Showing posts with label kids. Show all posts
Showing posts with label kids. Show all posts

Sunday, May 8, 2011

Happy Mothers Day

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Yesterday, the yard people weeded all my plants. I was sad that not only had the life I'd spent a few weeks caring for bit the dust for no good reason other than a landscaper not understanding the difference between plant and weed, I just don't have the funds the to replace them.

But I'm crafty. I don't let poorness get in my way. I emailed my dad, who always has some sort of plant needing homes. I also asked if I could go round my town to take clipping from desirable plants to make grow my own versions.

My dad replied with this interesting tid-bit about my maternal grandmother:


My mother used to take a rose cutting (a good thick stem) and put it in the ground and put a fruit jar over it.  If she kept the soil moist, the rose would take root and grow.  Forsythia will often root right in a flower vase. If you can bend a branch of a bush down and bury some of the stem in the ground (and keep it watered), the stem will pften take root.  Then you can cut it off and plant it.

I then imagined my grandmother, who instead of fulfilling her dream as an independent, working woman in the respectable female profession of nursing, which would have secured her during the Great Depression, she had to be creative. She had to leave school because she got knocked up on her first date with my grandfather. (Shotgun wedding, of course) I imagine that during the early 30s and prior to WWII, she learned how to grow beautiful plants from nothing (or stealing clippings). My dad inherited her green thumb I guess and her amazing ability to make gardening an affordable pursuit.

My mother sent a response, too, since she shares the email address with my dad:

The plant business I will leave to Dad, but do not take cuttings without asking the owners.

I'm sure my mother has vision of me dressed in all black, mask and all, stealthily roaming our small town with a pair of scissors in one hand and black duffel bag in the other. She's probably calculated the bail money it would take for me to be released from federal prison. She might have already contacted a lawyer about a retainer.

The sad thing is is that in our small locale, my banditry would make the front page.

The good news is that for Mother's Day, my husband bought me three replacement plants. They look a little Charlie Brown Christmas Tree-esque, but I know he got a good price. And seeing them by my computer this morning nearly brought me to tears.

My kid told me "I don't care about Mother's Day" first thing this morning, but only because he's too much like me, and medicated. He needs time to absorb the meds and the morning. He let me have a six hour nap today.

So to all your different sorts of mothers out there, enjoy your day.  
 

Thursday, May 5, 2011

Kid Manual: A little mom snark

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Today, I have been working on updating my family calendar, whittling down our to-do list and brain storming exactly how I am going to explain Asperger's Syndrome to my sister who will be staying with us while the husband is in the hospital and during his recovery process. It is all a little overwhelming (I seem to use this descriptor on a daily basis these days) seeing how our calendar is expanding into next year July, my to-do list keeps having baby to-do lists and nothing about autism seems to be simple. Being tired of being overwhelmed, I am starting feel a little snarky and well, it does not take me much to feel irritated.

Being that I am the most unorganized person in the universe, the calendar and to-do lists are in messy piles around my computer. I have scrap papers with dates, phone numbers and things I need to remember all over the place. I have 5 lists to remind me that I need cat litter, dish soap and a three ring binder so that I don't have to have 500 pieces of paper on my dining room table. I keep adding names and addresses to our family's master phone list, which I have two versions of—one on the computer, one hard copy.

I have three calendars. THREE. One is the pretty wall calendar not on the wall because I keep having to write things on it and the tack finally came out from the wall and is now awaiting my foot to find it some really wonderful day. I have pages of printed out monthly calendars spread around me and on top of the pretty wall calendar. Then there is the appointment calendar on our refrigerator, where on one half there is a space to write appointment particulars and the other half lives entire year of 2011, allowing me to highlight important dates.

I am that bad. I need the three calendars. If I didn't have them, I'd be lost at this very point and time. Writing things down three times seems to seal the information into my brain. Plus I can just tell my husband "I dunno, look on the fridge".

The Kid Manual (aka Welcome to Our Asperger's) I intend on writing plagues me the most. How do I explain it? How do I say that I need his future care-takers to re-invent their thinking? How do you tell someone that when your kid says "I hate you", he's really saying "I lack the ability to process and handle this situation at this particular moment in time?". How do you tell another adult, a family member and person stepping in to run your household in a time of great need that they are going to have to re-learn child care-taking from the ground up?

