Long month

[Guest guest]

Dear Friends,

It doesn't seem like almost a month since I last contributed anything to

this list. Boy, this summer is flying. I had to re-read several digests

and made little notes about many things that I wanted to reply to but I

know I won't be able to cover everything.

Nothing here has happened except that I realized I needed a long hiatus

from special ed stuff after the end of our school year. We haven't done

anything other than swinming and lots of play and some speech therapy this

summer, and I LOVE not having the stress of getting Ben ready for

camp and then a 30 minute drive and then worry about whether he's getting

enought to drink all day. (Ohio's weather has been dry and HOT. Lots of

90+ degree days.) Plus there have been family events ever since his First

Comunion on June 29. I will write a separate post about that- we had a

great weekend.

My Mom moved from our family ome of 46 years into a beautiful, modern,

spacious one-floor condo. We are all happy about the move but those of you

who have helped aging parents do this know there is sooooo much stuff to be

dealt with in a move. So my brothers and sister and I have been going back

and forth to Erie PA (Hi Gail! You are less than an hour from my Mom's!) to

help, but she really has needed soemone to just move in with her for a

couple of weeks to help get it all done.

Then I had a close friend develop a serios illness- she was very sick for

over a month, and was afraid to go to the doctor because she was afraid she

had cancer. She went into seclusion and cut off almost all communication

with people. The next thing I knew, her ex called me and said she was in

the hospital. She almost needed a colostomy but meds and a huge change in

diet and a lot of prayer have kept that from happening. I have spent time

with her and some mutual friends as she was in the hospital for two weeks

and then is having a long recovery at her home.

Gail, I was really touched by your sharing your feelings about the changes

in your DH. It is marvelous that he has had such a change in his health

for the good, but you are left wondering how things are really changing for

all of your family. I have been thinking about all of these things (and

, I loved your poignant story about your post-heart surgery! You left

me wanting to hear " the rest of the story. " ) I see this in my dear

friend's life as well. She has undergone enormous changes, and I know

things will be very different with her from now on.

Tomorrow we travel to Youngstown to see our favorite sitter get married.

PB and DH will sit out the cermony, but we will all go to the reception.

Then we are staying in a State Park lodge overnight. Then on the 31st, DH

leaves for two weeks to conferences and workshops in Taiwan. He's ready-

but I have to prepare some picrture stories for Ben so we can

prepare him for Dad's long trip.

We added another .125 mg of risperdal to his morning meds, and he continues

on focalin, a new, better version of ritalin. The combo seems to be

working quite well. He isn't as loud, at all! And he does continue to

tune in and imitate a lot more things he is seeing around him. His growth

spurt (AKA as " puberty " ) continues. He of the formerly little feet is

walking around the house wearing my size 9+ sandals for fun- and they

almost fit him.

My " special-ed parents " friends from my school district are trying to

re-group. We used to have an organization several years ago that just

burned itself out. But we have started to meet again and do some proactive

stuff. I have been wanting to get a website or listserve going so we can

share info. It has been so good to get together with some of these parents

again. And I have been meeting with a mom (Julana, who posted here a while

ago for a short spell) becuase she is getting ready to go to the state

about inequities with Ohio's waiver funding system. It is totally screwed

up (thanks to the state) and yet, some parents have been able to lobby to

get ABA/DTT programs funded, while those who have been higher up on the

waiting list have been shoved aside. I don't know how it is in other

states, but here it seems to be if your child has autism that you need to

utilize " ABA/DTT " only. There has been lots of lobbying to support these

very expensive programs, and families who might be asking for other

supports (like, RESPITE!!) can be left with no help at all.

So- I will send posts for some of the other messages. Good to be back!

Love,

mary Beth Mum to Ben, age 12

[Guest guest]

In a message dated 7/26/02 6:51:01 AM Pacific Daylight Time, paul.3@...

writes:

<< So my brothers and sister and I have been going back

and forth to Erie PA (Hi Gail! You are less than an hour from my Mom's!) to

help, but she really has needed soemone to just move in with her for a

couple of weeks to help get it all done. >>

Beth,

LOVED your updates! Hey, next time you are this way...let's get together! I

could meet you anywhere between here and there. Would be sooooo nice to meet

you! Sounds like you are having a good summer with PB. I'm waiting to start

homeschooling again so I can have a break! LOL

Gail :-)