Saturday, December 11, 2010


Sorry I have been gone all week. I hurt my back last Saturday and it just got worse over the week. It finally seems to have calmed down yesterday and I am able to sit and type my heart out. I remember when the boys were young and I would get sick, or something would happen, like when I was in my car accident and the boys were totally not able to function on their own. The world did turn upside down. Now of course they are older, can do some laundry, clean the bathrooms (well sort of) and even pop something in the microwave to heat up and eat. (Haven’t gotten to the cooking stages yet, afraid to let either of them near anything with fire.) But the question came to mind what would I have done in the past when I was sick?

Now without a doubt if I was in that bad a shape hubby would have stayed home from work to help out. But how many days can he do that. While the world is wired today and it is easier to work from home, in fact many employers seem to prefer the home-entrenched-self-wired-contract employee (no benefits to pay out); hubby’s job is not one of those. So in the past I have had to hire help.

It wasn’t hard for me to find someone; in fact we had hired a former aide for collegeman over the years to babysit for us once in awhile. The time that I ended up in the hospital needing surgery she was right there and stayed around for months. I couldn’t drive and I couldn’t even function for weeks after the surgery. Did it destroy our budget? You bet it did. Honestly we are still feeling the effects. Well actually we always feel the effects of the financial side of autism. It is that special needs financial roller-coaster that we all happen to live with.

So we hired the aide. OK she is much more than an “aide.” She is a doll of a young woman, who became part of our family and who has now started her own family. I was told the other day that baby #2 is on the way…woohoo. I love babies. The best part of being a part of her family is seeing her child. Her daughter is now 18 months old and she can give you a look that is so her mother you can fall down laughing. You just know that this child is thinking…”You can’t be serious” when she looks at you through the top of her eyes while she wrinkles her forehead. Attitude, attitude, it appears rather early in life…

In truth, I think that we all live with the knowledge that sometimes you have no choice but to say to heck with it (finances) and do what your child needs. Like now, if we didn’t pay for the classroom coaches for collegeman, he couldn’t attend college no matter how brilliant he is. His emotional ability to handle the anxiety he puts on himself is getting better, we heard that from the professors, but he is still in need of support. So we take out the loans and the credit that we need to get done for him what needs to get done. We make Plans A, B and C, think about Plan D and usually implement Plan E. Being flexible really helps. As far as what will happen for HSB we are planning for that too, but we are just going to go straight to Plan F. No need for pretenses since we have jumped through the college hoops already. While they are two different people, the transition issues and the need for the right amount of support remains the same. Yes each person with aspergers or autism is different, but there are across the board issues that you know will surface, its just how intense and in what combination the issues will rear their heads that needs to be parceled out. At least this time, we do know what to expect and we do know what needs to happen, so no being caught flat footed, no real surprises.

Will there ever be retirement? Highly doubtful. When hubby tells me this I try to put a spin on it for him. “We will fix everything when the boys get older, they won’t need as much as they need today,” I say. But he is right; I just don’t want to admit it. Hopefully our finances will straighten out (Honestly doubt that will really happen. It is something I have come to terms with recently.), and we do need to create a special needs trust for the boys. There are trusts outlined in our Wills where life insurance will go when we die, but the reality is that we need to do more than we have done and we know it. Truthfully the life insurance is only good until we reach 70 and I am hoping that we both live a lot longer than that.

I do want to grow really old with hubby. Be that octogenarian couple with brilliant gray hair on the porch watching the sunset and knowing that we lived our lives as best we could and protected our children as best we could. I try to be upbeat and let him know that I understand what it is like for him; the burden that is on his shoulders. He gets so tired. I see it in his face. I see it in how he holds his body. These last few years, economically, have taken a terrible toll on him, as it has done to most everyone I know. You get so tired. Sometimes you just don’t want to get out of bed. But you do. We get up the next morning because if we don’t who will do for these children?

The truth is that one of us has to still stay home with the boys, run them around, run interference with schools, run interference with doctors, etc.  Not that jobs are so easy to get nowadays anyway, so we are still a one-income family. I apply for jobs and positions occasionally. But then something happens with one of the boys and I know that if I had a job I couldn’t be there, I have to stay home. I even applied for a part-time position at a local college teaching writing.  Hubby got upset because he was concerned how would I juggle the boy’s needing my time and being present at the school teaching? It didn’t pay enough to counterbalance having to hire someone to still be there for the boys, so the idea was dropped. (OK they never called anyway so it became a non issue rather quickly.) I honestly don't know how single parents do it. My admiration knows no bounds.

Meanwhile my back does seem to be getting a little better and I have to go dust and finish the laundry. Collegeman is looking forward to doing chores over his six-week vacation to earn some money for games (he doesn’t get an allowance) and I know that I will at least have a live-in maid for several weeks (him). We try to get him to do some chores while he is in school but he doesn’t seem to be able to coordinate the concepts of school and life skills. I know that when we went to school we did our own laundry at least, but he just doesn’t seem to be able to handle it. This is not something where you can say “do it or you have no clothes to wear”; it would make his anxiety worse and not better. However we do need to figure it out how to get him to do it. A schedule perhaps where he has a specific time and day for laundry and chores. Of course we tried that a little this semester, but he always said he had to study, he seemed overwhelmed by the entire idea. Balance, we need to teach him life’s balance so that one day he will coordinate his own life; just another part of the concept of being able to create your own future. So “balance” is something new we are working on and working on and working on and working on….

I suppose we all need balance of some kind. 
We need to balance guilt that we don't make enough money, 
We need to balance guilt that there is so much more out there that we could be giving the boys,
We need to balance the guilt that we don't spend enough time with them, 
We need to balance the guilt that we don't spend enough time with our spouses, 
We need to balance the guilt that we don't spend enough time at work, at play at family, at life..

OK, so once I get myself balanced, maybe I can be better at helping collegeman (and eventually HSB) balance their lives, in the meantime, maybe better balance will help my back too.

Until next time (time for advil),