Not even a brain tumor can keep me away from WDW!

[Lidian]

Totally loving the pics!

The teen years are just a few years away in my house ... (DD will be 10 in February) ... and she's already starting to show signs of teenage-dom. I can only imagine that it gets worse. She's a good kid, but wow, she has a mouth and it's her way or the highway. I guess that's why I want to focus on mommy-daughter time this trip ... because I'm afraid she'll get "too cool to hang with the parents and go to WDW".

Anyway, just keep it up! Loving the pictures and the mini TRs!

 

[sl_underwood]

Its been fun hanging with you guys today and being immersed in memories- in fact, it made me remember that I still have the empty scrapbooks from my 2010 trip, lol. Really need to do something about that. I will continue with the other trips but right now I must go and pretend to be Princess Leia in need of rescuing from Darth Vader, lol.

 

[lovethattink]

Lora, I had lurked earlier today before pictures. Then got caught up in the busyness of life, but I'm back now.

Anakin has been sick the last few days, and he keeps needing his mommy. Not so much me, but deep pressure. You know how that is. He was too sick for school the last two days, but today we had school.

I love the pics from your past trip! No wonder Goofy and your hubby hit it off so well. I noticed the Kiss shirt. My hubby was a head banger and still likes the older classic bands.

I can relate to life speeing by. Can't believe Grumpy is a high school senior.

I know what you all mean about feeling like it's a monologue. I've got umpteen pages and so many times I still feel like I'm talking to myself.

I hope you are having fun saving Princess Leia!

My son has been building legos free style and solo. So I've been able to catch up on the DIS and FB. He just came over here and announced that he has created ant legos and they really do hold twice their weight!! We just did a unit on turtles and insects in science today.

We will have to make a trip to Epcot because he insists the little video they have about turtles on the wall upstairs says something different than what his science book said. He wants to go and see if he listened wrong or if Disney has it all wrong, rofl. I sure hope the video is still there!

I'm going to need to get another science book, we are almost through this year's. Any suggestions?

 

[sl_underwood]

Tink,
Sorry Anakin has been having a rough time with sickness. I do know how that goes. I am usually busier but this week Luke has been taking care of me. He has learned to do dishes and does a very good job, better than his teenage sisters and he cleaned my house today, not perfect but it will do trying to be sweet. He made me a get well card too, which was very sweet. He is really trying to make life easier for me partially because he went to the oncologist with me (sadly I could not find a sitter, prob not the best idea, but you know how it goes) and she told me to limit stress and to rest up for radiation. She also said raising a child with autism had to be stressful and while I cut her off there, I am sure it affected him. He keeps asking me if my stress is low and he told Jess to stop being such a brat cause it could make me sicker. He also has been doing school work by himself. Basically, he hasnt done book work this week but he has watched a whole lot of educational netflix, played educational computer and leapster games, and used our file folders, lakeshore kits, etc. While I was planning to get back to the usual, I figure this may be the best for while I am struggling. He did do his handwriting without tears because he needs no assistance and he did some worksheets that I always have printed up and on his desk if he wants something to do. Today, he cut and pasted my card and wrote on it and while the words were somewhat spelled wrong, it was still school in my opinion. I know others may not feel like he is getting the best education but I figure we school year round and he is learning a whole lot of life skills which is all our public school teaches autistic kids. To me, school is learning and he is definitely doing that! Hope Anakin feels better soon.

 

[NiniMorris]

