Tips for Families with Special Needs on Enjoying Disney World

Disney World is a place of magic and wonder. Sure, it’s also incredibly expensive and crowded and hot… but those things just don’t seem to matter when you are standing in front of the castle at Magic Kingdom!

There is something so incredible about being at Disney World and the feeling of expectation and fun and hope. I don’t know if everyone feels it, but as a family that has lived in the world of doctor visits, special diets and treatments, diagnostic tests and rare diseases for the last 18 years, Disney World gives us a chance to live and love and laugh “just like everyone else.”

No, the problems that we face everyday don’t vanish on Disney time. But the problems just don’t seem so big or so hard. Instead of researching unknowns and sitting for hours in doctor’s offices, we research which restaurant to eat at and how to get the most out of “magic hours.”

So here are a few tips for families with special challenges from a seasoned Disney family! Truly… we just returned from Disney for the 5th time in 6 years.

  1. Plan early!

    We typically use a travel agent (Cowboy Way Travel) because they know us and know our needs. But Disney online and over the phone work great as well. I’ve just found that for our needs (two connecting rooms with ground floor access and a scooter), the travel agent can take care of everything and it works. And since we use a travel agent, we also purchase trip insurance. EVERY. TIME. It’s worth the cost.

    Also, by planning early you can make the best use of the early reservations for meals and fast passes. We are talking making plans 180 days out for dining and 60 for rides/attractions!! I know the needs of my family and waiting till the last minute to plan a trip means that you miss out on the best times for rides and meals.

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  2. It’s not an adjoining room.. it’s a CONNECTING room!

    Even as seasoned veterans, when we got to our rooms we found that we had rooms next door to each other, but not connecting! Uh Oh. This doesn’t work with an 8 year old! Disney defines adjoining as touching and adjacent as near by.. if you need the rooms to be able to open inside to each other, you need a CONNECTING room. Our rooms situation was easily remedied, but it’s an important distinction to keep in mind as at peak times you might not get a connecting room if you asked for an adjoining room!

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    Rooms at Riverside
  3. Speak up!!

    When you run into an issue, SPEAK UP! Give Disney a chance to fix the problem.
    One night when we ended up in a monsoon and the bus driver was horrible, we spoke up. Why? Because Disney cares and they work too hard for a bad experience to color the rest of the trip. Taking the time to talk calmly with the concierge allowed us to express our frustration and gave Disney the chance to make it a positive.

  4. If you need the disability access, USE IT!

    But, remember to take ALL of your family’s magic bands with you when you set up access at guest services. You only have to do this once each trip as the disability information is in the magic band. Also, once it is set up, any member of the party can “badge in” and request disability access to a ride/attraction. The key here is to manage your disability access as you can only have one outstanding at a time! The gift of disability access is that you don’t stand in line. It doesn’t make the wait go away, so plan accordingly! We know that we can’t wait in the heat/sun, so we go to shows while we wait for the next attraction.

    And if you haven’t seen Festival of the Lion King, it is WORTH IT!

  5. Plan down time.

    One of the hardest things for me to do is “waste” daylight at Disney, but I’ve learned that in order for Maddie to function for the duration of a trip, she has to have down time. So while the big girls napped, Kylie lived it up at the pool and the playground. Port Orleans Resort has great pools and a fantastic playground. Side note: besides being more spread out, Port Orleans is great for families as the rooms are larger, the place quieter and the amenities spot on.
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  6. Expect to wait for a bus.

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    Hands down, the most UNmagical thing about Disney is waiting for the bus to transport you from park to park or park to resort. If you are in a wheelchair or scooter, the wait can be a while as they only take one or two chairs on each bus. Sometimes these waits are in the rain and sometimes these waits can be an hour (or longer!). Plan for at least a 40 minute wait and then be pleasantly surprised every time you arrive at your hub and find a bus on its way in!

  7. Take your own ponchos and an extra pair of shoes!

    In case you didn’t know.. it rains in Florida. Plan on getting rained on.

    The ponchos at Disney are expensive and tear super easily. We purchase our own ponchos that are heavier plastic and bring them with us! Also, since Maddie uses a scooter, she gets a larger poncho that will fit over the scooter so that she can drive it and stay dryish.
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    Bring an extra pair of shoes.. or be like me and spend an hour sitting in the laundry room holding the door to the dryer closed with your back!
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  8. Find the accessible areas for watching the parades.

