Tuesday, May 19, 2009

So Long Sister...

My son has this whole other life that I don't know much about. Sometimes I feel like he just lives with us. Is that weird to say? I love him fiercely, but I wish I could get inside his head and really know what goes on in there. I would also love to be able to follow him to school un noticed by anyone and see what he is like without me.

A few weeks ago we were on a play date, one of the only play dates we had all year. It was with a girl in his class. My son tends to gravitate to the girls. They give him structure, which is a nice way of saying that they boss him around. So we were at this girl's house and her mom says to me, 'You have other children, right?'. To which I replied, 'no, he is it'. She looked confused. She said that she thought that I had two older kids which didn't live with me, from another marriage.

Why would she think that? Hmmm. Maybe it's because my son told her daughter that he had two older sisters that did not live with him. I had not heard him tell me this before, but I did know who he was referring to. There is a girl across the street, Ava who is seven, and a girl next door, Alyssa who is eleven. They would occasionally play with bubs, and we had a snow day a few months back in which they all frolicked and made snow angels in my yard. It must have had some impact on my guy. He would talk about Alyssa all the time, he said he loved her, that she was beautiful, and on and on. While I thought it was cute, I also thought he was perseverating a bit and of course it had my autism radar on overdrive. He would make her pictures, and ask to play with her all the time. I don't think she knew the impact she had on bubs.

The other day Ava was playing with bubs in the park. He asked her if they could go and get Alyssa. Ava informed us ever so bluntly that Alyssa moved away to Georgia. Talk about no closure, I didn't even know she was planning on moving, let alone packed up and gone. Bubs was devastated. He wanted to know if she was coming back. I tried not to make too much of a big deal about it, but he was still talking about it last night. Poor guy.

He still plays with Ava. I think she secretly hates us though. She doesn't have the bestest of home life, and it must seem like a big par-tay here. Endless spaghetti o's and chocolate chip cookies here, tv on all the time, trampoline, toys and such, all with a mom to cater to every one's every need. Yep, that' s me all right. There really aren't that many kids on the block for my son to play with. I think Ava feels the same way, so she kind of tolerates us. It's probably not the healthiest of friendships, but it will have to do for now.

Saturday, May 16, 2009

A twist of lyme.


This has been a crappy week. Literally. On Tuesday morning, the school nurse called and told me my bubs was vomiting. I had sent him off skipping and happy that day and an hour later, all hell had broken loose. I ran to school as fast as I could and retrieved my sick boy. They sent us home with a giant garbage pail, which would later prove to be indispensable.
Usually with the pukes, you have an intense 24 hour period of hell, to be followed by the calm after the storm. This particular bug offered us no such reprieve, although it wasn't quite as intense. What it lacked in intensity, it more than made up for with endurance. This was an endless week, filled with bleach, lots of laundry, more body fluids than I care to discuss and lots of TV.
Bubs was not his usual perky self, but I must say that he was an excellent sick person. He made sure to vomit in the said school garbage pail or toilet every single time. I was very proud of his aim. When the big D hit us, he wasn't as precise. I can forgive him though.
I was very happy when Friday finally rolled around and we didn't wake up at five a.m. to vomit, as all the previous days before us. It seemed like this dark cloud of funk that descended upon us was going to lift.
Little did I know what excitement lay around the corner for us.
My husband took bubs to visit his uncle last night. My husband's uncle, although that isn't really relevant to the story. Bubs loves it there, they have woods and a lake. My husband got a huge net with which to catch fish. Bubs had a great time, he called to tell me he caught four fish with his net, and his bread. He was so proud. I was so happy he was having a great time, and out of the house.
When my husband came home with him later that night, bubs was out cold. So we put him to bed. H told me that bubs got a splinter in his thumb but he didn't get a chance to get it out. I said that we should give him a tub in the morning and maybe the soaking in the water would dislodge it without us having to go through the hell of attempting to tweeze it out. My son is kind of crazy with any kind of 'removing' of things from his body. Thank God his toenails don't grow very much. I think it warrants it's own post, and I remember writing about my son wanting the 'potatoes' I cleaned out of his ears back .
Anyhoo, this morning, my H was giving bubs the bath. I hear him say 'Oh NO'. That is never a good sign. Never.
I ask of course, 'what is the matter' and then I hear screaming from my son. My H informs me that he has found a tick on my son's head. From now on, in my world, the word 'tick' will illicit a response that requires an immediate ingestion of xanax.
At that point, you have three hysterical people. All screaming at once. My H instructs me to call up his uncle and find out about tick removal. It must be said, that at 42, I am not an outdoor type of person. I have never come in contact with a tick, I have never had the opportunity to come in contact with a tick. In my husband's family, they are all well versed in all aspects of 'tickology'. H's sister also called at the same time. She said to smother it with Vaseline. H's uncle said not to do that, it would take too long for it to die. It would have to be removed with a tweezers.
I sterilized the tweezer and then stabilized my poor screaming son's head. This took longer than you could imagine. More screaming, from all of us. Naked wet son is out of the tub now. My H managed to extract the evil tick from my son's scalp. It looked like we got the whole thing. Apparently one must grab the head, or the 'snout' as my H called it. Ewwwwwww.
We then had to check my poor child for more. He was terrified at this point, and it was probably due to the behavior that my H and I exhibited, more than anything. We washed his hair again and combed it. The stupid tick was still alive. My H grabbed an empty diet coke bottle from the recycling bin and put it in there.

