Making a Special Guidebook for my ADHD & ASD son NEW 4/15/11 Post#91

[mousescrapper]

*** Please note this is progressing thread...I continue to update and add new ideas based on the trips were are taking...I hope some of my experiences and "gifts" can help you and your children have a MAGICAL time at our Happy Place!

Awhile back I was posting here about social stories/ schedules for children w/ ADHD and ASD like my DS. Well here is part 1) about this special guidebook I’m preparing for Nathan my DS who has ADHD and Aspergers. Well I just printed some of my materials for this and have time today to start this story.

First some background info on Nathan. As of OP: He’s going to be 9 in May, in 3rd grade, he’s a twin to Rebekah and this is his 2nd trip to WDW. However this is his first trip w/ this now known diagnosis. He was just turning 6 when we went in 05 and was nearing the end of his Kindergarten year in school. Looking back since birth and more so at age 2 DH and I always worried something wasn’t quite adding up for him and it was more apparent against his twin sister. Now they were both behind physically w/ developmental growth and Nathan had some speech issues. At first Rebekah was being treated for PT/OT for a serious physical delay in walking. Well Nathan of course was tagging along and the therapists started to notice he was struggling too. At first it seemed so subtle but as he grew, Rebekah was grasping age appropriate skills and Nathan was slipping behind. Once in pre-K things became more apparent and then definitely 3 years later in 1st grade. He was first diagnosed with Sensory Processing Disorder…after full fledge doing everything for that, we began to see more things that weren’t being helped. Finally in 2nd grade he was seen by a developmental psychologist and then that summer (07) he was diagnosed by a psychiatrist with the above disorders. This diagnosis was a long time coming and as hard as it is, it’s good to know and understand ways we can try and help Nathan learn and cope with the many things that cause hurtles in his young life.

Which brings us back to Disney…how was he the first time you may ask? Good I recall, we had our moments but so did Rebekah and Rachel. But things that didn’t bother him 3 years ago are like mountains for him now to cross. Things I’m worried about for him and this trip?

Crowds: feeling to “tight”
Lines and waiting: even if it’s something he wants to do, it’s extremely hard, he may just rather pass (but then feel let down)
Noise: he’s very sensitive to loudness and if he’s just the slightest bit “off” a noise he’s even used to can really bother him
Things not going according to plan: w/ Aspergers when you have a preoccupation or thought about something and it doesn’t go according to that thought in his head….uhoh
Over stimulated: he is generally a sensory avoider, something hard to do at Disney.
Feeling “lost” overwhelmed w/ the amount of choices: hence the need for a plan!

What to do?
Well you know we’re going. So as his Mom I pray of course, and do whatever I can to prepare him ahead of time, while we are there, and hope for the best!

One of the best things I think I can do to equip him is for him to have his own special guidebook completely designed just for him.

Here’s my plan:
Make a book, which is durable for the parks, but nice to have later as a keepsake.

Have sections for each day at the World, in parks and not.

Have it be visual and easy to navigate.

Have written reminders geared to him about each step of the trip to keep him prepared

Have social stories for various potential problems to prepare him ahead of time and then use if something happens. (like it’s raining hard, we can’t stay or the ride is shut down or he gets scared on a ride)

How to make it:
I bought this clever chipboard (heavy/thick like cardboard) mini binder

I also stocked up on Disney inspired pages and scrapbooking supplies to add pages in it and decorate. (I plan to cover the chipboard in paper and then add pages inside that will be double sided and laminated)

The biggest part will be making custom itinerary stickers (from printable sticker label sheets). These have pictures I downloaded from online and the written reminders about each ride, etc.

How it will work:After decorating the binder and adding the pages and social stories (which I’ll type and print out then put on paper and laminate) and finish up the days w/ the label sheets. This is what he’ll have:

He’ll have a Day 1(2-8) tab in the binder and coordinating label sheets. Which we take with us wherever we are. After we do something he can peel the sticker off and place it on the pages.

I hope 1) this will prep him for our plan each day and help him make decisions about things he may not want to do or ask questions about things he’s unsure of.

