Tuesday, February 27, 2007
In case it matters to you, the complaints are regarding Bubba's related service of language being terminated last school year based only on IQ scores versus language evaluation scores (it was not an IEP team decision) and the nonexistence of or denial of access to Bubba's related services data and records. Nothing to go to Due Process over at this point (he is now being "reevaluated" in language because of my pestering I guess), so I thought I'd chance the complaints. *shrug*
Now I have to figure out how to make up 3 hours of paid work. For now I am going to bed--it's 1:30 AM.
Oh and for those of you who haven't been exposed to special education or special education law, be thankful.
Edited to add that I just spent nearly $18 to mail it next day delivery to get it to the state department of education office within the year time limit (1st occurrence happened on 2/28/06). Ugh.
Sunday, February 25, 2007
A: What do you want for dinner?
B: I don't know, want do you want?
A: I don't know. You decide.
B: I don't want hamburgers, how about roast beef?
A: No, that'll take too long.
B: How about tacos?
A: No, that's too salty.
B: How about pizza?
A: No, I had that yesterday.
B: Come on! Everything I say you say no to. Obviously you have something in mind...what is it?
A: I don't know. I don't know what I want. What do you want?
B: How about soup and salad?
A: No, that doesn't sound good.
B: How about fish?
A: No, I don't feel like fish.
B: Well I'm not going to guess for 30 minutes until I finally trigger your brain so that you can figure out what you feel like eating.
A: How about hamburgers? Yeah, for some reason hamburgers sound good!
By the end I am physiologically ready to explode, complete with tight chest and flushed face and Hubby is usually pretty darn happy because he feels like he has made progress in his decision. Sometimes I feel like I am the problem-solving component of Hubby and my children's brains. Problem is it's like using a map without a key to give directions to someone else in a foreign language...and the orientation keeps changing!!
Friday, February 23, 2007
People in this house often say things that make me giggle. I will put them here.
"Oh the weather! I loooovvvvaaaah watching that!" Bubba joyfully exclaiming when I told him no more movies and turned on the news.
"Oh poopie, I lost my nuts." Hubby after dropping his last two peanuts somewhere in the kitchen.
"I don't pee on the floor, just in my underwear." Bubba remarking in a matter-of-fact voice to Grandma after she reprimanded her dog for dribbling on the floor.
Thursday, February 22, 2007
Me: "Hi baby, are you going nite nite?"
Me: "Are you getting a drink of water?"
Me: "Did you get a new diaper?"
Me: "Do you love mommy?"
Me: "Do you love daddy?"
Me: "Do you love the sky?"
Daddy interrupts to tell Moosie it's time for bed and tells him to say good night. I then hear a soft kissing noise and a grunting noise. Moosie managed to give me a hug and kiss goodnight over the phone.
I love him too.
Wednesday, February 21, 2007
Bubba's remark, for whatever reason done in a British-like accent, after I sat with him for over 30 minutes encouraging him to poop. I demonstrated breathing techniques for him to help him get through the pain (even on laxative he hadn't pooped for FIVE days). It was rather interesting watching him going "EE-EE-EE-EE" and "SH-SH-SH-SH" but it made him feel better, so whatever works.
I could have done without the wildly spraying urine when the big nastiness was released, but that's minimal. And yes, he clogged the toilet again.
Tuesday, February 20, 2007
Later we retraced our steps on the zoo map, Bubba wielding the big black marker that I luckily didn't regret giving to him! I was impressed with his ability to recognize the symbols of the animals and locate them on the map. Moosie of course had to mark up his map as well, so we just practiced animal signs.
Bubba and the roach (and the mysterious pink coat). Bubba loves the insectarium.
Bubba and the seals (and the mysterious pink coat). I didn't take a picture of him trying to hurdle the stone wall and apply a recent lesson on liquid vs. solid. To be fair, the half-frozen, snow-covered pond was misleading.
Moosie doing his version of the sign for "bear." He was pretty tickled by the polar bear playing with the big yellow ball.
Bubba and Moosie calling to the Zebras to come closer.
Sunday, February 18, 2007
Bubba, with the energy no one should have when first waking up, "Mommy, mommy, I had a dream!"
Me, laying sideways with Bubba's sharp toenails kneading my gut, "Was it a good dream?"
Perched on his elbow, about an inch from my face, "Yeah! I was a dinosaur digger."
Moving back to avoid the morning-breath spittle in my face, "A paleontologist?"
Jumping up to his knees, "Yeah! A paleontologist! I want to be a paleontologist when I'm growing up."
