Friday, December 28, 2012

The "Truth" About Autism and Honesty


Thank you. I already got this!


Thank you. Why does everyone get me the same thing?




Chances are you have probably heard this from my ever so sweet and darling 6 year old if you’ve been around him much in the last month or so.  And you’ve probably seen the look of horror on my face or my awkward whispers in his ear as I’m trying to convince him (unsuccessfully) that he doesn’t have that 

e-x-a-c-t one or that two is always a good idea.





And there’s a good chance that you have wondered if I am raising a spoiled brat with no manners.





Let me add a few caveats before I try to defend Caden (and my parenting).  Let me be the first to say that I wish Caden wasn’t so fascinated by his own toots or his burping abilities. We live on the frozen tundra so I wish he wasn’t always running around the house in boxer shorts and nothing else (but I should point out that if it were summer he’d probably be completely naked so be careful what you criticize here).  It’s only in my dreams that he actually wants to brush his teeth or wash his face.  And I’d absolutely love if he wasn’t currently terrified of utensils so that he could eat with something other than his hands. Having said that…..





I know that his responses to receiving duplicate gifts aren’t exactly acceptable or commonplace in polite society.  But here’s the thing: polite society allows room for “little white lies.” You know that thing that allows you to smile and say fine when someone asks how you are doing in the midst of a crisis. Or the thing that has you say oh I don’t need anything when you could really use all of the help that you could get.  It’s that thing that has us say oh I’m full when we’d love to have the last brownie on the dessert platter but know it is more polite to leave it in case another guest wants it.  It’s the thing that has us say oh it is really no problem when in fact it is a huge gigantic glaring problem.





When you really think about it, those little white lies can complicate our lives. You have to remember that you said them in the first place and you have to work pretty hard to make sure your nonverbals and delivery match the words that are coming out your mouth.  You have to work to not sound sarcastic or judgmental or insincere when in fact you are telling a flat out lie—polite or not. 





I guess this is one regard in which autism actually makes Caden’s life easier.  He doesn’t lie.  He says exactly what his mind is thinking in whatever words he has available to him.  He sees the world in black and white and not coincidentally he speaks in black or white.  Communication is hard enough for him—trying to find the word and figure out how to pronounce it causes all kinds of anxiety and sometimes even an anxious stutter.  If he had to navigate a “polite” filter on top of that, I think it would all be too much for him to process. By the time he had it all figured out, the situation would be over and done with.  Not having a “filter” removes one more communication challenge for him.  





It has nothing to do though with being polite.  He always starts with thank you before he makes his observation.  And that’s all it is---an observation.  It isn’t a critique or a judgment or any type of poor behavior. It is just an honest reflection of what Caden knows to be true.





While this level of honesty isn’t much appreciated in “polite society” it does ensure that I always know exactly how and what Caden is feeling.  If I ask if he likes something and he says yes then I know he genuinely does and if he says no then I have that information as well.  I know that if I ask his opinion, it is his honest and unfiltered opinion that I am going to get.  I have to say most days I really appreciate that.





Although he could have kept quiet about mommy having “old eyes”……..

The "Truth" About Autism and Honesty


Thank you. I already got this!
Thank you. Why does everyone get me the same thing?

Chances are you have probably heard this from my ever so sweet and darling 6 year old if you’ve been around him much in the last month or so.  And you’ve probably seen the look of horror on my face or my awkward whispers in his ear as I’m trying to convince him (unsuccessfully) that he doesn’t have that 
e-x-a-c-t one or that two is always a good idea.

And there’s a good chance that you have wondered if I am raising a spoiled brat with no manners.

Let me add a few caveats before I try to defend Caden (and my parenting).  Let me be the first to say that I wish Caden wasn’t so fascinated by his own toots or his burping abilities. We live on the frozen tundra so I wish he wasn’t always running around the house in boxer shorts and nothing else (but I should point out that if it were summer he’d probably be completely naked so be careful what you criticize here).  It’s only in my dreams that he actually wants to brush his teeth or wash his face.  And I’d absolutely love if he wasn’t currently terrified of utensils so that he could eat with something other than his hands. Having said that…..

I know that his responses to receiving duplicate gifts aren’t exactly acceptable or commonplace in polite society.  But here’s the thing: polite society allows room for “little white lies.” You know that thing that allows you to smile and say fine when someone asks how you are doing in the midst of a crisis. Or the thing that has you say oh I don’t need anything when you could really use all of the help that you could get.  It’s that thing that has us say oh I’m full when we’d love to have the last brownie on the dessert platter but know it is more polite to leave it in case another guest wants it.  It’s the thing that has us say oh it is really no problem when in fact it is a huge gigantic glaring problem.

When you really think about it, those little white lies can complicate our lives. You have to remember that you said them in the first place and you have to work pretty hard to make sure your nonverbals and delivery match the words that are coming out your mouth.  You have to work to not sound sarcastic or judgmental or insincere when in fact you are telling a flat out lie—polite or not. 

I guess this is one regard in which autism actually makes Caden’s life easier.  He doesn’t lie.  He says exactly what his mind is thinking in whatever words he has available to him.  He sees the world in black and white and not coincidentally he speaks in black or white.  Communication is hard enough for him—trying to find the word and figure out how to pronounce it causes all kinds of anxiety and sometimes even an anxious stutter.  If he had to navigate a “polite” filter on top of that, I think it would all be too much for him to process. By the time he had it all figured out, the situation would be over and done with.  Not having a “filter” removes one more communication challenge for him.  

It has nothing to do though with being polite.  He always starts with thank you before he makes his observation.  And that’s all it is---an observation.  It isn’t a critique or a judgment or any type of poor behavior. It is just an honest reflection of what Caden knows to be true.

While this level of honesty isn’t much appreciated in “polite society” it does ensure that I always know exactly how and what Caden is feeling.  If I ask if he likes something and he says yes then I know he genuinely does and if he says no then I have that information as well.  I know that if I ask his opinion, it is his honest and unfiltered opinion that I am going to get.  I have to say most days I really appreciate that.

Although he could have kept quiet about mommy having “old eyes”……..

Friday, December 21, 2012

Momma Drama: The Dentist Part 2


Since I opened the whole dental phobia disclosure can of worms and because so many people kindly responded either to my blog post or to me privately via email, I suppose I should continue the saga for your horror or amusement (just depends how closely you are related to me I guess).





Supposedly repeated exposure will desensitize you.  I’ve certainly had enough dental appointments in the last 8 weeks that I should be desensitized numb by this point. But I suppose that wouldn’t make for a very interesting blog and I’m almost certain my husband would have to call me out for altering reality as we live it!





Trauma (I mean appointment) 1 was to remove all of the silver fillings on my lower teeth. The dentist was convinced a “little valium” would make the first appointment “go smoothly.”  For once I was in FULL medical compliance with taking a medication and I sincerely believed that valium was the answers to my dental prayers.  I was a little worried that I didn’t feel very relaxed when my husband dropped me off at the dentist but nowhere near as worried as the dentist when I refused to take my coat off or put my feet up in the chair.  There are also unsubstantiated claims that I was trying to figure out how to open the window; thankfully the dental office is on the first floor although I’m not entirely sure that would have mattered. After some negotiation we agreed that I would stay for the entire appointment and he’d give me gas for “relaxation.”  I put my big girl panties back on and only cried through part of the appointment.





