So, day 3 back from the beach. Monday, settling in actually quite nicely. In fact, my little guy has already made dinner for the family (minus 2 steps that I will help with in a bit). Yep, that kind of Monday. He came up with the idea, his behaviorist and him sat down and looked up a basil gluten free pasta recipe (he came up with these key words), and right now the sauce is simmering. He wanted to use the basil from his garden plot in the front yard. I just love when he's motivated to cook- it's a great very calming activity for him. It helps him get into a good zone :) In fact, he met a new behaviorist as well today- she'll be coming two times a week, and so something NEW, and Monday so a CHANGE in schedule from the weekend, and first day back after our trip... so lots to get used to and lots to get into groove with. This could have been a huge recipe for a disaster.... but I have so say, he's been settling back into home quite well since we've been back. Which is good- because this is the story of our trip (and it is exactly the same as all our other trips- literally at least 6 or 7 times over the past few years- and this is how it goes:
Our family was not able to go on vacations for so long- ever since my son's cecostomy has been in place- he HAS TO BE HOME TO GO ON THE FRONT BATHROOM POTTY AT 7:00PM... NO MATTER WHAT!! Well, as you can imagine, quite restrictive. In so many ways. Plus, going places historically has been so difficult, and it's not easy eating out since I have 2 children including myself now, that are wheat/gluten and dairy/casein free. Let's just say between dietary restrictions and a very very very picky eater- very hard to eat out. And never mind the entire being out in public in a restaurant- well to say it's hard is a huge understatement. So vacations just were not happening- our kids were growing, getting older- and we had never even taken our little one on a trip. It becomes overwhelming just thinking about that... no beach experience, no special memories. Sure, my husband would take time off from work, and we would do stay-cation, before it became a thing to do. And we would treat it like we were on vacation- not get preoccupied by chores, and other household things- just simply be together as a family- and swim, BBQ, indulge in sweet delights, stay up light- even backyard camping (a few times anyway). My husband and I camped well before we had children- we went from Tent, up to little tent trailer- up a little bit to a hybrid trailer- back to a tent .... And it just never seemed possible to go anywhere now that Ty was having such great struggles. So, with some retirement funds, not much, but enough to get us a used travel trailer, sell our electric car (yes a car that has no doors, pure electric that only goes 25mph- perfect for around town until my son learned how to unbuckle himself and tried escaping a few times- so that car wasn't going to be so great for our family after all), so we were able to buy a bigger car to tow. So we did- my husband loves to hunt for a good deal and found us one. An awesome trailer- so now we are one of those families at the beach with all the accommodations of home- including a bathroom- and a kitchen to cook our own meals. Perfect, now just to get Ty to use the potty on the trailer. We literally practiced and practiced.... so now he does go on that potty- yeah- victory! And for the last 3 years we have had this set up- we go to the exact same campground, the exact same campsite, the exact same EVERYTHING>.... so it truly is our home away from home. We try to go 2x a year- for a minimum of 5 nights. Why 5 nights? Well, this is how it goes. Getting there, a simple 2 hour drive for some- for us- 2 hours of hell. Before we are even on the freeway from our town- we hear from the back- how much longer??? ugh, really???? And heaven forbid if there is traffic- oh boy! The longest 2 hours ever! So, it's always a huge accomplishment to just simply GET THERE!!!. So, once we are there, now it's set up time. As my husband always says, "what are you bringing, our entire house??" Well, actually almost- it definitely helps Ty to have 'his things'... plus our site has the most wonderful tree- the perfect climbing tree... and on one of the first trips out- we saw how wonderful this tree was to have. Not right away, but by the end of the week- Ty is climbing, swinging, playing, engaging, being independent for more then 5 minutes. It's such a beautiful thing to see- esp when you have a child who struggles so much with these basic activities. But like I said, not right away. Day 1, have to just get through. Usually major behaviors, usually needing restraint to keep from hurting himself or us, not a lot of sleep, not a lot of organized brain activity. But between myself and my husband who is incredible- we literally take turns, playing with Ty, occupying Ty, doing activities with him that help him through this transition, help him organize himself enough to even co-regulate (there's that word again, told you I would use it a lot), literally keep him busy and do very purposeful activities to calm him, organize him, regulate him. And most of the time that means, NEVER leaving our campsite. But that's okay- because we are literally camping in the sand, hearing the ocean, have wonderful camping loops to ride bikes, scooters, play catch, play with the dogs. Then the sand right at our site- is such a great sensory calming fun time- lots of digging (good heavy work), lots of collecting, lots of different fun things. I always come prepared with my list of activities- plus we keep things on the trailer that are new and novel. Things we don't have at home. And Ty has a very important job for our family. He builds the camp fire. Not set it, but stack the wood good for a camp fire to light.. he's quite