A slight pause and then, "Mommy?"
A sigh, "Yes baby."
He looks at me inquisitively, "What do you want to be when you're growing up?"
Tiredly I reply, "Honey, I'm already grown up."
With bright eyes and a look of realization, "Oh, so you want to be a mommy when you're growing up!?"
Well, yes. Yes I do, I thought as Bubba bounced off the bed into the other room to wake up Daddy and Moose.
Once again, my 7-year-old little boy has put it all in perspective.
Friday, February 16, 2007
I can't say that I am a failure at this way of thinking, because my marriage could've easily been over 6 years ago, but I stopped playing the victim and started loving my husband beyond what patterns we had fallen into. How interesting to have the realization that I have forgiven Hubby and myself according to 'their' definition. Also how interesting to realize that I could do it then, but am struggling to do it now in other avenues of my life.
So here's to loving myself beyond what patterns I have fallen into.
So he asks me why I'm gaining weight and I tell him I don't know. He tells me, "Go to the Weight Watchers."
Then he asks me about Moosie (he was with me), so I tell him briefly about the boys to which he replies uncertainly, "Could always be worse?"
At least that's what I thought he said. Did I mention I can't understand him? He has a thick Iranian accent.
So he listened to my heart/lungs, and I left with a psychiatrist's phone number and confirmation that I am a) fat and b) lucky to not be worse off.
Time to switch doctors, but that in itself is so annoying.
Thursday, February 15, 2007
I have taken a liking to Daughtry, which is no surprise since I liked him on American Idol. He has the sound that for whatever reason I am "attracted to," so much in fact that I am adding him to my short list of "mental orgasm" music. So now it's Live, Gary Allan, and Daughtry. There may be a few others...but I'm a born-again music virgin, so it may take awhile...
I'm going to play some right now. *shudder*
Wednesday, February 14, 2007
Me, just walking in the room: Uh, why?
Hubby, looking confused while staring at his chest: Bubba just asked me if I have milk in mine.
Me: laughing uncontrollably
Hubby, still scanning his chest from left to right, increasingly distraught: Do they really look that big????
Tuesday, February 13, 2007
Here they are having fun, and an example of when Moosie's happy dance can be dangerous to someone in close proximity!
Anyhow, Bubba brought me my first and most precious valentine.
"Open it mommy! Open it. It's number 17!" he wailed as he danced excitedly and handed me the Nascar valentine.
You should've seen his oreo-cookie smeared, toothy smile and beaming eyes--that was the real valentine.
Monday, February 12, 2007
Bubba has also perfected a new word. For the longest time he has been saying "Oh damage!" when he gets ticked off by something. He has now graduated to "Oh dammit!" complete with growl. This will be an interesting one to tackle...I just say "Oh darn!" without calling attention to it, which works for a little bit.
Thank you to both grandpas for indirectly encouraging this new development!
Sunday, February 11, 2007
My dad is an engineer. His basement (workshop) is like a hamfest or a surplus electronics store. I am not kidding...it's complete with equipment stacked upon equipment and parts (maybe some even functional as is) hanging out of cardboard boxes. Since this is where my dad spends much of his "at-home" time, this is where we spend a lot of our time when we visit.
Bubba, not having the best impulse control and having the above mentioned love of stuff, can hardly keep his hands off of grandpa's stuff. For years I've been telling dad to make some work bench type thing for him to play with batteries and whirly gigs and lightbulbs and 'stuff' so he can safely 'make stuff happen.'
We gave Bubba an electricity kit for Christmas and he brought it over there last week. My dad was apparently amazed at how Bubba intently lost himself in making things happen. He had motivation and desire. More importantly, he had stuff! And, now, according to my dad, Bubba has "the knack."
Thanks dad, for sharing.
Of course my opinion is based on my experiences, so let me give you a little background. And to be clear, the following does not do my boys justice. They are as beautiful and amazing as they are complicated and confusing. I cannot sum up their personalities or their lives in a blog, so don't expect it.
Bubba is missing his corpus callosum (the part that connects the two hemispheres of the brain) and Moosie has no structural differences although he has had "symptoms" of neurological variance for quite some time.
Bubba was a big (9lbs 4 oz) colicky cranky baby who came out rooting like he was constantly starving. He never wanted to be put down, had to be held "just so," and was always on the go. We knew the day he was born that he was, as the hospital put it, missing part of his brain.