Trauma or Drama 2 was the consultation with the oral surgeon.  I’m pretty sure I went through an entire inhaler of asthma medication in the waiting room alone.  My husband is a pretty wise guy though and didn’t drop me off for this one; he sat in the waiting room and held my phone, coat, and keys hostage.  Michelle is kinda my hero at the oral surgeon’s office though. In a matter of seconds, right after she took my pulse and blood pressure in fact, she marked on my file in bold red ink phobia. A few moments later she may have marked that out and added TERROR with multiple underlines. The surgeon claimed to be a nice enough guy but seriously I’m not falling for that—how nice can anyone who goes into dental torture really be. I tried to warn him, as did Michelle, about my fear and we both cautioned him to move slowly.  He made a sudden movement and while I can’t confirm anything, it is ***possible*** that he was bitten in the process.  No negotiation was necessary; he “highly suggested” sedation for each part of the surgery. And then it was scheduled by my husband.





Honestly the only thing that prevented me from kicking and screaming my way into the surgery appointment was the fact we had our precious son with us and I didn’t want to terrorize him.  Thankfully Michelle was once again there (by the way it is also ***possible*** that I made her pinkie promise at the first appointment that she would be with me through this entire process) and while I’m not saying it was premeditated I do think it was convenient that the only bathroom they would let me use had bars on the window.




Full sedation was the plan but the surgeon ended up deciding to use gas first since he couldn’t “catch a moving target.”  Not my fault he couldn’t catch my vein to start an IV because I was shaking so hard.  I showed up, what more could they really ask.  More sedation than planned later, the first part of the surgery was over and predictably I was in recovery bawling and saying stupid things. 





This past week I had the silver fillings replaced in my top teeth and I guess it was okay.  I’m fairly confident before long the dentist and oral surgeon will start sedating me from home and transporting me to their offices but at least they finally understand I mean what I say when I claim to be absolutely terrified of all dental procedures.  Surgery part 2 is scheduled in March and I won’t embarrass my family members by telling you exactly how many days and hours and minutes that is away.  I will go on record though as saying if the dentist asks me one more time if I am feeling better about all of this, I may just have to go ahead and bite him (again). 


Momma Drama: The Dentist Part 2


Since I opened the whole dental phobia disclosure can of worms and because so many people kindly responded either to my blog post or to me privately via email, I suppose I should continue the saga for your horror or amusement (just depends how closely you are related to me I guess).

Supposedly repeated exposure will desensitize you.  I’ve certainly had enough dental appointments in the last 8 weeks that I should be desensitized numb by this point. But I suppose that wouldn’t make for a very interesting blog and I’m almost certain my husband would have to call me out for altering reality as we live it!

Trauma (I mean appointment) 1 was to remove all of the silver fillings on my lower teeth. The dentist was convinced a “little valium” would make the first appointment “go smoothly.”  For once I was in FULL medical compliance with taking a medication and I sincerely believed that valium was the answers to my dental prayers.  I was a little worried that I didn’t feel very relaxed when my husband dropped me off at the dentist but nowhere near as worried as the dentist when I refused to take my coat off or put my feet up in the chair.  There are also unsubstantiated claims that I was trying to figure out how to open the window; thankfully the dental office is on the first floor although I’m not entirely sure that would have mattered. After some negotiation we agreed that I would stay for the entire appointment and he’d give me gas for “relaxation.”  I put my big girl panties back on and only cried through part of the appointment.

Trauma or Drama 2 was the consultation with the oral surgeon.  I’m pretty sure I went through an entire inhaler of asthma medication in the waiting room alone.  My husband is a pretty wise guy though and didn’t drop me off for this one; he sat in the waiting room and held my phone, coat, and keys hostage.  Michelle is kinda my hero at the oral surgeon’s office though. In a matter of seconds, right after she took my pulse and blood pressure in fact, she marked on my file in bold red ink phobia. A few moments later she may have marked that out and added TERROR with multiple underlines. The surgeon claimed to be a nice enough guy but seriously I’m not falling for that—how nice can anyone who goes into dental torture really be. I tried to warn him, as did Michelle, about my fear and we both cautioned him to move slowly.  He made a sudden movement and while I can’t confirm anything, it is ***possible*** that he was bitten in the process.  No negotiation was necessary; he “highly suggested” sedation for each part of the surgery. And then it was scheduled by my husband.

Honestly the only thing that prevented me from kicking and screaming my way into the surgery appointment was the fact we had our precious son with us and I didn’t want to terrorize him.  Thankfully Michelle was once again there (by the way it is also ***possible*** that I made her pinkie promise at the first appointment that she would be with me through this entire process) and while I’m not saying it was premeditated I do think it was convenient that the only bathroom they would let me use had bars on the window.

Full sedation was the plan but the surgeon ended up deciding to use gas first since he couldn’t “catch a moving target.”  Not my fault he couldn’t catch my vein to start an IV because I was shaking so hard.  I showed up, what more could they really ask.  More sedation than planned later, the first part of the surgery was over and predictably I was in recovery bawling and saying stupid things. 

This past week I had the silver fillings replaced in my top teeth and I guess it was okay.  I’m fairly confident before long the dentist and oral surgeon will start sedating me from home and transporting me to their offices but at least they finally understand I mean what I say when I claim to be absolutely terrified of all dental procedures.  Surgery part 2 is scheduled in March and I won’t embarrass my family members by telling you exactly how many days and hours and minutes that is away.  I will go on record though as saying if the dentist asks me one more time if I am feeling better about all of this, I may just have to go ahead and bite him (again). 

Sunday, December 16, 2012

Special: Everyday


I’ve talked a lot in the past about taking things for granted and I’ve even claimed that I think special needs parents take fewer things for granted because every milestone is a mountainous victory.  And I still think that is true, in context.  When it comes to my son and autism, I know how amazing it is that he was able to read 18 sight words this past week in autism therapy and that his karate teacher said he was one of the most focused children in the class (and even complimented Caden for always being willing to give class another chance after every epic meltdown…..and boy have there been a lot of meldowns associated with starting karate). Words can’t express how overjoyed I am that he is getting to hangout in first grade for math class and even to do some literature work.  He’s so proud of being able to go into the first grade classroom and his bitter disappointment over being in kindergarten again this year is lessening just a bit.  Last night he spontaneously told his daddy that he loved him and then followed that with I love mommy and daddy. No prompting, no scripting, just spontaneous language.  And I hold that sentence near and dear to my heart because I know that it isn’t something we were guaranteed.





But I’ve come to realize that I didn’t apply my “not taking life for granted” skills outside of the autism box.  Yes I’ve come to terms that life is always going to be a balance when you have two children who don’t have properly functioning immune systems.  There is always going to be a part of me that has to struggle over whether Caden should continue in his charter school where germ exposure is high but he has a chance to test and develop his social skills. I will probably worry about Ryley each time she starts a new competitive sport; are we pushing her health limits too far or is this challenge, distraction even, great for her overall mental wellbeing.  So the health issues aren’t taken for granted in my mind as long as they are related to a condition they are already diagnosed with or that is associated with their diagnosis.





See I never imagined that my daughter would wake up one morning with a migraine that simply doesn’t go away.  She’s on day 34 now of a nonstop migraine.  I actually had a migraine the other day and the pain was indescribable; I was literally incapacitated until the migraine meds kicked in.  That was one day. She is on day 34. Not only that she is experiencing the migraine on both sides of her head and they are causing memory loss, disorientation, slurred speech, and difficulty with concentration.  We are working closely with a team of doctors but so far we haven’t been able to do anything to help lessen or alleviate the pain. 





So is the assumption about the pain?  In some regards yes. As a mother the thought of my child in constant pain is overwhelming.  But the real assumption violation was about independence and development. For the last few years we have been working really hard to teach Ryley how to be safely independent. She has taken babysitting classes; we have been working on her knowing her allergies, being able to identify her medications, keep her cell phone with her at all times, and how to handle as many emergencies as we could conceive of.  Remember afterall this is the child who once developed an escape plan in case wild teenagers broke into our house.  But now the memory loss makes it impossible for her to be left alone.  Unfortunately she remembers her former independence and hasn’t’ quite come to grips with the loss.





