I am a great time waste … I get so sucked up in my head thinking that I rarely write what I am thinking anymore. I end up thinking … what do I have to say that is worth anything? My like is pretty boring and routine, nothing motivating, life changing or special. I have to step back sometimes and remind myself why I began writing in the first place …… because I feared forgetting, or missing the moment or passing thoughts in my life. I remember the first time I started writing for that reason was when I was about 8 years old. My mother had bought me this little backpack that looked like a teddy bear. It hung off my curtain rod and I would lay in bed thinking and staring at it. I use to write on little scraps of paper tidbits about me, or how I hated this or that, and I would fold them into tiny squares and put them in the bears belly. I never had a “diary”, just a bear … I guess I was a strange little girl. I always felt that if someone was to read all of these little passages they would come to truly understand me, but I never allowed anyone to read them and only a few knew of there existence. I kept this up until I moved away from home at 17.
Much later around 1999/2000 I began a journal physical journal, and then in 2001 a on-line journal that I have kept up sporadically, but there was noting like my first.
I can’t find any clear pictures of the bear, but if you look closely at the top of this one you can see the bottom of him in between the Janis Joplin poster and wall hanging/curtain.
I have to say that this conference was a bit of a let down, although not as much as John seem to think.
I guess I should have asked more questions before signing up to see if this was actually the right seminar for us. It was strongly based on ABA principals, which I am not sure I really agree with, the way ABA tends to treat kids reminds you more of training a dog that teaching a child, any child, even an autistic one. That being said how ever I did gain some knowledge about functioning communication. I have also begun to realize choosing the right teaching method for him isn’t as easy as it first seemed. I have been asking a lot about PECS (Picture Exchange Communication System) and did not think that Rowan would respond to sign language ( was thinking of ASL not the modified version SEE Signing exact English) because its too hard to keep his attention and signs too complicated. But this seminar has made me rethink this. PEC seems great, but it has a lot of physical and practical drawbacks. Most of what I have learned is that signing as an aid to vocalization can be more rewarding and easier to implement across the school/home/life continuum. The biggest reason they say that teaching signing fails is teaching the wrong signs first, lack of motivation (IE immediate reinforcement/reward), and lack of consistency through the child’s school/home/life.
I have said all along that I don’t want to “fix” Rowan, he’s not broken, but I do want him to be able to express himself as fully as possible. In someways he is way ahead of where many Autistic kids are, he has lots of words he has said, repeats , and uses in a echolatti fashion. So getting him able to vocalize is not the problem, he uses his vocal cords how and when he wants to, although his sound as not clear and correct in what he is trying to achieve.
The main block with communicating with Rowan is that everything seems sporadic and random. One day he comes to me and says “drink” or “water” or “milk” – I praise him and immediately respond the the request. Another day he will bring me a cup, same response from me except I ask “do you want a drink” and then offer choices. Another day he will just drag me to the fridge and grunt or point. Another day he will just wander the house looking for cups, shaking them and the taking a test sip, and never approach me for what he wants. On the rare days (and theses days use to be everyday) he will just sit down and cry till we figure out what he wants.
I think I will be talking to his teacher & speach pathologist about SEE and PECS, and try to figure out what is the best route for him.
Here I am, writing in this blog again, when I should be writing in this blog. I started out feeling strongly about chronicling Rowans story, and I still feel that way. I blame some of my heel dragging on hating to transcribe my hand written gibberish to clean typed paragraphs, but I know a lot of it is simple mot wanting to analyze of think too deeply about what I did or didn’t see in his early years. I know that Autism is something that is not caused by the parents and all of that, but I still cant seem to get over beating my self up for waiting so long to do something when we had a gut feeling about him long before.
Now I have tried to throw my self into doing something about it, but on one hand I am dragging my feet on getting a “medical diagnosis” (which I can give a variety of reasons for), but on the other hand I feel like a hypocrite with out having it because then there is still some slim chance that we, and the school, and ECI, and his OTs are all wrong and he is just a late bloomer. But I know that’s not true and I have accepted all of this, most of the time. Then I sit on the fence of “curing autism” and all that tripe about “combating autism” and I ask myself what does it mean, what are they really trying to do? What am I trying to do, what is it that i hope for, hope to achieve?
What it boils down to ..( I love that expression – just extract all that is important and reduce the excess to vapors) is that I want Rowan happy. I want to know him who he is and I want him to be able to express what he wants and why. I want him to be able to move through life with out additional burden to being bothered or frightened by everyday things and activities. I want him be able to thrive and pursue what ever it is that strikes him as important. Do I want him to be “normal”, no absolutely not, but then I never felt normal and I don’t consider being normal a very worthwhile pursuit.
I have always been struck by the unusual and extraordinary, I suppose many people are. So why would I want to reduce him to a foul mouthed, video game toting stereo type? I’m rambling again with no real purpose. I guess I will go write and see where it takes me today.
