I was super set on my next blog being about our Disney trip. While writing it up, I started to spiral and get super far off topic with how I planned and packed and such. So I decided that will be for next week. Sorry guys! This blog is going to be about traveling with a special needs kiddo and typical kiddos. How we do life as a family of 5. And not just traveling. Just leaving the house, doing small trips to friend’s houses and dining out in general. How it has changed what our lives look like dramatically. And trust me- not in a bad way- just a different way. Life just looks different. And just to be very clear, different is fucking beautiful.

I don’t even know where to start. Life’s been super weird the past several years for us, in the aspect of socialness… I don’t know if that’s a word but you know, it fits. We are a family who loves to travel- not worldly travelers AT all. But a trip to Disney, a weekend in San Francisco to a basketball or baseball game and museums, a plane ride to Boston, weren’t insane to us. We were so blessed and lucky in that aspect. It was super exciting that we were able to do these things with our kids. We loved to camp. Spend an entire day at the beach or river. We loveddddd to eat out. We loved Sunday breakfasts and Costco shopping trips. It’s easy to love to do all of these things when you don’t need to really plan or even think. You just grab a purse and shoes, and ride. I realize now how much I took that shit for granted once our baby was born with all of her awesome specialness 🩷

Let’s talk about over night trips first. Elle used to get super confused. She’d take a day or more just to regulate and adjust when she was younger. I remember driving 14 hours to Las Vegas to visit my parents, and she cried and shook so bad and screamed for an entire day or two that I thought we’d have to turn around and drive back home. My mom found her some all white bedding (all she’d use at the time), we went to target and bought child locks and a baby camera, and she adjusted and we had a really nice time. We door dashed and cooked at home. We didn’t leave the house. It wasn’t what we had planned or had in mind. It wasn’t like the trips we’ve always done. But we swam and played at the park and it ended up being so nice and relaxing. At that moment I realized, oh, life is for sure going to look different and I need to learn how to prep her and our surroundings. I was a rookie and totally failed man. I’ll never forget it. Well, you learn realllllyyyyyy quickly after a disaster like that. Or at least you hope to learn from crap experiences like that one.

You learn to pack everything- I used to pack her bedding and pillows. 900 outfits- if she got a drop of water on her, her entire day was ruined and she’d immediately strip down. She still does that, but she handles it a tad better now (scratch that- she just did this at Disneyland in a packed area😭) I’d pack all of her foods- would door dash groceries to be waiting for us. I learned to travel with our soft Yeti cooler bag. I still travel with her mini pink plastic potty, therefore needing to pack water and bags to clean that up. She had a horrible time keeping swim suits on and would scream to be naked. People really were hard for her to be around. She’d give herself stress seizures…yup, you read correctly, fing stress seizures…… the first time that happened, we planned a beautiful family trip to Santa Cruz and drove to the Monterey Bay aquarium. Her and I had to leave within 15 minutes of being inside. It was scary and crazy to me. I was so frustrated and upset that we’d paid and planned this beautiful day and we couldn’t enjoy it. My family did. But Elle and I did not. I wanted her to experience these amazing things… and it just couldn’t happen. We tried to spend a day at the beach and she lost her shit so badly from not being able to swim in the ocean that we had to leave early. I couldn’t keep her locked in her room at night, I had to drag a dresser in front of her door and tie a rope from the door handle to our door handle to make sure she was safe. I have to say- everyone who knows me knows what a lunatic of a planner and scheduler I am… it’s been a really hard thing for me to adjust too, this whole changing plans allll of the time situation. My anxiety is always sooo high. It was a trip where I realized, oh F$@k, I need a new mindset and plan for life in general.

I’ll tell you what. It’s really really reallllly hard to not get upset over this stuff. Anytime we have to leave a place early or plans change, I can’t help but STILL get upset by it. Every damn time I have to turn down an invite, it still hurts…. I hope one day that will soften a bit. But here I am all of these years later and nope- still feels sad af every single time.

Our next big trip was the following summer, we rented a house with a pool for a week, only a few hours from home, with zero things planned. It had a giant master closet in our bedroom. I ended up dragging a mattress in there and setting it up as a room for her. Elle needs her own room and space to hide from everyone. She didn’t like to snuggle or be touched or sleep with anyone. What a game changer man. We slept! After 3 days, she was ready to go home and was confused as to why we were still there I think. But she survived much better this trip. I basically packed her bedroom and brought it with us- we drove two cars on this trip. It went super smooth and was so enjoyable for our family.

Elle and I travel to UCSF fairly often- not near as often as we used to nowadays which is amazing. My husband stays behind with our other two kiddos. My first trip was so hard and disastrous. It’s hard to push a stroller and pack your bags and such with a highly disregulated kiddo. Hell, I get disregulated too, all sweaty and stressed, it’s not a good look on me. After one failure of a trip, I found a perfect hotel. It was small and easy to navigate on my own with her. One trip there, we had a view of the pool in the apartment complex next door, the hotel didn’t have a pool, she screamed so badly for the pool that I had to switch rooms where it wasn’t visible. The hotel was sooo amazing. It’s my fave hotel. If you ever go to Frisco, I can’t recommend Hotel Luma enough. I found a Mexican food place with the best ever coconut margaritas within walking distance that she came to love and be comfortable at. I learned to make the same stops for gas and for coffee and food. Our trips now are well oiled machines and enjoyable. Our one on one time is pretty special. I’m her safe space. It’s a beautiful blessing and a curse all rolled into one.

