Lilypie Fifth Birthday tickers

Keegan Joy

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Beach Days!

We spent two mornings at the beach on our vacation. Both on the way to Orlando and on the way back, we stopped in Destin overnight and for a couple hours playing in the sand and in the water. We like the convenience of our hotel, the same one we stayed at two years ago, because of it's close proximity to the water. We only have to walk 100 feet or so to get to the white powdery sand which is helpful for adults and kids!

The girls love the beach and would have gladly spent days running up and down the beach, in and out of the water, and rolling around in the dry sand and the wet sand along the surf. They loved chasing birds and looking for other animals and Mac really liked finding seashells to bring home. Some of them have even been colored!

Johnny loved the water and beach too, enough that he tried to consume it on several occasions. It was slightly disturbing to hear the crunch and crackle of sand between his teeth, knowing there was no way to get it all out until we went back up to our hotel room. He would have gladly scootched into the ocean, never to be seen again, much like Keegan was when she was little. He tried desperately to keep up with the girls, scootching, crawling, and even some standing along the beach to explore along with them. He loved the water and was hardly phased when a wave would knock him over.


The beach provided us with some great family time, but it also provided the opportunity for the kids to get out some energy in the middle of our long road trip. We are glad we took the time, instead of pushing straight through each leg of the trip. It also meant that we could stop at Shake's for frozen custard and we discovered a great, Freebird's or Chipotle style place outside of Destin, called Burritos del Sol. Their food was crazy good, really fresh with delicious sauces and toppings (I got a baja style shrimp quesadilla with pineapple salsa). We highly recommend both places for a great treat if you are in the area.

Special Needs at Disney

We did a little research about Disney's accommodations for kids with special needs to prepare for our trip. We are glad that are needs are limited with Johnny, but there were a few concessions we needed. These are what we were offered and what we used, other families may need more or less depending on their situation. 

First, we absolutely needed the ability to use his stroller as a wheelchair. We would not have been able to do Disney without it. Being able to take him into shows, through certain lines, and, in general, our comfort, depended on using the stroller as much as possible. We did not use it the entire time, we held him quite a bit, but as a 2.5 year old boy who is wiggly but cannot walk or even stand to provide us with some relief, we needed the assistance provided by our stroller. We were issued a red tag to use for the duration of our trip and did have to show it quite a bit as people ushered us to stroller parking instead of to the line or ramps we were searching for. Additionally, we did get some dirty looks and comments from people who didn't understand why we could use our stroller and they couldn't use theirs. This didn't faze us. They don't know our circumstances so I ignored them. 

Not only was the stroller useful for general ease of navigating the park and lines, it was imperative for Johnny to take a nap so we could spend all of our time at the parks. Our double stroller is amazing and is only slightly longer than a standard single stroller and not any wider. His seat easily reclined back and has a large shade so he could snooze for an hour or two all three days we were at the Disney parks. Even if we hadn't been allowed to use the stroller as a wheelchair, we still would have brought it for this reason alone. It was nice to have a space for the girls to climb in and out of too, with the additional seat, and Keegan slept at Magic Kingdom as well!

Having this wheelchair tag also provided an additional benefit we needed and that was aisle seats for shows in case Johnny was overstimulated or overwhelmed by anything we saw. He doesn't have huge issues with it, but we've noticed large crowds and loud noises set him off easily. Additionally, we learned on the trip that 3-d, even without the glasses, freaks him out. Each time we saw a 3-d show he clamored to be in my lap and buried his head into me to avoid seeing it. Sometimes that meant we sat in the back and sometimes that meant front row seats, neither mattered to us (although front row was great for The Lion King and the Frozen Sing along), but having the ability to easily grab him and leave if I needed to was important. We never had to, but we were close a few times. 

    (Back of the theater for Indiana Jones
      and Fantasmic)

     (Front for Frozen Sing Along)

We also had access to an old style fast pass. This option allowed us to check into any ride Johnny was able to come with us on, have a "wait" time written down for our family, and we could return to the faster line at that point. We could only have one ride waiting at a time. Mainly, this was so we could park the stroller outside the ride and quickly get on and off. Honestly, because of how young he is, we only used it three times. All the other kid rides were easy to wait in line for. I can see how this would be beneficial to have if we return when he is older. While we work hard to show all of our kids appropriate behavior and work on it with each of them, I can see where the chance to ride a ride with a space to wait outside could be beneficial for Johnny. 