2) he’ll be able to keep track of what is going on each day and in the moment as we go, which will help pass the time, and the anticipation of when are we doing this…”ah look at my schedule” and give him some control in the trip, by being my co-navigator.

I’ve never done anything like this and I have to give props to the disABILITIES board and SueM for her insight and suggestion for making this guidebook and adding my own flare w/ my scrapbooking passion.

I’ll keep you posted on how this making process goes and of course post pictures of the final product and then let you know after the trip how it worked for Nathan.

Comments/Questions welcome of course.

Thanks for reading thru,

MouseScrapper

PS I posted this in my PTR as well and 1 of my readers suggested I make stickers for those unexpected moment like the rian or ride not working even potty breaks...that got me thinking I should make some for showers at the end of the day...he really dislikes taking them...maybe this could help!


*** 11-5-10 Please note orginally when I first was on the Dis I posted my children's names as their middle...so not all the names are the same I changed them in the opening post...and will now use the first names in new posts.

 

[debbi801]

What a great idea!

Last time we were in WDW, DS was only 4, still in a stroller in the parks, and we attributed his meltdowns to being a preschooler. Now, he's 6 and been officially diagnosed with Asperger's Syndrome. We're planning to go back to WDW in 2009. I could see your book being a huge help in preparing for each day.

 

[mamacate]

This is fabulous. Now, can you make up kits to sell to other moms who have kids with similar challenges?! I'm only half joking--you might want to talk to a publisher...

We're less than 3 weeks out from our trip and I'm not doing as much to prep the kids this time because they feel like they've BTDT because we went last year. While I do think that it will be easier for H because he can visualize it and knows what to expect, he's also less interested in looking at the Birnbaum book this year. I'm going to need to start talking about it with them ASAP...

Thanks for sharing your great work, from another mom of b/g twins with one typically-developing girl and one boy with NVLD/ADHD/SPD/GAD.

C

 

[SueM in MN]

All I can say is WOW!!!!!

That looks great. Thanks for the great pictures too.
I am going to put a link to this thread in the disABILITIES FAQs thread, post # 3 with all the links. That way people will be able to find it. I think I'll put the link under the heading of Communication Devices, PECs because that's where original thread this idea was from is.

 

[Timon-n-Pumbaa Fan]

Copyright and market this! Seriously awesome idea.

 

[mousescrapper]

Wow thanks everyone for such encouraging words...I truly feel humbled.

I just hope that I may be an encouragement or a start of idea for someone else who is facing similar challanges.

Hope you come back to see how this process continues.



MouseScrapper

 

[sneezy1956]

Excellent as a scrapbooker I would like to market something like this for parents with children that have disabilities! This is a beautiful gift of love!

 

[mousescrapper]

thanks to the many who have taken a peek and viewed this thread and to those who have said

It really is a gift of love to my DS and to have an oppotunity to maybe help someone else is very healing as I still go thru the process of accepting and learning about these disorders and how they effect DS and the rest of our family.

I know several of you have said I should "market" this thing....who knows. But for now I'm glad to share it with whoever may be inspired to create something for them or their child.

Yesterday I pulled out my stuff and am starting to get moving on it. Also as suggested I've added some emergency stickers for those unexpected moments.
Like:
Rain, Change of Plans, Closed attraction/ride, Too Long of a Wait, and general Waiting.

I'll try to post some more general and specific strategies and points in making/using this book.

Thanks for visiting and love any comments, thoughts or questions!

MouseScrapper

 

[5dwarves]

I loved your guide. What a wonderful idea for ASD kids...for any kid actually. You said your son is sensitive to loud noises. I stocked up on spongy ear plugs before we went. When we were in an attraction that I knew was going to be loud, I had the boys put them in. The muffled sound helped them tolerate it and still experience and enjoy it.

 

[MarieS]

I love your idea! My youngest is multiply disabled and has benefitted from social stories and a visual schedule. For our last trip I used postactds and photos from the internet to prepare him and help make choices. We are working on transitioning from photos to PECS pictures. I am looking forward to seeing more pictures as your book progresses and any tips and ideas.