    Parades are really cool to watch. Unless you are in a scooter/wheelchair.  Find the accessible areas for watching the parades and take a seat on the curb. It was so fun to watch the girls watch the parade. We are big fans of the Fantasy Parade as it is at 3pm in the afternoon at Magic Kingdom and we can see that one. It just doesn’t matter how late of a start we get, we can’t make it to a firework or evening show as a family. When the sun goes down, my family fades fast.

  9. Ask to speak to the chef.

    IMG_2333If you have special dietary needs, Disney can’t be beat!

    We really wanted to eat at Be Our Guest.. I mean really, who doesn’t want to eat at Belle’s Castle?! But the menu options were not great for Lexi and Maddie who can’t have the normal breakfast items!  So we special ordered off the quick service menu and the chef came out and asked us a few questions and then like magic breakfasts for both girls appeared that were egg and milk free!  And it’s not just this one restaurant, it’s all of the Disney restaurants!!

  10. Make sure the other kids don’t get left out in the process.

With so much of what we do and who we are as a family focused on keeping Maddie well, our other girls get lost in the shuffle. Disney is a place for magic for them as we are able to devote special moments and memories for the girls by themselves.

Magic hours have become our special one-on-one times and are truly those magical memories that get us through some of the hard spots throughout the year.

Lexi and I stayed at Magic Kingdom until almost 2am one night!

And Kylie and I snuck away in the afternoon to Epcot one day and then Hollywood Studios one morning. Spending time with one child is so different than with the group!

I truly have so much more to say, but I’m thinking just this is overwhelming. So I’ll leave you with GO! Just Go for it. I know it’s expensive. But we spend SO MUCH MONEY on healthcare that we have to spend some on our emotional health and our family too.

I commented the other day to the girls and Doug that as we move into the next phase of our lives I don’t know that we will go to Disney as often. Lexi and Kylie were very quick to speak up and say that Yes, we will be back soon!

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My Imperfect Masterpiece

I FINALLY FINISHED the quilt that I started working on back in March.

I wanted to give up so many times. I even blogged about two months ago…  Remember these pictures?

But I didn’t.

And I am so proud of myself!!

Through this process I was reminded that often in life we don’t have good instructions, we don’t have a real method and we don’t even know how things will end, but we have to just keep on moving forward.

And here is the finished quilt. It’s a good thing that I don’t have a son or a child with the initials JTC, or I’d be tempted to keep this masterpiece.

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The backing fabric that we wanted to use initially was to stretchy and the front was so heavy due to the appliqués that I ended up using a set of microfiber sheets as the backing. The sheets are perfect…. super soft and cozy, but lightweight. The sheet material is the binding edge as well.

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The entire project was so much harder and so much more work than I realized when I said I would do the project.. and I won’t ever do anything like this again.

But I’m incredibly proud of the work, imperfect as it is, and am thrilled to be able to ship this keepsake off.

14th Annual Family Lakehouse Adventure

The 2018 Maxwell Lakehouse Adventure was in my opinion the best of the 14 we have had so far! I think a lot of it has to do with the fact that my children are old enough to just play and enjoy their cousins and I can sit and observe them and am not constantly doing the mom thing. With all of my free time, I took 413 pictures from 4pm Friday to 4pm Sunday…. that’s a lot of pictures! I can’t help it, my family is rather engaging.

Here is a glimpse of our weekend at Cedar Creek Lake.

The overview

  • 23 people
  • 3 generations
  • Youngest child.. Jake at almost 5 months
  • One 4 bedroom, 2 bath house with a perfect backyard, fantastic lake access and deep water.

 

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Our group picture is one of the highlights each year and this year with everyone wearing the shirts that Dad and I screenprinted made it even better!

The fishing was pretty bad. In fact, Kylie was the only one that caught a fish. But these “little middle” cousins are adorable!

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Jumping off the dock was an absolute highlight. With really deep water at the end of the dock, everyone could run and jump, twist, flop and cannonball to exhaustion.

Kylie and Nora both love tattoos. Uncle Mike allowed them to put as many tattoos on his back as they wanted. I don’t think he planned on them using entire sheets all at once… including the trademark information!! They had a ball. I love to hear their sweet giggles.

Lexi and Dillon, our “middles” bought fireworks with their own money and gave us a great firework show! We didn’t grow up around fireworks so I was leery, but they were great and with uncles and adult cousins around to supervise it, I was thrilled for Lexi to share in this new experience.

Lots of corn hole was played along with some badminton and other games.

The house came with three kayaks. This was PERFECT!!

And then there was baby Jake. Oh my. That boy is the sweetest and happiest baby ever.