Neither have I though. I never dreamed that the child who was more than capable of earning As would become rendered unable to achieve those academic standards or that we would need to regress and start breaking down multiple steps for her again.  Maybe the hardest part is that I have no idea if this is her new normal. 





Hope is never lost in our family and I guess this is one of those twists in the journey that is horribly painful now but that will teach yet another invaluable lesson to us—nothing in life, special needs or otherwise, can be taken for granted. Every moment we have with our children, the great moments, the not-so-great moments, and every moment in between is precious time with our children.  My vow is to remember how precious their lives are to me. I will be giving hugs and kisses more often than my oldest would appreciate and I will be tucking them into bed even if that means on top of the bed in one’s case since she would rather not have to make a bed in the morning.  I’ll try to turn email off a bit more and say yes to silliness when I can.  In short I’ll work much harder to realize that nothing on this journey can or should be taken for granted because you just never know when it will all change.





As a bonus this time, check out my lovely daughter who is the December Featured Sibling of the Month on Shout Out (an online magazine for siblings of kids with autism): Sibling of the Month: Ryley

Special: Everyday


I’ve talked a lot in the past about taking things for granted and I’ve even claimed that I think special needs parents take fewer things for granted because every milestone is a mountainous victory.  And I still think that is true, in context.  When it comes to my son and autism, I know how amazing it is that he was able to read 18 sight words this past week in autism therapy and that his karate teacher said he was one of the most focused children in the class (and even complimented Caden for always being willing to give class another chance after every epic meltdown…..and boy have there been a lot of meldowns associated with starting karate). Words can’t express how overjoyed I am that he is getting to hangout in first grade for math class and even to do some literature work.  He’s so proud of being able to go into the first grade classroom and his bitter disappointment over being in kindergarten again this year is lessening just a bit.  Last night he spontaneously told his daddy that he loved him and then followed that with I love mommy and daddy. No prompting, no scripting, just spontaneous language.  And I hold that sentence near and dear to my heart because I know that it isn’t something we were guaranteed.

But I’ve come to realize that I didn’t apply my “not taking life for granted” skills outside of the autism box.  Yes I’ve come to terms that life is always going to be a balance when you have two children who don’t have properly functioning immune systems.  There is always going to be a part of me that has to struggle over whether Caden should continue in his charter school where germ exposure is high but he has a chance to test and develop his social skills. I will probably worry about Ryley each time she starts a new competitive sport; are we pushing her health limits too far or is this challenge, distraction even, great for her overall mental wellbeing.  So the health issues aren’t taken for granted in my mind as long as they are related to a condition they are already diagnosed with or that is associated with their diagnosis.

See I never imagined that my daughter would wake up one morning with a migraine that simply doesn’t go away.  She’s on day 34 now of a nonstop migraine.  I actually had a migraine the other day and the pain was indescribable; I was literally incapacitated until the migraine meds kicked in.  That was one day. She is on day 34. Not only that she is experiencing the migraine on both sides of her head and they are causing memory loss, disorientation, slurred speech, and difficulty with concentration.  We are working closely with a team of doctors but so far we haven’t been able to do anything to help lessen or alleviate the pain. 

So is the assumption about the pain?  In some regards yes. As a mother the thought of my child in constant pain is overwhelming.  But the real assumption violation was about independence and development. For the last few years we have been working really hard to teach Ryley how to be safely independent. She has taken babysitting classes; we have been working on her knowing her allergies, being able to identify her medications, keep her cell phone with her at all times, and how to handle as many emergencies as we could conceive of.  Remember afterall this is the child who once developed an escape plan in case wild teenagers broke into our house.  But now the memory loss makes it impossible for her to be left alone.  Unfortunately she remembers her former independence and hasn’t’ quite come to grips with the loss.

Neither have I though. I never dreamed that the child who was more than capable of earning As would become rendered unable to achieve those academic standards or that we would need to regress and start breaking down multiple steps for her again.  Maybe the hardest part is that I have no idea if this is her new normal. 

Hope is never lost in our family and I guess this is one of those twists in the journey that is horribly painful now but that will teach yet another invaluable lesson to us—nothing in life, special needs or otherwise, can be taken for granted. Every moment we have with our children, the great moments, the not-so-great moments, and every moment in between is precious time with our children.  My vow is to remember how precious their lives are to me. I will be giving hugs and kisses more often than my oldest would appreciate and I will be tucking them into bed even if that means on top of the bed in one’s case since she would rather not have to make a bed in the morning.  I’ll try to turn email off a bit more and say yes to silliness when I can.  In short I’ll work much harder to realize that nothing on this journey can or should be taken for granted because you just never know when it will all change.

As a bonus this time, check out my lovely daughter who is the December Featured Sibling of the Month on Shout Out (an online magazine for siblings of kids with autism): Sibling of the Month: Ryley

Saturday, December 1, 2012

Dodge Ball


Do you remember dodge ball from gym class? You know the game where people throw balls at you as hard as they possibly can and if you get hit, you are (mercifully) out of the rest of the game.  I never liked the game. But you know, they say everything you learn in school is preparing you for something you’ll need to know later in life.I’m still waiting for geometry to kick in but I guess I’m starting to see where everything else fits in; even this dodge ball game.





Lately it feels like I’m playing dodge ball; the only difference is that it seems to be me against a whole lot of people trying to get me out.  Ironically, the teams were always even in gym class--not so much so in real life.





So a few weeks ago, Caden had ear surgery; a week later his ear re-perforated.  The cultures showed his sinuses are growing bacteria, but it is bacteria that should be responding to the antibiotics that he’s been on for over a year now.  So we’re in a holding pattern and just trying to minimize symptoms because there doesn’t seem to be a better plan at the moment. Then his stomach pain is back.  We’re still treating him for bladder spasms and constipation and acid reflux but nothing seems to really matter. We’ve even started eliminating certain foods but the pain remains fairly constant.  He actually said the other day, he doesn’t care about the pain anymore.  Seriously should a 6 year old ever have to get used to pain?





Then there’s my dental “situation.” Yes I’ve escalated it to a full blown situation. In addition to having the tooth removed, the bone grafted, and an implant placed (which is going to take multiple procedures over the next year), I also have to have every filling I ever had put in replaced; I also knew I wasn’t a silver kind of girl.  Thankfully the dentist and oral surgeon have finally realized the full extent of my phobia and are now sedating me for everything.  Heck they may start offering laughing gas for when I need to brush my teeth—yep that’s how bad things are these days.

Then there’s my daughter’s declining neurological health.  No one seems to have any ideas yet, but she’s consistently dizzy, having horrible headaches that no amount of medication will break, and having difficulty with comprehension, short term memory, speech, and vision.  So far the eye doctor has ruled out his part and the CTscan came back negative. We did an EEG yesterday (and I actually think we finally have all of the glue out of her extremely long hair) and today she’s having a head MRI with contrast.  We see the pediatric neurologist at Mayo again next week and hopefully get some answers (and more importantly a plan). Until then we wait with a scared and frustrated 12 year old.

