I am running an autism support group and I need help from those with more experience and even have autism.  Because the goal is to help the children with autism and families that care I would like to know what you wish the school could provide and what can parents do to provide.  If we had lots of money maybe things might be different how ever we are not financially well off and simply doing the best we can.  I have hit my box walls and i am not seeing outside of it.  In other words i am asking for help so that i can help others where we live.  I am not seeing the needs of our people, help me to open my eyes so that i may be able to help.

thank you

I am doing a parent survey to help with a state assesment for the school district and on the returns of most of the surveys i have noticed that most if not all parents do not know what a LEA is.  Worse than that i totally forgot myself.  I will look it up again because i have all that stupid jargon transilated some where around here.  any ways it made me wonder what else do we come into contact with in the schools that parents do not understand?  What about the teachers what do they question?  if any of you out there could tell me i think it would greatly influence how we speak to one another and benifit our kids with all disabilities included.

Hi I've posted before about starting an autism awareness group for the community here and guess what.  the school disrict wants me to represent parents with specail needs for the state assesment they have.  so here is the delima.  I have two children with autism and one i think i might be pulling out to home school while leaving my other child in.  I got mad when i went into the school that my children go to and was told that i couldn't find out what progress my children were making untill the director was there.  I didn't blow up on anyone, i was thourghly disgusted and simmering on the inside.  I've worked there i unerstand the confidentiality laws i asked for my childrens information only.  i could see the ring binder where they are supposed to keep reports on the daily progress going on.  With that aside I know i can not properly represent the children or parents if i don't know their feelings and how they feel their children are doing with in the public schools.  I feel like a detective, and know that this could go very bad or very good.  In this community change is frowned upon and i am already the black mark for standing ground for not just for my children but other children too.  I wonder if this is to palacate me or if this is the schools way to get the state to see that parents are dissatisfied and a change has to be made because parents realy do care (I care).  I would ask to all those out there your feelings on the schools and the systems, this could potentualy go all the way to the top beyound my state to a federal matter.  lets make a positive change for all those that don't have the voice.

does anyone have any experience with this stem cell research?  Most of us are poorer than dirt and just trying to stay above the debt line and can't afford certain medical procedures.  I am interested in trying it out but not at the expense of my childrens health or my sanity for that matter.  besides i am certain that our medical provider will not assisst in paying for something like that.

Ok dumby me got this idea in my head that if i spin around in a circle like my kids can then i will have a better understanding of what they feel like when they do this.  I often found myself wondering what it is thats going through thier heads while spinning.  Here is what went through mine.  My arms lifted by themselves hmm that is G-forces pulling them ok cool....i wonder what it is in the grass im looking at or nothing all i see is that the closer to my feet i look the faster it seems i am spinning and the farther away i look the less it spins....whoa stop.  I try to walk to my daughter who is laughing her head off and i promptly fall over the world spinning in the opposite direction.  I can't get up im to dizzy.  Finaly the spinning stops.  I get up and do it again but this time i change directions every so often...what do i feel?  My arms are being pulled into two different directions simultaneuosly, my hair gets in my eyes every now and again. and i can't stay focused on thinking about anything other than trying to not throw up at this point.  Oh yeah and im numb now.  Is that the point? to get to where you can't feel your body anymore where you can't even think anymore...? 