There was so much more, but I’ve already made this a very slow loading post I’m sure! But I’ll end with a few pictures from my favorite spot… the chairs in the yard. The breeze, the family, the view of the lake and my family. It was great. My dad and I very much enjoyed our time in these chairs just watching those we love play and laugh together.

So until next year, I’ll leave you with one more picture of lakehouse #14.. cause #15 is going to be EPIC. 🙂

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Rebuking the Lie

I am 44 years old and I have lived most of my life thinking that I am fat. The reality is that I’m not. Yes, I need to lose 15 pounds. But I’m fit. I’m healthy. I’m strong. I’ve been these things most of my life.

But the reality and the mind are not necessarily friends.

This weekend while sitting and talking with one of my sisters, she told us the story of rebuking a lie about herself and her parenting that had taken hold in her head. Last fall an incredibly mean-spirited person called her some ugly names and said she was a bad mom. She is NOT a bad mom. She is an INCREDIBLE mom. She is so thoughtful and consistent in her parenting. Even though she is still early in the parenting journey, I listen and learn from her all the time. The reality is that the person who said ugly things about her, didn’t know her and knew nothing about her parenting.. but the seed was planted and she realized that she had to rebuke the lie and claim freedom and grace and strength in the fact that she is a GOOD mom.

I listened to the story and was outraged and ready to go fight this nameless person. I was so mad on my sister’s behalf.

Last night after we got home and I was getting ready for bed, I realized that I have been struggling for YEARS with a lie that took hold in my head and has paralyzed me. Everyday when I look in the mirror and consider my food choices, in the back of my mind a little voice has said, “what does it matter, you are just a fat a** anyway..”  I was shocked. I realized for the first time in probably 30 years what was happening to me.

So this morning, I decided to do some research and look for physical proof that I have been a fat a** all of my life.

Here is what I found. I was not fat.

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Out of 44 years, I have three years where I was overweight and one year where I was very heavy. During the 2010-2012 years I had a very sick child where I took her to the doctor over fifty times each of those years… and I had a baby in 2009.  In June 2012 I realized what was happening and took control of my health.

To anyone else, I would have called out that lie that they were saying about themselves. I would have preached grace.

But for myself, I believed the lie.

So today, I am rebuking the lie that I was told so many years ago. Oh the power I gave someone else’s words. The careless words of others have wounded me daily for years.

And no more.

I am not fat.

Today I am embracing freedom and grace.

Today I am claiming my mental and emotional health back.

Today I am standing on the promise that I am created in God’s perfect image and that I am STRONG. I am HEALTHY. I am FIT!

Today, I rebuke the lie that I have allowed define me for all of these years.

No more.

It’s not ScreenPrinting, It’s SCREAMPrinting

My dad is a master screen printer. He has screened thousands upon thousands of paper/plastic/metal items over the years. We have screen printed flags and even blankets together. But he doesn’t screen print clothing items.

But we did this week. Last spring I was able to purchase a four color screen printing system for my classroom with an education grant. It is really cool and we used it with my students for one color jobs and have had great success.  We are working our way up to the more advanced projects!

So for our 14th annual Maxwell Lakehouse trip, I asked Dad if he wanted to screenprint shirts for all 22 of us. Kylie and Dad came up with the design, I fine-tuned it and printed it, and we ordered tshirts. We made the screens and are increasing our skills with the  emulsion process.

Finally we were ready to print. Kylie and Lexi had to come help. Given that I grew up screenprinting with Dad, no way were they not going to help us! Just getting the shirts ready to print was an undertaking given that our sizes start with a 6 month old and go up to an adult xl.

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I took a time lapse video of our work. If you watch carefully you can see Kylie and Lexi screenprint a little themselves at the end! Lexi was the master at loading the shirts exactly right and Kylie pulled the shirts and set them on the drying rack.

We were doing fine.. actually we did great until about shirt number 17. At that point the fact that we were not putting the shirts under the flash dryer between colors became an issue. I knew it would be.. but I had hoped that we would make it to the end first. But no. Dad was so disappointed. I wasn’t. I guess twenty years of teaching public school has me thinking that getting 16 of the 22 done without too much of a mess is a win. Dad said we weren’t screenprinting, we were SCREAMPRINTING!

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After we took stock of the shirts, we decided to run white on top of the blue. I LOVE the way it turned out! There are a couple of shirts that are not great, but overall, I consider this a successful project.

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And next time, we will stop and figure out that blasted flash dryer so that we can print all the colors without ending up with “psychedelic” shirts!