As an added bonus, recently Caden started in home autism therapy. The therapists are wonderful and so far he enjoys their attention. They work 2 hour shifts with 2 therapists coming in a day 3 days a week. These 12 hours are substituting for part of his school hours.  Thankfully they are able to integrate speech, occupational therapy, physical therapy, life skills, and social skills all into their therapy sections.  Everything is excellently documented in a binder which you know I love. But I’m still adjusting to having strangers in my house and trying to keep my house spotless for them.  I’m also not sure what my place is when they are here.  I’m like the mom who is no longer needed.  Somehow it is a different feeling than when I was simply waiting in a waiting room at some hospital or clinic.  Thankfully his enthusiasm more than makes up for my discomfort and I’m sure in time I’ll adjust.





And then out of the blue we had some pet drama.  The day before Thanksgiving we had to say goodbye to my beautiful tail-less wonder cat, Kola.  Her medical situation had declined and there just weren’t any other options left for us to pursue to alleviate her pain.  It’s for the best but that doesn’t make my heart feel any better. Then two days after Thanksgiving Elf had to go to the vet for a bacterial infection. Thankfully it was localized and we caught it early but he hasn’t been able to go to school with Caden for the last few days and honestly I’m not sure which one of them that has made more miserable.





Let’s face it this game of dodge ball is just plain ugly. But then every once in a while I find a time out zone; you know one of those places where they can’t get you until you step out of the square.  Those time out zones have come in the form of Caden being moved to 1st grade for literature and math each day and being one of only three students who were invited to the E2 (3rd-4th-5th) grade room for lunch because of their hard work this year. 1st grade has been his dream so this is a huge accomplishment in his world. Another time out zone is that Ryley had to withdraw from traditional school this year and is doing a virtual charter school; this means that even though she has missed 1.5 weeks of school we’ll be able to use nights and weekends to get her caught up once she can resume school again. And then we can’t discount the fact that somehow or another Dan and I have been able to juggle classes for the last 3 weeks so that all of our classes are still exactly on schedule. Granted at some point I’m going to have to step off the safe block and then it’s all going to break loose again. 





I just don’t like dodge ball. It is overwhelming and darn it when one of those balls gets ya, it just plain hurts.  And there doesn’t seem to be a coach with a whistle to signal the end of the game which I guess since this is life we are talking about, that’s probably a pretty good thing.  So for now I’ll keep dodging and desperately looking for those time out blocks. But hey if you are in the neighborhood and would like to tag in and give me a break, I’d be more than happy to oblige.  I’m a little weary of Caden’s tale at the moment, but then again I can’t imagine any other tale I’d rather be living. 


Dodge Ball


Do you remember dodge ball from gym class? You know the game where people throw balls at you as hard as they possibly can and if you get hit, you are (mercifully) out of the rest of the game.  I never liked the game. But you know, they say everything you learn in school is preparing you for something you’ll need to know later in life. I’m still waiting for geometry to kick in but I guess I’m starting to see where everything else fits in; even this dodge ball game.

Lately it feels like I’m playing dodge ball; the only difference is that it seems to be me against a whole lot of people trying to get me out.  Ironically, the teams were always even in gym class--not so much so in real life.

So a few weeks ago, Caden had ear surgery; a week later his ear re-perforated.  The cultures showed his sinuses are growing bacteria, but it is bacteria that should be responding to the antibiotics that he’s been on for over a year now.  So we’re in a holding pattern and just trying to minimize symptoms because there doesn’t seem to be a better plan at the moment. Then his stomach pain is back.  We’re still treating him for bladder spasms and constipation and acid reflux but nothing seems to really matter. We’ve even started eliminating certain foods but the pain remains fairly constant.  He actually said the other day, he doesn’t care about the pain anymore.  Seriously should a 6 year old ever have to get used to pain?

Then there’s my dental “situation.” Yes I’ve escalated it to a full blown situation. In addition to having the tooth removed, the bone grafted, and an implant placed (which is going to take multiple procedures over the next year), I also have to have every filling I ever had put in replaced; I also knew I wasn’t a silver kind of girl.  Thankfully the dentist and oral surgeon have finally realized the full extent of my phobia and are now sedating me for everything.  Heck they may start offering laughing gas for when I need to brush my teeth—yep that’s how bad things are these days.

Then there’s my daughter’s declining neurological health.  No one seems to have any ideas yet, but she’s consistently dizzy, having horrible headaches that no amount of medication will break, and having difficulty with comprehension, short term memory, speech, and vision.  So far the eye doctor has ruled out his part and the CTscan came back negative. We did an EEG yesterday (and I actually think we finally have all of the glue out of her extremely long hair) and today she’s having a head MRI with contrast.  We see the pediatric neurologist at Mayo again next week and hopefully get some answers (and more importantly a plan). Until then we wait with a scared and frustrated 12 year old.

As an added bonus, recently Caden started in home autism therapy. The therapists are wonderful and so far he enjoys their attention. They work 2 hour shifts with 2 therapists coming in a day 3 days a week. These 12 hours are substituting for part of his school hours.  Thankfully they are able to integrate speech, occupational therapy, physical therapy, life skills, and social skills all into their therapy sections.  Everything is excellently documented in a binder which you know I love. But I’m still adjusting to having strangers in my house and trying to keep my house spotless for them.  I’m also not sure what my place is when they are here.  I’m like the mom who is no longer needed.  Somehow it is a different feeling than when I was simply waiting in a waiting room at some hospital or clinic.  Thankfully his enthusiasm more than makes up for my discomfort and I’m sure in time I’ll adjust.

And then out of the blue we had some pet drama.  The day before Thanksgiving we had to say goodbye to my beautiful tail-less wonder cat, Kola.  Her medical situation had declined and there just weren’t any other options left for us to pursue to alleviate her pain.  It’s for the best but that doesn’t make my heart feel any better. Then two days after Thanksgiving Elf had to go to the vet for a bacterial infection. Thankfully it was localized and we caught it early but he hasn’t been able to go to school with Caden for the last few days and honestly I’m not sure which one of them that has made more miserable.

Let’s face it this game of dodge ball is just plain ugly. But then every once in a while I find a time out zone; you know one of those places where they can’t get you until you step out of the square.  Those time out zones have come in the form of Caden being moved to 1st grade for literature and math each day and being one of only three students who were invited to the E2 (3rd-4th-5th) grade room for lunch because of their hard work this year. 1st grade has been his dream so this is a huge accomplishment in his world. Another time out zone is that Ryley had to withdraw from traditional school this year and is doing a virtual charter school; this means that even though she has missed 1.5 weeks of school we’ll be able to use nights and weekends to get her caught up once she can resume school again. And then we can’t discount the fact that somehow or another Dan and I have been able to juggle classes for the last 3 weeks so that all of our classes are still exactly on schedule. Granted at some point I’m going to have to step off the safe block and then it’s all going to break loose again. 

I just don’t like dodge ball. It is overwhelming and darn it when one of those balls gets ya, it just plain hurts.  And there doesn’t seem to be a coach with a whistle to signal the end of the game which I guess since this is life we are talking about, that’s probably a pretty good thing.  So for now I’ll keep dodging and desperately looking for those time out blocks. But hey if you are in the neighborhood and would like to tag in and give me a break, I’d be more than happy to oblige.  I’m a little weary of Caden’s tale at the moment, but then again I can’t imagine any other tale I’d rather be living. 

Sunday, November 25, 2012

Autism, God, and Poetry


“Daddy, did God want me to have Autism?”


“Daddy, why did God want your Mom in heaven?”


 “Daddy, when will I get rid of my Autism?”



“Daddy, will Elf always be here with me?”





It has been quite a few weeks of questions as Caden has begun to understand that the world is bigger than him.  Yes, every parent gets questions like these at some point, but Caden’s newly acquired sense of wonderment coupled with his Autism has led to a whole new set of parenting challenges for this already challenged parent.