Another accommodation we needed but is given to anyone was the chance to bring in outside food, a soft cooler, and an ice pack for Johnny's medicine. It's nice that this corporation still allows outside food, especially with Johnny being a somewhat selective eater. I was able to pack food that I knew he would eat and we obviously needed two doses of his medicine chilled for the entire day. It was also nice to have snacks and a small meal for all of us, so huge kudos to Disney for helping us stay in our budget!

Lastly, I cannot say enough for the general attitude and positivity I saw at Disney towards all people, but especially those with special needs. Time and time again, all three of my kids were given love and had kindness shown to them at the parks, but extra steps were taken for kids and adults with special needs. Each character spent more time with Johnny and others with obvious special needs. Several princesses were so gentle and warm towards our sweet boy. Both Cinderella and Merida took several extra minutes with him, even after several minutes with the girls, to love on him and talk to him. Cast members were patient and welcoming to people needing extra assistance. And the overall attitude of everyone was one of inclusion. At the Lion King show, there is a parade for kids selected from the audience and one cast member selected and pushed a child in a wheelchair through the parade, helping he sing and clap along to the music, all the while dancing and keeping up with everyone else. 

     (Kisses from Cinderella)

The best moment for us occured, not to our own family, but one directly in front of us. As we waited in line to see the talking Mickey, I noticed a family with an older (late teens) boy with special needs. While his diagnosis may not have been clear, his love for Disney was, evident in his bright Mickey hoodie, t-shirt, and Captain Jack Sparrow/Mickey ears. When it was his turn, the delight that came over him, was a wonderful thing to watch. But even more so, was the response and diligence that Mickey and his helpers took to make this boy's experience special. He asked the boy several questions and then noticed his pirate ears. They the took turns saying "argh" like pirates and posed for several pictures like that. The pleasure on the parents' faces and the happiness on the boy's face was an opportunity I felt blessed to observe. I think that is what makes Disney so special, not that it works to give everyone a perfect day, but that it trains each person that works there to take small moments and turns them into unique experiences. How many people can say they love Mickey and Captain Jack Sparrow so Mickey took the time to pose and talk like a pirate for them? The hug that boy shared with Mickey was almost better to watch than my own kids' hugs with him. It encompassed all the reasons I knew we would be fine to take Johnny along with us. It also made my appreciation for Disney grow because I know this wasn't an isolated incident or something contrived. It was genuine and something that they are diligent at doing, at making magic for everyone. 

Road Trip with Kids

We drove the 15+ hours to Orlando with our three kids last week. I, like in most things I do, researched ways to keep kids of all ages entertained and over prepared for most scenarios. I was glad to have way more than I needed than not having enough. I have a few tips here which worked for our family, ages 5,4, and 2.5. 

First- tons of snacks that are easy to clean. We had chewy bars, goldfish, veggie straws, baby carrots, raisins, trail mix, water bottles, and the occasional juice pouches for the kids. We also had some candy bracelets, gummy bears, and fruit snacks for the girls as little treats. We brought our own snacks to help stretch those miles near meal times and to help work more savings into our budget. Because we didn't have to buy a snack at every restroom stop, we were able to treat the girls to beneigts in New Orleans, frozen custard in Destin, and finally bought them a gas station treat on the last leg of our roadtrip back. Having these snacks on hand (with a bowl to put Johnny's in), really helped Johnny too as he would get restless when he needed to nap. Each day, if we have him his water and a little snack, he would munch on a few, then fall asleep, content that his needs were met. 

Bring lots of new activities that you don't care about making it through the trip. We bought new color books, foam stickers, pop beads, and other assorted activities from the dollar store and other dollar bins at stores. We bought various magnetic dolls for cheap and got a handful of new books from the library (my girls are very good with books so I wasn't worried about these being ruined). We also found two new seek and find books at Half Price Books, which the girls love. I also had a few Color Wonder packs stocked up from Easter and Christmas gifts that I loved, the girls could use markers and I didn't have to worry about the ink getting anywhere. Both girls used a clipboard for writing and coloring on. All of these things were in a large tote bag with a backup tote bag in the back of the car to trade out if they got bored. They didn't! They also were allowed to bring a small shoebox with a few figurines or small toys. Those, paired with two new My Little Ponies from one of their Happy Meals, made for some great interactive play between the two big girls. They played with their toys in the boxes and across the seats and used colors and stickers to decorate their boxes too. 

