Home Sweet Home

(started writing this on Tuesday) There is something to be said about the "home sweet home" phrase. Over the weekend, we did a bit of a test family vacation. Steve's grandparents have a trailer in a summer campground of sorts, although it's much more resort like than a campground. His great grandmother also has a trailer up there that is currently for sale and vacant. We were offerred the opportunity to stay there. We thought this would be a great opportunity to see how things would go on a vacation. We'd be away from the conveniences of home but yet have family support nearby if we needed anything adn we also had a nice quiet place all to ourselves if Tyler needed a break. It's difficult to have Tyler outside in an open area and this is one of our biggest concerns when contemplating weekend trips and possible future vacations. So steve's grandma and mom were great, they kind of helped get the place set up for our visit and brought up linens, dishes, even stocked the fridge with pop for us ;) We had our own golf cart to use and access to beaches, playgrounds, pools and water parks. Tyler loves water and Ben loves people so we thought/had hoped this would be one of those life altering moments like when we all watched a movie together one time, that we got a sense of what it's like to be a normal family. Unfortunately the weather didn't really cooperate.

So to start off on the drive, we knew we'd have to break up the trip, the longest the boys have ever been in the car is 3 hours and it wasn't fun, and we've only done it that once so we decided to stop halfway. We packed lunches since Tyler can't eat at any restaurants and had originally hoped to go to a water park in Lansing but it was way to chilly so we had to find a new park. Luckily we found a great one, however, it was almost too great! They had a water/bead feature that's hard to explain but Tyler was very obssesive with it which made it hard for us to get him to eat and thefore to eventually leave. It also left us somewhat stranded in trying to pack the car back up and Ben wanted to play on the structure and Tyler wouldn't budge from this bead/water thing. So I made the decisiont to let Ben play on the structure alone which also meant I couldnt' see him most of the time and was having significant anxiety about it all (steve was loading the car) but in the grand scheme again, it's safer to leave ben alone than Tyler so I took a risk and luckily everyone came out ok. Steve was rushing so it wasn't too long and everytime I saw ben I was watching his direction and watching anyone that could possible enter the area with him. ok back in the car... yeah on our way to family vacation.

our arrival was good, Steve's mom and grandma came down to help play with kids while we got settled.. we had to unpack Tyler's dishes and food and set up a system of sorts for washing Tyler's dishes. He can't use the same water, sponges/washclothes, or anything else that is being used to wash everyone else's food due to cross contamination and obviously there was no dishwasher which makes that all pretty easy to deal with at home. The weather wasn't so great for any type of water activties so we kind of just rode around a bit on the golf cart, played inside and went to grandmas for dinner. The boys hadn't napped so they both crashed pretty early.

We had a plan for Saturday to spend most of the time between the water park and the beach but it was just too cold to do those activities so we got up and around and took the boys to one of the playgrounds, unfortunately itw as also near the water park and even though it wasn't open, Tyler could see the water and was really wanting to go play in it. We were able to distract him a bit and decided to go on a golf cart ride. The park was packed and there were hudnreds of golf cards so intersections requried some waiting, the longer we went on our ride the more squirmy Tyler was getting at the intersections. We had brought toys to help deal with the waiting but eevntually he was bored with them. We decided to go back to the trailer and have lunch. After lunch it was still too cool for playing in the water but we wanted to find a way to get the boys tired so they'd nap and be able to stay awake for fire wworks. There was a playground near the indoor pool on the sandy beach that we attemped to visit but Tyler was just unable to play on the playground with water so close by, we kept trying to distract him and play fun games but it wasn't working so Steve left with Tyler and Ben & I hung out for a little on the playgrund. Ok, back to trailer for naps. It was a one bedroom so Ben slept ont he pullout sofa..we had Tyler in a pack n play. Well Tyler didn't feel much like napping and kept jumping out of the pack n play which we were worriedw ould wake up ben and obviously we can't just let Tyler roam free. We knew he'd never make it to fireworks without napping so Steve decided to take Tyler for a drive (we had to race out the door to beat the parade) and I stayed back with Ben. After 45 mins Tyler still wasn't asleep so he brought Tyler back and took him to the water park (finally warm enough, yeaH) and I stayed with Ben. By the time Ben woke up and we got ready for the park it was about 4:15. We played at the park until 5 when it closed and then went back to the trailer to make Tyler's dinner. We wer eeating dinner at Steve's grandparents house but had to take Tyler's food over there. So we prepared dinner and brough ttoys over to grandmas so tyler would be happy. Everyone ate and as soon as we were done, Tyler was super tired. ben went outside to play ball with grandma and dad and i snuggled with Tyler. We decided to leave to put TYler to bed as they had visitors that stopped by and Tyler went to the bedroom to avoid the people anyway. Ben stayed with grandma and played ball. A bit later, Grandma stopped by and askd if she could keep ben for a while to play and then take him to fire works. We agreed he'd have a great time and then thought it probably would be best for him to just stay at the other trailer with her since Tyler would be up early and Ben is staying up late so we wouldnt' have anywhere to let Tyler play while Ben was sleeping in the morning. So steve and I stayed at the trailer and didnt' feel comfortable leaving very far from Tyler. Since we knew he could climb out of the pack n play and since he doesn't talk, we may not always know what's going on unless we can physically see him. We went to bed before the fireworks.