During calmer times, Jenn and I convinced each other that the communication and relational challenges associated with raising a son with Autism have enriched us as educators, allowing us to appreciate different types of learning, expressing, and emoting.  Being faced with the above questions, however, has pushed the boundaries of my ability to wax poetic.  Poetics and Autism (at least Caden’s version) do not mix.





My standard answer of “I don’t know” doesn’t work with the “Daddy….questions—they are too important and deserving of answers.  I also can’t lie to him and tell him a fairy tale because he will hold it against me later if it doesn’t turn out to be true.  I opted instead for answers involving faith and trust that everything will work out for the best.





I should have known—faith, trust, and the promise of a better tomorrow are far too abstract for Autism.  Caden’s reality is literal, concrete, non-metaphorical, and my answers were, well, not.  Those answers that can allow us to buy time until our children grow older and develop a stronger sense of themselves and the world don’t work with Autism.  It is a shame that kids who already have a hard time in the world can’t be afforded the same protection from it that neuro-typical children often are. 





So, with a deep breath I offered him some answers to his “Daddy…” questions.  “Daddy, did God want me to have Autism?”  ”Well Caden, I don’t know if he wanted you to have Autism, but he did want you to be here with me so you can be my buddy.  I love you, and that’s what matters.”



“Daddy, why did God want your Mom in heaven?”  “I guess it was time.  Everyone has a time, and it is nothing for us to be scared about.  Grandma was sick, and now she doesn’t have to be.  She gets to sing in heaven, now, and make the whole world happy.”




“Daddy, when will I get rid of my Autism?”  “Never, buddy, but we are doing everything we can to get you therapy so that your Autism doesn’t make the world so hard for you.  There are some things that Autism does for you that make you very special, and we wouldn’t want those to go away.”


“Daddy, will Elf always be here with me?”  “Yes, always.  Elf is your best friend now and forever.”




Are there better answers to these questions?  Of course there are, but they are what I had at the time, and what seemed to be the most concrete answers I had for very difficult questions.  I never imagined that metaphors—tools of language to help us understand difficult concepts—could create such problems. 





Thankfully the phone rang this morning when Caden started with: “Soooo God makes kids right?  And I was in Mommy’s belly right?  So, that means Mommy met God right?  And how did I get out of Mommy’s belly anyway?”  I’m really not ready for part two of this at bedtime…


Autism, God, and Poetry


“Daddy, did God want me to have Autism?”
“Daddy, why did God want your Mom in heaven?”
 “Daddy, when will I get rid of my Autism?”
“Daddy, will Elf always be here with me?”

It has been quite a few weeks of questions as Caden has begun to understand that the world is bigger than him.  Yes, every parent gets questions like these at some point, but Caden’s newly acquired sense of wonderment coupled with his Autism has led to a whole new set of parenting challenges for this already challenged parent.

During calmer times, Jenn and I convinced each other that the communication and relational challenges associated with raising a son with Autism have enriched us as educators, allowing us to appreciate different types of learning, expressing, and emoting.  Being faced with the above questions, however, has pushed the boundaries of my ability to wax poetic.  Poetics and Autism (at least Caden’s version) do not mix.

My standard answer of “I don’t know” doesn’t work with the “Daddy….questions—they are too important and deserving of answers.  I also can’t lie to him and tell him a fairy tale because he will hold it against me later if it doesn’t turn out to be true.  I opted instead for answers involving faith and trust that everything will work out for the best.

I should have known—faith, trust, and the promise of a better tomorrow are far too abstract for Autism.  Caden’s reality is literal, concrete, non-metaphorical, and my answers were, well, not.  Those answers that can allow us to buy time until our children grow older and develop a stronger sense of themselves and the world don’t work with Autism.  It is a shame that kids who already have a hard time in the world can’t be afforded the same protection from it that neuro-typical children often are. 

So, with a deep breath I offered him some answers to his “Daddy…” questions.  “Daddy, did God want me to have Autism?”  ”Well Caden, I don’t know if he wanted you to have Autism, but he did want you to be here with me so you can be my buddy.  I love you, and that’s what matters.”
“Daddy, why did God want your Mom in heaven?”  “I guess it was time.  Everyone has a time, and it is nothing for us to be scared about.  Grandma was sick, and now she doesn’t have to be.  She gets to sing in heaven, now, and make the whole world happy.”

“Daddy, when will I get rid of my Autism?”  “Never, buddy, but we are doing everything we can to get you therapy so that your Autism doesn’t make the world so hard for you.  There are some things that Autism does for you that make you very special, and we wouldn’t want those to go away.”
“Daddy, will Elf always be here with me?”  “Yes, always.  Elf is your best friend now and forever.”

Are there better answers to these questions?  Of course there are, but they are what I had at the time, and what seemed to be the most concrete answers I had for very difficult questions.  I never imagined that metaphors—tools of language to help us understand difficult concepts—could create such problems. 

Thankfully the phone rang this morning when Caden started with: “Soooo God makes kids right?  And I was in Mommy’s belly right?  So, that means Mommy met God right?  And how did I get out of Mommy’s belly anyway?”  I’m really not ready for part two of this at bedtime…

Friday, November 23, 2012

My 30 Days of Thankfulness



Lots of people have been doing their 30 days of thankfulness on Facebook this month—I knew I’d never remember to do it every day so instead I decided to devote a blog to this---after all I think it is important for people to know that no matter how challenging the days may be, I always have a lot to be thankful of.  So here’s my 30 days of thankfulness list:





  1. My parents: Although they’ve always been my worst critics, they have also been my biggest supporters and without them there’s no way I could handle what I do today. 

  2. My daughter: Ryley is fond of saying that we’re a team and she’s right.  We’ve been through so much together and while it breaks my heart that she’s not a little girl anymore, it is inspiring to watch the young lady she is becoming.

  3. My husband: I really doubt that Dan had any idea what he was getting into when he married me but he has never complained over the chaos that Ry and my cats brought into his life.  I am truly lucky to have an equal partner in this life through the good and the bad.

  4. Caden: I was really worried when I found out I was pregnant with a boy; I had no idea how I would relate to a son but in the moments following his birth, looking into his brilliant blue eyes, I was totally and completely in love.

  5. My education: while it certainly helps with employment, it has also given me the skills that I need to research all of the ins and outs and options that come along with having special needs kids. 

  6. 4 Paws For Ability: Karen Shirk and her trainers are heroes and the world is truly a better place because they devote their lives to improving and saving the lives of so many people through their amazing dogs; they are even able to rescue a few animals along the way which makes them all kinds of heroes in my book.

  7. Elf: It was given with 4 Paw’s reputation that he would be a well-trained highly capable service dog but I will forever be grateful for him being my son’s best friend and for being such a sweet ambassador that opens the door for other friendships for Caden.

  8. My fur babies: Each one of them has come into my life for a reason; sometimes they needed me and sometimes I needed them.  Each one, past and present, holds a special place and memory in my heart and I can never thank them enough for the nights that they keep my insomnia and heart company.

  9. The makers of Coca Cola: Lots of stress with little sleep is the perfect scenario for an addiction. I’m just thankful that my addiction is legal, full of caffeine, and oh so yummy.

  10. My online friends: I haven’t met any of this wonderful community of people but yet they are the ones who are usually first to help me with answers about autism, immune deficiencies, and sometimes just life in general.

  11. Plasma donors: Again I don’t know any of these people but if it weren’t for them giving up their time and a little of their plasma, my children wouldn’t be able to receive the life sustaining immunoglobulin infusions that they desperately need each month.

  12. The Immune Deficiency Foundation: They are advocating for and bringing much needed awareness to primary immune deficiencies and provide many of their resources to no charge to families affected by these diseases.

