Monday, December 31, 2007
My brother in law told me a joke. A joke that I could actually remember and repeat. Ok, here it goes:
This guy goes to his doctor. His doctor asks him how he is feeling and the guy says "I don't know doc, I can't get the song 'Delilah' out of my head. It is driving me nuts'. The doctor says to him 'it sounds to me like you have Tom Jones Syndrome.' The guy is alarmed and he says to his doc- 'gee, doctor, is it common?' The doctor pauses for a moment and says, 'well, it's not unusual'.
Badump bump. And on that note, I think I am heading off to sleep.
Once again, Happy New Year!
First of all, Happy New Year!!! Second of all, I really am not a huge fan of new year's eve and all it's festivities. I never was and each year this time rolls around and I feel more and more guilty that I am not a party animal. So I will try and embrace this new year with some centering calm and un-self destructive thoughts. I really don't want to think about the dreaded resolutions. Even when you swear up and down that you won't be having any this year, they are still there like the evil thoughts that pop up when you are trying your hardest to not have evil thoughts (does this sound problematic to anyone?). I don't need any help coming up with a list of my shortcomings, especially at the end of a long and exhausting (and sometimes exhilarating and joyous) year. I carry an unwritten list of things I would love to change about myself at all times, it's in my makeup bag with my chapstick.
At any rate, I am sitting here on new year's eve with bubs. He is going to sleep in a little while. My husband has volunteered to work tonight and tomorrow and I am kind of bugged that he chose the almighty dollar over his blushing bride. I guess I should only be partly insulted because we really do need the money although I question if his working tonight would have made any difference in the big picture for us financially. It just doesn't feel right, even though we would have probably fallen asleep long before the ball dropped. I think I am going to make a list of all the things I am thankful for tonight and call it an end to 2007.
Happy New Years!!!!!
Wednesday, December 26, 2007
There has been a terrible occurrence in our fish tank over the weekend. Almost too horrid for words, almost. Back story-my hubs finally cleaned out our fish tank around a month ago. We have a small freshwater tank which was mainly for bubs to enjoy. Up until the point at which he finally cleaned it, we had an algae overgrowth. Bubs thought it was seaweed, he was so excited. It looked like the scene in nemo where they clogged the filter with the pebble. Once the tank was cleaned out we found the water to be terribly cloudy. Almost so thick you could hardly see the fish. We took a sample of the water to our local pet store, which happens to have an enormous aquarium department (it's a really cool place). They said that there was bacteria in the water and we would have to keep the light off and only feed them every two days. Now, I am no fish tank expert, but in my opinion that seemed a little abusive to me, almost criminal. However, we had faith in our pet store experts and we wanted our tank to clear up.
We have been doing the 'protocol' for almost two weeks and the tank is starting to clear up. But it came at a price. My husband was checking all the vital stats for the tank (temp and water level and stuff) and he discovered a brutal event had taken place. I was taking a shower and he came in to tell me that perhaps feeding them every two days wasn't such a great idea. He found the remains (part of the tail) of a neon tetra in the filter. It seems that one of the 'not so fit' fish succumbed to Darwin's theory in a moment of fish tank starvation. My thoughts immediately turned to that crash in the Andes, (I never did actually see that movie) and I was really disturbed to realize that I am harboring such crazed little creatures in my living room . I was also overcome with guilt that we drove them to it. I will never look at my fish tank the same EVER again.
I am also making sure to feed the little bastards every morning from now on.
Thursday, December 20, 2007
Tonight bubs was in the tub, for a really long time. I was hanging out with him and he had a bunch of his sea creatures in a tupperware container. It was also filled with water and perched anxiously on the ledge of the tub. I proceeded to explain to bubs that this was a no go. We couldn't spill the water all over the floor. He appeared to understand me. I went out of the bathroom, but still hovered close by. I hear the lovely sound of water gushing and then a little voice say 'uh oh, I am sorry'. Mind you, I am glad bubs has manners but he says 'I'm sorry' a lot, and only some of the time does he actually mean it. Water was every where. I didn't get mad, and I was proud of myself for that because I am really shot right now. I proceeded to clean up using every available towel. I told bubs bath time was over. He wasn't being a good listener and he had to get out of the tub. At this point my sweet child was taken over by a crazed demon spirit. I couldn't get him out of the tub without hurting him and myself. So I took out all of the toys. He then grabbed the bath mat and threw it in the tub. Ok, I am starting to get a little mad now. The rug was already sopping wet, I threw it in the sink and I grabbed the drenched bath mat. I walked out of the bathroom but stayed right outside the door. I was hoping he would calm down. No such luck. He wanted his bath toys, so he got out of the tub and then I scooped him up and placed him in the living room. He started screaming and yelling and hitting me. Luckily we still have the safety gate up in this room so I closed it up and buckled down in the next room. It really unnerves me. First of all poor bubs was naked and pacing back and forth screaming about wanting to go back into the tub. I did my best planned ignoring yet again. Perhaps my best isn't good enough. This went on for, oh, an eternity. The whole time I started freaking out. What the hell is going on here? I am seriously worried that some kind of new 'behavior' is popping up here and I just start envisioning bubs as a teenager having these kinds of episodes, ugh, it truly is dark and awful. It's like all the good stuff goes poof in an instant.Finally I sensed a lull. He told me he wanted out and in my calm zombie voice I told him I would come in and sit with him. He climbed up into my lap and I hugged him. I hugged him to comfort him as well as myself. He let me put his pajamas on and we went up to bed as if nothing ever happened.
Is it too much sugar? Is it an autism thing? Do four year olds typically throw crazy tantrums? Is it too much santa talk? Ask again later.
