Need a bit of PD and answers

[Tiiiigergirl]

Just feeling a bit overwhelmed today. Brandon has been doing worse and his most recent report from children with special health care needs has diagnosed him with Autism (HF). This is in addition to the mild CP, Tourette Syndrome and severe ADHD. I keep wondering when it will end. To make things worse, the state has a waiting list for people with disabilities to get funding. (I know this is illegal. They are currently suing the state.) We are both on the waiting list but it looks like another fiscal year will come and go with no funding.

I need a Disney vacation! So even though it will be another couple of years before I get to go again, I am going to start planning it. I think it will make me feel better!

We have in the past been able to have our son spend some time in the various kids clubs. By the next trip he will be just a smidge too old. But he of course can not be left alone. I hate to miss getting to spend my evening at Pleasure Island. What if anything can parents do?

 

[ducklite]

Have you considered an in room sitter? They don't have age restrictions. I would try Fairy Godmothers. Explain the situation when you call. I think much also depends on your child. Is your child verbal and able to toilet on his own or with minimal assistance? You mentioned that he had gone to the kids clubs prior, so I'm assuming the answer is yes to both of these questions. If your child could be in a group childcare setting at WDW there's no reason that Fairy Godmothers wouldn't be an option. If they are not be able to help, maybe the VNA would.

Let us know what you come up with!

Anne

PS--My son also has severe ADHD with bi-polar disorder and multiple learning disabilities. It DOES get better Also, if you are medicating for the ADHD, we switched to Concerta about six months ago, and it's been like a miracle! You might want to talk to your Dr. about it

 

[SueM in MN]

Here's some more PD for you.
My DD has cerebral palsy and a number of other challenges, including ADD. She doesn't have a lot of other specific things diagnosed, but she is obsessive/compulsive about a lot of things. She is what she is, no matter what diagnosis she has. My point is that you have some new "letters" attached to your son, but the letters don't really change your son. Maybe (especially once they get the funding going again) those letters will help other people better understand his needs so that they are beter able to help him.
Anne had a good idea. We've never used Fairy Godmothers, but I know people have posted on this board that they have used FG for children with disabilities (even ones over the age of 12) and they were pleased with the service. Here's a link to a Family Board thread about FG.
Have fun planning.

 

[SueOKW]

Nicely said Sue.. just more letters ... amazing what we all learn to accept - and so impressive to others at how strong we can be!! (little do they know!) good thing we have a board like this that we can turn to when feeling overwhelmed!

I used FG and it was worth it. Tiigergirl, plan away! (and in the meantime, perhaps some wish granters can get you there sooner... the kiwanis club perhaps?)

Sue

ps - pitchers and catchers have reported, so spring is just around the corner!

 

[ducklite]

Oh, I thought of a couple other things for you...

First, have you applied for Federal SSDI for your child? There are household income restrictions, so you may or may not qualify.

Next, are you getting the appropriate services from your local school district? If not, take them to court. I did, and represented myself. Just make sure you have all of the documentation with you. I came in with a bankers box of correspondence from the district, doctors, you name it, it was very organized, I had copies of everything for both the judge and the district. I won, the local district now pays out close to $40,000 a year for a private school and transportation because they wouldn't develop an appropriate curriculum in the public school. This order stands until either he graduates or the private school and I decide that it is no longer the most appropriate placement for him. The district can't say a word about it.

Last, when you say a "smidge too old" how much of a smidge is it? Under the ADA your son is entitled to "reasonable accomodation" and if he's within a month or two of the cut off, I think that it would certainly fall under the terms of the ADA. You could at least ask. You'll want to speak directly to someone at WDW special services, do'nt ask at the clubs or the regular reservation phone line.

Good luck! Like I said, it does get better.

Anne

 

[Tiiiigergirl]

Thanks everyone! I needed that.

He is toilet trained and verbal (Aspergers- so maybe too verbal on some days ) so depending he did fairly well in the clubs. Unfortunately he is decompensating rather than improving. He used to be able to go to daycare when he was off track and did not want to chill at home. Has since been kicked out so we are trying to find something for him to do. Year round school is such a pain.

Happily we are in the best school dist in the state for disabilities and they are trying to be very accomodating for him. Since he is newly diagnosed with the Autism, they would even consider moving him to the Autism cluster program mid-school year. This of course has to be weighed against the disadvantages of moving a rigid child. Ah well, we will all make it through it.

I will check out the link for Fairy Godmothers. I think by the time we get there he will be at least a year too old and the workers will probably feel he will just be physically too big. This is really ironic because when we adopted him he was a failure to thrive kiddo. He was age 4 and everyone thought he was the most intelligent 2-year-old they had ever heard!

Anne: is Concerta a stimulant? With the Tourettes we can't medicate the ADHD with stimulants since it makes the other worse.