Once the semblance of order was restored I took bubs and the coke bottle with the little terrorist (who was now dead and floating in a solution of rubbing alcohol)to the pediatrician. We told him the doctor needed to see the tick and check him out. My son announced to the nurse when she called his name 'I am not here to see the doctor, the tick is going to see the doctor'. Of course, only I knew what the hell he was talking about.

The tick is being sent out to a lab. The doctor is pretty sure it's just a dog tick and we should all survive. Now I can go back to just worrying about swine flu.

Tuesday, May 5, 2009

It's not easy being me...

Back when I was single and I had time to read self help books, I remember reading one that oprah recommended called 'Simple Abundance'. I liked it, and I often wonder what I was so miserable about in my thirties that I felt the need to improve upon myself. Hey, at least I am 'co dependent no more', how many people can actually say that.
I don't remember much about that book except for the concept of a gratitude journal. The idea is to list five things that you were thankful for in a little journal at the end of the day. I found it really helpful when I needed to keep my young ,single ,much smaller dress size ,chin up. I think I need to start doing it again. I am not really seeing the forest for the trees these days.

This school situation has really got me down. We had annuals last week and while we decided not to keep bubs back in kindergarten, I am not entirely thrilled with the overall outcome. I just got a very dismal speech eval home today. I guess I spent the last three years of bubs' life on high alert. It was a constant state of involvement, of information, of keeping me in the loop. While I didn't have a whole lot of control, I felt like I did. That is important to me. The illusion of control can serve in a pinch when the actual control is not available.
I don't like getting these bombs sporadically and when I least expect it. This latest eval included some kind of observational report that the teacher fills out. It's a 'sometimes, often, always' kind of thing. Apparently my son 'always' has trouble asking questions, understanding questions, asking for help, answering questions, forming sentences, yada yada ad infinitum'. Seriously, my son has never answered a question all year? He has never formed a meaningful sentence all year? Maybe he is saving them all up for when he gets home, because honestly my child makes his points known and if you don't acknowledge that you have heard and understood, he will keep asking.
She also said my son 'always has trouble asking for help'. I just cannot imagine what happens after I put my son on the bus in the morning. Does the bus driver pass through some magic force field where in my son loses all ability to speak? Does he slip into a vegetative coma, only to return upon safe delivery at my door? It's a very interesting phenomenon.
And another thing, while I am ranting. Why, oh why am I just finding out about this situation? It's May for God's sake. May. If I were the teacher, I would be embarrassed to send that home. I always felt, even as a humble art teacher that a child's success hinged on me being able to teach them. If they failed, then I failed.
I have been a nice mom this year, I have been non confrontational, almost self depreciating and very very understanding. I am leaving that persona in the dust. I am now the terminator. I am now kicking butt and taking names. I don't know what I am going to do or ask for, but the tide has changed.

