Saturday, May 30, 2009

#10 What's bothering you right now?

What about autism is bothering you right now, this minute? Please let us know if you're at peace with it right now, too. Our feelings can change so rapidly from moment to moment: some moments are good, some not so much! That's okay, natural and expected, don't you think?

Right now, I'm fretting about attention spans. I saw Jack working with his wonderful aide on Wednesday and once again am struck by how difficult it is to get him to focus. (It's not just me...the aide couldn't get much out of him either!)

While I can usually stay in the moment with Jack, this issue has me wondering about the future of his education. Fact is, he's made enormous progress this year, so it shouldn't bother me. But it does. It makes me wonder if his aide next year will be as patient and persistent, as kind and gentleand creative. Will his teacher be as good? Oh, the uncertainty of it all, and the difficulty of trusting in Jack and God that it'll be okay.

Deep breath, Susan. Deep breath.


robyn said...

As a manager of a group home with adult men with Autism, the one thing i want most is to expeirence life through the eyes of the men i support to understand more where they are coming from so i can help them understand their world more or get their needs met easier....It has always broken my heart when someone resorts to challenging or dangerous behavior to get their needs met... for one gentleman i work with we have tried so many different ways of communicating and he is not at all receptive to any of them...... I just want to figure out an easier way for him to let us know what he wants/needs without it being so hard for him... when we fail to understand him fast enough and he has challenging moments out of frustration ( and i don't blame him i would too) I just feel like we are letting him down or failed him. He is the only one in a house of 5 that really can't communicate effectivly the majority of the time.

Carrie Wehmeyer said...

Right now, nothing. Yesterday, it was a girl with a newborn telling me she had to go get her baby's vaccines as soon as possible.

maiahs_momma said...

I would have to say that it is the fact it is so hard to get help for us families. That one province has more services available than other provinces.


Susan Raihala said...


Thanks so much for all you do to help the men in your facility! That you don't blame the particular gentleman for his behavior and frustration stands as a testament to your understanding of autism and your willingness to let people be who they are while trying to make life better for them. Bless you for that.


Anonymous said...

Our biggest frustration is what to do next and is it the right thing. Our oldest son (9y/o) has ADHD & Aspergers. Our youngest son(5y/o) has a severe language delay and possible PDD. Meds or no meds for summer for oldest son is the current question. How to get the 5 y/o to potty train is driving us nuts. We are both teachers but at times feel totally lost, helpless, and discouraged. The kids go to the same school my husband teaches at and they are really good for them both. Trying to find answeres is like treaing through mud. Cincinnati childrens didn't really give a diagnoses at all for our youngest son. Just at a loss for now, but optimistic that we have family, friends, and a church family who love and care about my kids.

Thanks for letting me ramble and vent.

Susan Raihala said...

Rambling and venting are what this site is about, Michele! Than you for sharing. I feel very much as you do. And you must be close...we're in the Dayton area. Howdy, neighbor!

tinamarie said...

Michele - Tony was 5 1/2 when he just decided to use the toilet. We tried everything to get him trained and nothing worked until onr day HE decided he did not want to wear pull ups anymore.
My biggest thing that bothers me is what Tony will be like as an adult. Will he be able to work, get married, live on his own or what will happent o him.
What bothers me now are reading about young children waiting for a diagnosis or just diagnosed and they are put on long waiting lists for services. Those waiting lists do more harm than good to these children. The government can waste so much money on unimportant things but they cannot provide more funding for therapies.