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.