Oh yeah, back to gratitude. I have many many things to be thankful for.
I am thankful that I have my wild child boy who never stops talking and always makes his point known to me. I am thankful he asks me for help and saves up all of his meaningful stories for me.
I am thankful that my husband loves me. He might not always understand the inner workings of my tormented mind, but he accepts me for who I am. He is a good egg.
I am thankful that I have my house, we have food in the cabinets, and we have our health. We are a lucky little family
I am thankful for all the amazing people that this journey has sent our way. I wouldn't wish the stress and worry that autism has caused us, but there have been many gifts that I wouldn't have received without it.
Little things are big things.

I am all over the place here. I know.

Friday, April 17, 2009

April is Autism Awareness Month.

Ok, I am going to be whiny and self indulgent right now. I have been holding it in and it just needs to come out. I am sorry in advance.
I am tired of autism. I wish it would go away, I thought it was going away, but it's not. It lurks in the corners and pops out for a sucker punch when I least expect it. But again, it's my own dumb fault for not even seeing you there in the first place. Where the hell else would you be?
It's a lesson I need to learn over and over and over again. I think I am accepting of you, but I am not. I am pretending you are not there. That is not accepting.
It sucks. I hate this process. I hate what I am doing to myself. I hate that I feel this way.

Sometimes I feel like my son is an alien to me. I feel like I am a crappy mother because of that. He is struggling in school, but I can't get a clear picture of what is making it hard, where is the problem? I want to fix it, but I am not sure I can. Why is he so angry? Is it a reflection of my anger? Why am I so angry? We don't have it that bad at all. I know this to be true, yet I am still complaining.

I used to think he was flying under the radar. I used to think we were 'fooling people'. You know, who do we really need to fool anymore? Does it matter? Can't you just be who you are? These are the questions I am asking myself right now. Does it involve telling everyone you know that your child is 'on the spectrum'? Is it really anyone and every one's business? Does it make things any easier? Or more complicated because then your son becomes a subset of behaviors, generalizations and stereotypes. Instead of five year old boy. I just want him to be who he is, but with out all the difficulty. I cannot figure out h0w to extract all of that.

Yea, I sound crazy right now. It's report card time, and annual review. I am really torn about what to do. So, this crazy ranting right now, I just have to do it.

Tuesday, April 14, 2009

Task Avoidance

I am so very tired of stressing about bubs and school. It sucks and if I start in with the worrying, it just spirals out of control and it robs me of any grace that I might have left. SO I am not going to write about that today.
My husband and I are very opposite in many ways. I think in the big deal kind of things we are very similar, but as far as what constitutes a 'fun day' we are polar opposites. We are trying to meet somewhere in the middle as far as that goes. I think the problem with me is that I really don't have any idea of what exactly is fun to me.
We were talking about our 'bucket lists' and we actually found something that we both wanted to do! I had mentioned that I would love to get an old airstream trailer and pimp it out cozy style. I thought it would be such a cool way to travel. Now it must be said that the word 'camping' makes me itch and I will probably never experience sleeping in a tent under the stars (not unless I am forced to at gunpoint), but the idea of traversing this great big country in a cool little aluminum pod complete with it's own bathroom, and stocked with snacks and books, and other comforts of home, kind of appeals to me.
My husband loves adventure and to travel and see and do new things. I feel bad for him that he is married to me because just thinking of any of those things makes me want a pharmaceutical. But again, I am trying. So he was very happy to hear that I wanted one of these cute little things. I was happy he was happy.
We talk about it and haven't quite yet bogged down our happy thoughts with logistics. We are making a big trip this summer so all of our funds right now are earmarked for that. We had planned to renovate our tiny minuscule tiny impractical, can you say 8"of counter space, kitchen next summer. It really needs to be done, I guess. But I was thinking about our little dream and how cool it would be to give bubs that experience. I was also wondering how much longer we would have him as a captive audience before he wouldn't ever want to travel cross country in a little pod with his mother and father. My husband was thinking the same thing. So we think we are going to scrap the kitchen plans for now and put our quarters in the jar with a picture of an airstream trailer on it.
It's nice to have dreams. It's nice to think about something fun.