Tuesday, December 18, 2007
My son has been kind of tantrumy lately. It is a big source of worry for me. Yesterday afternoon bubs came home from school (he didn't earn his reinforcer from preschool) and he decided he wanted to go outside and jump on the trampoline. It was freezing out. So we said no and of course the screaming and yelling began. My husband was going outside to finally switch the autumn flag out for the winter flag (I am a seasonal decorating nazi) and he asked bubs if he wanted to come out and help. He said yes and then we had some more behavior. He wanted to wear my crocs outside and kept insisting they were his. Then came the gloves. He wouldn't put them on. I finally got him to concede and he was so uncooperative, I was starting to get scared that he didn't understand the concept of 'gloves', with each finger having a home. Ok, we got through all of that-barely, but he went out somewhat bundled up. Within the next two minutes I hear blood curdling screams. I open the door and my bubs is having a near nervous breakdown over the flag. It seems he doesn't want the new flag. He wants the old one up. Now mind you, the flag was never spoken about before in any way shape or form. No mention of a flag ever. We have had them up since we have been at this house and changed them according to the seasons. Screams. We get the screamer inside lest someone decide to call child protective services on us. My husband makes the mistake of coming in the house with the old flag. Bubs is just beside himself. Of course I am starting to get really worried and all of those familiar 'dark thoughts' come sneaking in the back door of my soul. Let's say I am now perseverating on the perseverations.
Someone else needs to explain to my dear husband that the time to explain the changing of the seasons to a four year old is NOT when he is writhing on the floor screaming in frustration. Chances are, the concept is not going to 'stick'. I do my best to 'planned ignore' the behavior, while being a loving mom at the same time. I am not sure it worked. Bubs carried on for over 45 minutes, the whole time I am hearing phantom sound bytes of 'typical for a child on the spectrum.....'controlling behavior'....'fixations on unusual items'.... yada yada yada ...don't stop worrying about this shit ever....
I went into the kitchen to finish 'cooking' bubs' beloved dinosaur chicken nugget bites and he came in and in the last futile attempts at anger said 'I am mad, mommy... winter is terrible to me... terrible to me!' . It was as if he was summoning up the worst word he had in him (by some miracle of god he hasn't started cursing yet!). I never heard him say the word 'terrible'. He then asked me if we could put the old flag up later. Ahhh, the proverbial 'later', got to love the vagueness of that. 'Sure', I said, 'We will put it back up later' (and I had my fingers crossed that he would forget about it). He happily skipped away and crisis over, for now.
Wednesday, December 12, 2007
My sister called me yesterday with a funny story about her son. He is six and is also on the spectrum. She put up her tree yesterday and her husband has this star trek ornament from his childhood. My sister is careful to hide that baby somewhere where her son won't see it. It's actually a little star ship enterprise and it has a button on top where you press to hear different snippets of star trek wisdom. The reason it was hidden was because her son likes to press the button over and over again and script the lines from it. Well he found it, of course. My sister said he could say the lines perfectly in the order that they come out when the button is pressed. If he doesn't understand a word he will 'replace' it with one that sounds appropriate. He is a funny kid, he seriously cracks me up. So my sister hears him say 'live long and eat pasta'. I can imagine Spock saying that sitting at the table getting ready to dig in to a nice big bowl of spaghetti and meatballs, can you picture it?
I will file that one away with 'pirates of the carrots and beans'. My nephew is awesome!
I couldn't get a doctor's appointment for him till six that night. I was really anticipating an office full of sick kids and their mom's who would just grimace when they saw my poor bubs unfortunate eyes. Thankfully though, the office was nice and empty. I usually don't mind this ped's office. I am on my fourth one since we moved to this area. I never thought of myself as a difficult mom, and I still don't. I just have problems with and very little patience with pediatricians for some reason. We got into our little room and the nurse came in. She seemed like one of those people who appeared nice on the surface but was really a nut job underneath. Kind of like latent road rage. She was nice enough with us though. Most of the time I don't go into the whole 'pdd thing'. The doctor knows us so I don't have to go through the whole story every time. This nurse didn't know us though. She was giving bubs all kinds of ten step directives and things, he was ok with them. He couldn't keep his hands of the blood pressure thing, he just loves that little balloon thing. I could see she was getting annoyed. I totally understand, it's 6 at night and she's had a whole day full of snotty crusty kids badgering her. While she was taking the b.p. he was kind of singing and she told him he had to be quiet. Then he started kicking her while she was in front of him listening to his chest. I told him to stop and I tried to explain that he wasn't being aggressive, it was more of a sensory thing. I don't allow bubs to kick or hit people, but I felt that I wanted her to know why he was doing it. So she was just mildly annoyed by us. When the doctor came in, I had asked about when he could return to school and she asked me what school he went to. So I told her. Bubs school has the word 'autism' in it's name. I usually don't share this info with people, unless they need to know and this chickie needed to know. It was like a light bulb went off in her head and she suddenly morphed into florence nightingale on the spot. She started talking to my son as if he were deaf or spoke another language and she was my new best friend. She even wiped the gunk off of bubs eyes and gave me extra gauze to take home and do it myself. Honestly, I was kind of taken aback by this sudden shift of behavior. She must have been having some major bad thoughts about us and felt terribly guilty and needed to redeem herself in the remaining minutes of our visit.I want bubs to be treated as an equal but I also want him treated kindly. I don't want phony balonies in his life, like this lady. Although the new version of her was a marked improvement over the 'old her'.
Perhaps I am too sensitive today.
Thursday, December 6, 2007
At any rate, I am just knocked on my big fat butt right now. I'll be back and ranting in no time.
