A Halloween Adventure in Autism (11/7) Prayer Request for Catie (p.129)

[KathyRN137]

Hello My Friend!

Have not been on in a long, long time but so excited to see you have a TR, I
am going have to start at the beginning but wanted to say hi first! Will post as I catch up!

HI KATE!!! Oh My Goodness!!

So glad to "see" you... I've got chapter links on page one if that helps!


Kathy

 

[mrsksomeday]

Kathy, I am so sorry to hear about the budget cuts, thank goodness the special ed programs are safe for now. I can just imagine how emotional that meeting was. My heart goes out to all of you dealing with the issues you have to. Taking care of someone with a disability can be very challenging at times, I know, but you do a fantastic job .

It is so great that lady was a DVC member and they have been to Disney so much, that is wonderful.

(BTW, I corrected that link on my PTR, it doesn't have anything to do with FB now, thanks for letting me know)

 

[All7OfUs]

Thanks for sharing that, Kathy!! Sounds like things are looking ok, and glad that it was an encouraging meeting. I love when Providence brings someone in your life "who gets it"- and a DVCer to boot!

 

[jordanyosh]

Thanks for sharing that, Kathy!! Sounds like things are looking ok, and glad that it was an encouraging meeting. I love when Providence brings someone in your life "who gets it"- and a DVCer to boot!

ditto

 

[Charleston Princess]

Glad to hear you left the meeting feeling better! The nice thing about the special education IEPs is that they are protected by federal law. I can't believe New Jersey is taking away all state aid! Wow!

What a humbling experience to read about the woman and her son!

 

[KathyRN137]

It is so great that lady was a DVC member and they have been to Disney so much, that is wonderful.

I'm looking forward to talking with her again... wonder if she's a DISer? It may be a small world (after all!)

Thanks for sharing that, Kathy!! Sounds like things are looking ok, and glad that it was an encouraging meeting. I love when Providence brings someone in your life "who gets it"- and a DVCer to boot!

ditto

I could tell by the way her eyes lit up when I mentioned WDW that she was "one of us!"

Glad to hear you left the meeting feeling better! The nice thing about the special education IEPs is that they are protected by federal law. I can't believe New Jersey is taking away all state aid! Wow!

What a humbling experience to read about the woman and her son!

Very humbling... how can I complain, really? Billy has a lot of challenges, but I thank God for all the things he CAN do. Just being able to run around and play is a miracle.

New Jersey is in deep trouble. We will be losing a lot of bus and teachers' aides because they are going to eliminate all of their benefits. Basically they will all be let go and can apply for re-hire as part-time without benefits. Many will not come back, I'm sure.

Its so very sad. The aides may not have the education, but many are extremely experienced and work wonderfully with the kids. I feel so bad for them.


Kathy

 

[DisMomAmy]

Hi Kathy! Sorry to hear about all the funding cuts in NJ. We've been faced with potetial cuts here too... the biggest battle has been cuts to adult services - potentially putting a waiting list back in place (that we finally got rid of a couple years back) for kids transitioning to adult services at age 21 and new adults entering the system. Luckily that bill has been tabled thanks to the support of a lot of parents & individuals with disabities storming the state house last week. I'm sorry to say I wasn't one of those parents.

I'm so glad you made a local Disney connection!

 

[irish dancer]

So sorry to hear about the budget cuts. Illinois is also in deep, deep trouble and I'm cringing waiting to hear what will happen with our funding. The state has not paid out to schools in a long time and owes millions throughout the state.

The upside is that you met a new friend and a WDWer to boot! Sounds like she'll become a very good friend with so much in common.

Looking forward to the next update.........

 

[MEK]

Kathy -

I have been reading and hearing on the news all about all those budget cuts affecting NJ and I have to say that it disturbs me greatly. I even sent an email letter and signed a petition when I heard they took away the state funded afterschool program. I felt so sorry for those parents who had something like two days to find new afterschool arrangements. Heck, I am not even from NJ, but I wrote a letter anyway. I know that would have wrecked me to lose my aftercare.

I think that's great that you were able to meet someone at the meeting who has such similar interests. Very cool. I hope things remain sound with the special education funding.

Anyway - I can't remember if I read your last update. I think I started to twice and kept getting interrupted by things at home. I intend to catch up at home where I can see the pictures.

 

[maroo]

Then we agreed that WDW is really the only place where our families could vacation and feel "normal"... its so hard to describe this unless you are in a similar situation... but we exchanged phone #s and I'm sure we'll be talking soon.

Kathy

I am sitting here in tears. This is so true.