I also scrapbook and I like the chipboard album. Can I ask where you found it? Also, what type of sticker are you using for waiting? I have not had good luck with the PECS picture and generally just sign "wait." For the sticker sheets, did you size your photos and texts to fit the labels on the sheet? It looks like there are 10 labels on a sheet. I am thinking of "scraplifting" your idea to make a simpler book for my son with the idea that this might help entertain him in lines too.

Thanks so much for sharing this!

 

[mousescrapper]

I loved your guide. What a wonderful idea for ASD kids...for any kid actually. You said your son is sensitive to loud noises. I stocked up on spongy ear plugs before we went. When we were in an attraction that I knew was going to be loud, I had the boys put them in. The muffled sound helped them tolerate it and still experience and enjoy it.

Thanks! and Yes, my DH uses them [earplugs]sometimes...but Michael has the sound reducing ear/headphones, we'll have those with us. He doesn't mind wearing them at all, which is good

I love your idea! My youngest is multiply disabled and has benefitted from social stories and a visual schedule. For our last trip I used postactds and photos from the internet to prepare him and help make choices. We are working on transitioning from photos to PECS pictures. I am looking forward to seeing more pictures as your book progresses and any tips and ideas.

I also scrapbook and I like the chipboard album. Can I ask where you found it? Also, what type of sticker are you using for waiting? I have not had good luck with the PECS picture and generally just sign "wait." For the sticker sheets, did you size your photos and texts to fit the labels on the sheet? It looks like there are 10 labels on a sheet. I am thinking of "scraplifting" your idea to make a simpler book for my son with the idea that this might help entertain him in lines too.

Thanks so much for sharing this!

Thanks for great comments and info about your DS too.

I bought the chipboard binder/album at Archivers a scrapbooking store.

I'm using Avery Mailing Labels (18163) My DH set it up on a Word doc for me to customize each label as I go. I basically google the image I'm looking for save it and then insert the picture into the label space. It fits right in, I can make it slightly smaller too. Then I go in and insert a text box next to the picture and add some info.

For example the Monorail picture: the text is "We may ride to resorts and look around for Hidden Mickey's"
or
the DTD Marketplace picture: the text is "try & go here for shopping & snacks can't go everywhere, just a few shops & we'll have a list" (meaning each of my kids has a souvineer "Wish List" to keep us on track w/ buying and not buying too much.

Basically a little story for each picture/step of our schedule. Some stickers for example are like the WTP ride & the Carrousel, we won't do both, but just 1 so I say We'll do ____ OR ____ by those.

Michael is a very capable reader and needs not only visual things to keep his interest but words, lists, check-lists, reminders to keep him on task. I figure there is just so much info, he won't be able to recall all of it as needed, this way he has a "cheat sheet" for the entire trip to refer to and give my DH and I leverage to keep things going smoothly if an outburst or hard moment occurs.

For the "waiting" sticker right now I just have the word "Wait", but may change it to, a picture of the kids from our last trip waiting. I tried googling "waiting WDW" but nothing seemed to make sense to use. Other thoughts would be a a hand: stop or a sand timer image to visulize waiting.
I wrote w/ it "Sometimes we have to WAIT!
In lines, in a crowd, it’s not fun…but we can rest, read, play I spy, word games, and trivia…plus you may find a Hidden Mickey or Treasure" (trying to put on spin on a situation he really dislikes)

I think the biggest key to this project is to know who you're doing it for, what tools work for your child, what will help, and to make it as simple or complex as you need it to be. Personalize it to cater to their interests and needs.

Also in the picture schedule I'm including just about "everything" including a few pictures or notes that he's not doing such as Mission Space (just DH) but he needs to know this coming and he'll be waiting till Dad is done...

I will post more pictures soon, I promise! This past week was SB for my kids and I didn't have as much time as I was hoping to work on it and then the weather was finally nice, so we were outside...rain in the forecast which means I can work downstairs....