Monday, December 3, 2007
It seems like every time my son hears music in any form, be it dora's theme song, or even his own grandiose and somewhat random humming of 'five golden rings' (just that very line) he must hit me. It doesn't even matter if I am in the same room, he will find me. It's not just a single slap of anger or frustration. It usually has nothing to do with that. It's more of a compulsive need to tap out a rhythm(on my back). How do I know this? It's because when I asked him 'why are you hitting me?' he says 'mommy's a drum'. I usually just shoo him away and thank my lucky stars that I am currently the only recipient of his musical endeavors. Tonight after his tub he requested 'numbers', which is the babybumblebee counting dvd. I find it a little mundane, but bubs loves it. Basically it's a bunch of kids counting things. Counting things over and over again. They go from one to ten. Somewhere around four, bubs comes over to me (sitting at the computer of course) and hits me four times counting each 'tap' and says along with the dvd 'four, four hitting mommys'. Of course I think the dvd was four matchbox cars. I thought that was awfully creative, is there something wrong with this picture?
Wednesday, November 28, 2007
We dismantled the aba room (aka therapy room) and made it bubs' new ocean extravaganza room. I know he likes it, but I know he misses his crib. I know I kinda miss the crib too, but hey, transitions are never easy, but change is good. The best part is that we now no longer have a therapy room!!!! Nor do we need a therapy room!!!! That is cause for celebration unto itself. Bubs still gets home hours but he does them in the living room now. So the old room is now going to be my 'room of one's own'. I even picked out a new paint color. It's called 'sanctuary' and honestly, I picked it because of the name (but it's also a nice color, kind of a grey-ish periwinkle). I am not entirely sure what I am going to be accomplishing in my 'sanctuary' but I know it's going to smell all nice and aromatherapy-ish in there.
Monday, November 26, 2007
To be honest though, I am really enjoying the Christmas shopping this year. I see so many things bubs would like, and I think he is actually starting to grasp the concept of Santa. When he was first diagnosed, one of the questions on one of the many tests he was subjected to was about opening presents. I remember that I answered 'no' to whether or not bubs was interested in opening a wrapped present. Apparently consumerism is an innate skill that our children are supposed to come hardwired with, and it was a skill my bubs didn't have. So what did I do? I started wrapping 'novel' crap up in pretty paper and schooling him in the fine art of ripping open a box. He picked up on it pretty fast because now he is a present fiend. It's almost painful for him to go to a birthday party and watch the pile of goodness and know that it's not his to open. The last birthday party he went to, he and his friend Emma sat and watched the birthday boy open his loot and they were both trying to make each other feel better. 'Don't worry, we can have presents too', my bubs said. His little friend said 'yeah, our birthday is next'. It was too adorable. He also consoled himself with the fact that there was sure to be a goody bag, although I am working on him not asking for it as soon as he walks into the party. How far we have come!
I must add that I am not certain on the spelling of 'binge-ing'- I keep switching from no e to adding an e back to e-less, and now the word just looks completely wonky to me. So if I spelled it wrong, please forgive a momma.
Wednesday, November 21, 2007
Bubs has this undying need to ask me ten thousand times where we are going, and where we are going after that, and where we are going after that. I think it's partly due to that little controlling nature of his, and the fact that he is on a visual schedule at school, which he can commit to memory. So at night we have our little talk of the next days festivities, at least 37 times. I do try and turn it around and ask him the questions. So tonight he asked me about tomorrow. Tomorrow is Thanksgiving, I reiterated. I told him that first we would go visit his fraternal grandparents (not using those exact terms) at their friends house. Then we would go to my parents house (again, for the purpose of 'anonymity', the names have been changed to protect the innocent). He was intrigued by the idea of going to my in law's 'friend's house'. So we went over that one a few dozen times, I thought maybe the new person being introduced into the mix might account for the inquiries. Then of course we went over where we were going after that. Is this boring yet for anyone reading this? So after a few rounds I said to him in a kind, motherly sort of way, 'Please stop asking the same questions over and over again' (words I NEVER thought I would utter, and it's with great joy that I said them!). Bubs stopped for a second, got real close to my face and looked me in the eyes with his sweet mischievous smile and whispered ever so softly.....'where are we going tomorrow?'.
Happy Thanksgiving Everyone!!!!! I love Thanksgiving, it's a time when I get all sappy and sloppy about how lucky I am and there are no presents involved, just one of my favorite hobbies-eating comfort food. Enjoy the day, wherever you are going tomorrow!!!!
Tuesday, November 20, 2007
I know that I am probably a day late and a dollar short on this one, but hey that's the story of my life. This is an article about the 'Maryland incident' , which in my opinion is really, really frightening on so many levels:
Monday, November 19, 2007
Cyndi, mom extraordinaire to Matthew (visit her blog here) has tagged me to write 8 interesting things about myself and then tag 8 other bloggers. First of all, I'd like to thank God, My husband, the academy....etc.....
Hmmm. Eight things. I am really not all that interesting, but I love talking about myself so here it goes...
1) I went to high school with my husband, but I never really knew him there. We grew up down the block from each other and our parents were friends, but again, never really knew him. We met in a bar when I was 34 years old.
2) I went to Art School in Chicago, and I thought I was going to be a famous artist someday. I loved that school (The school of the art institute of Chicago) and I had so many crazy experiences, I was so sad when I graduated.
3) I once spent the night in a mausoleum in Champaign Ill. We had no where else to crash. I didn't enjoy it.
4) My dad went to high school with a band member of the grateful dead. I spent the seventies and eighties (and a little of the nineties) going to dead concerts. I got to meet lots of interesting characters and when I was sixteen I got to stay at 'the ranch' in Marin County and get driven around in vw microbus that used to belong to the notorious 'Mountain Woman'.