Well rummor has it that those touched with autism do not have the mental capacity to show empathy, sympathy, or compassion much less imagination.  Well again i found my children have proven the rummor wrong again.  It all started with my daughter finding a bat at walmart.  It was much to my surprise still alive, i was afraid that with the heat of the day (going into the 100) that it would die a terriable death from the heat.  so we got an old doggie t-shirt from my trunk and a box to transport the little thing.  We brought it home, i thought if it lives great, if not we'll perform funeral services for it.  either way it was a learning opportunity.  I had to explain to the kids that under no negotiations the bat doesn't come into the house that it is to rest to help it get better.  We then went on line to see all about bats and to call the bat conservationists for our state.  at some point my son went and hunted down a grasshopper and fed the bat...i didn't know till after the fact, thank goodness he didn't get bitten.  Good news the bat ate it.  That same day the kids were playing in a small area in the yard that has mud and they have built a house for this bat.  I don't knock it down i admire it in all its crudeness and amazing functionality.  sturdy little thing too.  So here is the thing.  Both of my children touched with autism not only showed empathy, sympathy, compassion, and imagination, they also showed that they could work together to accomplish one goal and show amazing problem solving skills, oh can't forget the amazing engineering and building ability useing mud and sticks.  It's like looking at those old can't be destroyed indian dwelings.  Needless to say the bat is fine flew off sometime during the night all to the thanks of my children that rummor says can't.

I need help, well not just me but this whole town.  So many of these parents are seemingly burned out exhausted just from interacting with our children with autism.  We all get the disgusted looks, we all get the whats wrong with your child looks, and the '"can't you shut your child up?".  and i think the most demeaning is the look "You are an abusive parent because i see all the bruises on your childs head face and arms, DCFS here we come".  How can i possibly help bring the moral up for all of us?  the town wants to know what to do they want to help, i am doing the best i can, but all the public sees is how only my children behave not the full spectrum or age differences.  I think about running for city council and worry it will be waisted effort to help educate the community.  Please help?  What helped you guys pull through every waking day and sleepless nights we all go through?  Mine is for my children and my answere isn't good enough.  so again i am begging for participation to help bring the moral up so that parents relatives and workers can see hope once again. to get the old spark going.

Well I threw the party, three families showed up actually two and a half.  The person that was supposed to help pulled a no-show, no-call.  But you know what we all ahd fun anyways.  We had one of the bubble machines the kids absolutely adored and a ball that acts like a sprinkeler.  Im glad a brought food for a small party with the sandwich makings and drinks and a little bit of fruit.  the other families brought chips and cookies.  A tiny success but a success anyways.  We are victorious and im still depressed.  I wonder why to my self, don't these parents care anymore?  have they truely given up hope for these children with so much talent we don't even know what to do?  What am i doing wrong?  Is it because im still new in this town that because i haven't establishe a name for myself that nothing comes about?  My best isn't good enough for my own expectactions i guess.  bummer.  Well im not giving up.  Now im trying to set stuff up so that some of these kids in town can do modeling with hair styles or clothes and toys or something.  They have all these abilities they are so smart if only we could give them a chance to shine through...and i feel like so many parents here hold back for one reason or another.  I feel like they almost are exploiting their child for some form of gain, "Woe is me and my children with disabilities, give me please".  I think perhapse i am to harsh and i probably am.

wish i may. wish i might. may i have a wish tonight?

i wish that people knew how truely blessed we as people that have been and are touched by autism truely are!

Bonnie

So yeah i started an autism awareness group so what right?  I feel like it's just a load of crap im hauling around a town that turns their heads the other way or smile and nod at me with that blank stare of being somewhere completely else.  So I'm throwing a party for the whole entire county, a pot luck party because i can't afford to buy much of anything like the rest of us folks that have our finances dedicated to our children.  I don't know if anyone will show up or if it will be just me and my kids at the stupid park.  I am inviting everyone i suppose the worst that will happen is that everyone and the dogs will show up right?  then what do i do, i can't feel pitty for myself then can i.  Boy this sucks, i don't even know what im doing anymore.  well here is to luck!  June 30th here we come!

So I have been running an autism awareness group and since summer is here and cammping is in full swing i was wondering what the police force and rescue teams had going for those with disabilities.  This is what I found out...Nothing.  They don't have training or any experience for that matter.  It blew my mind.  We hear about more kids getting lost every year more and more with autism.  So I learned that i might be educating the police force, search and rescue teams, fire departments, and emts about autism in my area.  My concern for all parents and families is your police force aware of the needs our children have and if not can you help them become educated?