a little master at it. He takes great care to pick the wood, find the scrap wood for kindling, and arrange it just right. So daily that is his job- to get us started. There was once a time (well less then 3 years ago) where he was deathly afraid of the campfire. Where we couldn't even have them- it just caused him so much anxiety. Then he progressed to just staying in the trailer, watching through the window- that was a big deal- he allowed us to have the fire, roast marshmallows, and he was okay with being in the trailer watching. Then he progressed to hanging out inside this great little tiny tent (his little sensory retreat)- where we would place it outside, at a distance, but he could still talk with us. Then about 1 1/2 years ago, he decided he wanted to set up the wood- okay. And the rest is history now, and he will sit around the camp fire with the family, roast marshmallows, and be present with us. It's wonderful. It's one of my most favorite things to do with the family when we go. So, fast forward, this latest trip. Same story, takes about 3 days for him to get used to being there. To really calm down enough to smile, laugh and be present. And it happens slowly. Where he invites one of the girls to play in the tree. Or they all ride bikes together. Basically it means he isn't needing myself or my husband 100% of the time any more. HUGE!! And this is when we get to relax a little. Now don't get me wrong- we don't have too much relaxing going on- there's this issue that they are fighting about- there's still his nightly flush that causes angst for him- and heaven forbid if we leave our campsite, walk about 500yards to the beach... nope- not a good experience. Should be, sure! But not for him- he becomes anxious, he becomes, irritated at all things, he's nervous about everything little thing everyone else is doing. He just can't settle in.. and then requests to go back to the trailer, and sure enough- we don't usually get back without behaviors- him screaming, starting to hit/kick, etc. So not quite the pleasant beach experience most have. But no what, we're here! Yeah- victory- even if we can't now leave our campsite. Oh we've tried, many different types of things- I won't even begin to tell you when we went to the tide pools- I"m still a little traumatized by the whole experience- lots of crying, screaming- he was so absolutely terrified, thought we were all going to die, just so much. Of course I did take pictures of it and also video taped- because only my family does this happen. Things that are supposed to be fun, great family outings, activities, whatever you want to call it- NEVER HAPPENS FOR THIS FAMILY! But that's okay- we have come to the conclusion there are just things that aren't going to happen, things that are just too much for him (and let me tell you, the girls were not much better on that experience- lots of sensory overload happening). But just like at home, we do a lot of divide and conquer, divide and go have experiences, divide and have fun. That's really the only way to do things within our family. So we do. The girls and I go to the beach a lot, my husband loves to take Megan on long bike rides to get ice cream, we do crafts, we play baseball, we cook all our meals over the campfire- including pancakes. So we do give our kids a good fun experience. But what's the point of an experience, if the child just can't tolerate it. So we meet him where he is, we hope to bring him out a bit (literally out of this little box world), and allow him to have positive experiences away from our house, at the beach. And some would say, well then you're just stuck there. But I say, heck yeah- stuck at the beach- fine! It's actually quite liberating knowing you aren't going to go anywhere- just hang out, have fun, play with your kids, get tuned into the family- get tuned into nature. Yes sir, fine with me. So back to his transition- 3 days pass, one day a little better then the day before (at least we hope so), and then day 4 comes, and we notice, he's off playing, he's off climbing, he's digging giant holes in the sand at the campground (not much better proprioceptive activity, right?), wanting to engage, being patient, sleeping better, and overall calmer, more focused, and smiling a LOT!! LOVE THIS PART!!! And mind you, when we are there, he eats, oatmeal, cereal, and not much else. To expand his food while there- is just too much to ask- but that is fine by us- I have what he wants, he's good to go! Sometimes he'll eat grapes or other snack foods, like rice chips (always salty crunchy- again very helpful regulating things). So now we get to really enjoy our trip- my husband and I will typically get to drink a glass of wine or have a beer by the campfire, this trip in celebration of our wedding anniversary coming up we had campfire mimosa's- (like they say, everything tastes better camping, right? :) )... so we simply exist, enjoy, smile, laugh and capture the memories. It's wonderful. Then for the next 1 1/2 days- we have this bliss. Then after night 5, day 6- IT'S TRANSITION TIME AGAIN!.. we head home- We have to pack things up, get the trailer back together for towing, drive 2 hours (and hope there is no traffic) and head home. This trip was quite a good travel home- he slept a lot- yeah! That certainly makes for a more pleasant drive home. Then we arrive home and it's unpacking time- laundry (lots and lots of laundry) and cleaning out the trailer to put back in storage for our next trip- whenever that will be. But I will post one more picture, this is Ty 20 minutes after arriving home, after sleeping almost the entire way in the car.... because leaving home, no matter what is just exhausting to him- and the fact that he just falls asleep, well considering the alternative- it's beautiful- like a newborn baby.
