I haven’t posted for a while. I’m deciding if I will continue the blog or not. When things are going well it is easy to write with a song in the heart and a dance in the step. When the going gets tough then it becomes a different story. There are things going on that I cannot share with anyone and it is difficult to write or speak only part of the truth, or what is happening. Sometimes the burden is overwhelming and it threatens to crush the spirit.
I can share one or two items I suppose. I hesitate many times to write of the more challenging days; the days when Asperger’s Syndrome takes over our life….when it is a grey day both inside and outside of this home as we struggle on. For all the laughter and joy I share on this blog there are still so very, very many moments when we are getting through our days second by second.
The Friday before xmas I got a very strange phone call from Son while I was at work. He called back a short time later and told me he had just tried to kill himself. Imagine the panic, if you will. When I arrived home; in very short order, Son was in one of his very overwhelming conditions. It went on long enough that I was wondering if we would have to call the police or an ambulance, to help calm him down. I didn’t want to because I knew they would take him away and I couldn’t bear that. I couldn’t bear either, the screaming, crying, throwing things…. the hysteria, the breakdown…him telling us that we would be better off if he was dead. All of our difficulties are because of him. No one likes him, he hasn’t any friends, the world is just too hard for him. HOw he is so very lonely. It’s enough to break your heart, folks. Not like it hasn’t been broken so very many times over the years; in this journey with him through the maze of a so-called “different” diagnosis.
He was out there enough that I had someone else take our daughter for the weekend. I always worry about her safety and then her sanity being exposed to prolonged periods of time when Son gets like this. Only he has never attempted suicide before. They were quasi-attempts; more like cries for help, I think. Given him clumsiness however, it could have turned tragic so very easily. So there we were, just before xmas and we thought everything was going quite well. Well *poof* didn’t the balloon burst right down on us. It wasn’t the greatest weekend.
There is no escaping a disability. It doesn’t go away. Ever. Even when you don’t think about it, it is there, creeping about and popping up at the most unexpected moments. It is a constant thing….every moment of time it ticks on and it becomes a centre and demanding voice whenever it chooses. The differences between your life and those of others around you become painfully clear and obvious when people gather for celebration. I don’t bounce back like I used to. I don’t cover things up and act like nothing is happening anymore. All of my reserves are used up. It has been close to 16 years of this and drip, drip, drip it steals your spirit away from you. Because it.never.takes.a.break. Ever.
It is becoming clear to husband and I that Son will not be managing on his own….probably not ever. A psychiatrist pointed this out to me when we were still in Alberta. His specialty is special needs kids and he had plenty of experience with them. It was the first time that future for Son had been verbally expressed to me. Nothing like a dose of reality to bring you back to a sobering look at the future! Well, over the past year Husband and I have been able to talk about the future and we are realizing that Son will probably be with us. Always. Forever.
While Son is maturing in some ways, he is not in so many others. I see it when he walks. When he moves or when he talks. It is like there is a 7 year old boy stuck inside that very big 16 year old body. When it overwhelms him; just everything, that’s when he falls apart and explodes like he did that Friday before xmas. It was devestating to us all.
So Christmas came upon us. My spirit just couldn’t take anything grand or lively this year. Even though Son, for the very first time in YEARS slept from 11pm to 6am…. what a miracle!!… there was just nothing left for me. I wanted peace and quiet. I didn’t want to see all the normal families. I hated having people gather and celebrate the “traditions” and “blessed events” of getting together. I keenly felt the unfairness that life deals us and I resented it and I resented them. It is hard to get things off my chest without hurting those I love. I know some of those people may read this blog and I wish this was anonymous. I want to share the bad and the ugly but for those out there who need to know they are not alone. For others in a similiar situation and don’t realize that we are a whole community.
I do my best to see the positive in life. Sometimes I don’t have the energy for it and I don’t care anymore. My Son’s happiness and frame of mind matters. His despair matters. His effect on our lives, our marriage, our other child….it’s not pretty a lot of the time and that’s the truth of it. I go through periods of time where I do not want to hear about the great get-togethers of others; their parties, their social outings….the things that “normal” people do. Son is quite disruptive if we have company. You see the people around you out there enjoying life, having some kind of normalcy. And I feel bitter. Not all the time. Just when another wave of despair hits, just for that little while.
I used to be very social. Outgoing, involved in everything. I liked to be on the go, visiting people and doing things. That is not my life anymore and really, it can’t be. Not if I want Son to have a quality of life. I am HIS life. Since he does not have a social life nor any friends it is me, then his father, who fulfill everything for him. Whether or not we want to be. Whether or not we do. If we choose to try to do some life events without him, then we affect his life as well as ours. If we choose to do things with him, then other stuff goes out the window. Every once in a while you see what you’ve had to give up….yet it never seems like the sacrifices are enough. Then you see your future and it is no longer the one you thought you had.