5) I met my best friend in a 'bob newhart' therapy group. People always ask us how we know each other and the story changes every time. We know each other really well.
6) I am not a morning person. (but is that really interesting?)
7)My mom is Jewish and my dad is Catholic. I was sort of raised catholic but kind gave it up around my 13th birthday. Much to the horror of many of my husbands friends we didn't get married in a church and we didn't baptise our son. I am kind of floundering on the religious aspect of our lives. Perhaps a Unitarian universalist church at some point. But not yet.
8) Before having my son, I was an art teacher for ten years. I started out teaching pre-k and k and then high school later on. I really loved teaching high school, for the most part. Towards the end of my pregnancy though, I was really short on the patience and I didn't really like what I was doing.
Ok, now I am off to bother 8 other unsusupecting bloggers. I hope I can find eight people. I am insecure that way,lol.
Sunday, November 18, 2007
I signed up to be a parent member for my school districts cpse/cse meetings. I have to admit, part of the reason (most of the reason) I volunteered to sit in on those meetings was purely selfish. I want to learn all I can about the wheeling's and dealings of the committee on special education. I want to learn how the laws work, how they don't, how they manipulate the law, and probably most importantly, what kinds of services are available. I am a very nosy person as well. I have to say, even after sitting in on an orientation program for the parent members, I am not entirely sure what my role is. I sat in on my first 4 meetings last week. Two of the meetings were fairly benign, I don't know if I am 'allowed' to talk about the particulars (kind of like jury duty?) but suffice it to say, no major issues going on with the kids. The other two were a little more dubious. One of the kids was in the wrong placement. He was most certainly (in my opinion) not getting the right services and he had a dx. After the mom left I asked the school psychologist why he was not placed somewhere more appropriate (and better in my opinion) and she said in a kind of crunchy, sappy, somewhat condescending tone that it was kind of a touchy subject with the parent, and the parent wasn't ready to hear certain things about her child and there wasn't enough time to get a proper placement, blah blah and more blah. I said that no one ever thought to spare my feelings in our early days of autism. I realized then and there that no matter how much I hated hearing those words and actually hated the people telling me those words (just because those words were coming out of their mouths) that I should count my lucky ass stars that they didn't care about hurting my feelings. Yeah, it was hard, and it was a heartbreaking painful experience to go through, but it really got us to act, and it got us lots of services. No one minced words when it came to Bubs and I really think it was a form of tough love for us. I look at where my Bubs is now, and I shudder to think where we would be if the powers that be (early intervention) were scared of making me cry. Incomprehensible.
In the second meeting where the red flags were flying loud and proud, the child appeared on paper (and I say this because I have never met the child, I just heard the reports) to have asd, borderline cars score, speech delay, flapping, echolalia, and the list goes on and the child only got one hour of service per week. The said child scored higher on the cars then my son and by description really sounded like a child with asd. One freakin hour of service. The parents were just thrilled that the child didn't have an asd dx. The older wiser me couldn't figure out why they wouldn't persue it, if anything for more help for their kid. Looking back, in the beginning of this journey, I would have paid someone large sums of money to tell me bubs was just fine, don't worry, it's just a speech delay. As time progressed, I wouldn't have believed someone if they told me that. Now, I don't care what you call it, I look at Bubs for the sweet joyful, amazing kid he is, and I can rest easy knowing that I moved heaven and earth to help him be the best Bubs he could be.
Basically as parent member, I wanted to reach across the table, give those poor parents a hug first, then a shake, and tell them to just forget about the label. At this point, the label is your friend, the label will get you help!!!! The proverbial window is open right now, get in there while you can! An hour a week, that's total bullshit. I felt like such a jerk and somewhat lacking in integrity (and/or a pair of balls) sitting there being quiet. But I wasn't too sure it was 'within my boundaries' to start preaching hellfire and brimstone.
I am rambling here, it's Sunday night, I am a little fried from my action packed weekend.
Friday, November 16, 2007
Tuesday, November 13, 2007
I was cleaning bubs off while he was in the bath the other day. I had to get in and clean those ears, know what I mean? So I took the washcloth and told bubs I was 'looking for potatoes', that's what my mom used to say to me. He was OK with it, since he was curious about those potatoes growing and I guess he was somehow disappointed that I didn't pull out an actual spud on the washcloth. OK, not a big deal, I think I even got to wash his hair. The next day I was in the shower and bubs comes barging through the door, crying actual tears. I said 'what's the matter, bubs?' and he said 'I want my potatoes back mommy. I want them back'. I tried explaining to him that there were no potatoes, I was just joking. He wasn't buying what I was selling. After much carrying on, all of this while I am naked behind a shower curtain with shampoo in my hair, I handed him the washcloth from the day before and I said 'here are your potatoes, they are in here'. 'Oh, thanks' says bubs. He took the washcloth inside and that was the end of it. I had better hope that no one plays the 'I got your nose' game with him.
Sunday, November 11, 2007
I am starting to get worried about the shots. Very worried. I stopped giving bubs the shots at his 12 month checkup. All along I was pressured by the peds, pressure pressure and more pressure. At bubs' 12 month checkup, my well baby insurance ran out, and just like that, the pressure stopped, at least for a little while. I had successfully managed to avoid them until somewhere around bubs' third birthday. At that point, bubs was entering his center based preschool. Ironically, I had written a somewhat bizarre letter expressing my sincere religious beliefs about not getting the shots and I just needed a letter from my peds office further reiterating that I had indeed, refused the shots. Well, when I called up the docs, they got really nasty with me and told me I was no longer invited to their party. Yeah, I got kicked out of the peds office. So, I found another ped (there is always another ped) and he was somewhat tolerant of my beliefs, although I feel as though any day now he is going to tell me that our presence is no longer welcomed at his lovely office.