So, day 3 back from the beach. Monday, settling in actually quite nicely. In fact, my little guy has already made dinner for the family (minus 2 steps that I will help with in a bit). Yep, that kind of Monday. He came up with the idea, his behaviorist and him sat down and looked up a basil gluten free pasta recipe (he came up with these key words), and right now the sauce is simmering. He wanted to use the basil from his garden plot in the front yard. I just love when he's motivated to cook- it's a great very calming activity for him. It helps him get into a good zone :) In fact, he met a new behaviorist as well today- she'll be coming two times a week, and so something NEW, and Monday so a CHANGE in schedule from the weekend, and first day back after our trip... so lots to get used to and lots to get into groove with. This could have been a huge recipe for a disaster.... but I have so say, he's been settling back into home quite well since we've been back. Which is good- because this is the story of our trip (and it is exactly the same as all our other trips- literally at least 6 or 7 times over the past few years- and this is how it goes:
Our family was not able to go on vacations for so long- ever since my son's cecostomy has been in place- he HAS TO BE HOME TO GO ON THE FRONT BATHROOM POTTY AT 7:00PM... NO MATTER WHAT!! Well, as you can imagine, quite restrictive. In so many ways. Plus, going places historically has been so difficult, and it's not easy eating out since I have 2 children including myself now, that are wheat/gluten and dairy/casein free. Let's just say between dietary restrictions and a very very very picky eater- very hard to eat out. And never mind the entire being out in public in a restaurant- well to say it's hard is a huge understatement. So vacations just were not happening- our kids were growing, getting older- and we had never even taken our little one on a trip. It becomes overwhelming just thinking about that... no beach experience, no special memories. Sure, my husband would take time off from work, and we would do stay-cation, before it became a thing to do. And we would treat it like we were on vacation- not get preoccupied by chores, and other household things- just simply be together as a family- and swim, BBQ, indulge in sweet delights, stay up light- even backyard camping (a few times anyway). My husband and I camped well before we had children- we went from Tent, up to little tent trailer- up a little bit to a hybrid trailer- back to a tent .... And it just never seemed possible to go anywhere now that Ty was having such great struggles. So, with some retirement funds, not much, but enough to get us a used travel trailer, sell our electric car (yes a car that has no doors, pure electric that only goes 25mph- perfect for around town until my son learned how to unbuckle himself and tried escaping a few times- so that car wasn't going to be so great for our family after all), so we were able to buy a bigger car to tow. So we did- my husband loves to hunt for a good deal and found us one. An awesome trailer- so now we are one of those families at the beach with all the accommodations of home- including a bathroom- and a kitchen to cook our own meals. Perfect, now just to get Ty to use the potty on the trailer. We literally practiced and practiced.... so now he does go on that potty- yeah- victory! And for the last 3 years we have had this set up- we go to the exact same campground, the exact same campsite, the exact same EVERYTHING>.... so it truly is our home away from home. We try to go 2x a year- for a minimum of 5 nights. Why 5 nights? Well, this is how it goes. Getting there, a simple 2 hour drive for some- for us- 2 hours of hell. Before we are even on the freeway from our town- we hear from the back- how much longer??? ugh, really???? And heaven forbid if there is traffic- oh boy! The longest 2 hours ever! So, it's always a huge accomplishment to just simply GET THERE!!!. So, once we are there, now it's set up time. As my husband always says, "what are you bringing, our entire house??" Well, actually almost- it definitely helps Ty to have 'his things'... plus our site has the most wonderful tree- the perfect climbing tree... and on one of the first trips out- we saw how wonderful this tree was to have. Not right away, but by the end of the week- Ty is climbing, swinging, playing, engaging, being independent for more then 5 minutes. It's such a beautiful thing to see- esp when you have a child who struggles so much with these basic activities. But like I said, not right away. Day 1, have to just get through. Usually major behaviors, usually needing restraint to keep from hurting himself or us, not a lot of sleep, not a lot of organized brain activity. But between myself and my husband who is incredible- we literally take turns, playing with Ty, occupying Ty, doing activities with him that help him through this transition, help him organize himself enough to even co-regulate (there's that word again, told you I would use it a lot), literally keep him busy and do very purposeful activities to calm him, organize him, regulate him. And most of the time that means, NEVER leaving our campsite. But that's okay- because we are literally camping in the sand, hearing the ocean, have wonderful camping loops to ride bikes, scooters, play catch, play with the dogs. Then the sand right at our site- is such a great sensory calming fun time- lots of digging (good heavy work), lots of collecting, lots of different fun things. I always come prepared with my list of activities- plus we keep things on the trailer that are new and novel. Things we don't have at home. And Ty has a very important job for our family. He builds the camp fire. Not set it, but stack the wood good for a camp fire to light.. he's quite a little master at it. He