Tink,
Sorry Anakin has been having a rough time with sickness. I do know how that goes. I am usually busier but this week Luke has been taking care of me. He has learned to do dishes and does a very good job, better than his teenage sisters and he cleaned my house today, not perfect but it will do trying to be sweet. He made me a get well card too, which was very sweet. He is really trying to make life easier for me partially because he went to the oncologist with me (sadly I could not find a sitter, prob not the best idea, but you know how it goes) and she told me to limit stress and to rest up for radiation. She also said raising a child with autism had to be stressful and while I cut her off there, I am sure it affected him. He keeps asking me if my stress is low and he told Jess to stop being such a brat cause it could make me sicker. He also has been doing school work by himself. Basically, he hasnt done book work this week but he has watched a whole lot of educational netflix, played educational computer and leapster games, and used our file folders, lakeshore kits, etc. While I was planning to get back to the usual, I figure this may be the best for while I am struggling. He did do his handwriting without tears because he needs no assistance and he did some worksheets that I always have printed up and on his desk if he wants something to do. Today, he cut and pasted my card and wrote on it and while the words were somewhat spelled wrong, it was still school in my opinion. I know others may not feel like he is getting the best education but I figure we school year round and he is learning a whole lot of life skills which is all our public school teaches autistic kids. To me, school is learning and he is definitely doing that! Hope Anakin feels better soon.

I agree about the home schooling part! I get a lot of flack from some people complaining that we don't do enough book work. But in the last three months Mr D has learned his number words from zero to ten ( and he is a non reader) AND I haven't locked him in a closet one single time! LOL!!

We were actually told ot concentrate only on life skills...I prefer to think that life skills are a small part of our day, but he still needs the rest as well...


Nini

 

[cogero]

I agree about the home schooling part! I get a lot of flack from some people complaining that we don't do enough book work. But in the last three months Mr D has learned his number words from zero to ten ( and he is a non reader) AND I haven't locked him in a closet one single time! LOL!!

We were actually told ot concentrate only on life skills...I prefer to think that life skills are a small part of our day, but he still needs the rest as well...


Nini

oh gosh I hear you on the life skills. My little guy is only 4 but learning to eat with utensils and go on the potty is just as important as holding the crayon.

 

[lovethattink]

Tink,
Sorry Anakin has been having a rough time with sickness. I do know how that goes. I am usually busier but this week Luke has been taking care of me. He has learned to do dishes and does a very good job, better than his teenage sisters and he cleaned my house today, not perfect but it will do trying to be sweet. He made me a get well card too, which was very sweet. He is really trying to make life easier for me partially because he went to the oncologist with me (sadly I could not find a sitter, prob not the best idea, but you know how it goes) and she told me to limit stress and to rest up for radiation. She also said raising a child with autism had to be stressful and while I cut her off there, I am sure it affected him. He keeps asking me if my stress is low and he told Jess to stop being such a brat cause it could make me sicker. He also has been doing school work by himself. Basically, he hasnt done book work this week but he has watched a whole lot of educational netflix, played educational computer and leapster games, and used our file folders, lakeshore kits, etc. While I was planning to get back to the usual, I figure this may be the best for while I am struggling. He did do his handwriting without tears because he needs no assistance and he did some worksheets that I always have printed up and on his desk if he wants something to do. Today, he cut and pasted my card and wrote on it and while the words were somewhat spelled wrong, it was still school in my opinion. I know others may not feel like he is getting the best education but I figure we school year round and he is learning a whole lot of life skills which is all our public school teaches autistic kids. To me, school is learning and he is definitely doing that! Hope Anakin feels better soon.

That's too bad that he had to go with you and hear the comment. But it's excellent that he picked up the part about you needing reduced stress to get better. For him to empathize is awesome!! So sweet about the card and dishes! And that's great that he unknowingly practiced cutting and pasting!

Anakin forgot so much over Christmas break. We have been working on relearning what he forgot. Talked to the neuro when he called about the results of the 48 hour EEG. He said regression is normal and to be expected at times. He said it's good we homeschool so that he gets the one on one to relearn what he's lost. Otherwise he might slip through the cracks.

You are doing a great job with Luke.

I agree about the home schooling part! I get a lot of flack from some people complaining that we don't do enough book work. But in the last three months Mr D has learned his number words from zero to ten ( and he is a non reader) AND I haven't locked him in a closet one single time! LOL!!

We were actually told ot concentrate only on life skills...I prefer to think that life skills are a small part of our day, but he still needs the rest as well...