Bubba was in early intervention at 3 months old. Physically, he was hypertonic (increased muscle tone) and it was clear his left side of his body lagged behind his right. An MRI at 3 months confirmed the agenesis of the corpus callosum along with less brain matter on the right side of his brain. The neurologist suspected him to appear as an infant who had had a stroke, but Bubba physically excelled. The only thing we struggled with was"behavior." "Behavior" was the vi sable symptom...inappropriate, unacceptable, untypical, whatever you prefer to call it. Bubba was alway healthy (physiologically speaking, if you are the type to presume disability as not being healthy).
Jump to today, and Bubba has a very short attention span, short-term memory issues, processing issues, sensory issues, self-regulation issues, and the list goes on and on and on. He displays several autistic characteristics, he has learning disabilities, he has coordination issues. Bubba is however a spark, and this is the part that we love and the part that makes us shudder. Depending on the circumstances, he can light up a room or set it on fire. I mean this figuratively and literally.
Moosie, on the other hand, has been very passive and quiet since the day he was born. He was also big (9lbs 12oz), but couldn't even suck my pinky until he was 3 or 4 days old. He couldn't figure out how to nurse until he was 3.5 months old, choked and gagged on his bottles of breastmilk for those first 3 months, and had absolutely no hunger cues, or perhaps he wasn't sure of how to communicate his hunger. We had to wake him to feed him, and it was torture to get him to drink more than 1 ounce. He has mild low muscle tone (distally).
Moosie was happiest being left alone. Since I had Bubba first, I was completely confused when Moosie would cry, even as an infant, to be put down. Even now, he will wonder off, crawl under something, and happily lay there alone fiddling with either his blanket or toy. Moosie did coo, but never babbled or anything after that stage. There were never raspberries, he didn't gesture or respond to much of anything verbal. He did, however, love seeing balls bounce or be thrown and would do what we called (and still call) "the happy dance." We had to fight to get Moosie into early intervention, and he eventually began therapy around 16 months. Moosie was usually pretty physically sick until he was 2, mainly he had gastrointestinal and respiratory issues.
Fast forward to now, Moosie is still sweet, cute, and quiet. He wants to be doing whatever Bubba is doing. This means he wants to have whatever Bubba has and be in close proximity to Bubba at all times. He has some motor planning issues, he only has a few verbal words and about 50 signs. He "happy dances" a lot to things that move (credits in a movie, garage door, flushing toilet) and to anything else that excites him. At three he hovers at 29 pounds, but as long as food is visible or accessible, he'll eat like there's no tomorrow. His ankles still sometimes give out when he runs or dances. Most people can't pass him without recognizing the cuteness factor.
Both boys are very social, though not always "appropriately" in the typical definition. And both boys are attention seeking. Bubba's social issues seem to stem more from his attention span, lack of self regulation, and difficulty with processing. Moosie's seem to be more centered around not knowing what to do in play unless taught first.
The boys are more different than they are alike. Bubba thrives off music, Moosie could care less. Bubba never stops chattering or talking, Moosie rarely makes a peep. Bubba is always on the go, Moosie would rather lay back. Bubba is physically aggressive and explosive. Moosie seems to tire easily. Both boys have absolutely no safety awareness, the difference is Bubba is 7 while Moosie is 3.
**To cure or not to cure**
When Bubba was born, I grieved. I don't think I mourned for the perfect child, more like an easy child, an easy life. I think I was trying to find my way out of a clueless, uncertain, puzzling despair. Absolutely nothing made sense and I was deprived of sleep. So I cried a lot and I tried to replace my fear of the challenging, unknown future with information, which pretty much backfired on my sanity as it has seemed to do recently.
During this quest for information, I specifically remember a conversation on a list serve regarding stem cells...this was over 6 years ago. Many parents were very excited about the possibility of using stem cells to grow a corpus callosum for their children. Even then, I remember how shocked I was at that concept.
To me, the brain is the ultimate definition of being. This wasn't about replacing an arm to function or a heart to live, this was altering his 'self.' Imagining Bubba with a corpus callosum was like imagining a different child. I still cannot separate either of my children from their disabilities. It is all so intricate, all so finely weaved. In my own case, my OCD, anxiety, and depression is the same. Maybe it's the fear of change or adjusting my idea of my own self-concept. I'm having a hard enough time adjusting to my recent short-term memory issues as my "good memory" was such a key to my concept of 'me" (in my perception). I am not saying I would not choose to intervene (I have taken medication for anxiety and depression), but the effects of that treatment had to be taken to consideration on how it altered my sense of who I am. For me, one treatment made me feel so unlike myself, that I couldn't do it. Did it help my depression and anxiety? Yes. But was the result worth losing parts of who I am that I identified with? No. Maybe there is a treatment that is out there that will work just the way I need it to, but I doubt there is anything out there that isn't give and take. I am not willing to give my sense of self at this point in time. Maybe that will change if the benefits of treatment outweigh any pieces of myself that I have to give up.
