Easier said than done!

Many families make plans to go and do and often times when other families get together there is so much thought in the planning and food that often the kids are not considered. In a family with typically developing kids there is no reason to think about the kids because for the most part kids are self-reliant and the mere pop in a movie or bring a few toys is a pretty easy problem solver. For the most part kids can pretty much find their own things to play with or are easily persuaded to do just about anything. Pool parties are fun with hardly any worries, gatherings outside are a time where parents can relax and the kids can play full knowing the kids are safe.

Though this describes most families it does not describe ours. Any time and I mean anytime we are going somewhere we are constantly thinking about the ramifications. We continually survey what will happen while we are there and the problems we may incur. We are NOT your typical family, we are a special needs family and though we strive to be just like everyone else we know that there is a much deeper thought process that must always go on before we make decisions. Jackson is at our continual forethought. Jackson is now 6 years old and though for most people he would be much easier to maintain, this is not always true. Though he is 6 developmentally he is about 2 or 3. He doesn't understand why certain noises bother him and he just wants to cover his ears and go away. He doesn't understand why he just can't go somewhere or what he is supposed to do each minute of the day to keep him occupied. Cause and effect is not something he has grasped yet and because of these processes we have to make sure he will always have something to do and that he will be safe. More than that, if we are going with friends will we have the opportunity to relax or will be continually running around? If it's a new place I can safely say we'll be running around, thus we'd rather stay home.

We never know what will set him off, it could be the crying of a baby or the loud noises children make when they are running around. We never know how other children will perceive him...often they see him, but never play with him only stare or run away from him or tell me everything he's doing wrong! We must always bring toys for him to play with because we know that there are certain toys that can entertain him for long periods of time. We also know the DVD's he enjoys and calms him so we always have those available for him to watch, even if it means I go to the car and he watches it there. It's never easy!

If you do not have a special needs child this will be something you will never understand, you can pity the situation or be on the opposite side and say we are too concerned but all I can say is that if it means peace of mind and sometimes peace and quiet, then these are the precautions we must take.

Yesterday we decided to try taking the kids to the beach. We have been asked several times to go to the beach with friends, etc but always said no for a couple of reasons: Past experiences have never been good and we didn't want to commit, get there, then leave and feel bad that we had to because is wasn't working out with Jack. So we chose to try as a family to go to the beach. It was touch and go for a little bit, but overall it was a relaxing time. We got Jackson used to the water and playing with his brother and sisters, then they began to make sandcastles and Jackson would get water to fill in the moat. Darren and I could sit down and watch everything take place without the worry of Jackson going into the water and going too far in. We noticed that he still loses his balance even a knee deep water which tells us he is still not ready to go much further. Unfortunately this poses problems with our other kids who want to trek further out. Anytime they started to go out, Jackson would follow not understanding that the water was getting deeper and he wouldn't be able to keep balance. However, yesterday there was a nice area where Jackson could play without the threat of waves due to the sand bars that were breaking the waves for him. He was able to sit in the water without the worry of falling over but mostly he found most of his time playing in the sand. Is this to say it will always be this way? Who knows, will it be different with other families involved, probably so, but now that we know what attracts him and keep him busy and that's the important part. So we will continue to attempt going to the beach allowing him to become accustomed to the water and our expectations in hopes that we will find a pattern that works for us.

I think the hardest part in all of this is not being able to be a part of everything. We miss so much, but to us it is worth it for sanity. For us to continually check to see where Jack is, what he's doing, what he's getting into is a lot of work because he must always be in our sights. Water is not our friend because for Jack it is an attraction he is constantly pulled toward even though he can't swim and even with a life jacket on it is difficult to keep him upright. It is so difficult to explain! If you would have told me about this before having Jack I would have thought , you're babying him, coddling him, you just need to get over it and let him just do. It's just not that simple when he doesn't have the check system most people are born with and learn at a young age. It's not that simple when he begins to break down and start crying becoming a blob on the floor that is difficult to pick up off the ground. It's not that simple when he becomes so frustrated he gets aggressive and starts hitting other children to either get attention or to get them to play with him. It just not that simple. And though I do not expect many parents to understand I did want to shed some light on our situation. 

So when we say we can't please know that we are desperately saying yes inside, but also know that in the best interest of us and our family we just can't at this time. This is not to say that next time will be the same because Jackson is always changing and growing. Every day is a new day and we always take it one day at a time!