I really should be sleeping, but I find that when Johns not home I don’t do much sleeping.
I am thinking more and more about quiting smoking. I had a pack with 4 cigarettes in it at 7 pm and ran out by 11pm. I put off going to the store until about 20 minutes ago, and I was going crazy with cravings. It seems so ridiculous to know all we know about smoking and still do it, but then again it truly is an addiction. Aidan keeps coming to me saying today is No smoking day, or tomorrow Mommy, no smoking. I think my grandma is putting him up to it, but still they are right, I need to quit. I have already decided that if I am ever going to have another child I will quit before we try to conceive. John has been hinting pretty heavily that he wants to here in the next year or so. Me, I am mixed – I want another baby, but there is so much that goes into it besides the desire. OI am thinking about financial readiness, time. The boys already consume most of my time when I am not working, how would make enough time for them ( especially to work with Rowan) if I had a newborn?
At any rate, I still need to quit. I’m thinking of seeing a doctor to discuss option for quiting. I have a brother-in-law who quit recently using a combination of the patch and a nicotine inhaler. I’m not so sure about the patch – I have a bad track record with patches, bad allergic reaction, but the nicotine inhaler might help.
In other new I just found out today I am going to be made an Auntie again! My lil’ sis Lee just found out shes pregnant – probably about a month along. I hope its a girl!!!
My big project right now is helping to organize a Autism Awareness Information Fair with BACH Parents Of Autistic Children Support Group. What we hope to do is get the community out, especially teachers, doctor and law enforcement to inform them what it is like to Autistic. We want them to know about the early warning sign, treatment support option, etc. Lately in the news there has been an upsurge of news specials on Autism, but in my humble opinion they seem to regurgitate the same old information and perpetuate the stereotypes, rater than put out much needed new information.
People need to know how to find an advocate to help in dealing with ARDs and IEPs, they need to know about sensory integration, PEC, floor-time. They need to know to really important things like the warning signs. Society and doctors needs to quit telling parents who bring up a concern in their lightning round – 3 minute well-child visits, that their kids are just late bloomers, don’t be a hypochondriac, oh he/she will out grow it.
I can speak for anyone but myself, but when I get really honest with myself, I knew way back when Rowan was a little baby no more than 6 months old that their was something different with him. I was too afraid of being panicky mother to admit it, and I knew nothing about Autism. I rationalized away the things I saw until he was 2 1/2 and I had begun to get defensive when people asked me about Rowan and his differences. I didn’t have answers, and they ones I came up with where no longer sufficient to explain it. What really burns me up was that the people who questioned me, where the same people who behind my back said “Oh I thought all along he was Autistic”. They didn’t tell me because they were afraid I would get mad.
f there is any one piece of advice I could give people it would be this – If you have any suspicions of something being wrong in the development of your child – or any child you know – seek help, don’t let the fear of making someone mad or offended, or taking up too much time from your doctor stop you. The sooner you know the better you can help the child. It might be nothing, or it might be serious, but wouldn’t you rather know you have done the best and all you could do to make sure that he/she is getting everything needed to help them grow up happy and healthy. If you thought your child had cancer you wouldn’t wait, would you? Well, Autism isn’t an illness or life threatening and its not “curable”, it more of a very special way of being, but along with it is a host of other issues that can be treated and helped, and the sooner the better.
In one of my more brilliant moments this week I had my cell phone stolen and only just realized it tonight. I though I had just misplaced it around the house and had the battery die on me, but in a last ditch effort to find it I called it only to discovered a very unfamiliar male voice on the other end. So needless to say I will be unavailable phone-wise until I can get it replaced. I should retain the same number, however …. I now have no ones phone number. If you see this please respond back with your number so I can reprogram you into my phone. I have comments screened so no one else will see your number or you can just private message me.
September 15th 2001 I made what, even to this day 5 years later, was the hardest decision of my life. Four days after the world trade center attack, when the entire nation was still in shock, and everyone ( I believe) was beginning to reevaluate what was important in their life, I made the decision to leave my husband of 3 1/2 years. I feel tonight as though I must write about it and not let this date go unmarked. September 11th, I’m sorry to say, changed my life for the better, although I feel an overwhelming sadness in thinking that so many suffered and died, it woke us all up. As it was that night, tonight I sit typing late into the night unable to sleep, but thankful for different reasons. Tonight is the night I have to say once again, John I love you and thank you for taking me as I am and loving me in return, and for giving me more than I ever knew I needed in the form of two energetic boys.