So, now bubs is four and he will be going to district kindergarten next September. In the wonderful state where I live, you are only allowed a religious exemption for vaccinations, medical ones are extremely hard to come by, and even those are on a 'shot by shot' basis. The religious exemptions are becoming increasingly difficult to get, and in our case it looks really bad because I started vaccinating and suddenly stopped. So I am starting panic mode early, in the hopes that I can start constructing my fabulous, earth stopping, error proof testimony to the fact that my religious beliefs do not allow me to continue with vaccinating. The way I truly feel about it, if there is in fact a God, I know that He would want me to keep my son healthy, and He would want me, as a mother to move heaven and earth to make that so. I haven't been to Church in at least 15 years, and my son isn't baptised, but I am firm in my beliefs that there is some higher power guiding this whole production. I am also firm in my beliefs that things happen for a reason, and that fateful day my insurance ran out, perhaps contributed to how amazingly well my son is doing now. I don't want to do the wrong thing, and I don't really trust our medical establishment.
I am just not sure I am up on the 'legalese'. I have been looking into hiring a lawyer, even though I can barely afford to pay my electric bill these days. And lets just lay it on the table now that I am NOT cut out for homeschooling.
It's so interesting to me how these standards vary by state. Some enlightened states allow for a philosophical exemption. How great would that be for me? It just baffles me how there can be so much discrepancies between states, hell , it's even different from one school district to another around here. Where is the logic in that?
Thursday, November 8, 2007
I also think bubs is starting to do a little aba mumbo jumbo on me. He will ask me a question, or rather, tell me what he wants and expects to get in a question like form and then finish with 'got it?'. This goes something like, 'I want to have dinosaur chicken nuggets and happy face fries for dinner,mom.... got it?'. Um, yeah I got it bubs. Back in the day when I was a teacher, we called it 'checking for understanding'.
It's all good, it really is. And I bet I could win on a special oceanic version of 'who wants to be a millionaire', especially if they ask a question about narwhals.
Tuesday, November 6, 2007
I urge anyone reading my rantings and ravings to check out this article by Kim Stagliano in the Huffington Post!
Monday, November 5, 2007
Can I just say that I owe my sanity to better living though chemistry. I mixed up a batch of 'magic frosting' last night and to my complete and utter surprise, bubs declared 'there's no medicine in here!' and happily ingested the crap. The miracle continued this morning when he ate it again! Isn't frosting the breakfast of champions?
Sunday, November 4, 2007
Friday, November 2, 2007
What a week! I am one fried momma. OK, first of all let me express my profound disappointment in the behavior of my (once)beloved 'Dog' Duane Chapman. I am so disappointed in him and his Aloha, and I just read that they pulled his show from the lineup. Why'd you go and do that Dog?
The whole medicine situation has really gotten to me. On Monday they gave bubs a rx for penicillin for his strep. As I previously reported bubs hated it so I called and got a new rx for some chewable amoxicillin. He hated that even more. So I forged ahead with the old bad stuff. I thought I had this aba stuff down. I thought I could do it, I am tough and I like to think I have a grip on old Ivar Lovaas and his methods. I tried the planned ignoring, I tried the reinforcers, I thought I did it all. It all failed. I have to admit that more than once I considered just forgetting about it, but it was more of a devil over my left shoulder telling me to do that. The angel on my right smacked some sense into me. The issue became bigger than just taking some medicine. It seemed to evolve into determining how successful my son would be in life. Yeah, that's they way my twisted mind operates. My biggest fear for bubs is that his strong willed demeanor would really make life difficult for him (and those around him). He is so smart, so verbal, so social but his unwillingness to do that which he deems unworthy of his time would cause his teachers to use 'the label' against him. So, him not taking the medicine, became symbolic of him not wanting to stand in line, him not wanting to write his name, him not wanting to stop rolling around on the floor, etc., etc., him not listening to his boss, him not wanting to pay a phone bill, him not coming to visit me at the nursing home, etc... It really started to get to me. Last night was pretty much the breaking point. I held his arms and tilted his head back and squirted the syringe of yuck down his throat. It was like wrestling a bear with 6 arms. I went downstairs to get a paper towel to wipe the stickiness off of his face. When I came upstairs, he proudly pointed to the red wet spot on his comforter where he spit up all the meds. So, I squirted him with some more, not even caring at this point if he swallowed it. I tearfully admitted defeat.
Today I had parent training at bubs school. I wasn't too sure if I was going to send him or not, but I decided we both needed a little edumacation. I put him on the bus, and followed behind in my car, with a Ziploc bag with an ice pack and some penicillin in it. I kind of debated doing this because bubs' school can get a little hardcore sometimes, but desperate times call for desperate measures. They went through their list of suggestions, all of which I tried. I know I was annoying, and the tears of frustration and exhaustion didn't help either. So we went into bubs' room and gave him his choice of how he wanted his poison- cup or dropper, sponge bob cup or sippie cup, bert and ernie berry punch or motts for tots, blue straw or green straw, yada yada. Choices in place, we sat down and waited it out. I felt like I was on a pdd version of law and order in the interrogation room, the little cup of medicine like the lone cup of coffee. We got the treasure box out of my car, fully loaded with oriental traders loot. It sat out on the table, a giant carrot dangling on the nose of my existence. Wouldn't you know it, after about an hour of sitting there, he chugged that thing down like a shot of jaegermeister. I felt like the weight of the world was lifted off of my shoulders, for at least two hours. Just to be safe, the school made me come back after lunch to practice my new skills one more time before heading solo. It also took an hour. Tonight at home we clocked in at 45 minutes. I am hoping to shave 15 minutes off my time by the end of tomorrow night. I can tell you that on Wednesday night I might have to open a bottle of champagne after he chokes down that last dose.