So with autism, I am reminded that it is a collection of symptoms. To me it serves more as an adjective than as a noun, a liquid rather than a solid, abstract more than concrete. And in every ounce of my being I cannot fathom that a collection of symptoms or something as multifaceted as autism could have just one cause.
With this, do I think autism can be cured exactly? Not exactly...keep reading. Do I think some or all symptoms can be minimized, alleviated, reshaped, etc. be it by medication, treatment, intervention, etc.? Yes. Do I think the same thing done in the same way would have the same outcome for all people with autistic characteristics? No. If all of the symptoms of autism are alleviated, does that mean the person no longer has autism? Well, technically yes since the diagnosis is based on the symptoms existing. If the symptoms don't exist then neither does the condition that is defined by the symptoms. Does that mean every person who had autistic symptoms, but whose symptoms were alleviated are all of a sudden neurotypical? I don't think so. Does that mean all of a sudden autism can come back if medication is stopped, or there is brain trauma, or there's a full moon? Technically, my guess is yes.
I guess what I'm getting at is that there is no one answer. We are complicated processes of chemicals, structures, and experiences. I think this is why I am struggling with some of the extreme messages out there. Should no one with autism be treated or cured? How can you globally make a decision like that? Should everyone be cured? To imply that there is only one cure just doesn't make sense. And to imply that all symptoms can be cured or that there is a "fix all" doesn't make sense to me either.
**Prevention and Treatment/Intervention**
For me personally, prevention, treatment, and intervention are not about fixing, but more about functioning. I think society has generalized functioning into terms of what's most convenient, easiest, and in the majority. Helping my children to function in our home is much different than helping them function outside of my home. I think without intervention, they would not be functioning where they are today. But intervention for me has always had to be balanced while respecting their inner cores, or in other words, what I feel as their "sense of self." That may sound quacky, in fact it probably is. But that's what sits in my gut day in and day out. While my viewpoints may change based on exposure to different ideas and experiences, that fundamental belief has not changed since the day Bubba was born 7 years ago. I realize that "their sense of self" is how I interpret what the are communicating or not communicating to me...I can't get away from perception. But I do my best to listen and to watch.
I don't think anyone can say they are completely against treatment or intervention, as isn't that what parenting is really all about? We are teaching and shaping our children, which are really prevention and interventions based on what we have (or have not experienced) in our own lives. I don't think there is any argument regarding intervention, treatment, or prevention--most likely the battle is over the right intervention/prevention or the purpose of intervention/prevention. And to see the core battle in that, just reflect on your feelings on behavior intervention (do we spank, use time out, rationalize, do nothing) or prevention of dependence on assistance with falling asleep (do we cosleep, have them cry it out, have a structured routine before bedtime).
I think it all goes back to choice and individuality. As I said above, intervention to me is tailored by the natural direction of my children. It is also about functionality and my knowledge of alternative ways to make that functionality possible. It is also about choosing methods that are as least invasive as possible. You know, the whole risk versus benefit judgments we all have to make. And of course risks and benefits are as muddy as the rest of this mess, unless maybe it's about life or death. But we can muddy up that too if you like.
The choices out there are interpreted by me based on my experiences and nonexperiences to date. And my husband doesn't feel the same way I do with everything, as his choices are based on his experiences and nonexperiences to date. So we listen to the choices of our children in the best way we can and trump with our choices when our experiences tell us we should. This doesn't always make it right or OK, but it's how it works. And I wouldn't be honest if I didn't say that how and why I intervene is also based on how my children impact me, my life, and what I can physically or emotionally handle as well as what I willing to compromise or compensate for. This last one is a factor in the overall decision, not the decision-making factor.
**So now what?**
So what does all of this mean? I don't know. I think it means that to me the spectrum of autism contains so many variants at this point that it is nearly impossible to tease out any one cause or treatment. I think the spectrum is about to wrap around us and choke out much progress of new interventions, treatments, accommodations, and acceptance. I feel like it is good that funding is coming, but Lord knows what the funding will be used for. I see so much hate and disrespect in the underbelly of the autism community, it sickens me.
