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.