew was first diagnosed, I'd probably get both DH and I into some kind of counseling or support environment to just reassure us that we were NOT bad parents, we WERE doing all that we could, and that we should stop beating up on ourselves for thinking that we needed to be superparents.

Good luck, honey, remember that we are all here for you.

I have missed you guys so much this summer. I didnt realize how much I needed u all till BT was down again.

I wonder if Aaron's benefits thru the state would cover family counseling over his dx. Its worth checking out.

Our older kids dont see Aaron as different at all. He's just Aaron to them, you know?

Noah will say (when introducing him) something like, "This is Aaron, he doesnt talk yet, but he's a good boy."

We had the kids watch the movie "Radio". Their hearts are so pure and unprejudiced-- they didnt even see Radio as different than everyone else.

But in the real world, I imagine there will come a time when they need to explain 'whats wrong with your brother?'

I remember a friend of mine had a sister that was MR. She told me right away so I wouldnt be weirded out or something. Her sister didnt seem that much different, a little immature for her age, but that was all.

All this can be such a huge gaping hole of uncertainty. But I need to take it day by day instead of looking at the vastness of what tomorrow might bring. Thats even biblical,* dont worry about tomorrow, for tomorrow will worry about itself* so I should take that advice LOL!

Amanda its cool that your kids dont realised that their brother is different yet,but they will and this is not a bad thing, its just growing up.

I have 5 kids. Breezsha the second eldest noticed Hazel wasnt like other peoples 'big sister' when she was 9 years old. Reuben figured it out at age nine too. I think age 9 is a development age of understanding social things better. Alice is eight, and while she has been told Hazel is autistic she really doesnt understand, but will soon. And of course Melee at age 2 has no idea.

Today Alice and Hazel were playing outside. Hazel plays like a 9 year old, pretend games etc. They are not really pretend games actually as that woudl infer that she was modelling or copying someone elses behaviour. Its half pretend play and half stimming actually. Anyway Alice loves these games and they can spend hours outside in the trees building huts. Hazel makes a cool big sister for ages.

Today Breezsha was helping me clean up the kitchen. Hazel and Alice were outside. Hazel was standing on the platform on top of our junglegym - I dont know what you might call them - a play structure Its about 6 feet high. Hazel was wearing a skirt and high heels an attrocious floral summer hat which she had tied to her head with a knitted winter scarf. She was standing in this play gym with a large tree branch pointing to the sky. Alice was underneath the gym (being a fireman I believe) and I nudged Breezsha and said look at that - not often 15 year old girls get a big sister like that and we chuckled. Not in an unpleasant way - but by cripes Hazel can be a fruitcake somedays.

Breezsha is so much more tolerant and accepting and able to cope with others and odd people in our world because of Hazel. And your non autistic kids will be compassionate and caring and will 'get' others when their same aged peers wont know how to interact with special needs people.

Well, age 9 is creeping up faster than I want to acknowledge it LOL! So maybe that will be the age of understanding for mine, as well.

My dad's side of the family *who have mellowed out and apologized since their crap from when I was a kid* is extremely tolerant of Aaron. My aunt went to school years and years ago to be a CTC *but ended up drawing maps for International paper company LOL* So she is very very good at interaction with him and so is her daughter.

My mom's side of the fam is kind of 'I dont get it' about the whole situation-- mostly because they dont spend any time with him. (And my cousin has an autie too, go figure)

I have to share this, before I forget.

There is this boy, he's maybe 14 or 16 that sits outside one of the main roads on the sidewalk to watch the cars go by. I see him come into my store a lot too with his family or aides. (He's seriously adorable)

I have seen him rocking/stimming while watching the cars so Im probably safe to say he's on the spectrum somewhere.

Yesterday I drove by and waved at him as I drove by-- and he waved back! That was seriously the best warm fuzzy! It gave me some hope that maybe in the future, my son would wave back to me too.

I just wish this whole thing wasnt so uncertain.

Amanda do you have a faith? Sorry to be personal and you sure dont have to answer. But I found my faith has helped a lot. That "uncertain thing" is what drives a lot of worry, can create depression, and make the whole future seeem gloomy and unbearable. But it's just that you dont know what is ahead. The truth is the 'future' doesnt just land on you all of a sudden in one day, it unfolds, it evolves and you deal with each step as you come to it.

It is stupid to say do not worry. As I worried, I was also angry that we had autism in our family. What the hell had I done to deserve this? My friends all had their normal kids and their normal lives and I was left with a child who wasnt toilet trained and spoke in riddles, had terrible balance, was clumsey, and drove me nuts. I loved her, she was cute and had gorgeous blue eyes and a big heart and innocence that brought out the mothering instinct to protect her. But it wasnt fair.