NExt morning we are packing up to leaev and grandma comes by with Ben and Ben had a great time at the fireworks, he loved them and was in awe of everything. They were going on a nother golf card ride to go see the trail, talkign deer, etc. the misc. things people had in their little lawns for decorations. He was having a ball. i on the other hand felt like I missed out on another moment in Ben's life. I had spent most of Saturday inside with one sleeping child or another and just had an overall feeling of saddness. It's one thing to be home, where we have all the conveniences and supports in place and you know you are working towards a goal, but when you are out on a holiday weekend and you see how much fun other families are having (TOGETHER!!!) well it just makes you sad. You have an idea in your mind of having a family and what it will be like and ours isn't that way and I accept that wholeheartedly and do what we can to help the situation, and we know we aren't like other families, but still sometimes it's hard to actually see it. So I chalk it up to a learning experience, one that the weather certainly didn't help. We need to work on Tyler's ability to be close to water but not have to necsesarily be in it. We had family support and without it, Ben wouldnt' have had much of a good time either so we know that if we do anything again in the near future we need to have family around. We know that our success on outdoor trips depends heavily on the weather and access to water or else we can't keep Tyler's interest. And all and all it wasn't a bad weekend by any means, we just all did separate activities and there wasn't the sense of togetherness that I had hoped to feel.

On a side note, please keep in mind that this is Tyler's journey, our life in a nutshell trying to help him,t rying to be a family, trying to live a normal life so i write from the aspect of how autism effects our lives. I hope that you all understand that this is also sort of a documentation of our lives, as I'm hoping to look back one day at the way things used to be and realize how far we've come. So I'm not saying that other people don't have it worse, I know they do. But this journal is about Tyler, not about those people that have it worse than us, and I want to capture all aspects of how autism can affect you in ways that many could never understand. Who would think that sitting on a golf cart waiting to turn would be hard, who would think that your kid would not want to eat cause he'd rather stare at the beads in the park, who would think that your kid would love the feeling of sand on his feet, who would think that you have to strategically place dirty dishes as to not mix one with the other, those are ultimately the things that we deal with every minute. So when you take us out of our safe guards, it's just hard and that's what I want this journal to capture.


So after coming off a weekend where I just felt like I was missing out on family time, I put a lot a lot of thought into planning the evening after work. A little advance planning goes a long way in our life and I needed to feel that we could all do fun things together. I raced home after work before I picked up the boys from daycare so I could change my clothes and get the boys bikes ready for a a bike ride. you may wonder what "get the bikes ready" means. I have to get them off the hook, put a toy in the back of the bike for Tyler and get drinks ready for the boys. Tyler struggles with "waiting' for just about anything and when we are outside I get nervous if I'm doing something and he's "waiting' because he can easily take off and I may not notice. The reason I wanted to do this in advance is that he struggles with the transition from the car, to the house, and then immediately back outside again. So it's just easier if I can get him out of the car and put him directly on the bike. he sometimes even gets upset about getting on the bike initially even if we don't go inside. So anyway, I then got the boys from daycare and on the way home we talked about the plan for the evening (Tyler just listend). It was bike ride, make dinner, eat dinner, play on swings/slides/sandbox, bath, story, and bed. When we got out of the car (we always get Ben out first cause we know he'll stick around while we get Tyler out) and then get on the bikes. As initially thought, Tyler was a bit resistant to get on his bike so I gave him his toy, next time i"ll make sure to give him his toy before I ask him to get on the bike. I do take the toy away before we get to teh first intersectin and he's usually ok with that. Anyway the bike ride went great. Ben was singing songs with me and he chose songs that Tyler likes too (helps Tyler pedal). We got back and made dinner and everyone was great, everyone ate a good dinner with very few supports in place. We went outside and swang and then played in teh sand box. Tyler doesn't like the sand box but i was able to play with him with things he did like whiel I played with ben inthe sandbox. Bath time wwas seemless we sang together and did bubbles and then a book and bed. It was perfect. I couldn't have asked for a better evening, all transitions except car to bike were seemless, I gave lots of warnings and everyone worked very well together and took turns with mom. THANK YOU!!! Someone must have heard my prayers that I just occasionally need to feel like we can be a family all at the same time and not have to split up to get through life. It felt so good.

So I nkow this is the longest post.. I figure why not keep writing. Ben said something to sweet to me the other day. we were on oru way to daycare in the morning and he said, "Mom, I wish Ty-Ty woudl talk to me"... I said oh honey, mommy does too! I reassured him that he could talk to Tyler whenever he wanted and that Tyler can hear him (should have used this as an opportunity to promote sign language and how he can talk to him that way oopsss..Ben seems to be more interested in sign language lately.

Sorry for all the spelling errors..