I also don't think the spectrum is linear...it's more like a scatter plot! I have yet to meet or hear of any child or adult with autism who is exactly the same. And it bothers me that we have placed individuals with autism on a linear spectrum. It seems that according to Alison Singer your place on the spectrum is defined by ability. But this definition, if you will, confuses me. For example, Bubba can speak and react, but the way he processes things affects his interpretation and his actions. He is scored as having low-average intelligence. He can't self-regulate and has violent meltdowns. He is very "present," but only he knows how "aware" he is. Since he is constantly "talking" and "interacting" he appears very engaged, but all you have to do is to ask him to repeat what you just said (even just one word), and much of the time he can't. He is very curious and by his questions, it seems he is a sponge. He can recall the strangest of facts. He can recall much usefull information, just not always at useful times. At the same time he has trouble recognizing the sign that his bladder is full before it is too late. If you were to judge him on appearance, his autism-ness would change hourly, situationaly. Moosie can't verbalize, so even if he has a million things to say, until he finds a way to communicate, he can't express them. It is clear he is quite the problem solver, and a doctor predicts he is of high intelligence. He dances around or 'stims' as some say, and takes pleasure in hoarding objects and stuffing his mouth. He is only three--much like his brother at that age, we have no idea what lies behind his doe eyes. So you tell me, who is more affected? And how did you decide? Based on intelligence, ability of social interaction, ability to conform, ability to control one's self, ability to understand information? Ability to recall information on command or at all? Ability to communicate the information understood, how it is interpreted, or how it is recalled?
Are my children "high functioning"? Do my children have a place on the spectrum at all? Does it even matter? Do I even have a right to my opinion? If autistic symptoms are found to be caused by 25 different things and any combination of all or some of them, are we then looking for a cure for autism or something else exactly? I don't think I'm being judgmental here, as I am part of the problem. Both my kids are diagnosed with PDD-NOS, which I am carrying as a ticket to services and funding. You read their background, so hopefully you see the need for some assistance. But note that without the autism ticket, they are "written off." It is not my fault that their disabilities don't fit into an accepted mold. It's not my fault that professionals have recognised this and are reshaping the mold as they cram more and more people under the diagnosis (as one of my son's doctors told me). Regardless, do my children deserve less and by what definition?
And, just to make things more antagonizing, I also am sometimes angered by "disability world" as I have trouble separating the relationship between accepting human diversity and preventing disability. I love my children and I think it's pretty clear that I treasure them and celebrate who they are. But would I drink alcohol while pregnant? No. Why? Because it is shown to harm the development of the fetus. Does this make me a hypocrite?
It's all so complicated.
I thanked Hubby for being patient with me, especially since I have no patience with him under similar circumstances. Then after a hug and a pause I said, "Well, it's not really anything to do with patience, it's more that you just don't have an attention span."
He laughed that laugh that means I nailed it right on the head. So I thanked him for just being him.
I can't always say that we are a perfect fit, but we are the right fit. He knows me and I know him...every quirky, stinkin' issue and every wonderful, blessed strength.
Saturday, February 10, 2007
Then as we were talking, we realized I haven't been like this for a few months. And the last time I was like this was when I has having those weird nauseous, near fainting, then extreme fatigue bouts. Last weekend I had one during the day (usually I have them at night) and then I felt like I had the shit kicked out of me. This last time, my mother-in-law came over as I could barely keep my eyes open...then I slept for over 12 hours. Again it seemed very coincidental with my menstrual cycle (sorry). And again I feel as if I have been catapulted into some obsessive compulsive depressive anxiety hell. And the daily fatigue is back. My short-term memory loss is also scaring me....but that's normal I guess?
And Hubby is the one who was spelling some of this out for me. He said I went downhill after Bubba's IEP meeting last month (which I haven't posted about). I took a Xanax because I was so anxious.
I don't know what it all means, but Hubby said it's time to go to another doctor...but who? What kind? My primary care is of no help, my OB is limited. I was supposed to go to a psychiatrist...but I'm not too keen on getting back on the medication merry-go-round. This crap was much worse when I was on Lexapro and stopped when I weaned off of it...until now...but maybe that was just coincidental.
And to think, last month I was bragging about how happy and in line everything seemed to be. Not easy, not less challenging, it just seemed to make sense and work. Now I'm back to trying to force myself to function on some levels. And those nauseous, dizzy episodes scare me to death, because I think I'm going to die. I don't think they are panic attacks, but they quickly lead to them! I don't want to go back to being afraid of when they might pop up.
OK. I'm going to bed. Tomorrow is another day. And I am very thankful for my Hubby who gave me the best hug ever. Sorry for the gripe, but felt I had better be honest to my 3 or 4 readers!