Thanks again everyone. The sun is shining here and I'm feeling better. Sorry for everyone else who is buried in snow. May you dig out very soon and send some moisture our way. We are in a 5-year drought!

 

[ducklite]

Concerta is a stimulant--it's basically Ritalin but uses a different delivery method to smooth out the peaks and valleys. And you're right, it's contraindicated for use in patients with Tourettes. Have you looked into tricyclic antidepressives? I was reading an article a few weeks ago that was talking about that. It sounded very interesting and hopeful. We also used biofeedback for awhile and it seemed to help quite a bit, and I've heard it can also be helpful for Tourettes. In our case once we got the Bi-Polar diagnosed and properly medicated (that took two years of touch and go medication adjusting!) the ADHD seemed to become much more manageable as well.

I would still make a call to special services and ask about using the kids clubs, although he'll probably have more fun with a one on one caregiver who can adapt to his needs The price difference isn't that much. Plus I think with one on one you're a lot less likely to get "that page"...

Because he is rigid you might want to try it in two steps. The first night have the sitter come for whatever the minimum time is, and you and your DH go out to dinner right at your resort, then maybe have a cocktail in the lounge. That way if you are paged you're only moments away. Once it "proves out" you'll feel confident going out for a "night on the town". Make SURE they know it's IMPERATIVE that you get the same sitter both nights.

Anne

 

[SueM in MN]

If licencing for the kids clubs is like licensing in MN and Wisconsin that I am familiar with, the kids clubs wouldn't have any latitude about age. A day over 12 wouldn't be allowed by the license, even if it's a special needs kid. (although it's still worth calling to see).
You could also try calling WDW Resort Special Reservations:
(407) 939-7807
(407) 939-7670 [TTY]
It's not something that's in their list of services, but they may have some suggestions if FG won't work out.

 

[nancycels]

I don't have any suggestions, my kids disabilities aren't as severe, primarily mental retardation, but I figured a little extra pixie dust might be in order!!! <g>

 

[tink2dw]

A word on planning,We had 5 really bad years of money troubles,we didn't even have enough money for food,and that was the hardest part!!

But what got me through the tough stress and depression was planning my Dream WDW trip. I would go to the library and spend 1 hour, their limit, on the internet pricing out trip after trip. I learned how to watch for airline sales. And found discounted hotels offsite,I studied maps of Orlando,I read WDW Guide books borrowed from the library. I would stop by travel agencies for Disney Travel bouchers. Of couse this all pre-dated finding the DIS. When I found these boards and saw that other poeple loved Disney even more than I did,I knew I had come to a really good place. Then to find out they were willing to share all their secerts....well I was in Heaven. So,for me Disney planning was a good de-stress-er!! And in the end,I finially went on that DREAM WDW!!

So,plan plan plan till your dream comes true!!

ps Watch the Rewards Board for Cash rewards for Test Driving cars!! I just made $250. from 5 test drives!!

 

[s&k'smom]

Tink you took the words right out of my mouth. I couldn't agree more, even if you can't go treat yourself to a Disney book. I did the years we aren't able to go and boy does it help to read away my troubles when my son (with the PDD diagnosis) gets me going! And keep on Dising. We are all here to help each other through those tough times. We took our son last Oct and he had a great time. Hey even a few days by one of those Disney pool is fantastic. Oh and yeah check out if you qualify for SSI and go on one I'm sure your state government is on line and you can find out what your rights are. Especially on a federal level. Anyway just wanted to add my PD for you. I had an especially tough week last week with DS and these boards were my saving grace.

 

[SueM in MN]

Here's another good resource . This is the PACER Center. They are based in Minnesota and are for MN residents, but the organization is a model for similar Parent Advocacy Coolaitions for Education Rights nationwide (that your taxes pay for).
The PACER Center has links to national and local programs.

 

[Tiiiigergirl]

Thanks guys. I'm feeling much better. Isn't it funny how much of a roller coaster life is?! Now this morning was something else. We recently moved to home that is disabled accessable for me. We built it with extra wide hallways and doorways and a kitchen that I can occasionally cook in even with my balance problems. The best part is the bathroom where I can sit and shower. I got to throw out the rickety shower chair. But I digress.....One of the new features are the low water toilets. My dear sweet son can not wipe his backside with less than half a roll of toilet paper. Picture if you will, Momma with her balance problems attempting to plunge a plugged toilet. I was not laughing. I've not seen it but just heard the title of the show my life is a sitcom. That was how I felt this morning. Thinking about it now, though I think I must have looked pretty funny.

Oh and thanks for the link Sue! We actually have something pretty comparable around here. We call them family councils. I just barely went to my first meeting but they actually have child care! Finally a meeting where I can attend because Warren can drive me and Brandon has someone to play with/chase after him.