Friday, April 10, 2009

Sick day

Is it possible to worry yourself sick, literally? Because I think I have done it. Monday night I took bubs to the premiere germ pit of the century, the mickey d's play yard. I really have to stop going there, for more than one reason.
I have been stressing big time about the upcoming annual review meeting scheduled for April 27th. I am no closer to deciding bubs' placement than I was two weeks ago, only this time, I have a killer headache, body aches, a stuffy nose and a gravelly nasty cough. I remember one time in college, I do believe I came down with a raging case of chicken pox due to some major issues with procrastination and an upcoming winter break. It was new year's eve that I discovered the first spot, and let me tell you, it was an absolute mess by new years day. I had chicken pox in places you couldn't believe.
So yesterday,I dragged myself to the doctor thinking at the very least they would give me an x ray and some antibiotics, possibly a trip to the hospital for an oxygen treatment and an iv drip. No? I am a recovering hypochondriac as well. Imagine my complete utter shock when she told me it looked like a rhino virus and she told me to take some claritin d. Are you kidding me? That's up there with the normal thyroid test results I got two years ago.
It couldn't have happened at a worse time, although it's never a good time to get sick. Bubs is off from school this week. He is ok for the most part keeping himself busy, but it involves spending the day in his underwear (which are on backwards at the moment), watching videos that are suitable for three year olds (Barney Halloween anyone?) and eating massive quantities of carbohydrates, although I don't think popcorn for breakfast is so horrible. I feel bad, but sometimes the circus passes through your town without you seeing it, you know? I guess it's not the worst thing in the world if my son's day doesn't consist of a parade extravaganza of constant amusement.
My wonderful husband (and I am not being sarcastic this time!) stayed home from work yesterday so that I could go to the doctor and rest. He occupied bubs the entire day, and spent some much needed quality time with him. They even came home with flowers and a scratch off lottery ticket for me. I felt loved, that was nice.

In an effort not to let my blog fall by the wayside, I am making an effort to write as much as possible. Sorry for the rambling, it might be the remnants of last nights nyquil.

Monday, April 6, 2009

Uncovering some truths...

I think I have been resistant to writing lately because I didn't want to think about things. I think I indulged myself a wee bit too much in the rivers of denial. I tend to obsess about things, it's unhealthy, but I also think not thinking about things is not too great either. I have been making up for lost time, thinking overtime. Stressing overtime, eating too much, not exercising, not taking care of things- I am making a concerted effort to dig myself out of this hole.

We have bubs' annual in a few weeks. Some tough choices need to be made concerning his placement next year. He has made tremendous growth socially, which is just the best thing ever as far as I am concerned. Academically is a whole other ballgame. He is really inconsistent when it comes to being able to focus and attend. I hate to sound annoying but I am not impressed with his teachers when it comes to dealing with his behaviors. They seem to be putting an awful lot of the responsibility on my son. Granted it is inclusion, but he has a freakin i.e.p. I hesitate to go down this road, me being a teacher and all. It sounds all very 'blamey' and I don't want to be that way. I have begged for a functional behavioral assessment, but they have told me (they being the teacher, the psychologist and the ever illusive autism consultant) feel that he is so inconsistent in his behaviors that it's something internal not external. I have come to realize that this is what it's going to be like in district. I need to accept that a team of people are not going to closely watch every move my son makes and record it on a clipboard and then review it at a team meeting.

