On coming home from work - "Mom...can we go to Calgary and go to the Lego store to buy the new Harry Potter lego set?" still getting into the door and attempting to get a shoe off. "Not today buddy - it is a long drive and it is almost supper time" ... have completed one shoe and working on getting the other one off. "Oh" he replies...next breath" then I need to go see Disney Pixar's Cars 2 in the movie theater" ... by this time I have made it past him and working on gettin my coat off as his three year old sister is hugging my leg. "Mason...when does Cars 2 come out into the movie theater?" "I don't know" "Mason...when does Cars 2 come out into the movie theater?" "uhhh...June twothousand eleven" "What does the calendar say?" "April" "How many months until June 2011?" "ummm...2!" "Right." and then off he goes to his room to build something out of his duplo blocks.
We have a never ending litany of requests that may seem so far out into left field - that to anyone else it would be a curious case of "how do you know that". In our house when you have a little man that perseverates continuously about the same things over and over - you get used to to the repetition.
It was World Autism Awareness Day yesterday, a day that got very little press from anyone outside of the community - I wondered why. I have a few things on my mind regarding my realities in this world. I lost my job a couple of months ago, I am a highly skilled professional with a decent amount of experience in many different fields and combined into one field I have discovered that I am a really good person to have around when you need something done - no matter what it is. I have been on several interviews, I have applied for many jobs - I have not been successful at all yet. I can't even get a job at my previous place of retail work...don't qualify anymore. I have been very open about the family dynamic, that I need to have a reliable schedule, I may need to take some time off when we get our service dog, I have to be able to plan my life around the needs of my family. I get the standard nod and of course answer - interview goes great but for some reason I am not qualified for a position that I held less than a year ago. Go figure. The world is not very accomodating to families on many levels, less accomodating to families who have challenges. We may have to duke it out with the condo board at my in laws place because they don't even allow dogs inside of a vehicle on their property. Crazy. My little man has brought just as much joy into my life as the rest of my children and the only thing different is that he needs a little extra care and attention when he is inside of our family unit.
Like any child - we need to keep him safe, we need to fee him, love him, support him, get him the education that he deserves and answer his questions about going to the lego store in Calgary - 15 times per day sometimes. He doesn't eat the same foods as us, he sleeps less than most 8 year olds, he's pretty skinny and he is also pretty tall. From the outside - this package doesn't look any different that any other 8 year old - until you ask him a question like how old he is, when is your birthday, what grade are you in. With a lot of rehearsing and repetition he can answer those questions, but not on the fly - unless he decides to make us look like idiots - which he seems to enjoy once in awhile. His older siblings have no idea what it is like to have a sibling who is not autistic and his baby sister doesn't know that she is not autistic. In our world - the idea of being able to leave the house and go for a road trip doesn't happen. We have lost the ability to be spontaneous. Our family has never gone on a family vacation - ever. We hope that the service dog will help us do that...we had actually planned to make a trip to his most desired place - Disneyland - but life circumstances have changed those plans...probably a good thing because next year we will have our service dog and it will be less stressful taking him to the happiest place on earth and we will all be able to have fun.
I am a very random blogger, I try to remember to blog as often as possible, I have created a home office for myself and so the odds of blogging daily will be better. I have a lot to say and speaking in autism - for our family - is our reality. Everyone goes back to school tomorrow - after a rather uneventful week - so we shall see how that goes. My younger son does not have a fondness for school - might be that the kids can be a little frusterating for him and being able to tell them to back off is a tough one. Thankfully he has wonderful support from his aide - who we have been able to keep for a couple of years. Now that school is back in - I work at my crappy little gas bar job (I only call it crappy cuz my oldest daughter makes more than I do per hour as a courtesy clerk inside the store) and focus on building a business that will allow me to go straight to the top. I want to be able to take care of all of my kids for as long as they need me for and for the ones that move on - well then they can work with me (if they want). I don't want money to be an obstacle for my family - I want it to represent a means to reach their goals. Making your own way in the world makes the work feel like it is worth it.
I am reading a book about autisms false prophets - I am horrified by the things that people are willing to do to their kids for a "cure". Brain diseases (as autism is referenced in the medical community) are not curable, I am not a doctor but if the brain could be cured of anything - alzheimers, parkinsons, ms, epilepsy - those would all be gone. Parents need to focus on management if they can, stop blaming something for this difference and move forward and get to know their kid - we keep things as real as possible, as a result we don't have a whole lot of nice things, we don't invite people over to often (actually never) but at the end of the day - he has his space, everyone has their space now - almost and in this tiny house we call home we have a bunch of kids that are mine are all gonna turn out pretty good. I have no doubts in my mind. People wonder what goes on behind these doors - but they never ask. I have read some stories of how these autistic kids have ruined the lives of their families - I think that perspective is a choice. I believe that we manage what we are dealt with a positive attitude, we learn as we go and then we speak in autism. I am random - at this point because I have so much to say and I am also distracted by the fact that it sunday afternoon and the sun is trying to shine - finally. I am going to sign off for now and hopefully come back with something a little more organized. Austism is not scary - it is a new way of living for many people and it doesn't have to be hard...