Asperger's affects my son in so many ways, some of them small and subtle and others large and glaringly apparent. When I was talking to my sister about her helping with my son, she said she was going to "put him to work". My stomach dropped. You can't just waltz in and change things with my kid. Yes, he is responsible for cleaning up after himself for the most part. Except there is a big BUT to this statement: Asperger's defines mess and order for my child and thus as his parents we must redefine clean and tidy for ourselves. Our house is never what I would call tidy (it's not filthy either), but I've learned to accept the fact that the kid's favorite pieces of clothing live under our living room end table. His bike lives by our front door. His toys organized by type in two large bins in the living room, the larger guns behind those bins to avoid being scratched. And sometimes parts of trees reside in odd areas inside my home. For the past month, he decided his skateboard should live behind the couch, until his dad convinced his otherwise. Everything has a place, but those places aren't what one would consider typical.

My mother, when she thought she would be able to stay in our home during my husband's surgery, told me I shouldn't worry because she wouldn't put up with any S-H-I-T from the kid. Again, I cringed. I had visions of my son saying, "Grandma, STOP TALKING TO ME!" in a not so polite way. If we were talking about a normal child, then yes, it would be a cause to take appropriate disciplinary action (go to your room and think about it!). But this is an Aspie kid. He's not saying it to be disrespectful; he's just trying to say that his senses are overloaded at the moment and he requires time in which to cope before engaging in conversation. He says it that way because he learned it to be the most effective way to get his needs met. We've worked tirelessly to correct this method of communication, have taken our first steps into the world of "I require a minute to process this, Mom, please" and I don't need it undone. The kid doesn't need it undone either because he is starting to get the effectiveness of polite self-expression when wanting to get his special needs met. And meeting that "stop talking to me" rude-sounding statement with anger is a recipe for a full blown autistic meltdown.

I need my family to accept that my son is autistic; that he has Asperger's and will never grow out of it, but rather into it—he'll meld who he is with the world he lives within to make his life work for him. I need them to accept that it's okay to be different, to meet a child's needs differently than they did with their own children and for my family not have an agenda to show me that as a parent, I am just using autism to excuse bad behavior because I don't have a back-bone. Or something.

I have a child who does not function like normal children and that means I do not function like a normal mother (and 'normal' would never be a word anyone would ever use to describe me either.. apple, tree and whatnot). I need my family to understand that fundamental concept. I need my family to forget what worked with their own neuro-typical children and trust that I know what I'm doing with my Aspie boy. My boy has come a long, long way in the past two years (time my family has not spent watching him grow). It wouldn't take long for someone to undo all that hard work—hard work that my son has put in everyday ever since he found out he was not inherently evil (the stigma of being diagnosed later rather than sooner).

The snarky part? Well, that's me thinking of every clever, witty retort to the anti-Carrie-as-a-mom statements a Kid Manual may garner; so snarky that those responses could find themselves as part of the manual itself. For instance: How do you know its autism instead of bad parenting? Because this dude with lots of letters behind his name, that specializes in children's brains and whom the state of Delaware recognizes as more qualified than you to decide whether or not a child has Asperger's told me that my son was off-the-freaking-charts-no-doubt-about-it an Aspie boy, but if you need more than my word for it, here's a medical release you can take to said doctor to discuss the matter further.

Or maybe there should be a section about why I know my son better than anyone else on this earth and therefore understand what he needs? A section devoted to why I am not taking my family's (constant) parenting advice. It would start with "If you think you need to tell me what I need to do with my Aspie boy based on what you did with your normal kid, please refer to Snarky section of this manual. Otherwise, please pick an appropriate response from the following list:

  • Uh-huh, I understand what you are saying. Thank you for the input.
  • I have tried that, thank you, but it did not work for us.
  • It's a sensory issue, so it requires a different approach. I appreciate your concern.
  • That is a typical behavior for Aspie kids, but we are okay with it.
  • Relax about it.
  • He'll live.
  • I'll live.
  • You'll live.
  • That concern is on our master list. We are addressing the concern that precedes that one in order to better address the one you speak when the time comes in order to achieve the best outcome for my boy.
  • In the big picture, we are okay with that. I'm sorry you aren't.
  • That service is unavailable at the moment/we are wait-listed/it is out-dated/it is not for his particular disorder.
  • If he doesn't like it, it's okay. I don't like seafood/country music/fleece/spiders/cotton balls. It's okay to have preferences and unique tastes. Its okay to not like certain things and fear stuff. Forcing it on him is not okay. He is an individual. Please respect his boundaries, not just as an Aspie kid, but as a human.
  • Please re-read what Asperger's Syndrome means for my boy. You obviously missed something important, which is okay because this isn't easy for anyone.
  • It is really okay for him to not want to hug/be tickled/be touched/have his personal space invaded. It's not you, its him and it will not cause sudden cardiac arrest.
  • My name is on the birth certificate and he lived inside my body for 10 months (yes 10 months, that 9 month thing is a LIE!), plus I've spent 10 years being his mom, so I am using that power to veto your suggestion and/or assertion.
  • My child is not just like your child. If he were, he'd be a clone. So far as I know people have not been cloned yet. I'd be happy to parent the cloned version of your child or vice-versa when the technology is available. At that point, we can test your method. Until then, I respectfully decline to try it your way.
  • Really. If you do not think he needs medication for his ADHD I understand. You go ahead spend the day with him un-medicated, just make sure the first aid kit is stocked and remove any object that can be broken or cause physical damage to a person or my house. As a matter of fact, take him to your house.
  • You can't convince me that 500 grams of sugar is good for any child. Yes, sugar tastes wonderful, but giving too much to a child is like feeding a Gremlin after midnight. If you are confused, please watch the movie before deciding to give my child a lollipop the size of head and insisting he eat it all in one sitting. (You might want to watch the Exorcist as well.)
Somehow I know snarkiness wouldn't be received well, yet it makes me feel better to get it out of my system. Ultimately, I just want my child to have the best support system possible while his dad is having major surgery. I don't want his Asperger's to minimize the fact that this is a scary and overwhelming event for our family, especially the littlest person in it. I appreciate what my family is doing to support us and the kid. With the manual, the kid and acceptance of his specialness come first because without that, no one other than his parents can address his needs. The point in making the Kid Manual is to make this whole process easy for everyone, but most importantly the boy. It's his dad, after all.

The Pooping Brain

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We are at the two week mark. On the 19th, my husband gets to have life-saving, or perhaps quality of life-saving surgery to fix the issue of his hind-brain pooping itself into his spinal canal, mostly. Who knew that 7 months ago, when I started this absurd blog to add more comedy into our lives that it would sorta sum up our family's biggest issue since the whole Cape School District went all Lifetime movie on us?

The greatest thing about my husband's rare, congenital medical condition is that its a rare congenital medical condition. Most doctors only read about it in text books. Google has only 381,000 results when you search the term Chiari Malformation. To give an comparison, Cancer garners 345,000,000 hits. Specific cancers results are still in the millions. If you google my husband's specific for of Chiari there are a meager 7,690 hits.

Trying to explain the whole kit and caboodle to people is difficult. My husband doesn't look sick. He doesn't sound sick. Unless you live with him, you won't notice that he has trouble finding the right words to express his thoughts and slurs them ever so slightly. You don't realize that if he lays his head back too far, he sorta just passes out. You don't see him in moments of dizziness or mental fogs. And he won't tell you about the pain that makes the simplest things difficult-- like getting out of bed or getting out of the car. The symptoms of Chiari Malformations are subtle and most cases can be managed non-surgically, except with the type that is progressive-- his type. That's the kind normally discovered during autopsy.

I'm not sure if the rareness is because its uncommon or that it's subtly means doctors miss it. It's only diagnosed by MRI, ya know, where they see the brain kinda in the wrong place. The way its diagnosed means that before MRI, you were kinda outta luck and therefore, studies on live patients was near impossible. On top of this, there is no recognized or accepted course of treatment...or rather, there is no particular protocol for treatment. Thus, treatment recommendations can vary widely from doctor to doctor.

It gets better: Of patients that have surgery, only 53% are successful and don't need additional surgeries. The rest need surgeries to fine tune or add to the original surgery. This is neither astounding or comforting, except that the surgery will keep my husband's brain from killing him at worst and destroying his neurological function at best.