We’ve learned to rent air b and bs whenever possible. It’s super helpful to have our own space. And her to have her own space to retreat to. I can research the door knobs to be prepared for ways to keep her safe. I can make sure it’s a space that we can kind of relax. We can cook meals for her. Eating out is hard. She has certain foods she will eat. It’s hard to be gone for multiple days, the girl should only eat French fries some many days in a row….. we have to carefully research menus and read reviews of how loud a place will be and such. I’ve learned to not overload our schedules. We’ve learned to do things together but separate. That’s my motto. We will all go on the trip, but Dad and the big kids will go adventure one day and I’ll stay back with Elle, and then my husband and I will swap spots. It was a super hard adjustment at first. It still is hard even though it’s our normal.

Doing things separately has been how we’ve been living life. When Miles or Amaya have sports, we take turns going to games so someone can be with Elle. My Mom steps in when she can to help us in a pinch when my husband is out of town for work. We take turns taking the big kids out to eat and to the movies. Elle has one breakfast spot and one dinner place she’s super amazing at. So we now go there when we want to eat out as a family. I still carry a diaper bag- a cute mini backpack now (there’s a link for it on my shopping page). I just make sure it’s loaded with spare clothing in case water gets on her shirt or something, and extra chewy necklaces. She’s six, I’m tired of loading a diaper bag and packing her meals and meds whenever we leave the house man. And her 80 toys she MUST bring along. Things take more time to get us out of the house all together. We’ve learned a lot- and there’s a lot she can do if she’s in a stroller, and is equipped with her IPad, headphones, and chewy necklace. We’ve learned to really vet our destination. Do they have dogs? How many people will be there? Indoor or outdoors? Do she know these humans? We have to drive two cars everywhere. So if she needs to leave immediately , or at any point, we respect her needs and one of us takes her home. We always have a plan in place about who will take her home. It works for us. It’s sad and hard at times. But it works for US.

We try to prep her with social stories as much as we can. I tell her several days in advance that we will be going to a friends house. I tell her every night before bed several times that tomorrow is a school day or a home day. Her progress lately has been amazing. It’s really exciting. I feel like we are starting the next chapter in life with her and it makes my heart want to fing explode. We keep things small, and with people she’s familiar and comfortable with. It was such a hard adjustment. People’s feelings got hurt. At the end of the day, and I mean this in the kindest way possible, it wasn’t about anyone else’s feelings except for hers. And that’s all it ever comes down to. Making Elle feel safe and comfortable. We are a social family. But now it’s just life. It’s our life 🩷🩷 And right now, it’s pretty fucking awesome… and super exhausting…

I’m trying to embrace change and that things don’t go as planned. That’s just life. It’s still super hard to not get upset. Our plans change constantly. I feel like an unreliable flake and that feeling makes me feel like shit. It usually just depends on how Elle is when she wakes up. We always have a back up plan in place. We rarely, rarely ever get to do things with our friends. They love to do big bbqs, camp, travel together, and we just can’t do it. Some of our friends do a big Mexico trip every year and one year, I am positive it will happen for us. We’ve yet to put her on an airplane- the idea horrifies me… one day. Sometimes I get so sad.for Elle missing out. For my big kids having to miss out.…..but that’s OK. We are making huuggeeee progress in leaving the house…. sometimes…. Every single day is different.

As I write this- we are driving down to Disneyland. I’ve been prepping her for a solid month with a social story about it. I can’t wait to see how everything goes. Her aide at school said, “ Ummmm, she keeps saying she’s hungry and rubbing her tummy and saying she wants Goofys chicken…” I died laughing. She wants to go to Goofys Kitchen… it’s in her social story. I’m not a rookie anymore 🤣 She’s so excited. I’m so anxious and nervous and yet so damn excited for this family trip. I’m also currently planning our summer trip to San Diego. Our oldest is turning 17. We decided it’s time to do the trips because our time with her is counting down. We will be touring a college while we go. Just so many big exciting things. I’m determined to plan and prep and start making some huge, amazing memories for our family….All without pushing Elle to the point of no return. Life’s short. So you know, we shall see!Elle’s doing much better in life. She’s fun and curious. She doesn’t like crowds. And gets overstimulated and melts down. But we are learning. Majorly learning, and are able to do more and more with her. The past few months have been so big for us as a family. We’ve stayed for an entire afternoon at a friend’s house all together with Elle. We even spent a weekend with two other families in an air b and b and did a Christmas light show! It’s fing amazing.

I hope that this post gives you a little insight. And maybe some helpful tips for traveling. Check out my shopping page for some of my fave items for leaving the home with our girl. And know that even though things are different and lonely at times, it makes for other amazing memories… they just may come in the form of a nice family night at home playing Mario Cart instead of out in the world…..they just look different.. and that’s OK. But it’s also ok to be sad about things looking differently then they had before…. I think it’s normal and healthy to mourn things like this…As long as you try to see a little beauty in the new way of things, you’ll be ok🩷 Cheers my friends 🥂 And thank you for reading 🩷