I also want to send this thought out into space … Casey, wherever you are, what ever you are doing now, I still love you for all the things that made you, you. I want you to have happiness and family, health and real lasting love. I cannot hear Depech Mode, Front 242, or Information Society without thinking of you. I wonder often how you are doing, if you are happy, and if you have forgiven me for hurting you. I hope you know now, and understand that it was not something I wanted to do, to hurt you. I told you then, that one day you would understand, I hope that this is true. I hope you can think of me fondly, as I do of you now. We had many issues of which I will not speak, but most had more to do with youth and incompatibility and outside expectations. You were a good friend and a good man, I hope you still are.
I should be sleeping, but I just got Rowan back in bed. He had a night terror, you know the ones like nightmares except they don’t wake up from them. I hate those because its hard to soothe when they really aren’t even with you, and if you try to truly wake him, it makes it worst. Sometime because his eyes might be open you might think he’s are awake and just scared, but he’s not. He cries and cough that scared crying hiccupy cough, and I’ll think that he just has a dry throat, but then I get him water and he doesn’t see it, pushes it away, doesn’t want it. So I hold him, he struggles at first, but soon he settles down and we rock. 5-10 minutes later he’s relaxed under my cheek his breathing is calm and normal again, and I am left just thinking.
John has blogged a little about our realization of the uniqueness of Rowan, I have so much to say but I always seem to put it off to another day, sometimes today seems hard enough with out adding to it. Yester day (Tuesday) was our first “session”, I guess you’d call it, with Ms.D the child development therapist from ECI. Our session are 45 minutes a week, 4 times a month, which is the max the program will allow. I don’t know if we are getting the max because they think he really needs it, or because we only have 6 months before he graduates out. Either way I’m glad and appreciate the time we will get. From the first time he met D he warmed up to her. He does that with a select few people, so I am glad she was chosen for us. Already I am learning to see so much I guess I was blind to before. All these signs that things were not “normal” that I had just attributed to personality. He had sensory issues that had I know what I was looking at I might have seen even as an infant. I feel so fucking stupid to have missed it and I just keep replaying all the things that caught me as odd when he was a baby and realizing I should have brought it up to his doctor. I just didn’t know, and I thought, well different child different likes & dislikes. The stimming is a sign that he is overwhelmed, scared or frustrated. How could I not see that? I just thought he was being a goofy kid, examining his hands, jumping around. Sure he was different, but I didn’t see that he was needing something. My brave little man, so self reliant. I just want to come home one day and have him tell me “Mommy I love you, hold me” or even just “pick me up”
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I'm looking for a good indoor home for two sweet fat friendly cats. They are very affectionate, and mostly like to cuddle and sleep. We really want to keep them together because they have never been separated since they were a couple of months old. They are both neutered males, with stubby tails (born that way) but they are unrelated. Sebastian is a golden/orange tabby, and Smokey is … you guessed it gray (silver – what ever). They are about 6 years old, in good healthy with all their shots. Smokey likes to go outside sometimes, but won't go more than a couple of yards from the house, and Sebastian has no desire to leave the air conditioning. My sister has raised them but is not unable to keep them with her current living situation, and I am way too allergic to live with a cat. If we can't find some one soon we may have to give them to a shelter. We have a couple of weeks to make arrangements, so contact me if you are interested. If you want pictures I can get them.
Its late and I’m tired. Roro’s got be worried lately, but I’m trying very hard not to be overprotective or paranoid. We are looking into getting him tested for pdd. It is a series of developmental disorders that include autism. I guess I’ll include a more detailed update later.
I love my sons, as different as they are, each one is unique & special. Its hard to describe how they have each touched and enriched my life in different ways. We know since Rowan was a young infant that he was .. well different. He is exceptionally bright, but different in a lot of ways from his brother. If you read back through my blogs in the last two years you’ll see this has been a recurring topic. As different as they are I never really thought anything was wrong, except at one point I thought maybe he had a hearing problem. You see I would call his name over & over and he wouldn’t respond. I would tell him simple things and he wouldn’t respond. No was never in his vocabulary, and that is usually one of they first few word a kid says and repeats, but not Rowan. I’d clap behind him and he wouldn’t flinch. Yet he loves music and if he is in his room and his favorite show “Jack’s Big Music Show” comes on in the living room he will come running. He can hear a bag of chips or a piece of candy being opened behind a closed door. So how can he have a hearing problem, right? We called it being stubborn, focused, single minded, ect. We laughed about it. Rowan is 2 1/2, he counts backwards & forwards, can spell & write his first name, but he won’t play with other children. He won’t communicate he wants a drink, or that he is wet or hungry. It is only in the last month that he has begun to hold eye contact with us, give any kind of consistent affection or acknowledgement and greet me & John when we arrive home from work and still shows no real distress when we leave. Some times I feel and think I am exaggerating our situation. But I cant deny the many times other people, strangers and family, that have asked me about him. Why doesn’t he play with others ect? We called it independent, we called him a loner, but while he may be a lot of those thing, I can’t deny its become apparent something is wrong.
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