The one thing that I can say is that if you have a rare condition, every doctor, nurse and tech that treats you gets a medical boner. My husband is officially a rockstar patient that has essentially livened up medical careers of a dozen or so people in the medical field. This is not a bad side-effect of his condition. It's actually reassuring that he is on the mind of everyone on his treatment team-- from his internist to his neurosurgeon, everyone is on the same page. Normally coordination of care is something a patient has to advocate for himself, but not in my husband's case. The medical world of slower, lower Delaware is falling all over him.

Even the kid's neurologist went the extra mile with us at my boy's last med check. Dr. Genius-Awesome-Pants took time out to discuss my husband's surgery and reassure us everything would be a-okay. I know that if I have a question and can't get in touch with any other doctor, Dr. Genius-Awesome-Pants will be there to help.

His words helped the other day:

"You've got a great doctor who knows what he's doing. The surgery is more common than you'd think. With this, they aren't poking around in your actual brain. They do the decompression and fix the covering over the brain, and that's that. It's not like grabbing a tumor where one wrong move damages you. It's structural and the only big risk is infection, barring that, you'll do fine. The youngest patient I've had with Chiair surgery was three and she's 100% recovered now". 
An example of the incision aka "zipper"
Don't know what happened to this photo-- sorry
to whomever I borrowed it from if I did so without credit!! Opps.
Feel free to contact me for my apologies.


Not only was it important for the kid to hear, it meant a lot for us parents. Of course we are worried. It's not like getting your tonsils out. I fell in love with my husband's brain, so I don't want it to change. I just want him to live, have a quality life without pain, and live happily ever after.  I want to laugh every time he uses brain damage as an excuse for doing something stupid, without the "what if" factor. I don't want his brain to poop out of his skull anymore.

We have two weeks until the surgery. We have a world of support and are busy making the preparations for all scenarios. My sister is coming Monday so I can breath a little easier. I can run away when I need to, I can have support when I've calmed everyone's fears.

Another example
Two more weeks until my husband becomes a "zipperhead".

I am updating this to add my husband's actual zipperhead scar. Please feel free to share this image with others to spread Chiari Awareness. This was my purpose in writing this post, along with processing this surprise that turned our family inside out.

His scar is smaller and not zipper-like at all. I don't know if it was done endoscopicly or if my husband's skin was more pliable due to his dramatic weight loss. I do know that he has sutures underneath his skin that extend about eight inches. These have not dissolved yet, so he is still healing and recovering. Life with Chiari is certainly different, but at least it is life. Here is Dr. Sugarman's handy-work:

Regular
With a diagram!!





If you'd like to use you either photo in your own blog, share it with friends and family or show to anyone else you think is fabulous or anyone needing an awareness education, feel free to distribute, but please, no alterations.

Wednesday, May 4, 2011

Entitlement, Facts, Opinions, Respect, Gas

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While You Are Entitled To Your Own Opinions, You Are Not Entitled To Your Own Facts.

Whadda ya mean I'm not entitled to my own facts? I'm entitled to everything else, right? I certainly am entitled to gas below $4.03 a gallon.

Funny I happened upon the above article this morning. I had a friend on that face place post this in her her status:

Let's be clear on this: OBAMA did NOT kill Bin Laden. An American soldier, who Obama just a few weeks ago was debating on whether or not to PAY, did. Obama just happened to be the one in office when our soldiers finally found OBL and took him out. This is NOT an Obama victory, but an AMERICAN victory!! REPOST IF YOU AGREE!!!
I was pleasantly surprised that out of all my conservative or anti-Obama friends (for some reason, my circle seems to contain a lot of people with political views at the extreme opposite of mine), only one dear friend turned the death of Bin Laden into a political sideshow. I am very proud that 99% of the people I call friends, no matter what their personal beliefs, said thank god this is over, good job all and left it at that. (Of course my few zany liberal friends said 'take that birthers') Because I have a big mouth (or large fingers), I posted a rebuttal, using Rush Limbaugh's words as evidence that the 'don't credit Obama at all' thing was horse manure. The Big O, being the boss-man of the soon to be Call of Duty immortalized SEAL Team 6, deserves the appropriate amount of credit for saying "get 'em boys".