I can’t wait to get our Maxwell Lakehouse family picture taken in a week or so.

Yearning

I have so many thoughts swirling in my head.
So many things I want to say.IMG_2104

 

But I can’t… cause I’m struggling to process it really myself.

I’m really not trying to be one of those vague woe is me social media posts people.. You know.. post

But guys, let me just say…

Specialist #25 had no answers for Maddie’s bilateral foot drop. We stumped him. And he was supposed to BE THE ONE. She has no nerve damage and no neurological reason for her feet to have just stopped working. The doctor was nice and concerned, but he had no answers.

Guys, I was scared to death over this appointment. We were assured that we would get some answers today. But Maddie knew. She didn’t have her hopes up.
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And why should she?

Her entire life has been No Answer. No Reason. No Explanation.

So we have been referred to Specialist #26 and hospital #7.

And yes, of course we are thankful that more of the incredibly scary diagnoses have been ruled out. But could we, maybe, someday get an answer?

The yearning doesn’t go away.

The ache is ever present.

The hurt tangible.

Graduation

Graduation has come and gone and with it, Maddie completed her high school journey. There were many times over the last twelve years that I wondered if we would make it to this point.. but we did.

Watching Maddie graduate was wonderful, yet like every other accomplishment in her life, it was not without a struggle. Maddie has been wearing two walking boots for about a month now and these boots, while worn for protection and the ability to walk “normally,” are not easy to navigate ramps and uneven ground in.

But Maddie does just that.

I am so proud of her. It’s hard to not get weepy when I consider her struggles and her accomplishments. Many would use the daily pains and hurts as excuses to not leave the house, but Maddie perseveres and refuses to give up.

Maddie’s educational journey is really just beginning. She wants to be a music therapist, so that means two degrees, an internship, and a board certification. I know that she is going to do incredible things and be a difference maker for children who face physical and/or cognitive struggles.

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So for those of us out there who get frustrated when life doesn’t meet our expectations, I ask you to remember those like Maddie who face daily struggles of chronic pain, chronic illness, rare diseases and complex and often undiagnosed problems.

Since Maddie can get up each day with a smile, a song in her heart and the desire to reach her goals, surely we can join her in that journey!

Yesterday you were a child, Today an adult..

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Photo by Derek Dodson

Maddie turned 18 this week. Of course I knew this was coming.. but I still wasn’t ready. We have been working on college scholarships and planning graduation events, but somewhere along the way I forgot that with graduation and college, my “little” girl was going to become an adult.

Unlike many parents, I’m not worried about Maddie being a responsible adult. Maddie has been responsible pretty much her entire life. And it’s not that I can’t let go.. I will and am..

But here is the deal.

For 18 years I have spent pretty much every breath that I have in me protecting Maddie’s health. I have spent thousands of hours in doctor’s offices, in waiting rooms and researching diseases and cures when the specialists didn’t even know what to do or how to treat her.

And then, starting at 12:01am on Maddie’s birthday, I started getting the emails.

“You have been unlinked to Maddie’s account”

“This email has been removed from the account”

“You have been removed from this account”

over

and

over.

I have been removed and unlinked from Maddie’s life.

There aren’t even words to describe how that feels. Maddie didn’t choose to unlink or remove me. An automated system that just the day before wouldn’t allow Maddie to make a single decision for herself now requires her to make all of the decisions and excludes me from even seeing her account!

It hurt.

But more than that, it scared me.

I wasn’t ready and I hadn’t downloaded all of Maddie’s files. I realize now that I should have been more proactive, but dang.. just living in the trenches is hard enough. Someone should have warned me! That automated system should have sent me an email 30 days prior saying that unless Maddie authorized it, I would be removed from her accounts.

For those of you out there that have never had the struggles that come with having a child with 13 different diagnosis codes and almost a dozen different specialists, I’m sure you think I’m overreacting. Just hang with me a moment…

This week along with Maddie’s birthday, she has had some ongoing and new health issues. She saw her primary doctor who did blood work and is working to get in to see two of her specialists next week. Both specialists will need to see the results of the blood work. None of these three doctors work together or are part of the same network. My job for the last 18 years is to be the manager and provide all of the paperwork and logistics for each of the various doctors. Now it’s Maddie’s responsibility. A responsibility that Maddie will take the lead on, but truly wasn’t ready to take on. As she said, when the doctor’s office calls with results from the blood work, she isn’t even going to know what they are talking about! And Maddie is an educated patient!