  13. Autism Speaks: While I know their organization is often involved in controversy, I am thankful that they are devoted to autism awareness and again I’ve relied on a number of their resources when I didn’t know where else to turn to for reliable information.

  14. Animal Rescue Groups: There’s so much cruelty out there in the world and while I wish I could safe every animal, I know that I can’t. I’m thankful that volunteers around the world devote their time and money to rescuing animals in abusive situations or in times of disaster.

  15. Ipads: My children spend a lot of their time in the car riding to appointments, waiting for appointments, and hanging out in hospitals.  Additionally we haven’t always had access to certain therapies for Caden and I’m thankful that we were able to obtain ipads for both kids that simultaneously educate and entertain them.

  16. Taco Bell: Strange but true fact, it is one of the few foods that always makes my daughter happy when she doesn’t feel well.  Sometimes when you can’t do anything else, it’s really the small things that matter.

  17. Super Mario: For providing hours and hours of entertainment and pure joy for my son. I’m thankful for anything that makes him smile.

  18. My son’s voice: When Caden went from several dozen words to only two and mommy was one of those words that disappeared, I wondered if I would ever hear my precious baby’s voice again.  Although he highly repetitive and there’s usually a word we hear a thousand times a day, I never take for granted his sweet sweet little voice.

  19. Music: Although I have no musical talent, I am thankful that others do.  Sometimes a great song and a pair of headphones are exactly the escape a person needs when a vacation or day off aren’t possible. I love how there’s always a song for my every mood.

  20. The kindness of strangers: There are a lot of nasty people out there but for every one of those, there are equally wonderful people who are willing to drop anything and everything to help a stranger.  Sometimes it is sending your sick child a card, other times it is holding a door while you haul a melting down child out of the store.

  21. Books: For as long as I can remember I’ve loved to read.  Reading is such an amazing escape and lets you go places that you might not ever physically be able to go; having a few minutes to read a book always feels like a precious treat.

  22. Bloggers: There are some amazingly talented people out there who so generously open up their lives to us and help us understand a disability or a new perspective and I’m so fortunate to call a few of those people my friends.

  23. Activists: I’m eternally grateful for the people who devote their lives to being the change that they want to see in the world. Without them, I wouldn’t have the ability to vote, the opportunity to obtain a fair and inclusive education for my son, the right to walk into stores with a service dog, and so many more privileges.

  24. Pictures: I love to be surrounded by my family and when I can’t, it makes me happy to have their pictures spread around my office at work and even around my house so that I am always surrounded by those dearest to me.

  25. Trampolines: While I usually hurt myself when I try to be cool and jump on it, it is the perfect outlet for both of my kids.  Sometimes it is a therapy device for my son and sometimes it is a stress reliever for my daughter but they always enjoy their time out there. Best of all, they both like to jump on it best when they are together.

  26. Therapists: From occupational therapists for sensory issues to physical therapists for sports injuries to speech therapists for communication challenges, some amazing people have devoted their time to improving my children’s quality of life.

  27. Teachers:  Both of my children started out school with kind, passionate, dedicated teachers who instilled in them the love of learning.  They both view school positively and it is entirely a result of the amazing teachers they have had along the way.

  28. Alternative foods: We have a lot of restrictions in this house (we’re vegetarians, milk protein allergies, soy allergies, gluten sensitivities, carrot allergies, and the list goes on) and although I cried the first time I tried to grocery shop with just one identified food allergy, I’m now immensely thankful for the growing selection of alternative food items at every day grocery stores.

  29. Blankie: I’m a secure adult; I can own the fact that I have a blankie. We’ve been through a lot together and I’m extremely grateful that it hasn’t fallen apart because as we all know, blankies simply can’t be replaced.

  30. “Old” McDonalds: Every Sunday morning (and every infusion Saturday), my husband brings “old” McDonalds home and we sit around the table in the family room and eat it together.  It’s probably the closest thing we have to a tradition and something that every single member of our family enjoys.  


































My 30 Days of Thankfulness


Lots of people have been doing their 30 days of thankfulness on Facebook this month—I knew I’d never remember to do it every day so instead I decided to devote a blog to this---after all I think it is important for people to know that no matter how challenging the days may be, I always have a lot to be thankful of.  So here’s my 30 days of thankfulness list:
  1. My parents: Although they’ve always been my worst critics, they have also been my biggest supporters and without them there’s no way I could handle what I do today. 
  2. My daughter: Ryley is fond of saying that we’re a team and she’s right.  We’ve been through so much together and while it breaks my heart that she’s not a little girl anymore, it is inspiring to watch the young lady she is becoming.
  3. My husband: I really doubt that Dan had any idea what he was getting into when he married me but he has never complained over the chaos that Ry and my cats brought into his life.  I am truly lucky to have an equal partner in this life through the good and the bad.
  4. Caden: I was really worried when I found out I was pregnant with a boy; I had no idea how I would relate to a son but in the moments following his birth, looking into his brilliant blue eyes, I was totally and completely in love.
  5. My education: while it certainly helps with employment, it has also given me the skills that I need to research all of the ins and outs and options that come along with having special needs kids. 
  6. 4 Paws For Ability: Karen Shirk and her trainers are heroes and the world is truly a better place because they devote their lives to improving and saving the lives of so many people through their amazing dogs; they are even able to rescue a few animals along the way which makes them all kinds of heroes in my book.
  7. Elf: It was given with 4 Paw’s reputation that he would be a well-trained highly capable service dog but I will forever be grateful for him being my son’s best friend and for being such a sweet ambassador that opens the door for other friendships for Caden.
  8. My fur babies: Each one of them has come into my life for a reason; sometimes they needed me and sometimes I needed them.  Each one, past and present, holds a special place and memory in my heart and I can never thank them enough for the nights that they keep my insomnia and heart company.
  9. The makers of Coca Cola: Lots of stress with little sleep is the perfect scenario for an addiction. I’m just thankful that my addiction is legal, full of caffeine, and oh so yummy.
  10. My online friends: I haven’t met any of this wonderful community of people but yet they are the ones who are usually first to help me with answers about autism, immune deficiencies, and sometimes just life in general.
  11. Plasma donors: Again I don’t know any of these people but if it weren’t for them giving up their time and a little of their plasma, my children wouldn’t be able to receive the life sustaining immunoglobulin infusions that they desperately need each month.
  12. The Immune Deficiency Foundation: They are advocating for and bringing much needed awareness to primary immune deficiencies and provide many of their resources to no charge to families affected by these diseases.
  13. Autism Speaks: While I know their organization is often involved in controversy, I am thankful that they are devoted to autism awareness and again I’ve relied on a number of their resources when I didn’t know where else to turn to for reliable information.
  14. Animal Rescue Groups: There’s so much cruelty out there in the world and while I wish I could safe every animal, I know that I can’t. I’m thankful that volunteers around the world devote their time and money to rescuing animals in abusive situations or in times of disaster.
  15. Ipads: My children spend a lot of their time in the car riding to appointments, waiting for appointments, and hanging out in hospitals.  Additionally we haven’t always had access to certain therapies for Caden and I’m thankful that we were able to obtain ipads for both kids that simultaneously educate and entertain them.
  16. Taco Bell: Strange but true fact, it is one of the few foods that always makes my daughter happy when she doesn’t feel well.  Sometimes when you can’t do anything else, it’s really the small things that matter.
  17. Super Mario: For providing hours and hours of entertainment and pure joy for my son. I’m thankful for anything that makes him smile.
  18. My son’s voice: When Caden went from several dozen words to only two and mommy was one of those words that disappeared, I wondered if I would ever hear my precious baby’s voice again.  Although he highly repetitive and there’s usually a word we hear a thousand times a day, I never take for granted his sweet sweet little voice.
  19. Music: Although I have no musical talent, I am thankful that others do.  Sometimes a great song and a pair of headphones are exactly the escape a person needs when a vacation or day off aren’t possible. I love how there’s always a song for my every mood.
  20. The kindness of strangers: There are a lot of nasty people out there but for every one of those, there are equally wonderful people who are willing to drop anything and everything to help a stranger.  Sometimes it is sending your sick child a card, other times it is holding a door while you haul a melting down child out of the store.
  21. Books: For as long as I can remember I’ve loved to read.  Reading is such an amazing escape and lets you go places that you might not ever physically be able to go; having a few minutes to read a book always feels like a precious treat.
  22. Bloggers: There are some amazingly talented people out there who so generously open up their lives to us and help us understand a disability or a new perspective and I’m so fortunate to call a few of those people my friends.
  23. Activists: I’m eternally grateful for the people who devote their lives to being the change that they want to see in the world. Without them, I wouldn’t have the ability to vote, the opportunity to obtain a fair and inclusive education for my son, the right to walk into stores with a service dog, and so many more privileges.
  24. Pictures: I love to be surrounded by my family and when I can’t, it makes me happy to have their pictures spread around my office at work and even around my house so that I am always surrounded by those dearest to me.
  25. Trampolines: While I usually hurt myself when I try to be cool and jump on it, it is the perfect outlet for both of my kids.  Sometimes it is a therapy device for my son and sometimes it is a stress reliever for my daughter but they always enjoy their time out there. Best of all, they both like to jump on it best when they are together.
  26. Therapists: From occupational therapists for sensory issues to physical therapists for sports injuries to speech therapists for communication challenges, some amazing people have devoted their time to improving my children’s quality of life.
  27. Teachers:  Both of my children started out school with kind, passionate, dedicated teachers who instilled in them the love of learning.  They both view school positively and it is entirely a result of the amazing teachers they have had along the way.
  28. Alternative foods: We have a lot of restrictions in this house (we’re vegetarians, milk protein allergies, soy allergies, gluten sensitivities, carrot allergies, and the list goes on) and although I cried the first time I tried to grocery shop with just one identified food allergy, I’m now immensely thankful for the growing selection of alternative food items at every day grocery stores.
  29. Blankie: I’m a secure adult; I can own the fact that I have a blankie. We’ve been through a lot together and I’m extremely grateful that it hasn’t fallen apart because as we all know, blankies simply can’t be replaced.
  30. “Old” McDonalds: Every Sunday morning (and every infusion Saturday), my husband brings “old” McDonalds home and we sit around the table in the family room and eat it together.  It’s probably the closest thing we have to a tradition and something that every single member of our family enjoys.  


