beth

February 4, 2008

Beth,

This is exactly what I do, pack a bag of his favorites depending where

we end up.

Most of the time, try to pre-warn and he usually packs up what

he wants and this is fine.

This behavior is sort of like my husband's attitude, " don't really

want to be there feeling " , so it is how to work around it.

I goofed on the age of my niece's little one and I meant 19 or 20

month old, near the terrible 2's mode.

Good luck on your mission.

Irma

>

> Thanks, Irma! You know, loves movies and we have portable DVD.

I always hesitate to bring it, wanting to join in the party, but

your email made me think about that. Why not let him be comfortable

and watch it if needed? So I'll try that. We had a Super Bowl party

here at our house last night, with lots of kids here, and was

fine. No hitting at all. I think it was because he was in his own

space and had lots of choices about where to go, when to eat, what to

do, etc. So I think next time we go to someone else's house, I'll take

the DVD player, his favorite snacks, and a favorite toy, find a quiet

room, and let him make some choices. Thanks! And thanks to all who

emailed that they " get it, " that helps a bunch.

>

> Beth

February 4, 2008

When we go somewhere with ELie (as in visiting friends), he takes his Elie

bag with a couple of VCR, DVD's, extra batteries, his head sets, and tape

player. Then he can zone in or out and actually is more social than he

would be without his " props " . Much better then when he was younger and I

wanted him to be " normal " ! Then we wouldn't allow him to do more than take

a baby. Stupid us! Life is better when I can be flexible, since he cannot

be.

> Thanks, Irma! You know, loves movies and we have portable DVD. I

> always hesitate to bring it, wanting to join in the party, but your

> email made me think about that. Why not let him be comfortable and watch it

> if needed? So I'll try that. We had a Super Bowl party here at our house

> last night, with lots of kids here, and was fine. No hitting at all. I

> think it was because he was in his own space and had lots of choices about

> where to go, when to eat, what to do, etc. So I think next time we go to

> someone else's house, I'll take the DVD player, his favorite snacks, and a

> favorite toy, find a quiet room, and let him make some choices. Thanks! And

> thanks to all who emailed that they " get it, " that helps a bunch.

>

> Beth

>

> Re: Beth

>

> Yes, add this to our once upon a time from our chapter life of having

> to go through this too.

> Too many times had to get up and leave or embarrassed or upset that we

> could not have a life anymore.

> Once in a blue moon one of those moments will kick in but at least I

> can step back and figure out how to work around it and still have my

> son still included on some occasions.

> It really depends if it is worth it to have him around some type of

> exposure that to me is challenging enough if I would go through some

> drama with him or why put him through something he does not have any

> connection or undergo feeling some type of being overwhelmed.

> Like if we go to the mall, it has to about him, in & out on whatever

> we went for and probably throw in a lunch date, eating at the food court.

> If visiting some friends or family have to have his sensory items or

> his personal DVD player with his favorite movies of the week.

> Yesterday we spent some time with my dh's brother for a birthday

> gathering. We were able to actually enjoy eating at a Chinese

> restaurant, then headed over to my BIL's house and he knew exactly

> what to do, he went straight over to the room that his Uncle has set

> up for him after he followed some of the routines given, like restroom

> first then watch his movie, given a choice if we wanted to hang out

> with us or of course to watch his DVD of the day. Giving him choices

> even if we knew exactly what he was going to choose but it was having

> him to engage in some form of communication form, giving him that

> power not us telling him what to do.

> My husband and I were able to enjoy our time, playing some dominions,

> visit and watch a cute show (Barn something with a catchy tune) with

> their about 9 month old granddaughter.

> Back at the restaurant though had to share this,

> This time it was their turn while waiting at the restaurant, the baby

> could not sit still, was up and down then if one of them carried her,

> she would get mad or throw herself, etc.

> Of course we all spoke about how we use to go through this for

> numerous of years. Babies daddy said, call him when we ended up

> getting set up at the table as he was taking her to the vehicle to

> watch her favorite DVD.

> I looked over at and he just gave me a smile, then we were

> seated, baby and her daddy are back but baby decides she is a little

> thrown off from her routine, so she is not hungry and begins to throw

> things or food given to her. I could see how her parents were getting

> to feel frustrated, so of course we all helped with what we could and

> we all survived it.

> But this left me thinking, could this be the age or mentality level

> was undergoing, stuck in for numerous of years? At at an age

> range of a 9-10 month old level, hmm. Meaning still developing here.

> Back at my BIL's house.

> While was settled, baby roaming around and of course let her

> be, then I noticed her parents (my niece & her dh) were getting

> frustrated once again, so of course Great-auntie (me) just told

> everyone that I had to watch her favorite show with the catchy tune,

> sure enough once she heard the music, she was smiling, dancing, and

> then sat down, then her parents seemed relief and everyone had joined in.

> Then the show was over, it was near her bedtime, so it was my time to

> go and check on but actually his dad did, to see if he wanted

> to join us, he said " no " . Then we went back into mingling and then

> when his movie was over, he was ready to join us.

>

> Checkout our January local newsletter.