Glad this is helping those who are coming by to look! Please don't hesitate to ask, or leave any comments...maybe you'll think of something I haven't yet!

MouseScrapper

 

[BeckyScott]

Wow, that is really impressive!

I'm thinking Disney needs to get ahold of this idea (yeah, after they write you a big check), I could see them marketing those babies for about $75 apiece.

One random thought I had- and may not be applicable to your child- was that I know my DS is quite obsessed with maps. If there was a way to shrink a park map, or use the freebie one from the Disney website, or even for the future, having one from the parks cut apart and put in the book.

DS will sit in His Rolling Throne and inform us of where we are and what direction we're going. And if he gets confused, one of us has to lean over and point out where we were. He does that anywhere he can get a map. We always have to get him one of his own because he won't share it, either.

 

[mousescrapper]

Wow, that is really impressive!

I'm thinking Disney needs to get ahold of this idea (yeah, after they write you a big check), I could see them marketing those babies for about $75 apiece. teehee Thanks!

One random thought I had- and may not be applicable to your child- was that I know my DS is quite obsessed with maps. If there was a way to shrink a park map, or use the freebie one from the Disney website, or even for the future, having one from the parks cut apart and put in the book.


I'm actually thinking of that...not sure how I'm going too do it, but I'll let you know and post pic when I do!

DS will sit in His Rolling Throne and inform us of where we are and what direction we're going. And if he gets confused, one of us has to lean over and point out where we were. He does that anywhere he can get a map. We always have to get him one of his own because he won't share it, either.

MouseScrapper

 

[scottsod]

try this for waitnig pics

http://www.fotosearch.com/photos-images/waiting-line.html

 

[MarieS]

Mousescrapper,

Thanks for sharing your tips! I'm looking forward to seeing pictures as your book comes together.

 

[mousescrapper]

try this for waitnig pics

http://www.fotosearch.com/photos-images/waiting-line.html

Thanks for the link and tip. I thought of the people waiting in line picture too...as that's really all I saw too. But thought Michael would be confused seeing a picture of people he didn't know and throw him off for what I was trying to convey. I may look in our pic from our 05 trip and see if I have good one in there, that he's in...

Mousescrapper,

Thanks for sharing your tips! I'm looking forward to seeing pictures as your book comes together.

Your welcome and thanks for stopping by!

MouseScrapper

 

[mousescrapper]

Hi all,

I was able to devote most of last week to work on things for Michael’s special guidebook. It was great that the weather was actually stinky because I didn’t mind being holed up in my basement scrapbook room and work…it really was fun!

So what’s NEW?

I covered all the binder chipboard pages with fancy Disney scrapbook pages, stickers and titles.

I originally had thought when I bought the binder I’d have a section for each park, special things, the Poly resort, and the social stories. But after I started on the stickers I decided it would be better to have it done by days instead. Luckily the binder had 8 sections. 1 for each day.

So it took a little trial and error to figure out the best way to do it, as the original front cover has become the back cover…

I covered each side and added a little flair to each section’s page. I’ve included pictures below. Now please note on the front cover the little piece of paper on top is covering Michael’s real name. Michael is actually his middle name, and are any other names I use for my kids. (DH’s request)

After I finished the pages I showed it to Michael. At first he was confused , but then after explaining it to him and showing him the stickers it started to make sense. He ‘s very excited to have this book, he asked if he get’s to keep it after the trip?

At first he was disappointed we’re only visiting AK once, but then after viewing the sticker schedule…he’s like “Mom I’m over that now….” When I asked if he wanted me to talk to DH and see if might adjust things for a 2nd visit. Good for him to go with the flow….I see the book working already

Now to the daily checklists….

As any parent or caretaker of children with Aspergers or Autism know keeping things to a schedule and regular routines are a MUST! But not an easy task when it comes to vacation. Trying to utilize Michael’s strengths and weaknesses from his ADHD & ASD I decided adding daily checklists to the binder would be very helpful. He likes having checklists at home for his morning routine before school and afterschool. He doesn’t check things off each day, but can refer to it as needed. So that’s what I’m hoping for here.