I can’t help but be a little terrified.

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What I learned from watching my daughter in Colorguard

About five years ago if you asked me what colorguard was I would have asked if you meant the “flag girls” on the football field at half time with the marching band. I would have meant no disrespect, but I didn’t have a real frame of reference for colorguard beyond that they were the pretty part of the half time band performance.

Today however, if you ask me about Colorguard, I can talk about it for a looong time! Cause you see, I am a veteran “Guard Mom” whose daughter was Captain this year, is graduating from high school next month and last week performed her in final Winterguard competition. Oh.. you don’t know what Winterguard is? Well, Winterguard season is December through April and the guards perform a show entirely different from the fall and perform it inside a gym. It is quite a competition!

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So here are some of the things I learned over the last four years..

Colorguard is a SPORT.

Guard rehearsals are like practices for sports. Full sweat, smelly feet, sore muscles and long hours.IMG_2186 2

(Color/Winter) Guard is a synonym for FAMILY.

Over the last four years we have come to know the guard director, staff and students very well. These teenagers and their families have become our family.  The director has been a mentor and another mom for Maddie. Being part of the guard family is an honor.

Guard teaches the importance of the
individual WITHIN the team.

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One of the coolest parts of the color/winter guard team is that each individual and their work is incredibly important to the combined efforts of the team.  Hand positions, foot work, throwing (and catching) hard tosses, and the ability to keep up and on the beat are deal breakers for the overall look and ranking of the guard. Because of this, the team learns how to work together and use the unique skills and abilities of each member while working to get better and stronger each week.

 

Guard teaches young women that beauty and strength are two parts of the same whole!

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One of the greatest gifts that guard gives to teenage girls is the understanding that beauty and strength are two parts of the same whole. Being a member of the guard means that you have grace and dignity as well as strength and fire. These lessons learned during teen years are life changing and help girls mature and become strong and beautiful women.

I am so thankful that Maddie was a “guardie” and that I had the privilege of being a “Guard Mom!”

(Thanks to Amanda Akins and Derek Dodson for the incredible pictures!)

 

Fostering Creative Thinking

Children are innately creative. I know this. I see this everyday.  Yet I regularly hear adults say that their children aren’t creative. I try to be nice. I’ve learned to just keep my mouth shut and not call out these parents, but oh it is difficult! Children NEED to be creative. It is who they are! From invisible friends, bringing soldiers and dolls to life, and even simply playing house, being creative is a necessary part of a child’s growth and development.

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Why do parent’s say that their children aren’t creative? Well, over the years I’ve decided that it is a control issue. Creativity is often messy.  Creativity requires a suspension of disbelief. Creativity embraces differences and pushes boundaries. All of these are areas that make adults uncomfortable. Believe me. I know! Even in my world where creativity is a prized treasure, it is still messy and at times drives me crazy.

But it is worth it.

So what do you do if you can’t fathom the thought of glitter in your carpet, paint on the back porch,  a million legos underfoot or blanket forts in the living room?IMG_5539IMG_7590

 

 

 

 

 

 

 

 

 

Well, start simply.

There are some great games that you can play. While Kylie is the one pictured here, all of my girls are willing and happy to play the games in the pictures together! And that is a win in and of itself! Our family plays games. We play card games, board games and dominoes. We put puzzles together and build lego creations. If the idea of Playdoh crumbs smushed into the kitchen table and chairs gives you the willies.. start with games like Otrio, Trax or Mental Blox.

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(FYI.. this is NOT a paid advertisement.. these are my real life recommendations!)

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Fostering creative thinking is a soapbox issue for me. Why? Because I’m amazed at how many adults DON’T KNOW HOW TO PROBLEM SOLVE! And we as a society are not teaching nor are we modeling to our children how to problem solve, how to come up with new or different solutions to problems or even how to think for ourselves!

While I am a huge advocate for technology and I want equal access to information and all that technology brings, I am worried about the immediate reaction to just “google it” when something doesn’t work.

Resiliency is more than being able to survive when the internet is down!

We have to model and teach children that when there isn’t a clear answer, sometimes we have to simulate the what-ifs and work through options. We have to not only allow FAILURE, but embrace it and show our children how to move through failure to success!

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So there you have it. I challenge you to go be creative today. And no, you don’t have to go paint a picture or create a sculpture to be creative. Go play a game, create a fairy garden in the flower bed, build a treehouse.. do something that doesn’t already have a set finish point and that requires your brain and your body to work together in a new way!

And finally, enjoy the journey