Wednesday, October 31, 2007
We did manage to go trick or treating. Bubs seemed to enjoy it and he wore his costume for the entire time. Last year he took off his elmo getup after the first house and he just went as a 'three year old boy'. His candy bag had ripped and basically I just felt as though we were begging random strangers for candy. This year I came prepared with two bags, I was ready, and I dressed up as well. I was a plus sized witch. I got the costume at walmart. It was black stretchy velvet with spider web lace sleeves. A lot like some of the getups I used to wear 'clubbing' back in the day. All I was missing was the combat boots and some cure songs. I was somewhat shocked at some of the costumes the tweenie girls had on. A lot of french maids and prisoners with fishnet stockings. Good god, my parents would never have let me out of the house in that, some of them weren't more than 11 years old. At any rate, bubs seemed into the whole deal. He would get a piece of candy from each house, inspect it and eat it on the way to the next house. He gave the rejects to my husband, who was more than willing to accept them.
Bubs was also more than happy to dole out treats back at home. That was a refreshing change from last year when he screamed bloody murder every time I tried to hand out some treats to the kids at my door. He just couldn't wrap his head around the concept that we actually gave candy away. How preposterous- he would scream at the poor kids and slam the door. This year he was scooping it out by the handful along with the complements- "I like your costume." It was really nice to see.
Tuesday, October 30, 2007
Monday, October 29, 2007
Bubs is sleeping on the couch, poor little guy. I hope he feels better soon!
Friday, October 26, 2007
I am a biomedical slacker. I didn't always used to be, I used to be really neurotic about it. I got kind of burnt out on the whole magilla, but somehow after reading Jenny McCarthy's book,I kind of got sucked into the vortex. But only halfway this time. I promise.
When bubs first got dx, or even before, I was online constantly looking up everything. In my attempt to convince myself that I had control over the situation I stumbled upon the D.A.N.!protocol. Don't even think about leaving off that exclamation point! So I dragged my son to the closest D.A.N.! doc I could find (we shall call him Dr.Well from now on). I plunked down enormous sums of cash and I agreed to do whatever he told me to do. We went casein free first, we went gluten free shortly after. It was relatively easy though given that bubs was 18 mo and didn't talk. He wasn't that much of a fan of solid foods at that point either. I had to go to dr. well every two weeks. It seemed like every time I went, he added another task to my list, the pressure just built each time I went there. I remember one time bubs had an ear infection and I almost went into apoplexy at the pediatricians office when they wrote out a rx for antibiotics. Dr.Well told me not to. I was torn. I didn't want bubs to be in pain, and I didn't want to screw up his gut. So I dragged my poor bubs to the other end of the island for a quick hocus pocus session with dr.well. It was a huge huge leap of faith, but whatever the hell he did, it seemed to help bubs and he survived, miraculously, so did I. Ok, I am veering off course here. The reason I am a biomed slacker is because it all just got way too much for my fragile neurotic mind to handle. Every time my son spinned a wheel or looked at something funny, I blamed myself. It was the lollipop he ate two days ago-yeast! Or that I couldn't follow the virtual caveman diet they told me to follow, basically nuts and twigs and boiled chicken. I just couldn't do it well enough. I couldn't make the young coconut kefir (even though I tried about 6 times). My son wouldn't eat broccoli. Oh, if he would only eat some fresh cultured veggies (sour kraut times ten!) then he would talk. I felt like no matter what I did, I wasn't doing it well enough. I did it for over two years. We schlepped coolers of food wherever we went, I made my own chicken nuggets, and crazy concoctions that my sister made fun of.
I thought yeast was at the root of all of our problems. If I could only get rid of the yeast. If you do any delving or dabbling into the biomed world, eventually you will come across the yeast issue. There are tests for it, expensive, kind of not sure about the validity type tests. But it's safe to assume in the biomed world that any kind of stimming, sleep issues, ocd behavior, skin issues, can be blamed on that yeasty beast. To treat it? Not that easy. It involves a variety of concoctions that kill the yeast causing die off, the herxheimer effect if you really want to get scientific. Die off isn't a pretty thing, but it's supposed to be good because after a week or so of hell you are supposed to be rewarded with a new and improved child. Of course this sounds sarcastic, but there's probably a bit of rationalizing going on inside my crowded head. The truth is, I don't know what works. I don't really know. No one does. It just involves a lot of blind leaps of faith. Even though I thought I was done chasing the yeast beast, I have been slowly but surely getting sucked back into the matrix. I have my threelac, I have my probiotics, have the caprylic acid- I even have the lauricidin. I am out to hunt down and annihilate that vague yeast monster. Even though I am not sure whether or not it's out there.
I just wanted to add as a caveat (my new favorite word) that my own biomed obsessions probably have very little to do with my child. I managed to live around 37 years on this earth under the illusion that I had control over my life, silly girl that I was. When bubs was dx, I was terrified and felt like I had to do something to help him. My goal wasn't to turn him into a science experiment, or change the core of his already wonderful being. I just wanted him to talk.
I've eased up big time since then, but I think I am getting nervous for him with kindergarten looming around the corner. I hope this post isn't to verbose- it's lookin a little wordy.