Anyhow, I am obsessed with autism and disability right now, and it has nothing to do with my boys. I'm just interested and eager and can't stop reading, watching, interpreting, reflecting, wondering, writing, analyzing, reconsidering, etc....so I have been way out of control the past week and need to cool it.
I have learned to cool it when it starts impacting my daily functioning (i.e., working, cleaning, um...interacting with my children and husband!), which I think I can say it is getting to that point. So, I'll be back eventually. Maybe a few days, maybe longer.
Until then, chew on this, and this, and this. You can get lost in it...as I did. I'm done for now. It's too much.
I was talking through some of my feelings with a great friend, and she reminded me that this is a movie for people have no awareness of autism, but most importantly a movie to get funding. I understand this, but I don't like it. She reminded me that this is to appeal for support, which I get. I just wish it would appeal for more understanding rather than pity, I guess.
I think the core pieces of the movie that bothered me were more about parenting rather than the message of the movie. Specifically, I can't get the "bridge lady" out my head (to the point where it wakes me up, which is why I am typing this at 6am). The "bridge lady" is the mom who spoke of her near plummet off a bridge with her daughter who has autism. She stated the only thing that kept her from driving off the bridge was her other daughter who didn't have disabilities.
This ate through me...I've been in that despair before, years ago. Not specifically over Bubba, just over life at that time overall. I remember the nastiness and deep pressure in my chest that called to me to just "get out." I am not doubting this woman's despair. The thing that really shocked me was that she discussed this agony and desire to kill herself and her child with her child in the room. You can tell me the child has autism, the child doesn't understand, the child doesn't feel, the child doesn't get it. Don't. I'll smack you. Thankfully, the little girl had briefly moved out of close proximity...
The other item that floats around in my head at night is the woman who is standing on the stairway holding the hand of her son who has autism. She cries about heartbreak and how much pain he is in, how much of life he is missing. Yes, he standing right next to her. He doesn't appear to be in pain, though I can't assume. Regardless, I still have issues with the mom basing the value of this little boys life based on what she thinks his life should be like. The thing is, that softness in his eyes, the gentleness of his soul just pours out, and he reminds me so much of Moosie.
And, a little bit over the top, but where are the men in this movie? There is a dad in the background, but he doesn't get to express his feelings. (By the way, Hubby, who isn't nearly as intense and extreme as I am about fell out of his chair when "bridge lady" told her story.)
And finally, the mom who says her child will never get married. I remember when Bubba was a few months old and I had researched a few too many hours (days, weeks) on agenesis of the corpus collosum. I remember crying as I mourned, among other things, that Bubba may never get married, never have children, yada yada. And then eventually I realized, who am I to decide this? I can't predict that. I can't control that.
I can't control autism. You can't control autism. I can't control my children. (Well, that one's obvious!) But I can guide, support, teach, shape, but most importantly love my children.
I am still struggling with how I feel about that Autism Every Day movie.
I am still struggling with how I feel about autism.
I am still stuggling with if I even have the right to have a strong opinion on this movie.
I am still stuggling with if I even have the right to have a strong opinion on autism.
Friday, February 9, 2007
Bubba was most impressed by the museum at the main level and by the rotunda.
He was disappointed that he didn't get to meet the governor, but I did show them where "the governor works."
Me and Moosie, along with some friends, were introduced to the state Senate from the visitor's gallery as guests while Bubba stayed with other friends at the Autism rally in the rotunda. Me and Moosie also visited our house representative. It was not a good sign when he questioned "Don't they send those kids to XXXX?" I mentioned the importance of all children being included in the community as they will grow up to be adults in the community; and all children deserve the opportunity to foster relationships and natural supports in the community....yada yada yada. I might have as well been saying "yada yada yada." That discussion was pretty rough.
Afterwords, I suggested to our group to have a photo taken in front of the building. This idea was short lived, as in the second it took me to get out my camera, Bubba was up the stairs and around the pillars where there is a substantial drop off. And each time we would reach him he would go up even more stairs. Later he told me that he was scared of going down the stairs. I'm guessing then, logically, the only other option was to continue to go UP the stairs. I didn't take the below picture, but you get an idea of how many stairs there are, and you get the idea of trekking up after Bubba with Moosie in tow.
The short adventure ended with me then having to escort a peeved, tantruming Bubba back to where we parked. Yeah, it was fun. And another member of the group would poke fun at me and say "Wow, you're a really bad parent." (Joking with me as this is a comment I hear or feel often as a parent of a child who can't self-regulate.)
Surprisingly, I hope to go up there again when daddy can go with us. I think he and the boys would enjoy spending more time in the museum and on the capitol grounds.
