Friday, June 18, 2010
Conversations with Taylor....
Today, I woke up wanting to call my son. Ahhhhhhhh... it should be an odd feeling, yet, it is a feeling I have every single morning. It has been two years and it still doesn't feel natural that he is not in my home, his home; ALWAYS HIS HOME. I struggle to go past his empty room, the one he used to sit in for hours and play video games on one of his many systems... the one that he used to get so mad at himself when he would mess up in his games... (he is brilliant at games and can master the game through all levels within a couple of days. It feels like a waste of money as he masters them and then gets bored with them.) The room he used to sit in and examine his hundreds of match box cars and he would be in a different place when doing so. He was not in tuned with his surroundings, as he was so fixated on his cars.
Now, although I get to see him often and we talk by telephone, it feels odd. At this age many teens are out on their own. I am trying to wrap this brain of mine around that... he is 19... this should be eaiser. Then I go back to Amanda leaving home... moving out on her own... it wasn't eaiser either. It was a different situation though. I knew she is a woman that will not let people take advantage of. With Taylor, that isn't so.
Autism... there are so many different spectrums of it. My son is very high functioning autism. Hmmmmmmm.... what the hell does that mean? Really? What does that mean. I ponder this time to time.
I am blessed that my son is verbal. He is aspergers. That is high functioning. He doesn't walk in circles or talk to himself a lot. He doesn't rock back and forth... well at times if he is really nervous he will start to... but not like highly autistic people. The hardest part for me I think, and that I struggle with the very most in our relationship is how to treat him. I mean, always do we treat him with love... but... as in age or comprehension level. There are parts of him that are like a five year old child. He needs to be reminded to wear his glasses when reading... to take a shower, to brush his teeth. There are parts of him that are of about a ten year old. His maturity level is that of about a 10 year old as far as I am able to track or tell. I have to remember to talk to him like he is ten most of the time as his brain wires connect this pretty well. However, then he is like a 19 year old boy... wanting to listen to popular music, go to dances, drive. Sadly he will never drive, and he gets so very disappointed. He has several things going on... in addition to the autism, he also has oppositional defiant disorder, adhd, and a touch of ocd. That is common with people with autism... to have several things wrong.
It is funny... as often times people that know me want to know more about it... and their questions are sometimes shocking. I try to blow it off to I am approachable enough for them to feel comfortable in asking me. That is good to know.
I will never forget one time someone asked me... I wish it could have been different for you. I didn't know how to read that. I didn't know how to gage my emotions to that.
Here is my feelings on the matter. I don't wish it was different. I hope that Taylor picks up the needed living skills he needs to live a safe and healthy life. He starts to harm himself when he can't communicate well, and that is very upsetting for any parent to live through. That is why he needs 24 hour care. He is never out of site of a staff in the house he lives. He is never out of arms length reach from staff when he is out in the public. This is all for his safety. As his parent, I need to keep him safe. Autistic children have troubles forming bonds, so I needed to make sure he was doing social things and making bonds with others rather than just his family. I needed to know that he was getting life skills under his belt. He needs to know how to cook, do his laundry, shop, save money, make out bills. Due to his ODD, he takes me as his authority or as me bossing him around and that was a struggle for him. When he learns this through his staff, it is learning and not someone bossing him around. I need to know that when I die... he will have the keys to life that will help him succeed. (now that sentence just made me cry... I can't imagine not being here for my kids... but reality is that will happen someday. ewwwww....)
Since I so easily get distracted, back to the original subject... I don't wish things were different. I think that God gives these special needs to those He knows can love them without reserve. My son is my son. My son has taught me more about life than any other person ever. I am so very lucky to have him and I feel I am the person I am today though him strengthening me as a woman and as a mother. I can't imagine not having a special needs son. I can't imagine my life without my son.
The one thing that I hope he is able to learn or feel someday is love. He says the words. I love you mom. I love you sis. I love you dad. He says the words but he doesn't understand the devotion behind those words and that is hard for me. He gets a part of it I think. He has always been afraid of his dad or myself dying. That is a deep fear for him. He also is very protective of me and his sisters. If a man stares at me, he will tell them to stop... no boundries there, he will say what he thinks to them and sometimes at the grocery store it hasn't been pretty. If he thinks someone has hurt our feelings, he goes into distress mode... and it all goes to his autism. So I try to supress any sadness or stress around him. You know that love you feel towards your partner, or spouse. I hope for him one day, that he feels that. Not on a ten year old level... but as an adult. I hope he loves and will be loved in that way. The feeling of being cared for and that someone is our number one no matter what. I so want that for him and that is my biggest pill to swallow yet.
Our conversations are short and sweet. I try to drag them out as long as I can so I can just listen to how well he is able to communicate and see if there is improvement. He won't volunteer information, it is something that you have to drag out of him. So per our conversation last night...
Hi Tay, how are you?
Good mom, how are you?
I am good Tay. I can't talk long I am driving right now...
Mom that is against the law.
I am a rebel Taylor, what can I say?
Mom you are not... you will get a ticket...
What did you do today Tay?
Went to a movie.
What did you see... (insert, he said some name of a movie but I don't recall it)
Well what was it about son?
Too complicated for you to understand mom. Will you go to the office with me on Monday to show the ladies all your candle things?
Sure, but make arrangements as I have to sleep on Monday as I work Sunday night this week.
I love you son...
I know you do mom, and I love you too... (I get a tear each time he says that, but he will never know)
I know you do son. Do you have anything you want to say to me or any questions to me?
Only that I love you mom...
I do too Tay... you have the best night... we'll talk tomorrow. I will see you on Sunday but call if you need me before then for anything...
I will mom... love you... bye.
I hang up... and I cry. It is a short cry... but I cry. I love my guy!