Lauren has been having a really rough time over the past few days. Her neck is so crooked now that they are talking about fusing it - and they have said it would be a very risky, painful and "awful" surgery. Nevermind she almost died after the surgery where they fused her back. They are really trying to avoid fusing her neck.

So they have ordered all of this junk for her wheelchair that holds her head straight. For this teenage girl, having all of this stuff around her hair and all of this equipment all the way over her head - well, she is really having trouble with it. It is a bit painful for her to have it all there (stretching muscles she can't use, etc)...anyway. In tears last night she said, "I just want to go to Disney World so I can feel NORMAL again."

Broke my heart in two. Then I logged on and saw this and you are so right...Disney is the perfect place for these kids (and adults) where they can get on the same ride as everyone else and are treated like everyone else in so many respects - and maybe like VIP's in some instances.

Thanks for sharing it.

 

[AmandaSparks730]

How so very sweet

Just a side note that I didn't include on my last TR, but while in the Magic Kingdom, a very friendly (older) CM noticed my hearing aids, and asked me how I was in English..and in sign language! Even though I don't speak ("speak") much ASL, it was still such a nice gesture. Who knows? Not *every* person with hearing aids is completely (or almost completely) deaf. I was one of the luckier ones (though my right ear is almost completely shot by now). Still, just the fact that this CM would even CONSIDER using ASL was so sweet.

Disney really is so magical!

 

[moparop]

For lack of a better term, it sucks eggs that the budget crisis is affecting schools like that. It just makes me crazy. I am glad to hear that they are going to make cuts without making changes to students' IEPs. Special education is so unfunded to begin with, those teachers cannot operate with less!

And I have goosebumps from your parent encounter!

 

[mousescrapper]

So... after the meeting ended we all stood up and I turned to her and said, "I've just got to give you a hug!" We hugged and she told me that she liked my Mickey earrings. I asked her if she had ever been to WDW with her son. She smiled widely and said they had been there eleven times and were DVC members!! Then we agreed that WDW is really the only place where our families could vacation and feel "normal"... its so hard to describe this unless you are in a similar situation... but we exchanged phone #s and I'm sure we'll be talking soon.

that is a wonderful meet...how encouraging to meet someone like that. and I ditto the WDW sentiments strongly

Our district is facing major cuts as wel....spec ed is not on the floor but will be re-evualted heavily next yr plus the new super comes from a previous district where spec ed was co-oped btwn buildings....um just not good. W/ 3 children recieving some form of aid direct and non direct...it makes me uneasy. I spoke about my concern and concern for raising class sizes at a public meeting.

I hope our new super is as gracious and sensitive to parents like us come next yr.

thanks for sharing


and sorry for the temptation

 

[mrsksomeday]

In tears last night she said, "I just want to go to Disney World so I can feel NORMAL again."

to Lauren. I am sitting her crying reading this . Bill says the same thing about WDW and being normal. I will be praying for her.

 

[KathyRN137]

Hi Kathy! Sorry to hear about all the funding cuts in NJ. We've been faced with potetial cuts here too...

I'm so glad you made a local Disney connection!

I seem to "find" Disney wherever I go! Hope your cuts aren't too deep.

So sorry to hear about the budget cuts. Illinois is also in deep, deep trouble and I'm cringing waiting to hear what will happen with our funding. The state has not paid out to schools in a long time and owes millions throughout the state.

The upside is that you met a new friend and a WDWer to boot! Sounds like she'll become a very good friend with so much in common.

Looking forward to the next update.........

Again... seems like we're all in the same boat. The states have been skating and not paying their bills. Now the kids have to suffer.

I'm just annoyed because one of the reasons I tolerate such high property taxes is that much of it, supposedly, was going to local education. Now our town won't be getting a dime and all my hard-earned money will go to schools in Newark and Camden. Blech.

I don't mind helping out, but hey! Don't take away all of our money!

Kathy -

I have been reading and hearing on the news all about all those budget cuts affecting NJ and I have to say that it disturbs me greatly. I even sent an email letter and signed a petition when I heard they took away the state funded afterschool program. I felt so sorry for those parents who had something like two days to find new afterschool arrangements. Heck, I am not even from NJ, but I wrote a letter anyway. I know that would have wrecked me to lose my aftercare.

I think that's great that you were able to meet someone at the meeting who has such similar interests. Very cool. I hope things remain sound with the special education funding.

Anyway - I can't remember if I read your last update. I think I started to twice and kept getting interrupted by things at home. I intend to catch up at home where I can see the pictures.

Great!

Two moms I work with are losing their kids' afterschool programs and now they are scrambling... especially the one who is a single parent.

The special ed funding is mandated federally, so I think the states have no choice but to continue. Billy's private school has changed his life tremendously... I wouldn't know what to do if we couldn't keep him there.