What is the difference between the daily checklists and the sticker schedule?

Well the sticker schedule is pictures and notes of the parks and at the resorts, the order of attractions, rides, eating that we hope/plan to do each day.

The Daily checklist is more of his routine for the trip. Meaning his wake time, getting reading to go, being in the resort room, transportation, and any other info he may need on a day to day basis. I typed out and then printed and pasted a checklist for each day of our trip. Day 1) and Day 8) are slightly different than 2-7 as they are our traveling days.

Here is a sample of Day 1) our arrival day:

Day 1) PLAN Thursday, June 5th

 Wake up early (5:30 am) it will be dark out still
 Leave for airport around 6:00 am
 Get to airport, go through security NOTE we’ll give him more info on this later
 Walk to our Gate, meet Grandma
 Wait till boarding, watch a DVD or read, eat
 Board plane, leave around 8:30 am
 Flying
 Arrive in Orlando around 12:00 pm
 Get off plane, walk to buses
 Take special Disney Bus to the Polynesian
 Get to Polynesian, Mom & Grandma check in, you wait in special kid area (little tv) (s.s.) NOTE this means there is a picture too in his sticker schedule
 If room ready go there, unpack, rest
 If room not ready, find a spot to sit and rest for awhile
 Now time for FUN!
 See your sticker schedule: different activities, eat a snack, etc
 (if room wasn’t ready should be soon) go there freshen up, change if needed
 Dinner at Grand Floridian (4:50 pm)
 Nighttime activities, see your sticker schedule
 Back to room, shower and pj time
 ?? Watch water parade & fireworks (s.s.)
 Read
 Bedtime (you sleep in Grandma’s room in own bed)



Here is a sample from Day 2) in the parks:

Day 2) PLAN Friday, June 6th

 Take Medicine
 Wake up, (around 7 am) can read till breakfast
 Breakfast in room
 Wash up, brush teeth, change into clothes
 Play quietly, read, or maybe tv till time to leave
 Walk over to bus stop and catch bus to Animal Kingdom about 8-8:15 am
 Get to Animal Kingdom (s.s.)
 Walk to front gates, go through turnstiles
 Go to Guest Services and get your Guest Assistance Card
 Now to the FUN!
 Check your sticker schedule for order of attractions
 When done, take bus back to Polynesian
 Quick stop in the room (s.s.)
 Take you, Bekah & Rachel to Neverland Club (around 5:30 pm) You stay for about 3 hours (s.s.)
 Pick you up and go back to room (s.s.)
 Shower and pj’s
 Read
 Bedtime



Now I don’t expect him to check off each item as he/we do it each day, but use this more as a helpful tool. We can go over this plan of routine and the sticker schedule each day the night before and then he can refer to as needed. It’s really like a security item for him to know what to expect and what is going on. He has trouble with the concept of time, knowing how long things take…so I hope this will give him a helpful tool when he become frustrated or agitated with “waiting”

As always please feel free to comment, ask questions, etc.

Up next, adding actual pages into each section for the stickers to be attached during the trip and writing and adding the social stories.

Thanks,
MouseScrapper

 

[MarieS]

Your book looks wonderful! Thanks for sharing pictures. What are you planning to make social stories about? I have made stories for things like going to the dentist, playing baseball, etc. On our last trip to WDW I had a key ring of pictures/photos that we used. I can't believe I never thought of making a book to take to disney! LOL

 

[Taratink]

I love it! I bet it will really help him and it will be good for you too. When we feel more confident as parents it really shines through to our kids. Great idea and great job! I hope that you have a magical trip.

My kids really liked going through the different countries at Epcot and getting their passport (can be purchased at Epcot giftshops) and having them signed and putting the stickers in for the right countries. My son likes lists and putting everthing in order. He is 8 and this was exciting for him.

 

[SueM in MN]

the new pictures you posted while I was on vacation are great.
I'll be anxious to hear how it works out. It sounds like he is excited to use it!