My next daughter down hit milestone after milestone and each time she blossomed it just painfully highlighted the things Hazel was missing out on. I intelectualised things and analysed stuff but in my heart never I truely accepted that Hazel was special needs. I looked for cures, but gave up earlier than other parents. I also resented Hazel, even though it wasnt her fault. I had at one point 2 daughters and a son. I thought of myself as having 1 daughter, 1 son and Hazel. I still do a bit, I now have 3 daughters, 1 son and a Hazel. She is so different. Its like having 3 dogs, 1 cat and a giraffe. One of the pets stands out more than the others. and one of my kids stands out more than the others.

When she was 12 I had a watershed moment. I wrote about it on the old MGH board. There was a combination of things that occured. I had the 'Welcome to Holland' poem in my head for months and I understood it with my head, but not my heart. Then Breezsha performed in a dance recital at our town hall. Hazel sat with me in the dark but acting like a fruit loop. And I was fine until the senior girls (Hazels age) took the stage. This is the class that Hazel would have been in if she wasnt autistic. I knew all the girls from school and from the dance studio but had never seen them dance. They did the most gracefull, and delicate and powerfull dance that ripped my heart out. The music sliced through me as I watched these 12 - 13 year old girls pre-womanhood perform seriously skilled footwork and talent. Tears poured down my face as I was 'letting go' of all the anger and pain and emotion of 11 + years. Hazel never was one of these lovely girls and she was never ment to be. She was just ment to be Hazel and this was OK. As I was wrestling with all this - in the dark in a theatre seat Hazel wanted to go to the toilet and got up and crossed the whole audience area (there would have been some 600 - 1000 ppl in the audience) and in a lull in the music and for all to hear she shouted back to me "MUM - DO YOU WANT TO GO TO THE TOILET?" It kind of puntuated my full acceptance that she was never going to be like other people.

I knew Hazel's life might be crap as an adult, restricted, limited and unfillfulled and so I poured my soul into at least letting her have a good childhood. Even though we could not afford it I spent months organised and buying a pony for her 12th birthday. I figured if she was to have a crap future I would at least give her the best 12th birthday. This was another milestone for me. Accepting I could only do my best with what I had.

Hazel is 18 now and its not so crap. Its not brilliant, but not as gloomy and filled with dispair and disappointment that I anticipated. It is actually full of hope and hilarity. Now I know you can not compare apples with oranges and your son has different issues. But I am supremely confident that when he is 18 NO MATTER what he is able to do and not do 1) you will be ok with it 100% 2) that the bleak future was not nearly as bad as was imagined the sky never fell in. 3) the stress and worry will have melted away 90% 4) you will believe that it had been a good thing to happen for the person it made you become

It is a journey. Which is cliche but true. And the start is rocky and painfull and you have no clues where the destination is. But if you can have a little faith and just deal with each step and obstacle as you come to it and not worry it will get easier I promise.

Peta

I can't say I'm more anxious because of the ASD diagnosis with our boys. I did go see a psychiatrist though--kinda for personal reinforcement that I'm ok. I was treated for bulimia as a teen, had my oldest son at 17, my brother is bipolar, aspergers, and paranoid (my dad and him were frequently violent), in general life sucked growing up r/t my brother in general. My parents did not know how to cope or handle my brother at all. Now my mom has just thrown up her hands and walked out.

When the boys are stressing me out, I have noticed I do have some regression. Esp with the eating issues, I'll go for weeks where I WANT to purge more than anything else in teh world or I just won't eat. I don't sleep well because it seems like once the boys goes to sleep all I can do is worry about is what's next. Then I'm so tired the next day...that old ritalin in the cupboard can look so nice...so it goes down the drain.

What's helped....I'm working 2 days a week at a mental health hospital with children and adolescents. Sometimes it is irritating because I feel like my work and home are so much alike-what's the difference. But it helps, for me, to remember that there are lots of other kids like mine--in our area. It helped me find the community resources in this area, seeing the effects of different meds, learning more behavior modification techniques, physical intervention techniques, and teaching classes about coping skills does help utilize them myself. I am somoewhat scared about going to support groups etc, because what if a patient's parent remebers me. I worry that they'd be offended or something. I think it also helps the hospital also having parents of ASD kids because it helps improve the services offered. My oldest was admitted there before I worked there so I know what things bothered me when I was on the other side of the table, and I've made efforts to try to verbalize changes that need to be made in those areas. I will admit that I am not very open about my homelife with coworkers that I am not familiar with. But the more people I have talked with, I've learned that everyone has a child, sibling, cousin, personal exp, etc. that leads them to like their job. It doesn't pay that well to choose that job without having a passion for it.

I can't say that I am not ill myself, but I am able to cope with my problems without them interfering with my day to day activites. Which according to the psychiatrist lets me be considered "normal."