Nini

Life skills are important! While my son is re-learning how to read and do addition and subtraction, he is also re-learning how to dress himself.

oh gosh I hear you on the life skills. My little guy is only 4 but learning to eat with utensils and go on the potty is just as important as holding the crayon.

Yes it is.

 

[NiniMorris]

That's too bad that he had to go with you and hear the comment. But it's excellent that he picked up the part about you needing reduced stress to get better. For him to empathize is awesome!! So sweet about the card and dishes! And that's great that he unknowingly practiced cutting and pasting!

Anakin forgot so much over Christmas break. We have been working on relearning what he forgot. Talked to the neuro when he called about the results of the 48 hour EEG. He said regression is normal and to be expected at times. He said it's good we homeschool so that he gets the one on one to relearn what he's lost. Otherwise he might slip through the cracks.

You are doing a great job with Luke.



Life skills are important! While my son is re-learning how to read and do addition and subtraction, he is also re-learning how to dress himself.



Yes it is.

(Look...I'm attempting to hijack a thread! LOL!)

I know what you mean about the re-learning! After the accident, the doctors would have been happy with ANY purposeful movement on Mr D's part! Sometimes I think I am getting greedy. I remember so distinctly praying just for him to live! I remember taking each breath with him.

With each new skill learned, I want more! Now that 7 years have passed, I am working towards making him as independent as I can. To get him where he can read the back of a mac and cheese box and be able to make it himself would be so fantastic! (I know I will not be around forever, and I don't want him to be a burden to his older brothers and sisters... although I know perfectly well they wouldn't think twice about it!)

One of my most cherished memories from the hospital days was when her remembered he was potty trained! To me, that was bigger than him learning to swallow again!

.....


We now return you to your regularly scheduled PTR!


Nini

 

[nesser1981]

Prayers to you!

My 6 year old just finished her second battle with cancer. She had to have 16 radiation treatments. It wasn't too bad for her!

Praying all goes well for you guys and you have an awesome trip!

 

[sl_underwood]

:Welcome: Nesser! Thanks for the prayers. I am hoping to do well seeing as I have a family to take care of and while I have taken a leave of absense from my job, there is still so much to do just being a mom. Thankfully, Stephen is a huge help, such a great hubby and Luke does pretty well. Jess is mad that her life will have to change a little but I suppose that is part of being a teen.

Nini, hijack away. I completely get it. My son also has a traumatic brain injury along with the autism. I was told that he had some speech before we got him but he didnt really have any after. We had to work hard for every ounce of progress. The schools made no effort to aid him which is why we had to start homeschooling him. It was really our only option. I am really doing all I can to continue homeschooling while I deal with these health issues. I am worried though that some well meaning idiot will call CPS about educational neglect or something. IT has happened to us before, but what they dont realize is our schools teach nothing so anything we do at home is better than what he would get there. In addition, he isnt getting picked on or learning innapropriate behaviors or being bullied by the professionals that are supposed to be there helping him. Sorry, our experience with school was not good. That being said, I want to keep making progress so we do stuff every day. We may not do everything we usually would do (school for us is usually an 8-3 Mon-Sat deal) we do get a great deal done. It just happens to be a little less than we used to . Someone else told me that kindergarten could take less than two hours a day to teach and I hope they are right. I figure we will have a whole lot of educational videos- suggestions welcome, and computer games and other things he can do independently while I rest. I want to keep him busy all day if possible cause he gets in less trouble if I direct his activities, just have to find a way to do it and heal at the same time. I have been told I will need lots of rest so trying to figure all of this out. Kind of stressful.

 

[NiniMorris]

:Welcome: Nesser! Thanks for the prayers. I am hoping to do well seeing as I have a family to take care of and while I have taken a leave of absense from my job, there is still so much to do just being a mom. Thankfully, Stephen is a huge help, such a great hubby and Luke does pretty well. Jess is mad that her life will have to change a little but I suppose that is part of being a teen.