Sunday, November 11, 2012

The Story of Mommy's Tooth (in Music)





Come on, admit it….the song makes you smile (and not to mention it’s the Chipmunks).  We all remember the ever so adorable All I Want for Christmas Is My Two Front Teeth holiday song, right?  Now try singing it All I Want for Christmas Is My Back Tooth and a Steel Bar…..not quite the same feel is it. 





First a disclaimer…..this blog is all me. As in me, ME, me. But  in fairness I figure I share enough of the kids’ lives that I should probably tell an “oops” of my own. 





The other day I made fun of my “lucky” bamboo plant.  It just isn’t looking healthy (apparently the experts are serious when they tell you to keep it watered at all times), and I cracked a joke that I wasn’t worried because how lucky could a plant be anyway.  Then I went home, and an hour later my tooth fell out.  Let me repeat that, just in case you missed it, MY TOOTH FELL OUT.





What ensued next wasn’t pretty. I cried, and cried and cried, and then I cried some more.  Maybe you are thinking that I cried because it hurt—not the reason (although it did, and does, hurt). Maybe because I knew it was going to be expensive to fix—not the reason (although it will cost buckets and buckets of cash).  Hassle? Inconvenience?  Nope and nope.  Plain and simple I cried like a baby because I’m absolutely and completely terrified of dentists.





Back-story time. When I was 6, my dentist told me he was going to feel my teeth; instead he pulled several.  I’m not a huge fan of unexpected pain; unexpected pain and unexpected blood even worse.  This isn’t about the pain, though, as much as it was the unexpected nature of it.  Fast forward to my 16th birthday—had my wisdom teeth out (thanks mom and dad for the timing on that one). Oh and my boyfriend broke up with me the night before (hey you out there, you know who you are, don’t think I’ve forgiven you for that one yet—your timing stinks!). And then because my molars wouldn’t play nice and just come in, I had to go to the oral surgeon every Friday for several months and have the gums around those teeth cut and burnt off.  Interesting this wasn’t unexpected pain, but the smell and sounds added a little more to my phobia.  Oh and my oral surgeon used the time to try to fix me up with his son…every single week.  Of course that same son is now a very successful (and wealthy) surgeon (but don’t worry honey—I’m glad I married you instead, I always take true love over being absolutely stinky rich….honestly).





Then a few years ago I had to have a cavity filled and the dentist promised me that everything would be good and numb and it would be smooth as silk.  He, however, decided he was in a hurry and decided to start drilling before  the numbing stuff worked (good news though I was numb for the ride home).  Kinda reminds me of this song:





Add post-traumatic stress disorder to my dental phobia and you’ve got a lady who isn’t going anywhere near the dentist unless she absolutely has too. Now in case you are wondering I did try therapy for a while, but even the every so kind and patient therapist concluded that I’d be best to just be medicated when dentists were involved.





So how does that get us to my tooth falling out.  Well that darn filling apparently leaked and that led to an infection setting into the tooth which then traveled up the roots into the bone.  On Tuesday I have a 2.5 to 3.0 hour dentistappointment that is going to involve lots of different kinds of x-rays to see where all this infection has spread and how many teeth and how much bone is affected.  Then on the 27th I see…..(gulp) an oral surgeon.  At minimum the ½ a tooth has to come out and a steel bar has to be placed into the bone so that they can create a new tooth (see there is a new tooth although it won’t be done by Christmas because this is going to be a 6-8 month process). If the infection is too deep they may have to cut out some bone and some more teeth and bars may be involved. 






Let’s recap—pulling teeth, cutting bone, screwing metal bars in, 6-8 months of dental work and as an added bonus they don’t typically sedate you for this procedure.  Wanna bet they change their mind after they see my reaction to the consultation???





So in case you are wondering, my bamboo plant received room temperature bottled water yesterday and day.  If that doesn’t make it happy I’ve promised Evian water or maybe even its own pond constructed out of a little inflatable pool in a temperature controlled room.  And for good measure I am polishing my chakra stones, keeping an eye on the alignment of planets and repressing my 4-leaf clover. The rabbit’s foot I of course left on the rabbit because his luck is greatly improved that way.  And I’ll just keep singing my request to Santa for my new tooth and bar for Christmas although I doubt it’ll be as cute as when the Chipmunks did it. 


The Story of Mommy's Tooth (in Music)


Come on, admit it….the song makes you smile (and not to mention it’s the Chipmunks).  We all remember the ever so adorable All I Want for Christmas Is My Two Front Teeth holiday song, right?  Now try singing it All I Want for Christmas Is My Back Tooth and a Steel Bar…..not quite the same feel is it. 

First a disclaimer…..this blog is all me. As in me, ME, me. But  in fairness I figure I share enough of the kids’ lives that I should probably tell an “oops” of my own. 