Thursday, October 25, 2007
My son has a blowhole. Yup. Or that's what he told me. This morning when I was getting him dressed he said "I have a blowhole mommy". "Wow", I said, "You do?". "Yes, I show you, it's right here." and he lifted up his shirt and pointed to his bellybutton. I was kind of hoping that was what he was going to point to. Did I mention that his favorite channel is animal planet?
Wednesday, October 24, 2007
Tuesday, October 23, 2007
OK, I just have to pay homage to two of my most favoritest people. Who other than Dog and Beth could turn a hardened criminal crackhead thug running from the law into a sniveling, driveling, grateful for being apprehended ,mess? It's a virtual love fest every time. I love these two. They have successfully bumped 'cops' out of the running for my most beloved tv show. I love the opening intro when Beth jumps into her suv, on her way to snag a menace, with furious intensity, taking the time to grab a giant perfume bottle off her dashboard and give herself a quick spritz before peeling out. Love it, and I love that she wants to smell good for the criminals. I love her chutzpah. I love Dog too. I won't comment on his style though, because it would end up sounding mean, and my aim is true here. I love their big pow wow in the beginning of every show and I love the group hug at the end. I love how there is always a long lost child of one of them showing up and joining the family bizness. I hope this doesn't sound smarmy or sarcastic. I really do love them.
Monday, October 22, 2007
I tried to turn the afternoon around by taking him to the park, but I am not even going to go into that fiasco.
Tomorrow is another day. I am taking that bowling picture off of his reinforcer chart immediately.
Sunday, October 21, 2007
Sometimes I think we live in two worlds. We have the nt world (neurotypical, non asd) and then we have the asd world, i.e., 'my peeps'. I think it's like a sub -culture complete with it's own language broken down into letters and acronyms. I remember reading the book 'A Clockwork Orange' and it had it's own dictionary in the back to explain what some of those crazy words were (I still remember 'oddy knockies' by the way). In the world of my peeps we have our most loved aba, with it's sd's,vi cv's, and fba's and the lovely meat acronymn (it has something to do with medical, environmental, and I cannot remember the rest). We even have abc charts, which might not be exclusive to aba. We have asd, hfa, as, and the most cherished pdd-nos. I personally love the nos, it's so vague yet so filled with hope. Then you have the realm of pt and ot and sometimes even st. If you are feeling adventurous there is a DAN! protocols with gfcf, clo, b12, dmg and it's brother tmg , as well as gse and ldn. They have oat tests (which have nothing whatsoever to do with oats). You might be considering tddmps (I might be wrong on those letters) or be using ala, or perhaps going the natural route with the ncd. You will be nervous for your upcoming cpse meeting and creating your iep , although these terms aren't limited to the autism community.
All snarkiness aside, I really do feel at home in my new found social subculture. When bubs was first dx, (love dx as an abbreviation, as well as rx and tx) we had early intervention at our home. Bubs got 19.5 hours of aba, and 30 minutes of ot two times a week. It was incredibly isolating. Basically you were imprisoned to your house and autism was the old ball and chain. Besides the fact that you basically are sitting home feeling sorry for yourself, your whole day revolves around accommodating a bevy of therapists and listening to their various and creative excuses of why they are going to be cancelling that day (uh, my dog has a hangnail, so I won't be coming). However, the thought of sending my little 2 year old bubs to a center based school for six hours a day was beyond my comprehension. After a very long year though, I changed my tune. Sending bubs to his school has really been a wonderful experience for all of us. He loves it, is doing amazingly well and I as a person (as well as a mom)have really gained a lot from him being there. We have a sense of belonging, of acceptance and the fact that everyone in his school was on the same journey. There is that instant camaraderie amongst the war torn - and although it doesn't necessarily mean meeting best friends galore (although in my case it has), sometimes the spark ignites and you find out you have much more in common with some people than just the asd. And sometimes other parents are just plain weird. But I am veering off course here. I guess my point would be is that as bubs grows, we find ourselves straddling these two worlds, one foot in each. Perhaps some would say the goal would be to leave our little comfortable spot and venture on down the nt side of town. We are in our last year at bubs' wonderful school so it will be interesting to see where we wind up.
Friday, October 19, 2007
I picked up bubs from preschool and apparently his behavior was less than stellar today. They said he didn't want to write his letters and he needed a lot of redirection. He wasn't horrible, just not 'reinforcer worthy'. To reinforce sub par behavior would not really create the desired response. As a teacher I can totally relate to that. As bubs' mom, I just feel bad for the guy. So, no bowling. He is pretty upset about it. I explained to him why it wasn't happening, and he calms himself down but then five minutes later he starts up again with 'I want bowling' (and it's accompanied by whining, crying and climbing on me). I have to be honest, I feel really bad for him right now, but I didn't really feel like going bowling. Tomorrow is another day.
Aba, or applied behavioral analysis, is a tightly run machine designed to increase desired behaviors and decrease undesired behavior.. So in our effort to increase those desired ones, like sharing, and sitting like a pretzel and my personal fave, 'being a good listener' while squashing those behaviors like randomly laying on the floor, general belligerance and sticking your entire fist in your mouth, we have come up with a plan. Bubs goes to a 'regular' preschool three afternoons a week in addition to his aba school. He is doing ok, but he needs to work on his overall behavior. I think he will do fine in school if he just learns that very hard lesson that sometimes you have to do crap you don't want to do. I think we all need a little help with that one. So I was really trying to come up with something motiviating for bubs, without it involving candy and large sums of money. Bubs is no fool, don't try to entice him with a measly sticker or some small little piece of crap. Go big or go home is his philosophy. He also would prefer to go somewhere as opposed to me handing him something. Shopping is one of his favorite pastimes, God bless him.