Kathy

 

[KathyRN137]

I am sitting here in tears. This is so true.

Lauren has been having a really rough time over the past few days. Her neck is so crooked now that they are talking about fusing it - and they have said it would be a very risky, painful and "awful" surgery.... In tears last night she said, "I just want to go to Disney World so I can feel NORMAL again."

Broke my heart in two. Then I logged on and saw this and you are so right...Disney is the perfect place for these kids (and adults) where they can get on the same ride as everyone else and are treated like everyone else in so many respects - and maybe like VIP's in some instances.

Thanks for sharing it.

I do so hope that the adjustments to Lauren's wheelchair help her improve her neck issues without surgery. But I remember from your report how much she fusses over her hair... she must hate the new head contraption.

to Lauren. I am sitting her crying reading this . Bill says the same thing about WDW and being normal. I will be praying for her.

Me, too. (And for her mom.)

For lack of a better term, it sucks eggs that the budget crisis is affecting schools like that. It just makes me crazy. I am glad to hear that they are going to make cuts without making changes to students' IEPs. Special education is so unfunded to begin with, those teachers cannot operate with less!

And I have goosebumps from your parent encounter!

It was a little bit of pixiedust in the midst of a serious meeting.

The Board of Ed will be looking to trim whatever it judges to be "fat" during the budget meeting next week. Everyone will be on eggshells until then.

Billy seems safe but Tricia starts public High School next year. They are talking cuts in music, art, theater, world language, and even sports.

Not knowing is the worst...


Kathy

 

[KathyRN137]

How so very sweet

Just a side note that I didn't include on my last TR, but while in the Magic Kingdom, a very friendly (older) CM noticed my hearing aids, and asked me how I was in English..and in sign language! Even though I don't speak ("speak") much ASL, it was still such a nice gesture. Who knows? Not *every* person with hearing aids is completely (or almost completely) deaf. I was one of the luckier ones (though my right ear is almost completely shot by now). Still, just the fact that this CM would even CONSIDER using ASL was so sweet.

Disney really is so magical!

Yes... the CMs are always trying to help, it seems. And guests usually are more tolerant... I don't think its just my imagination because many people have said the same.

that is a wonderful meet...how encouraging to meet someone like that. and I ditto the WDW sentiments strongly

Our district is facing major cuts as wel....spec ed is not on the floor but will be re-evualted heavily next yr plus the new super comes from a previous district where spec ed was co-oped btwn buildings....um just not good. W/ 3 children recieving some form of aid direct and non direct...it makes me uneasy. I spoke about my concern and concern for raising class sizes at a public meeting.

I hope our new super is as gracious and sensitive to parents like us come next yr.

thanks for sharing


and sorry for the temptation

Hey, just being on the DIS is temptation in itself!

I second your hope for a "good" superintendent... and also that your program isn't changed.


Kathy

 

[KathyRN137]

Well, I wanted to get going and post another update, but Billy has been hovering around asking for the computer very patiently... how can I say No??

I'll be back later...


Kathy

 

[WDWisOurHappyPlace]

Hi Kathy,
I have 2 children, DS-23 and DD-17. They were both born with global developmental disabilities, no diagnosis after seeing 3 genetic doctors. (I think I hold a record for going to the most IEP meetings. lol)They have both blossomed beyond what I expected them to from when they were young. We've been to Disneyworld 27 (maybe 28?) times. I really think our Disney trips have added to advance them to where they are now. And I so agree, when at Disneyworld, we feel "normal" and "happy", hence my user name.

(I got my daughter into reading the Teen Disney forum. She posts as "sallyfan". She posts little, but reads every day. It makes her day when someone responds to her posts. )

Oh, and to get on topic, I'm loving reading your trip report. You are a lovely person.

 

[KathyRN137]

Hi Kathy,
I have 2 children, DS-23 and DD-17. They were both born with global developmental disabilities, no diagnosis after seeing 3 genetic doctors. (I think I hold a record for going to the most IEP meetings. lol)They have both blossomed beyond what I expected them to from when they were young. We've been to Disneyworld 27 (maybe 28?) times. I really think our Disney trips have added to advance them to where they are now. And I so agree, when at Disneyworld, we feel "normal" and "happy", hence my user name.

(I got my daughter into reading the Teen Disney forum. She posts as "sallyfan". She posts little, but reads every day. It makes her day when someone responds to her posts. )

Oh, and to get on topic, I'm loving reading your trip report. You are a lovely person.

Hi, Mary, and welcome!

How many times have I said to my husband, "I wonder if they would make our Disney trips part of Billy's IEP?!"

Seriously! They are very therapeutic!


Kathy