Johnny needed different entertainment. He had two Melissa and Doug interactive boards, one with latches and one with little doors for him to open. This was an activity approved by his OT as well, to keep his litte hands strengthening and moving as we drove. We also had a handful of musical toys for him to play with and several of his favorite books. We are fortunate that Johnny loves books and will flip through them for large spans of time. For the trip, we packed all board books and rotated through them. 

One thing that worked for us was to tidy every time we stopped. All toys and books went back in the tote bags, a quick collection of trash was gathered, and anything that needed to be wiped or emptied was done when we ran into the restroom. It didn't keep our car clean, but it did keep things from becoming overwhelming. Additionally, when we got to Orlando, where we stayed for a week, we removed almost everything from the car. Even though the kids didn't have any time to play with their things while we were in Orlando, it was nice to have the car feel clean and to not have to fight with the toys as we drove to all of our destinations. 

Because we would be driving late, we had the kids' Jammies ready to go in the car each of our driving days. Whenever we stopped for dinner, we would make the kids use the restroom, change Johnny's diaper, and switch all three kids over to night clothes. That way they could be more comfortable and the transition to bed was easier when we arrived at each destination. Further, because we stopped overnight in Destin on both legs of the trip, we had a small suitcase that had what each of us needed for just one night. It was much easier to bring one suitcase in instead of three. 

Lastly, yes, we used the DVD player in the car and the iPads for the kids, but not nearly as much as we thought. We made it all the way to New Orleans on the first day with zero technology. By that point we had dinner and didn't mind the kids watching a movie to wind down as they fell asleep. The only day they used technology heavily was the last day, driving back from Destin to Houston. Even then, we made them take breaks from it and they happily played with all of their other items. 

Lastly, if you have a child in diapers, especially one with explosive diaper episodes, be ready. We knew this was a potential problem and had plastic bags, extra clothes, baby wipes, and diapers, ready. What we were glad we also had by chance was Clorox wipes for the seat and buckles (it didn't fix the mess, but made it tolerable until we got to our hotel a couple hours later) and beach towels to lay said child down in the parking lot on. There was no other way we could have addressed all the mess. I wish we had a dry towel to put in the seat as well, but we adapted as best we could! He really needed hose since he had reached into it and spread it all over his body, but after we wipie-d him as best we could, took him into the restroom to wash his arms and face with soapy water as best we could. 

Any other tips? Any questions? Feel free to let me know!

My girls

Today the girls school hosted an early Mother's Day tea in their class. We were invited to the school for playtime, circle time, a cute song, a delightful craft, and a meal with our kids. Matt took the day off so he could take Johnny to therapy and I was happy to devote time to my sweet girls. They delighted in showing me their classroom and introducing their friends. Apparently Keegan has made a great friend with one of the older girls in the class and it was fun to watch them hug and play. At circle time they were tasked with introducing us and telling what their favorite thing to do with mommy was. Keegan shouted out "playing and snuggling" and Mac curled into a ball and refused to answer. I was able to get enthusiastic nods from her in response to "playing basketball and reading". The craft involved making a flower picture with all of our painted handprints and they both loved painting my hand and helping me press it on the paper. 

After, we walked over to the school's culinary class and had a meal served to us!!! It was special to have that time with my girls and they could have given me the same pb&j they gave the girls and I would have been excited to simply sit, have a meal brought to me, and not have to clean up anything! I loved talking with Mac and Keegan about different aspects of their class and spoke a bit with Mac's buddy teacher too. She has been working hard with Mac on reading and writing and I have seen improvement across the board!

These pictures were taken by each of the girls-

Once that was finished, I went over to the elementary school we are zoned to and registered Mac for school. It made me nervous and sentimental and a little sad, not at her going, but at how quickly the time is passing. Six years ago we were just telling people she was on her way to join our family, relishing in our secret through the first trimester, and now she is ready to go off on her own, car riding to school in the morning and bus riding in the afternoon. It's such an odd place to be, I am anticipating this new step and all of her education years ahead with gladness, she will learn and grow so much, but I cannot believe the last stage, the at home and preschool stage, is coming to an end. I so enjoy spending time with her, I am going to miss her, but she is amazingly well prepared and ready to be in a big girl class in a big girl school! 

It's such a great time to be their Mom. I am lucky to have them and to spend extra time with them or to hear all about their day when we reunite!