Nini, hijack away. I completely get it. My son also has a traumatic brain injury along with the autism. I was told that he had some speech before we got him but he didnt really have any after. We had to work hard for every ounce of progress. The schools made no effort to aid him which is why we had to start homeschooling him. It was really our only option. I am really doing all I can to continue homeschooling while I deal with these health issues. I am worried though that some well meaning idiot will call CPS about educational neglect or something. IT has happened to us before, but what they dont realize is our schools teach nothing so anything we do at home is better than what he would get there. In addition, he isnt getting picked on or learning innapropriate behaviors or being bullied by the professionals that are supposed to be there helping him. Sorry, our experience with school was not good. That being said, I want to keep making progress so we do stuff every day. We may not do everything we usually would do (school for us is usually an 8-3 Mon-Sat deal) we do get a great deal done. It just happens to be a little less than we used to . Someone else told me that kindergarten could take less than two hours a day to teach and I hope they are right. I figure we will have a whole lot of educational videos- suggestions welcome, and computer games and other things he can do independently while I rest. I want to keep him busy all day if possible cause he gets in less trouble if I direct his activities, just have to find a way to do it and heal at the same time. I have been told I will need lots of rest so trying to figure all of this out. Kind of stressful.

Mr D also has 4 hours of therapy weekly...so we count that as school time. He got a Mobigo for Christmas. He LOVES that! All those educational games that he thinks are just fun! We use that as a reward system. We also use the Kinnect for Xbox 360 as PE for him. (doesn't realize he is exercising!)

We do things like bake cookies (measuring and some reading) He helps with grocery shopping ( sorting, following directions, comparison); putting the groceries away (again, sorting, following directions); going out to fast food restaurants (I make him compare the prices of all the items...he still gets the same thing every time though...he has to have the routine to make him happy LOL); basically everything we do is a school experience.

He has done the 'Disney School' so much he doesn't want to do that anymore! But I use the Vacation Education series to tie in unit studies with a Disney theme. My older daughter loved it. Was kinda cute last trip to see how much of it she retained. She was able to spout off facts at different places in Epcot...one person asked what guide book she had!

We have found Mr D does better with non conventional learning. His doctors and therapists have been wonderful in helping to come up with ideas for 'lessons' with him. When I first started HS him, he couldn't even hold a pencil. Now he is able to copy words...well at least he can understand what he wrote... We also use the HWT method. His OT first started with it. I love it!

We look through the Netflix movies to find something with an educational value..especially about animals. (last night for family movie night we were watching Jungle Story...my older daughter mentioned that there were no bears in India...and he quipped up..."yes, there are three kinds the sloth, brown and black" She didn't believe him and after she checked she had to admit he was right!)

Sorry...rambling again!

I'm not sure where your son is educationally, but one website that my son has loved since he was around 4 has been Starfall.com. He still plays with that when he is downstairs with me in the studio!



Nini

 

[lovethattink]

We use handwriting without tears too! We have been using the Abeka Video School for K and 1st grade, but I don't think we will use it for 2nd. Because it is making the school day about 8 hours with all his attention breaks. He does well with the structure of Abeka. There are no surprised and he knows what to expect every day, which he likes.

Lora, when we did kindergarten it took us about 3 hours. Probably 2 if he didn't need to take all the attention breaks.

Nini, we do learning like that too. Yesterday he was having trouble with greater and less than. So I got out a Lego catalog. I told him that more than $25 was expensive and less than $25 was affordable. He loves looking at every single Lego in the catalog and having me read the description. So after I read the description to him, I had him tell me if it was an affordable Lego or expensive. He loved it and even started adding prices together to see if he could get more than one Lego. His math unit started double digit adding. He had way more fun with math this way!

 

[sl_underwood]

Nini, Luke is pre-k/kindergarten so very behind. We do many of the same things. He loves the leapster and nickjrboost (even though it is really to young for him) and he has a ton of computer games that promote learning and problem solving. He has a multitude of issues including hearing loss and PTSD in addition to the TBI and HFA issues. We started with HWOT with our younger dd when she was struggling to write and it worked so well that we chose it for Luke too. We tried the Abeka handwriting for awhile and it was not a good fit. We have the Abeka K curriculum and do use it but I am not sure its a good fit for us either. I honestly dont know if there is a curriculum that would work for Luke. Still trying to find one. Would love to hear any suggestions.