The other day I made fun of my “lucky” bamboo plant.  It just isn’t looking healthy (apparently the experts are serious when they tell you to keep it watered at all times), and I cracked a joke that I wasn’t worried because how lucky could a plant be anyway.  Then I went home, and an hour later my tooth fell out.  Let me repeat that, just in case you missed it, MY TOOTH FELL OUT.

What ensued next wasn’t pretty. I cried, and cried and cried, and then I cried some more.  Maybe you are thinking that I cried because it hurt—not the reason (although it did, and does, hurt). Maybe because I knew it was going to be expensive to fix—not the reason (although it will cost buckets and buckets of cash).  Hassle? Inconvenience?  Nope and nope.  Plain and simple I cried like a baby because I’m absolutely and completely terrified of dentists.

Back-story time. When I was 6, my dentist told me he was going to feel my teeth; instead he pulled several.  I’m not a huge fan of unexpected pain; unexpected pain and unexpected blood even worse.  This isn’t about the pain, though, as much as it was the unexpected nature of it.  Fast forward to my 16th birthday—had my wisdom teeth out (thanks mom and dad for the timing on that one). Oh and my boyfriend broke up with me the night before (hey you out there, you know who you are, don’t think I’ve forgiven you for that one yet—your timing stinks!). And then because my molars wouldn’t play nice and just come in, I had to go to the oral surgeon every Friday for several months and have the gums around those teeth cut and burnt off.  Interesting this wasn’t unexpected pain, but the smell and sounds added a little more to my phobia.  Oh and my oral surgeon used the time to try to fix me up with his son…every single week.  Of course that same son is now a very successful (and wealthy) surgeon (but don’t worry honey—I’m glad I married you instead, I always take true love over being absolutely stinky rich….honestly).


Then a few years ago I had to have a cavity filled and the dentist promised me that everything would be good and numb and it would be smooth as silk.  He, however, decided he was in a hurry and decided to start drilling before  the numbing stuff worked (good news though I was numb for the ride home).  Kinda reminds me of this song:

Add post-traumatic stress disorder to my dental phobia and you’ve got a lady who isn’t going anywhere near the dentist unless she absolutely has too. Now in case you are wondering I did try therapy for a while, but even the every so kind and patient therapist concluded that I’d be best to just be medicated when dentists were involved.

So how does that get us to my tooth falling out.  Well that darn filling apparently leaked and that led to an infection setting into the tooth which then traveled up the roots into the bone.  On Tuesday I have a 2.5 to 3.0 hour dentist appointment that is going to involve lots of different kinds of x-rays to see where all this infection has spread and how many teeth and how much bone is affected.  Then on the 27th I see…..(gulp) an oral surgeon.  At minimum the ½ a tooth has to come out and a steel bar has to be placed into the bone so that they can create a new tooth (see there is a new tooth although it won’t be done by Christmas because this is going to be a 6-8 month process). If the infection is too deep they may have to cut out some bone and some more teeth and bars may be involved. 

Let’s recap—pulling teeth, cutting bone, screwing metal bars in, 6-8 months of dental work and as an added bonus they don’t typically sedate you for this procedure.  Wanna bet they change their mind after they see my reaction to the consultation???

So in case you are wondering, my bamboo plant received room temperature bottled water yesterday and day.  If that doesn’t make it happy I’ve promised Evian water or maybe even its own pond constructed out of a little inflatable pool in a temperature controlled room.  And for good measure I am polishing my chakra stones, keeping an eye on the alignment of planets and repressing my 4-leaf clover. The rabbit’s foot I of course left on the rabbit because his luck is greatly improved that way.  And I’ll just keep singing my request to Santa for my new tooth and bar for Christmas although I doubt it’ll be as cute as when the Chipmunks did it. 

Friday, October 26, 2012

The Reality of Assumptions



Parenting, like much of life is about assumptions.  We get through our daily lives on the basis of the things we take for granted. We don’t even realize how precious these things are until they aren’t there for some reason.  Take for example electricity.  We just assume that the lights will come on, that the toilets will flush, and that we can watch television until there’s a storm that takes out the electricity.  If it is a big enough storm and we have to go for several hours or even days without electricity we can really start to appreciate how grateful we need to be for electricity each and every day. 



As a parent or to-be parent, we assume that a long list of things will happen: our child will be healthy, will learn to walk, will talk, will tell us that they love us, will give us hugs and kisses, and so on. It’s what happens in those “what to expect from your newborn/toddler” books, what happens in advice columns in magazines, and what generally happens in shows and movies.  It’s all around us because for the most part, like our electricity, these are things that we can assume will happen. 



Maybe it’s our assumptions or maybe it’s the constant barrage about what normal looks like but when these assumptions aren’t your experience, reality comes crashing down like a house of bricks.  Take playing with toys.  Caden has bins and bins and bins of toys. Yet on any given day he’ll play exclusively with either his ipad or the wii.  For a while I thought we had done something wrong; that we had raised one of those technologically addicted kids who was bored with plain ole have to use your imagination toys.  I have even gotten frustrated  enough a few times to say if you don’t play with these toys I’m going to give them to some child who really wants them.  Then Caden cries……………and I feel bad……really really bad



Recently though a light bulb clicked and I finally understand his choices.  As I have talked about dozens of times, Caden sees the world in black or white. He’s a concrete logical thinker.  Wii or his ipad games have a clear cut way to play them and there is a definite right or wrong way to tackle each game.  Video type games make sense in his world.  The toy box though is a sea of uncertainty. First you have to choose what you are going to play and inherent in every choice is the possibility that you’ll choose incorrectly.  Then you have to choose how to play with the toy. Imagination is a rainbow of vivid colors without a lot of road markers; for a child who sees the world in black and white this isn’t just overwhelming, it is terrifying. This fear is paralyzing to Caden and he’d simply rather not choose than to risk making the wrong choice.  He’s delighted to play with his toys when we choose one for him to play with as long as we also include the how to play directions. So if I tell him to get his cars and race around the dining room table, he’ll do so quite happily.  He’ll giggle and laugh and have fun but he can’t start that process on his own.   



So we’re working on making choices and learning how to play right now.  At the moment we are picking out a toy and giving the directions to see if Caden might start spontaneously going to that toy knowing that he can and does understand how to play with it.  Eventually we’ll branch out into a choice of toys with options in hopes that one day he’ll be okay going over the toy box and picking out toys to play with on his own.  But I have to say that this is one of those assumptions that is pretty tough to swallow when it doesn’t exist—we are teaching our child how to play.  Can’t say that I ever saw that load of bricks coming. 



But these kinds of experiences make the little things that do happen seem like the world.  Honestly I won the emotional lottery this week, Thursday morning to be exact, when Caden out of the blue said “mommy I want a hug and a kiss” as he headed out the door for school.  There was no prompt or no scripting—this was totally and completely spontaneous affection.  That’s a huge deal that I can’t begin to put into words and I think we can appreciate it because we’ve learned over the last 6 years that it isn’t something we can take for granted or assume will happen.  Another win this week was when Caden walked out of the restroom and announced that he had fastened his jeans…by himself. I didn’t expect this to happen and in fact we’ve been having him wear pull on pants more frequently because they give him a degree of independence at school. But he did it—spontaneously and out of the blue.  And because we couldn’t assume that it would happen, we can savor and appreciate the moment for the huge overwhelming deal that it is.  



Learning not to take things for granted is a pretty big life lesson and honestly it’s one that I’m not sure most people every really learn. I think that lesson is hitting home pretty hard in our family but how couldn’t it…..after all we have an amazing little boy to teach us.  I don’t know for sure how much he is learning from us but it is fair to say that we learn something about life each and every day from him.  Who knew that Caden’s tale would be such a learning experience.