Wednesday, June 5, 2013

Vacation! Just have to get away

I have been thinking about about how to compose this blog for a few days now. However I have been to jealous and to busy feeling sorry for myself to actually sit down and right this. I try not to feel sorry for myself because I really need to focus on what I am so thankful for. I am do really have a lot of things to be thankful for such as my great job, wonderful family, great organizations that want me on their team and appreciate my dedication and hard work. I often put my focus there but then when I let my guard down this big green ugly monster comes in and invades my thoughts. It makes me think of the book I read to my preschoolers " Go Away Big Green Monster".

As things in our life become more demanding and more prevalent than in the past it takes me to a place that I hate going. This year just like every other lately we will miss out on fun family outings and family trips. For the last few years we have wanted to take a trip either to go back home so Chris can see his family or just go to San Antonio and let the kids have fun and get out the norm of here. We plan on saving our tax returns and any extra money we get and put it in a fund for us to go have a fun family getaway. We get excited and think how much fun the kids will have and then it happens.

We sit back and realize two things..... Funding. Yep money truly is the root of all evil in my book. Between copays, medication, equipment, childcare, bills etc it all adds up and it comes out in the sum of a whole lotta nothin in our bank account. Then there is reason number two. H. Public places are just well not fun nor easy for any of us. A trip to the splashpad here in town not 15 min away could end in pure hell for all of us. Picture it a big open ground with water spraying, no fences, lots of chaos and lets not forget a giant playground and pond all with in eyesight of this very active, eloping toddler. Anyone who wants to tell me that he would be fine and would probably not even leave the pad is truly kidding themselves or just not spent enough time with my child to know his true capabilities. I give him 5 min tops before we are getting more of a work out than most of the guys on base get in a PT test! Think I am joking? I dare you to take him!

Then there is the whole issue of traveling. H can tolerate a trip for only so long. Dallas is even pushing it. If we drive the whole three hours without stopping for food, gas or just to stop he can do ok. We pay for it the rest of the day but his attempts to break free of his seat are really minimal at best. So a trip to San Antonio to Sea World is just to long. Flying you say. Hmmm.... Let's put a child who gets sensory overload in a space where he is confined and unable to move with all the sights, sounds and smells. He can't walk through Walmart without losing it. An airport would probably be a HUGE joke. So as you can see going up to Massachusetts to visit family is out of the question.

So here we are it's summer and my friends and family are posting their vaca pictures talking about how their kids love it and having the time of their lives. I am posting pictures of therapy and trips to The Legacy Complex where H does his riding for therapy. I try not to let the monster in that makes me jealous and and hateful. I don't like going there so I often pass over the pictures and keep going or through clenched jaw and stiff fingers write a small comment like " looks like fun." or "Have fun for me!"

I think back of my childhood and can't think of a time when we were out of school that we were not traveling. We went to Colorado, Disney, Hawaii. I was spoiled. I always said I wanted to do that with my kids. They should get to have as much fun as I did when we went out of town as kids. The last trip we went on that was not to Dallas to visit family or for a doctors apt was San Antonio. It was actually for a training symposium and Chris and I decided that the three of us, himself, H and me would go. It was during the school year so the others were unable to go. It was just what we needed. It was so great to be away we decided to add one more day to our trip because we felt so amazing. That trip was 2 years ago.

Ok so 2 years ago doesn't sound that bad to some. That was prediagnosis and financial chaos we are now dealing with. It was a three day trip and a day and a day of that was spent in training. We arrived the afternoon the day before the training so we could enjoy a little bit before I went off to the symposium the next morning. PS I skipped out early because I missed my family and wanted to go be all touristy with them and just relax.

In two week Sean will be having his 13th birthday. Him and a friend or two will head out to Fair Park Summer Fun in the Park. check it out it looks like loads of fun. It is a much better alternative to Hurricane Harbor or even Six Flags. I had thought about taking H but then I decided between the cost of admission and chasing him all over it might not even be worth it to go at it alone. However I see the pictures my friends post or look at their webpage and think "Ugh why can't this be us!" I refuse to try and torture myself or my family to take outings that I know are just to much. Yes I will never know until I try but honestly I would rather try when I can afford to be out some money and I am not flying solo to attempt these new things.

A friend a few nights ago sent me this link.... I want to take H and the whole family. I know they deserve this fun. We all do. H especially. This would be right up his alley. I want to start a get us a vacation fund but that is silly. Right now we need more things like the important things covered first before saving for a trip.

Special needs families in my mind need those vacations those times away. They face the reality of the disability or disease daily and sometimes a small escape is all it takes to just help lift up the family and lighten their mood. Our breaks are far and few between. It means cancelling apts, therapy sessions and other things that have become our daily norm. Typical families look at the calendar and say " Ok July 15th through 22nd we will pack our bags up and head to the beach for the week." Jr might miss a soccer game, Jane might miss cheer practice, but its ok. Those misses aren't as crucial to their developmental progress is cancelling a week of OT, PT, SP even ABA. Those times missed are crucial times of learning for our children.

The flip side is to that however, families and children do need a break. I have started doing some home therapies with H to compensate for the week he is missing this week due to WTRC being closed for summer camp. This would have been the perfect week for that family vacation!

To my NT families taking those summer trips, and outings. Good for you. You are lucky to get to do those things for your family. Do not take those for granted. Cherish those memories and that time with them. Take lots of pictures so you can sit with your kids and look back and reflect on those fun times.

To my ASD/ Special Needs family. Take those pictures of your small trip to the pool, zoo or what have you. Do not take for granted the time you are spending with your family no matter how small or short that outing might be. Take those pictures, post them for all of us to see. Be proud of your family and what you are able to do together. Those are moments in time you won't get back.