 

[DizNee Luver]

Hi Lora,

Glad you stopped by my PTR so I would know about yours! Will be keeping you & your family in my prayers as you deal with this tumor & deciding on treatment.

So sorry to hear that the schools weren't helpful & you're now having to look at other options. I'm not sure I would have the patience to do homeschooling. I'm definitely not trained to "teach" & with the special needs of the twins, I need all the help I can get. Right now we're getting awesome help through early intervention, but this summer they'll transfer into the school district. It does sound like they work hand in hand here, so that's good.

So how long will you be at WDW & have you picked where you're staying yet? Maybe we'll be able to meet up for a quick hello!!

Looking forward to reading more!

 

[lovethattink]

Thinking of you today. Hope all goes well!

 

[Moodyzblu]

Hi !! Joining in.

I love all the pics from your past Disney trips !! Seeing families in Disney is one of my most favorite things. Looking forward to hearing about all your upcoming plans.

 

[sl_underwood]

Thanks Tink, I am doing better today. Yesterday was kind of rough. I hate being in pain and I think the tumor is messing with my moods. I seem to cry all the time and I am so not a crier.

Diznee Lover :Welcome: I know what you mean about feeling unqualified to homeschool. I dont always feel qualified but our public schools here give these kids nothing. Their special ed classrooms are a joke, He had a great experience in pre-k. His teacher was wonderful, she actually chose to teach special ed. K and 1st, this was not the case. He lost all the information he learned in pre-k and none of his IEP goals were being worked on. The teachers were overwhelmed, unorganized, and I am not sure why they were teaching special ed but I really dont think it was by choice. I would ask about curriculum and they told me there was none. No papers being brought home, when I asked what they did all day, I was given no information. Every time I went to the school I would see kids in various therapy equipment that limited their movement and the teachers and aids were sitting around chatting ignoring the kids. It didnt matter what time I showed up, this was the case. Luke was the only child in this class who was even capable of speech and he was the highest functioning child in the room. They made no efforts for inclusion or no attempt to try and find something to encourage him to learn. The first grade teacher told me I should just be happy that someone else was dealing with his behavior 7 hours a day and not expect anythign more. I wasnt willing to do this. Homeschooling him frankly scared me. I didnt really think I could do it but in the last year and a half he has learned and improved more than he did in k and 1st grade so I must be doing something right. I think its great that you have such a great school program. Life for us would be very different if we had lived somewhere with great school support.

As for trip specifics, we are planning to stay at AOA- since it is Jessa's bday and that is where she chose and we are thinking the 4th through the 11th so 8 days. Of course our plans are not set in stone at this point. There is a good chance they will change as they nearly always do.

Moodyzblu- :Welcome: glad to have you here! Being a single mom must be very hard. I cant even imagine. I am enjoying reading about your plans as well. MAW is such a great organization. I am so glad they can help so many amazing kids!

 

[cogero]

I am in the process of going from preschool to the NYC department of education. I have heard horror stories and I am petrified since J is non verbal and he can't tell me if something is wrong so I am taking it one step at a time.

 

[lovethattink]

I am in the process of going from preschool to the NYC department of education. I have heard horror stories and I am petrified since J is non verbal and he can't tell me if something is wrong so I am taking it one step at a time.

Chiara, does NY have a homeschooling legal group or a state support group that can advocate and/or direct you if you need it? We do in FL. We have the FPEA and HSLDA. I am a member of a local homeschool group and the FPEA state group. I probably should join HSLDA since my youngest has many years of school left.

 

[sl_underwood]

So I just did a quick calculation and it looks like May 27th is my 180+10 dining reservation day, so that gives me a little over 4 months to figure out where we are going to eat. Any suggestions?