On Friday I spent a lot of time in deep thought about what it would be like to have neurotyical children and to have a normal family life. Many families welcomed summer this weekend having picnics at the park, picnics at the lake, weekend getaways,etc. This is only the beginning to memorable family times for normal families.
When I think back to my childhood it brings a smile but also some tears to my eyes. A few things that stick out in my memories are the times my mom and aunt loaded me, my brothers, and my cousins in a car and headed to Holiday World for a fun day......and the days that my family and our family friends headed to Carlye to the water slide for a day of family fun......riding my bike up the road to my aunts to swim all day with my cousins.....or the few family vacations my parents took us on.....all I have to say was...THOSE WERE THE DAYS!
None of that is possible right now with two boys with autism. Honestly, I am afraid those days will never be possible for this family of four. We have been doing therapy for two years and yes we have made progress but we have a long way to go. A VERY LONG WAY TO GO with Trenton and if Andrew keeps up with how he has been progressing lately we have a very long way to go with him too.
My mother hood experience that I always dreamed about is NOTHING like I thought it was going to be. At least I had 30 years of a normal life where my boys have none.
Every day I daydream about normal family life. Lately I day dream about the small things such as packing up a cooler of sandwiches, chips, and juice boxes and taking it to the lake and sitting on a blanket while eating our lunch. Something that small is not possible with the boys. They would sit still for about 10 seconds and then Trenton would start running away without looking back. He would run right into traffic, right into the lake without even giving danger one thought. Andrew would either follow him or he would be stuck to my hip fussing and crying because he is so unsure of the world and scared at everything that he is unfamiliar with. Something so small is not even close to being visible to our family. It haunts me every second of my life that the boys can't enjoy even the smallest of pleasures about being a kid.
Instead of summer fun we will be found in our prison cell leaving our autism life. The sad thing is that is how I want it and how the boys want it. Nothing is fun, its all hard work. Getting out is more of a punishment because you see normal kids with their parents. I even hate getting groceries because I am slapped in the face with that sight every time. How can I expect anything to be fun when going out in my back yard takes major planning and is only possible with assistance from Nana. I simply can't take the boys out in my own yard!!!!!!!!!!!! If I do, Trenton runs one way and just keeps on running and Andrew is once again scared and attached to my hip. Running full speed with thirty pounds on my hip chasing after Trenton who has the speed of an Olympic runner already is not possible without major strategic planning and assistance. So why in the world would I expect anything else, anywhere else when nothing is possible in my own back yard?
With that said, Nana and Pop made a picnic happen on Friday night. Andrew was great to sit at the picnic table and Trenton lasted maybe 60 seconds total. I once again.....like always....was left to chase an Olympic runner around the farm.
Now to be perfectly honest, there are days I want to take this silly blog and erase it all. I totally mean that. Why? Well, it does not do justice what life is like with autism. For example, by just looking at the pictures on this post you might think that we are completely normal. If you read with an open mind, it says a completely different story. However, even words on this blog can not put into words what it is like. In between all the cute pictures is nothing but heartache, loneliness,worry, sadness...do I really need to put down any more adjectives than those? My list would be endless. Because between all the cute pictures is nothing but...............hearing non-stop screeching noises from Trenton...listening to nothing but learned repetitive language from Andrew and if he doesn't have any learned language for the situation that he is in he does nothing but scream and say "no" .........being up around clock and wondering when the next ten minutes of shut eye might be....its watching Trenton take his fist like he did last night and pound his skull over and over and over and over and over and over and over while I am constantly redirecting him while I listening to the awful sound that my child's fist makes on his own skull......its trying to teach my 2 1/2 year that we don't eat poop.......its trying to teach my 2 1/2 year old how to hold a spoon and fork that he once knew how to do but he lost it when autism took over......its having the patience for Trenton's new "stim" which is watching only the first two minutes of his favorite 6 DVDs while I am the one who has to take the DVD out and put the new one in for two minutes while I then take that DVD out and put the next one in for two minutes and so forth....and so forth...........and so forth............so much more to add to this paragraph but I would be on here for the next three hours.
Therefore I will end with this......
On some days all I hear is "pops tractor" out of Andrews mouth. Well, he took a ride this weekend and loved it
I do nothing but chase Trenton and I let him just run for awhile this weekend and he loved it