Wednesday, February 7, 2007
Of course I am one of those rare people who gains weight on a day where I have eaten nothing and have set much, um, stuff free. Of course I'm also one of those people who thinks when I feel this shitty (ha ha ha), I should eat ice cream to make myself feel better, even though it'll torture me in the end (jeez, I can't escape the bad puns!). Whatever.
Most frustrating is that I lost out on 3 good, motivated work hours this morning, which requires me to steal from my shrinking surplus of unmotivated work hours tonight (I already used up 3 this afternoon).
Tomorrow is the day we are trekking to the state capitol to do some advocating. The boys and I have to be ready by 7am. This should be interesting! Especially since Hubby took the boys to my dad's house so I can work tonight, and with our luck, the boys will be in bed by 10, but not asleep until midnight. Again, whatever. I'll worry about that tomorrow-ish.
Tuesday, February 6, 2007
While I appreciate the point that autism changes a family’s life, this movie gave me a feeling of devastation and hopelessness as opposed to appealing for support and understanding. As a mother of two children on the spectrum, I would never speak about my children’s neurodisabilities in front of them in such a heart-wrenching, discouraging way...nor would I want them to be exposed to any predetermined expectations of what they won’t achieve in their lives. No parent has any right to set limits on a child with or without disability.
How we as parents ‘deal with’ our children’s autism should not determine their worth as human beings. I’m much more concerned about the message I’m sending to my children than one I’m sending to an onlooker. As I tell my family and friends, support our family, try to understand our family, but don’t pity our family.
We have bad days…some days are really really bad. We have good days…some days are really really good. Yes I left my career, my life has changed, priorities have changed, my marriage has been through hell and back, etc. But my most difficult struggle is supporting and helping my children without trying to “fix” them. I haven’t given up my life for my children, I have instead discovered what life is really about.
Bubba is very concerned about the possibility of slimy poop and is constantly reminding us of the "square waffle poop" he had on Superbowl Sunday. Thankfully he flushed the toilet before I was forced to act excited about his artful deposits. And doubly thankfully, daddy cleaned up the 7-year-old poopy-pants nastiness (i.e., threw the underwear in the bathroom sink where they remained for 2 days).
Bubba also asks every time I say "Daddy is in the bathroom" if daddy is in fact making a "snake poop" or a "pine cone poop." I am truthful when I reply "I have no idea and I don't want to know."
Moosie, wanting to be part of the fun has decided to go for the family title of the stankiest bowel movements. He just walks around inconspicuously with a little shuffle as Bubba scrunches his nose and says in his little 'twang,' "Whutz that schmell?" To which Moosie eagerly points to his chest, and with a big smile and wide eyes exclaims "EEEE! EEEE! EEEEE!" until someone acknowledges that he does in fact stink.
I of course am a female, so I don't shit...I eliminate waste.
Sunday, February 4, 2007
My favorite line from this credo is "Do not try to fix me because I am not broken. " I cried when I read these words, and I felt a sudden, desperate release of pressure and stress. I hadn't realized it until that very moment that my life was centered around 'fixing' Bubba and Moose. The unfairness to them and my unwillingness to see them as perfect for who they are became glaringly obnoxious. Reading that statement was one of my most life-changing moments. I remember where I was, who was in the room, and everything I was feeling emotionally and physically.
Today I was preparing packets for my legislators, and thought this credo as appropriate to include. Read it. Send it to everyone you know. The message might not get you now, but it will catch up to you later...when you're ready. I'm not sure who wrote this, but I thank them.
Recognize that my disability is an attribute.
Do not see my disability as a deficit.
It is you who sees me as deviant and helpless.
Do not try to fix me because I am not broken.
Support me. I can make my contribution to the community in my own way.
Do not see me as your client. I am your fellow citizen.
See me as your neighbor. Remember, none of us can be self-sufficient.
Do not try to modify my behavior.
Be still and listen. What you define as inappropriate may be my attempt to communicate with you the only way I can.
Do not try to change me, you have no right.
Help me learn what I want to know.
Do not hide your uncertainty behind “professional “distance.
Be a person who listens and does not take my struggle away from me by trying to make it all better.
Do not use theories and strategies on me.
Be with me. And when we struggle with each other,
let that rise to self-reflection.
Do not try to control me. I have a right to my power as a person.
What you call non-compliance or manipulation may actually be the only way I can exert some control over my life.
Do not teach me to be obedient, submissive, and polite.
I need to feel entitled to say NO if I am to protect myself.
Do not be charitable towards me. The last thing the world needs
is another Jerry Lewis.