> Page 8, this is coming from one of 's brother Rick who had

> shared this piece on " Meet " . : )

>

> http://www.dsasa.org/newsletters/newsletter_01_08.pdf

>

> Irma,19,DS/ASD

>

February 8, 2008

Hi Beth,

I'm sorry that is still suffering. Are you giving him Miralax 2 x day?

I would definitely call the doc, he must just be feeling awful.

Keep us posted,

Jayne

B DeHoff wrote:

Beth (up late worrying; is still impacted; day 2 of Miralax; will call

docs AGAIN tomorrow)

check out the view from my shoes at

www.wickedbusymomto3.wordpress.com

---------------------------------

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

February 8, 2008

Geez, I hope he goes on his own tonight or tomorrow morning. had the

fever last time we ended up in the ER (the time they thought he had appendicitis

due to such belly pain). The bag of fluids really helped soften things up

combined with the miralax twice a day.

Warning - when he goes once - it won't be the end, I'm sure it will happen

quite a few times and it won't be solid! Get some disposible gloves and wipes

and plastic bags ready, oh and air freshener too!

Best of luck!

Jayne

stellarah wrote:

I will pray for you Beth. I've been there with a, so I know

what your going thru.

Stella

>

> Beth (up late worrying; is still impacted; day 2 of Miralax;

will call docs AGAIN tomorrow)

>

> check out the view from my shoes at

> www.wickedbusymomto3.wordpress.com

>

> ---------------------------------

> Be a better friend, newshound, and know-it-all with Yahoo!

Mobile. Try it now.

>

February 8, 2008

Try to increase fluids so that MIralax has some liquids to pull from.

> Thanks. The Xray shows a fecal impaction. We will up Miralax, do enemas

> Sunday if it doesn't clear, and if it's still stuck Monday, or if he gets

> fever and/or intense pain, he may be admitted.

>

> I'm going to be off email most of the weekend, but thanks for your

> concern, and I'll be sure to update you by Monday. You guys are great.

>

> Beth

>

> beth

>

> Hi Beth,

> I'm sorry that is still suffering. Are you giving him Miralax 2 x

> day? I would definitely call the doc, he must just be feeling awful.

>

> Keep us posted,

> Jayne

>

> B DeHoff <bdehoff@... <bdehoff%40iquest.net>> wrote:

>

> Beth (up late worrying; is still impacted; day 2 of Miralax; will

> call docs AGAIN tomorrow)

>

> check out the view from my shoes at

> www.wickedbusymomto3.wordpress.com

>

> ---------------------------------

> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it

> now.

>

August 21, 2008

Oh Beth dont worry about me pushing I will I have a big mouth and I can get loud

and unruly if I have too. Yesterday I called the pharmacy because they cant seem

to get Mics script for pediasure right and I told them in no uncertain terms I

will go to Channel 6 and the newspaper and explain how my downsyndrome/autistic

child is being denied his script. Well they called me at 9am this morning and

told me it was all taken care of and ready to be picked up.Ive spent $600 on

pediasure for Mic in a month that his med waiver always paid for. Once I get mad

enough so far have won most my battles. Its unfortunate it has to be that way

but the squeaky wheel gets the grease for us.

To: @...: bdehoff@...: Thu, 21 Aug 2008

14:03:26 -0400Subject: Re: I am trying to change Mics school

OK, well then it sounds like the new school would be a good option. The three

keys in placement are:1. free2. appropriate3. least restrictive environmentSince

the new school is not in your district and only for kids with disabilities,

you'll have to push why the new school is far more appropriate for Mic, which

could trump the LRE requirement (that the current school has more of).Good

luck!Beth

I am trying to change Mics school2 of the best teachers and one

administrator are leaving Mics present school. They are moving to another

school. I have discussed this with them at length and I want Mic to go with

them.They think Mic does not need a full day of ABA anymore and should be

included withh other children that are not just autistic.They think he will

benefit more by being included with other children.Mic has not made much

progress this year and he knows the ABA routine. He will still get some ABA but

not a entire day. This school offers alot more therapy. Music therapy, aquatic

therapy, and some other programs I currently cannot get.It hasnt happened yet I

have just begun to contact the school district and its CSE Chair person. Just

wondering if anyone has any thoughts that might be pertinent to bring up before

I start this journey. Thanks

Laurie__________________________________________________________Get thousands of

games on your PC, your mobile phone, and the web with

Windows®.http://clk.atdmt.com/MRT/go/108588800/direct/01/[Non-text portions of

this message have been removed][Non-text portions of this message have been

removed] __________________________________________________________Get thousands

of games on your PC, your mobile phone, and the web with

Windows®.http://clk.atdmt.com/MRT/go/108588800/direct/01/[Non-text portions of

this message have been removed][Non-text portions of this message have been

removed]

_________________________________________________________________

Talk to your Yahoo! Friends via Windows Live Messenger. Find out how.

http://www.windowslive.com/explore/messenger?ocid=TXT_TAGLM_WL_messenger_yahoo_0\

82008

August 25, 2008

You go, Laurie, from one squeaky wheel to another. : ) Keep us posted.

Beth