For some reason tonight I decided to see how long I have been blogging on this site. My first blog here was on September 25, 2009. For four years and two days I have been sharing my families experiences in dealing with autism. WOW! By the time I actually post this it may be four years and three or four days or five… I suppose by now, if you have been a regular reader, that you know my family pretty well.
By posting every two weeks or so I have shared a lot! And, I have made some good relations through this site and the Facebook page. We all have something in common. We all love someone with autism and it is one of the toughest types of love there may be.
It is not tough to love my son. After all, he is my son. I always wanted a little boy. I did not imagine at my age (at the time I became pregnant with him)that I was even able to bear children anymore. Not that it was impossible; after all, I am only 46 and Sir Dantes is six. I just sorta figured that I was done. He was totally unexpected! After his birth I was whisked into surgery to have my tubes tied. During recovery, my husband told me that I looked at him and thanked him for giving me a boy. I believe him. I really, really always wanted a little boy. So, it is not tough at all to be in love with him but he is one of the toughest challenges I have ever had.
Let’s just start with our social relationships. Prior to Sir Dantes’ birth I would say we had a much more active social life. We already had Ms. Maxie and she was about two years old. She is a dream child; so sweet and so good. We never had a problem getting someone to sit with her if we wanted to go out. But once Sir Dantes came around the offers to sit with the babies have become so few. Why? Well, he is a handful and you never know what may happen. I can’t blame the fear of watching him. He’s quite active and sneaky. And, he is determined. However it makes keeping up social relationships tough. How can you really remain close with friends if you don’t get to hang out with them? We invite people out but it is always a maybe as to whether or not they will show. After all, a lot of our evening is spent dealing with Sir Dantes. It’s hard to concentrate on company until we can get him asleep. We do have a some great parties about twice a year and to our friends that show up….thank you! You have no idea what it means to us!
We do have some friends that have autistic children. You know who you are and we know we can always count on you. Autistic parents tend to stick together.
Financially, it has been tough. It hasn’t been the doctor’s appointments or therapies. Luckily, state programs and insurance have covered most of that. It has been that Sir Dantes’ daddy had to give up full-time work to attend those therapies. It has been the cost of Pull Up’s for six and a half years. Basically, it has been my income supporting the family for the past six years. While I make more than double minimum wage having only one income in these hard economic times has been very tough. Now that Sir Dantes is in school his daddy has been able to pick up some gigs here and there but full-time is still out of reach. Day care would eat up the cost and Sir Dantes is better served being home in the care of his daddy. There are still to many places out there that do not allow the flexibility needed to work and care for a special needs child. We are lucky enough to have some family that has been able to help out from time to time when we really needed it but not all families are so lucky. I do have to give a huge thanks to Sir Dantes’ daddy. He can fix about anything!! He’s kept the cars running and the house in fantastic shape due to his abilities and sharp bartering skills. He took three free hot tubs off of Craig’s List and made a fully functioning hot tub which is one of favorite ways to relax on the weekends after the babies are asleep. I love him for all the hard work he does.
But, having an autistic child makes the mommy and daddy’s relationship tough. I find that we spend so much time being parents that we do not spend much time being a “couple”. Taking care of Sir Dantes can wear us out! By the time the evening is done and the babies are asleep we are just worn out. Usually, I could care less about “romance”. I want to try to catch up on the news or get the floor swept. Sometimes I just want to scroll the net and laugh at some funny photo. To have the energy to get up and do it all again, I want to sleep. On Friday nights I try to stay up and relax. This is usually when the petty arguments start due to us both being frustrated and tired. Because it is so difficult to find anyone that wants to sit with the babies for the evening, we rarely have “date” nights. We get about two, maybe three, in a year. So, all the irritation over I.E.P’s, lack of winning the lottery, lack of sociability, and so forth spills out. On the flip side, it gets out! We may replay it over and over but we get to vent. We need that but it ends up being some sort of cycle…we work, we vent, we make up, we play, we work, we vent, we make up, we play, we work,….
It is tough on Ms. Maxie. For quite sometime now she has been asked to do things to help us that she was not ready for, such as “babysitting” while her daddy and I try to do work around the house. She has had to endure her brother’s lashing out when she tries to share and he doesn’t want to. She has had to endure the stares of other people while the “crazy” family tries to do grocery shopping. There are times that her wants and needs have had to be set aside due to some issue that has to be dealt with involving Sir Dantes. That is tough.
Making sure Sir Dantes receives his equal access to an education is tough. This year we are really digging in and holding his teachers and the school staff’s feet to the fire in order to make sure that Sir Dantes can be in the regular classroom more. The list goes on and on about how much tougher it is love someone with autism. Now, Sir Dantes is lashing out at other children at school. But, it is going to be a tough road getting behavioral therapies to help. On and on….
Will it get to be easier to deal with these issues? I don’t know. Frankly, most of the time I am to exhausted with the present to think about the future. I need a nap. Good night. Take care all.