Be my ally against those who exploit me for their own gratification.
Do not try to be my friend. I deserve more than that.
Get to know me. We may become friends.
Do not help me, even if it does make you feel good.
Ask me if I need your help. Let me show you how you can best assist me.
Do not admire me. A desire to live a full life does not warrant adoration.
Respect me, for respect presumes equity.
Do not tell, correct, and lead.
Listen, support, and follow.
Do not work on me.
Work with Me.
It's going to be tough for many reasons, but mainly it hurts to be on my feet (aka exercise) because of my tarsal tunnel and nerve issues. But I'm going to try and do more ball and core exercises to combat that. If I could lose 15 to 20 pounds, I think my feet would be remarkably better.
I have set up rewards for myself for every 5 pounds lost. It was really difficult figuring out rewards that are nonfood based and things I wouldn't just do/buy anyhow! My big big BIG reward is that if I lose 40 pounds (not impossible, but something I haven't weighed for 10 years) and maintain that weight for 6 months, then I am getting a hot tub. Do we have money for a hot tub? No. Do I care about that right now? No. So don't discourage me you nay sayers!
So 1 Slimfast shake and 1 watter bottle down...here I gooooooooooooo........
Saturday, February 3, 2007
A Rolling Girl Gathers No Moss
With a whir of her arms
and a flip of her legs
she plops on the ground
and rolls in a daze
A rolling girl gathers no moss
Through a blackberry bush
she picks up some thorns
that prick her like needles
but she just rolls on
A rolling girl gathers no moss
She flies beneath the clouds
catch her if you can
she’ll just roll faster
only time rolls past her
A rolling girl gathers no moss
Friday, February 2, 2007
It made me happy that my dad did not recognize this as the response of a smart ass, but as the response of a child who processes things just a little differently.
Thursday, February 1, 2007
On the way to Bubba's sensory integration/occupational/self-regulation/whatever-you-want-to-call-it therapy I was upset that Bubba refused to let me sing. This happens often:
"Mom, Kidz Bop 7."
I insert the requested CD, a song plays.
"Not this one!"
I pause for "nice words."
"Not this one please."
We repeat this through about 15 tracks until we get to the song.
Bubba loves to sing as do I. Bubba loves to shake it as do I. You'd think listening to music [no matter how crappy it is] would be something we could enjoy together.
If he hears even a slight hum escape my lips, all heck breaks loose.
"NO SINGING MOMMY!!!!"
So I try to bop my head a little bit because the energy of the music has to come out somewhere.
"NO MOVING YOUR HEAD MOMMY. JUST DRIVE."
So I "just drive" because when Bubba is as agitated as he was today, it's just not worth the fight. And as Moosie kicks and squeals behind my seat in response to his brother's singing (or most likely due to me not singing), I contemplate this very thing... why can't Bubba and I even enjoy something like music together? And then the word "knot" comes to my conscious. And then the latest analogy from the darkness tumbles forward infiltrating my pouting.
This 'journey' I have embarked on is much like the knotted jewelry mess in my jewelry box. If you open my jewelry box, you'll find a rats nest of jewelry. One day long ago, Bubba and/or Moose discovered my jewelry box and days later I discovered they had discovered my jewelry box and vowed to pick through the mess.
I don't wear much jewelry anymore, so it hasn't been a priority, but I'm pretty sure in the mess I'd find shiny pieces, tarnished pieces, things I'd think would be worth something but aren't, things that look like junk but are worth some money. I'd also find some items, like my wedding ring, that are not perfect, but each imperfection, scratch, and ding stand for so much that the items could never be tossed or replaced.
I wouldn't come to these realizations suddenly. It would be gradual. I would spend hours picking through knots of gold and silver chain wrapped around lockets and stones. It would be tedious, frustrating, sometimes rewarding, sometimes emotional such as when I finger an old ring of my mom's or accidentally snap a necklace that Hubby gave to me in high school. Each piece would have its story, I would remember each story, chronicled by the buried, tangled evidence.
Most importantly, if I would go through my knotted jewelry, it would not be without casualty and reflection and not without realization that the next day it could all end up in a knotted pile once again.
So I continue on my journey, as I discover, make mistakes, dive in and detangle myself from the mess, sometimes getting caught up in the shiny things and other times overlooking them, sometimes becoming overwhelmed by the tarnished items and other times ignoring them, sometimes enjoying the process while other times just hoping that this newest knot would be the last one as I am tiring...but the treasure revealed is enough to keep me going.
I told you my analogies only half make sense.