We have been struggling with Son and school this fall. I’ve spent countless hours on homework with him and so has his father. We divided up the subjects because neither of us has the stamina nor patience to attempt more than one or two subjects by ourselves. This is a kid who fights tooth and nail at the THOUGHT of homework. He cries, yells, fidgets, makes strange noises…you name it. Usually for anywhere from 20 minutes to an hour….on a GOOD day; before we can settle and get to any homework at all. Then anything at all sets him off. A simple 15 minute exercise easily turns into an hour or two ~ and everyone’s hair is on end by the time we quit. I hate it.
I gave up my education for the kids. I withdrew from University when they were in grade 3 or so, when it was evident they were both struggling that year and I didn’t have the time to devote to them while taking University classes. So I withdrew and gave up my chance for a degree that I was working towards at the time. I didn’t mind. It was my choice and I gave it freely. I did NOT expect to be struggling with someone who HATES every freakin’ second of ANY homework….day after day, year after year. It wears you out. It kills your patience. It pits parent against parent. Oh, and causes a lot of indigestion as well. Bad for the appetite! And for what, I wonder?
So. I burned out. I well and truly burned out this fall. The teachers sang Son’s praises about his pretty decent marks and all. I informed them that those freakin’ marks were OURS more than his. I spent hours and hours and HOURS on English with Son. After all that, he went into his Semester final exam today with a 63% average. English is my strongest subject. I used to love it. I hate it now. I despise everything about it when I get it from Son’s textbook. It becomes a battle. Learning is a battle. Teaching is a battle. It sucks the life right out of a person. Son was in a course that turned out to be way, WAY over his head. Hubby and I battled with Son; we tried different strategies, suggestions…ideas…once in a while there would be a good day. Not many though. My life was work, homework. Work, homework. Not much fun at all. No time to relax and read a book; go out anywhere. Spend time with daughter or hubby. So I contacted the school and requested for the second semester of school that Son be put in courses that HE CAN DO because I am not helping him anymore. How is it help when it is a battle? Hours of screaming matches, resentment, exhaustion? If he does not want to learn then nothing we do will change that. Why are we burning out trying to teach him when he will.not.learn. I refuse to give him “easy” marks anymore. Failing a class or two might actually be a good thing for him.
Son is a slow learner. The paces of some of these courses are too fast for him and he can’t keep up. He can learn all right, but at a slow and steady pace. So he has been moved to the slower classes. If he graduates or finishes school in the lower stream English programme…who FREAKIN’ CARES??? He is never going to write essays for a living! he is probably never going to write a letter for crying out loud! He is reading at a grade 4 level. Yet, these “classic” novels are being thrown at him with the full understanding that he will read them, absorb important lessons….well, guess who is actually doing that? Why not give him a book HE CAN READ and figure out on his own? What the hell did those psychological tests tell you anyway? I read the reports and he is true to the results….how is it the rest of the world seems to have missed what they reveal? They show HOW TO TEACH HIM! HOW HE LEARNS!! HIS PACE OF LEARNING!!! It is not that he cannot learn ~ he just learns a different way and at a different pace! If he repeats a class or two, it may be just the pace he needs to learn some important material. But noooooooooo ~ here you are a failure if you repeat a course or heaven’s to bitsy…a grade! What if the person truly needs it? Needs that extra time?
They don’t get it. Anyway, I’ve been rambling on a lot here. I’ve thought about composing an essay about the frustrations of mothering & living in a situation like ours. it would be neat, funny, easy to read. Well, I don’t feel like it today. Today I feel like being crabby and nasty. I don’t want to see some normal type family or even hear about it. We are adjusting again; grieving the loss of some things and trying to pull ourselves together enough to carry on. This weighs heavily on a parent and over the years, it chips away at your good humour. Your optimism and happy-go-luckiness. Sometimes it kicks you when you are already down and it takes months to climb back out. So sometimes, like now, it is just a matter of existing and finding your way. One day at a time.
So I’m here. I just don’t always want to reach out because you don’t want to hear what I have to say. And boy, do I want to say some things! I don’t believe in God anymore; it was a journey that I took, just as the journey to “find” God took me different places. Life isn’t fair and it just plain ol’ sucks when you get your face rubbed in it on a daily basis. If I did believe in God then I would scream at him. I wouldn’t believe he didn’t give more than we can bear. This load we bear is crippling some days. My rock that I’ve leaned on is cracking. What happens when we all crack over here? These things happen because of genetics and the roll of the genetic dice. There’s no God in this mix. There is no fix here. Nor is there a happy ending. There is existence. Of us, as parents, now worrying about what kind of life our Son is going to have. Who will look after him if something happens to us? Will we be able to settle him in a home? Will I be expected to come home straight after work and prepare supper forthe rest of my adult life? I won’t have friends or a life of my own because he will need me to the day one of us dies?
Sobering food for thought.