Today Johnny and I took a nice long walk around a "lake" at a local park, then met friends to play on the playground. There were several kids playing on the structure, running across the bridges, climbing up the stairs and ladders with ease, and going both down and up the numerous slides. Undaunted by the older kids running around, I plopped Johnny down in the mulch, stayed a few steps behind him, and let him explore. He quickly made his way over to the stairs, climbed them with ease, and scootched his way over to the tallest slide on the structure. At the top, I saw his happy grin and waited for him to decide if he wanted  to back down or be adventurous and take the slide. It wasn't a difficult decision for him, he wiggled his bum to the edge of the decline and waited for gravity to take over as he leaned his body forward, anticipation crossing his face with a gleeful smile. We did this, and other slides on the structure several times. All the while, big kids ran past him, over him, and a few times, nearly through him. 

I think it's important, for him to play just as he would if he was walking even if that developmental skill alludes us. It is important for him to get that exercise and to work climbing stairs and crawling over bridges. It is important for him to see that reward of hard work (climbing) being paired with fun (sliding). It is important for him to learn to move out of the way at the end of the slide. It is important for him to learn his limitations in the form of injuries, hopefully minor. It is important for him to get dirty as the sweat from sun and exertion meets dust from mulch and sand. It is important for him to have typical experiences within the realm of his physical limitations. 

I think it is important for others to see too. Any other two and a half year old would be out there playing and toddling around, so Johnny is too. Would we let him scootch across the grocery store floor to prove a point that he can still have typical experiences? No. Is it appropriate for him to play with older kids, under supervision, even if he isn't walking? Yes. I think it was also important for people to see that he can do the stairs or the slide, with just a few extra moments of patience. Nobody had to wait long for him to either go or to move to a different part of the playground and if they had, I would have encouraged Johnny to keep moving just as I would have the girls. It is important for others to see that he has fun and delights in the same activities as anyone else. 

I hope for continued growth and experiences with Johnny like this morning. I enjoy watching him grow and to make his own way in the world. We want to encourage that sameness when appropriate and to facilitate assistance when needed. We don't know when or how each experience will happen in his life, but we are thankful to be around for the journey. 

Rodeo 2015

I was hesitant about taking the kids to the livestock show this year. I skipped last year because the year before was so crowded that I was completely unable to enjoy it as I kept counting kids the whole time and I felt like the girls learned nothing because the mob was too large and loud. I wanted to give it another whirl and decided to run down there a few weeks ago on a slightly dreary day. I was hoping the mist and prospect of rain would keep crowds away and was met with a fairly enjoyable experience. 

We met up with friends for a bit and watched the kids run around the farm they have set up. It's the girls' favorite part and even Johnny got to participate from his stroller, holding out a basket and taking items as directed. Of course, the girls were most excited about the treat the earned at the end and both opted for a fruit roll up. 

After, we visited the petting zoo and I think the girls and Johnny could have spent the entire day there. Johnny loved reaching out for the animals, especially the alpaca. The girls quickly found the brushes and chased all the animals around, squealing in delight at each new and smaller animal. I am always surprised at how instinctually they care for animals. They know how to be patient and kind and to wait for the animals to approach them. Keegan did have a little issue with a very hungry deer trying to eat her dress. When I say, eat, I mean had at least a foot of fabric down its throat. I'm glad she wasn't able to see it!

We walked around numerous displays and learned about several different animals. Over and over again the girls exclaimed how excited they were to be there and how it was the best day ever. I'm so glad we enjoyed our time and braving the hassle was definitely worth it. Those three kids make it worth it all the time!

Reset Rant

Totally broke my New Year's Resolution. In a big way. And it avalanched and flooded and had a hurricane hit it with procrastination, guilt, and general life busy-ness. And I am not saying that we are more busy than others (although we keep ourselves VERY occupied). And I am not saying that I haven't had time here and there to keep up with writing. In fact, I am excited about a lot of things going on and want to record it all. So I am hitting the reset button. I am not sure what that means with regularly keeping up here. Sometimes I may write several times a day, other times, I may need a little break or extra day, or two, or three, to mull over or research topics that are important for me. But I am giving myself a break and getting back into it here. And while I am at it, I am re-committing to this being a record for myself and my family. What we do, what we think, what we want to remember is the purpose of this blog. We make it public to provide connections and possible communication with others, but "this space" is for us. It's important to me to have some record of what we are doing and it is a benefit that other's may get a glimpse into our lives too. So... Resetting... Now.