We just started our new plan this week. I drove around like a lunatic taking pictures of places I thought he might like to go to as his 'treat' for 'being a good listener'. There are caveats to this though (am I using that word correctly?). It couldn't be a place that we go to on any other day but Monday, Wednesday or Friday. It had to be somewhere motivating, and it couldn't drive me to the poorhouse (Target is a no-no!) It also had to be somewhere that would always be available on those days (not dependent on weather,etc)So far the list includes; the pet store,a.c. moore (he's a crafty little guy), Michael's,(they sell those plastic reptiles and sea creatures which my boy covets) Border's Books ,Dollar Tree (Love it there!) , and Chuck E. Cheese. Today I added bowling. I just have to do a drive by for the picture. I printed out little wallet size photos of the aforementioned places and laminated them. Yeah, I have a little laminator -isn't everything is so much nicer sandwiched between two shiny smooth sheets of plastic. Wednesday was the maiden voyage of my little plan. Bubs' shadow explained the deal to him and told him what he had to do to get the tokens. She showed him the sheet with all of my pics velcroed on. He picked the photo of chuck e cheese and stuck it on his token board. Apparently Chuck E. Cheese is a preferred reinforcer because bubs was the classroom helper that day. Yeah Bubs, but poor me, because I had to spend my afternoon at Chuck E. Cheese. What does that E stand for anyway? Excrutiating? Entirely overstimulating? Today I think we might be going bowling.
Thursday, October 18, 2007
Recently I got pulled over by a cop. I got busted talking on my cell phone. Actually I got busted holding up a cell phone to my ear, because as soon as I saw there was a cop around, I put the phone down. But it was too late for formalities. So the cop pulled me over, but there was something weird about it. It was like he was teetering on that fine line of giving me a 'stern warning' or taking the plunge and writing the damn ticket. A little hesitation. Whatever the hell kind of test it was, I failed because he took one look at me, and said 'I pulled you over because you were on your cell phone", took my licence and stuff and went off into his vehicle to write the ticket. I was sitting there for like an eternity and I couldn't help but think that ten years ago, this would not be happening. Ten years ago I would have been in my jeep wrangler with my blonde hair and cute clothes and I would have just gotten a speech and sent on my way. I was sitting there with a broken toe, schleppy sweat pants from target and a frumpy t shirt (and it was on a saturday night). To make matters worse I started feeling sorry for myself and I started to cry. Ugh. Could I be any more pathetic? My son was in the back seat saying 'don't cry mommy' which of course made me cry even more. I was so insulted.
Needless to say, I never talk on my cell phone while I am driving. I keep meaning to get a bluetooth thingy.
Wednesday, October 17, 2007
Oh, and he was great at gym class- a 'good listener' as we like to call it around here.
Tuesday, October 16, 2007
I now have to discuss Jenny. First off, I think what she did for autism awareness was amazing. Her media blitz last month got everyone yapping about autism, which I think is fabulous. I also feel like she wrote my story. Except for the fact that I am not a hot m.i.l.f., and my son didn't have the health issues her poor son had, and my hubs wasn't a complete jerk, she really wrote my story. I could relate to 100% of what she said, and how she said she felt. I have passed this book on to any and everyone who wants to know what it's like (for me). OK, that's the good, now here's the bad. Before I read the book, we had kind of tapered off on the biomeds. I was becoming obsessed with it, and I really put a lot of pressure on myself to be the perfect biomedical mother. The diet wasn't too tough although schlepping gluten free casein free foods in a cooler everywhere you went (including Europe!) was no picnic. The supplements were OK, a little bit tricky trying to disguise them and get them in without a fight. I stopped at chelation, it scared me and we didn't want to do it (although I am in awe of the parents that can- good for them!). It was a huge leap of faith but also a huge commitment to perfection on my part. Every time my son laughed or stumbled I wondered if yeast was overtaking his cute little body. Every time he would pick up a toy car and spin a wheel I felt a stab of anxiety that I wasn't trying hard enough with the vitamins and stuff. I worried that he had too much sugar or an infraction occured without me knowing it. I was a real drag. Bubs was doing sooooooo well, talking and interacting and just being so amazing. Since he started school and they take data on everything, which I love by the way, I figured that the data would show whether or not the whole protocol was helping. So I took him off. I had to do it for my son, for husband and for me. I was nuts. You know what, he kept going, he kept learning, kept talking, kept singing, kept being his great little self. I chilled and things got better all around. Fast forward to Jenny on Oprah. I watched, I cried, I laughed, I called my other autism mom friends. Then that feeling in the pit of my stomach came back. That little voice whispered; 'you are not doing enough, you have to do more'. Bingo, the biomedical spirit overtook me. I read Jenny's book, realized that I did most of the stuff in there at one point or another. I started back slowly, just a little clo. Is that eye contact improving? Hmmm, is he being more conversational? Did he just ask a why question???? OK, suffice it to say I was hooked and more obsessed than ever. I am contemplating the yeast treatment, we have three lac and caprylic acid poised in position and ready to go. Now my son is getting up at 5:45 am every morning. As I sit there trying to drag myself out of bed I start questioning myself- is it the clo? Is it the pro biotic I just started kicking up the yeast beast? The neurotic in me could go on and on and on. The little realist dwelling somewhere deep in my heart tries to feebly argue- 'He is just getting up early, that's all, no more no less'. The debate inside me goes on. Till I get burnt out on it again.
Monday, October 15, 2007
I really have to watch myself. I start perseverating myself on things. This morning when I asked bubs what he wanted to wear on his feet, expecting 'the usual' answer, he pleasantly surprised me with 'I want my new blue crocs, mommy'.