takes great care to pick the wood, find the scrap wood for kindling, and arrange it just right. So daily that is his job- to get us started. There was once a time (well less then 3 years ago) where he was deathly afraid of the campfire. Where we couldn't even have them- it just caused him so much anxiety. Then he progressed to just staying in the trailer, watching through the window- that was a big deal- he allowed us to have the fire, roast marshmallows, and he was okay with being in the trailer watching. Then he progressed to hanging out inside this great little tiny tent (his little sensory retreat)- where we would place it outside, at a distance, but he could still talk with us. Then about 1 1/2 years ago, he decided he wanted to set up the wood- okay. And the rest is history now, and he will sit around the camp fire with the family, roast marshmallows, and be present with us. It's wonderful. It's one of my most favorite things to do with the family when we go. So, fast forward, this latest trip. Same story, takes about 3 days for him to get used to being there. To really calm down enough to smile, laugh and be present. And it happens slowly. Where he invites one of the girls to play in the tree. Or they all ride bikes together. Basically it means he isn't needing myself or my husband 100% of the time any more. HUGE!! And this is when we get to relax a little. Now don't get me wrong- we don't have too much relaxing going on- there's this issue that they are fighting about- there's still his nightly flush that causes angst for him- and heaven forbid if we leave our campsite, walk about 500yards to the beach... nope- not a good experience. Should be, sure! But not for him- he becomes anxious, he becomes, irritated at all things, he's nervous about everything little thing everyone else is doing. He just can't settle in.. and then requests to go back to the trailer, and sure enough- we don't usually get back without behaviors- him screaming, starting to hit/kick, etc. So not quite the pleasant beach experience most have. But no what, we're here! Yeah- victory- even if we can't now leave our campsite. Oh we've tried, many different types of things- I won't even begin to tell you when we went to the tide pools- I"m still a little traumatized by the whole experience- lots of crying, screaming- he was so absolutely terrified, thought we were all going to die, just so much. Of course I did take pictures of it and also video taped- because only my family does this happen. Things that are supposed to be fun, great family outings, activities, whatever you want to call it- NEVER HAPPENS FOR THIS FAMILY! But that's okay- we have come to the conclusion there are just things that aren't going to happen, things that are just too much for him (and let me tell you, the girls were not much better on that experience- lots of sensory overload happening). But just like at home, we do a lot of divide and conquer, divide and go have experiences, divide and have fun. That's really the only way to do things within our family. So we do. The girls and I go to the beach a lot, my husband loves to take Megan on long bike rides to get ice cream, we do crafts, we play baseball, we cook all our meals over the campfire- including pancakes. So we do give our kids a good fun experience. But what's the point of an experience, if the child just can't tolerate it. So we meet him where he is, we hope to bring him out a bit (literally out of this little box world), and allow him to have positive experiences away from our house, at the beach. And some would say, well then you're just stuck there. But I say, heck yeah- stuck at the beach- fine! It's actually quite liberating knowing you aren't going to go anywhere- just hang out, have fun, play with your kids, get tuned into the family- get tuned into nature. Yes sir, fine with me. So back to his transition- 3 days pass, one day a little better then the day before (at least we hope so), and then day 4 comes, and we notice, he's off playing, he's off climbing, he's digging giant holes in the sand at the campground (not much better proprioceptive activity, right?), wanting to engage, being patient, sleeping better, and overall calmer, more focused, and smiling a LOT!! LOVE THIS PART!!! And mind you, when we are there, he eats, oatmeal, cereal, and not much else. To expand his food while there- is just too much to ask- but that is fine by us- I have what he wants, he's good to go! Sometimes he'll eat grapes or other snack foods, like rice chips (always salty crunchy- again very helpful regulating things). So now we get to really enjoy our trip- my husband and I will typically get to drink a glass of wine or have a beer by the campfire, this trip in celebration of our wedding anniversary coming up we had campfire mimosa's- (like they say, everything tastes better camping, right? :) )... so we simply exist, enjoy, smile, laugh and capture the memories. It's wonderful. Then for the next 1 1/2 days- we have this bliss. Then after night 5, day 6- IT'S TRANSITION TIME AGAIN!.. we head home- We have to pack things up, get the trailer back together for towing, drive 2 hours (and hope there is no traffic) and head home. This trip was quite a good travel home- he slept a lot- yeah! That certainly makes for a more pleasant drive home. Then we arrive home and it's unpacking time- laundry (lots and lots of laundry) and cleaning out the trailer to put back in storage for our next trip- whenever that will be. But I will post one more picture, this is Ty 20 minutes after arriving home, after sleeping almost the entire way in the car.... because leaving home, no matter what is just exhausting to him- and the fact that he just falls asleep, well considering the alternative- it's beautiful- like a newborn baby.
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