See, in the real world, when your employees do a great job they get some credit, but your boss- you know, the guy you answer to- gets some credit, too (and sometimes more credit than the staff). Same happens when you eff the hell up, except, as a boss, you get more credit for failure than the guys following your orders. Why on earth should it be any different for the Commander and Chief? What is wrong for telling people 'good job' even when you don't like them. Hell, I do it all the time! There are TONS of people I dislike, but if they do something pretty stellar and positive, I can swallow all those yucky feelings to say "You did great, congrats".

That's part what being an American is about. It's about putting aside all those ill-feelings we have for those we don't care for, approve of, or like to say "You know, we give credit where credit is due in this country". If we can't thank the Commander and Chief, we surely will forget all the other people in that room with him, the guys and gals supporting SEAL Team 6-- like the person at their home who told them "you can surely be a military dude that can change the world forever", the guy who feed them lunch or put together that package of MRE in a factory somewhere, the people who built the helicopters so you know, they didn't all break into 50 pieces en route to this compound, the first grade teachers who made all these future game changers believe in themselves enough to get this far... the list could go on for hours, I'm sure.

To that list, you could all us whiny Americans and even the one who said "This is not a victory for Obama." If something was ever Anti-American, that sentiment its that statement. We all celebrate, take credit, but we won't give the boss one iota of praise because. Because why? I hated G.W. Bush, but I had enough respect for the office of the president to say "Good job" after 9/11/01 was met with some bombs dropping on country du jour. As a patriot, it is my duty to have respect for whomever is in the White House, regardless of my feelings for them.

As a citizen with a child, it my obligation to teach my son how our democracy works, starting with respecting the positions of leaders and teaching him how to disagree with decorum and dignity. It's my job to teach him to respect the office of president, even when you don't agree with all the President's policies. It is my job to teach him that it's okay to give someone credit for a job well done even if you can't find any other redeeming quality about that person. It's also my job to explain the difference between fact and opinion.

The fact in this life lesson is that Obama holds the title of Commander and Chief with which comes credit for successes and failures. Stating that he doesn't deserve any credit is not an opinion nor a factual statement. It is a down-right fallacy. Those that teach that lie are those trying to destroy the very fabric of our country, are unpatriotic and do the work the terrorists set out to accomplish in the first place.

As for government shut-downs, we've been there, done that. I didn't happen; those leader people worked it out. Almost doesn't count and I'm pretty sure no one wanted to not pay the military. I'm certain that the whole subject is entirely too complex to explain in a facebook post. It was only used in this mass-repost-statusto bolster the argument (and lie that) Obama hates our troops. The concept and it's situation is so grossly misused that it doesn't even deserve more mention than this.

The gas thing is a favorite that ended up as comment in my spirited debate made by this particular friend, that I didn't even address it. The price of gas isn't Obama's fault. It's not the fault of Congress. Again, its complicated, but I get tired of people thinking the government has some sort of magical powers to change the cost of the goods we the people consume. Guess what, it hurts the government, too, when the cost of gas increases-- from the federal to the local levels. It is what is and there is no short term solution. End of story.

Here's the immediate solution: Change your effing budget so you can afford your commute to work. Then kick yourself for buying a gas guzzler. Five years ago, I had a choice-- gas guzzler or fuel efficient. I picked a car that gets 40 MPG on the highway. Then I realized that most everything I need can be found in a 10 mile radius from my house. Yeah, I'd love to go to Target every week, but I can't afford to spend the gas, so I don't. My husband commutes an hour to work, so he takes my fuel efficient car. We plan out our errands so no gas is wasted.

Save gas by thinking before you drive and save money by making a budget. Carpool. Don't continue your gas guzzling behavior and complain about how much money you spend. You are not entitled to 99 cent gas. No one promised that you, ever. What you are promised as an American is the ability to use your brain and mad skillz to overcome obstacles to live as you desire. So get out your amazing calculators, sit down with all your bills, calculate the amount of gas you use week and forecast your financial future on your current route and then start playing with changes.

UPS saved 29 million miles worth of gas last year by eliminating left turns from their routes and if they can figure it out, you can to. As an American, you are entitled to use your brain to find solutions to your problems.