I have talked to so many people, gotten really great advice and guidance, but it doesn't change much. We have to figure out where bubs will do best next year. My crystal ball is broken, but the thing never worked all that well anyway.

We have two choices. One is to have him repeat kindergarten, with the inclusion class. The other is to send him to the first grade inclusion class. He is not really doing all that great academically. His teachers feel it's an immaturity issue and he hasn't had enough time to function as an independent learner. I agree with that, I do. But I am not sure what the hell they have been doing with him all along. I don't get enough info and while I understand, at the same time I am having a hard time wrapping my head around it. So retention might help. It also might not. Especially if the teachers aren't going to change anything about what they are doing. I always felt as a teacher that if a child wasn't learning, then I was doing something wrong. I am not getting that philosophy from these teachers.

The second choice, to send him up to first grade doesn't really jazz me all that much either. I don't know if bubs will be able to handle the increasing academic demands, especially with less than stellar support in place. I am worried he won't want to go to school and he'll feel bad about himself. Right now he seems to enjoy it. But I am sad that he won't be able to follow the friends he has made and I wonder what he will think of the fact that he stayed in kindergarten. He might not give a crap, it could be all me. I don't want to discuss it with him yet.

So there is my dilemma. I am really trying to go over the pros and cons of it. I keep hoping the answer will knock on my door and show it self to me. I have been letting this be the only thing I will allow myself to think about. I need to start thinking about other things. Like my health, my bills and maybe a little fun with the family.

You know, in the big picture, this is small potatoes. I know it. My son is happy, he can talk, he has friends, we have a great quality of life. The school stuff, it will be ok. I know it. It's this lack of control that really is getting me.






Friday, April 3, 2009

What I am reading



When I used to teach high school back in the day, there were always a few select kids who were manga fanatics. I never understood the appeal, although I didn't look down on it as an art form. I personally found it bizarre and highly stylized. It was often difficult to get said students to draw anything other than these cartoon drawings with gigantic eyes.

Flash forward a some fifteen years later, and I find myself actually reading something manga, and being very moved by it. Of course it's probably the subject matter, which is autism, which draws me to it.

With the Light by Keiko Tobe is a series of graphic novels about raising a child with autism. It is a first hand account as far as I know, and I find it to be really amazingly good. It's definitely a newfangled way of reading for me, you start at the 'end' of the book and read from right to left, but I seem to be managing. It's a really different way of delving into a subject.
I am reading volume two only because borders books didn't have any of the others. It's about a family in Japan, with two children. The older son has autism and they have a younger daughter as well. I am up to the part where he is in elementary school. I have to say, for a comic book type setup, it's spot on in it's depiction of what it's like. I find myself on the verge of tears while reading, thinking 'yes, that's it!'. I like that kind of feeling.
I have blogging on the brain, and I wanted to share.

I think I've overslept.

That's how it feels. You know that frantic feeling you get after you wake up late, and realize that no, it's not Saturday.
Where have I been? I guess it's been hard to organize the frantic ramblings going on inside my brain as of late. I kind of lost my blogging zip due in no small part to my love affair with facebook. Add that to the fact that I suddenly realized there is no such thing as anonymity in this world, even with a silly name, and I kind of lost my taste for spilling my guts. I am sorry blogger, I abandoned you, but I am back and this time I promise I'll be good. I might be a little more anonymous this time around, I hope someone still reads this. I need contact, praise, reinforcement. I am needy.

We are still here, things have been moving along, some days are blissful, some days are stressful. I always feel like one blissful day is payback for two stressful ones. But that is my twisted sense of order, one must worry in order to insure that things work out OK in the end.

So I will continue to ramble on about my obsessions, and vent to cyberspace. I missed blogging, I missed sorting it all out. My husband asked me last night whatever happened to my blog and it got me thinking about it. So, here I am. Again.