I Am a Rockin' Mom! Again!

I have something like a thousand and one photos (and their accompanying stories) to post, and I think I will be able to get to them. But right now I need to journal some things I'm feeling.

Today was a really rough day.

We have this blog to record things, because I know very well that if I don't record them here they will disappear into oblivion. However, I still struggle sometimes to write everything is in my heart because there are things that I'm not sure are okay to write out for the public eye. Not that our blog is that public - but for our kids it kind of is, because mostly it's our close family and friends that read it. We've tried to make it that way. I know very well that I need that little extra push of family and friends expecting to be able to get little updates here in order to be good at keeping a record of our life. I also know that we live in a day where we are realizing that everything we used to think needed to be kept private, is actually dealt with a little better when we talk about it and get support from people. I know this from my own experience growing up. At the same time, I do have a hard time knowing just where to draw that line, especially with the blog because I don't always know just who is reading it. But I know very well that even if I do go write it down somewhere else because I am afraid to put it on the blog - it will eventually get lost, forgotten or tossed. That is a fact that I cannot deny. That is how things work for me. I never know which struggles I am having will be important for my posterity and/or family/friends to know about either so that they can help, or so that they can learn from my experience. Besides that sometimes I desperately need others' help, but I don't know who to turn to for help because I don't know who's had similar experiences. And now I'm rambling....

Anyway, today's struggle is a myriad of things piled on top of one another, each of which have their own little elements that make me wonder what I can write out in a blog post, and what I should not write here. So, to whoever is reading this now and in the future - sorry if I totally messed up and wrote something I really shouldn't have. I am doing my very best here!

We'll start with the last little lead-up to today's breaking point. We were at the library with a small group. We were in a big room, and it smelled like pee. To make a long story short it took me quite a while to realize that the cause of the smell was my own son. And either he had no idea, or he was too afraid to tell me. After making this realization we quickly left and got in the car. Upon getting buckled into the car I realized that this particular son had not simply wet his pants a little, as is the usual thing we are rather used. No. His pants were soaked all the way to his ankles. This also is not the type of situation where he just had a little/big accident that happens in a matter of seconds. No, that is the type of accident where you find a child with a little pool under their shoes. This type of situation is where there is a number of small accidents over a period of time so that the pee has time to soak slowly further and further into the pants until it finally reaches the hem. I have worked really hard on letting him know that I am not mad at him when this happens, but am just frustrated because I don't know how to change it or what the cause is. Yet I still can't quite tell for sure whether he's just clueless or afraid. The breaking point came when, after praying for help and guidance, I ended up calling the pediatrician to ask to have a urinalysis done WHILE he's having this issue to determine once and for all whether this can possibly simply be recurring UTI's. The pediatrician was unavailable, but the nurse left a message for her. A few hours later I received the anxiously awaited return call from the nurse who told me that she had authorized the urinalysis, but that I should know that bedwetting at 4 years old was normal. WHAT????? Now that it has been a few hours since this happened, I'm able to look back and recognize that probably there were some messages going back and forth and somewhere along the way things got mixed up. But sometimes when I am fighting so hard for my son, and people don't always take me very seriously about the issues we're having, I get extremely fiesty.

And when I get fiesty I start thinking these thoughts: I studied child development, I have worked with hundreds of kids. I know what is normal thank you very much. I know very well that bedwetting at 4 years old is completely normal. I am calling you out of desperation because I have tried everything under the sun to help my son. And I know very well that daytime wetting on a regular basis, in a child who is desperately trying to stay dry and who has previously achieved full potty training is NOT NORMAL!!! And while we're at it I also know what is normal for kids as far as sleep habits. And only sleeping 10 hours in a 24 hour period in a 6-month-old baby is not normal. And my husband and I had to figure out the solution to that problem on our own after over 18 months of REAL sleep deprivation NO THANKS to the medical professionals who kept telling us that sleep issues are not uncommon and we need to put our child down tired but awake, and it's okay to let them cry, blah blah blah blah blah! Oh, and let's not just make this about one child huh? How about the time you told me I really needed to go to the ER and spend two weeks in the PICU only to discover it was simply reflux, when I kept saying "NO! I know in my gut that this is not that big of a deal, that there is a simple reason for this. I don't know what it is, but I do know that he's okay."

Yes, I get a little fiesty. Or maybe a lot fiesty. But the real issue is that while I'm a really fiesty person inside my head, I also recognize that the people I'm talking to are people. Human. And I care about humans. I care a lot. Too much sometimes. Particularly with people I know I have to keep a relationship up with. So I don't fight for what I need. I politely accept what they're saying because I don't know how to cool off the things I'm feeling to convey what I need in a polite manner. Today, I did okay I guess. I politely told the nurse that this was not a bedwetting issue. That this is a daytime issue, and that he has been potty-trained off and on for 2 years. That I really don't think this is a behavior issue (which I'm convinced of 90% of the time, until my son randomly tells me that he can control it and he's just being lazy - but even that doesn't totally make sense because there really are times where he has NO IDEA that he is wet or needed to go potty and I KNOW it). So she questioned me about a few other things and said something along the lines of "well, whatever, she gave you the authorization so what do I care."

Then for a little while the overwhelmingness of this issue, on top of a bunch of other stresses that have built on me over the last couple weeks, buried me under a mountain of "am I ever going to get through this." Which led me to doing things like not making the really simple healthy dinner I had planned, letting the kids have extra screen-time (which inevitably leads to more wet underwear and fighting), and lying on the couch browsing social media nothingness for too long. Which leads to me waiting impatiently for my wonderful husband to come home and save the day. Except that he feels the same stress that I do about it oftentimes and doesn't always respond in superhero fashion. WHAT? Oh, right, he's human too! And so he came home and we dealt with it in our typical fashion when both of us are stressed. Throw together a quick not-so-healthy meal (or spend extra money we shouldn't be spending on a not-so-healthy-fast-food-meal), get the kids to bed as quickly as possible, and talk about it until we realize there isn't a quick solution and go to sleep grouchy, hoping in the morning we'll feel better.

Except tonight. Tonight, we had that not-so-healthy meal, where we did manage to avoid spending extra money by pulling out some boxed mac-and-cheese (which I hate) that I finally decided I was okay with buying to avoid our eating out on these types of nights issue. But then I rushed off to my Learning Circle where we talked about our expectations of ourselves as mothers. And I realized something. Whenever I don't live up to my personal expectations of myself as a mom I say something like this to myself: "You're doing it. AGAIN!" As in, "You're not asserting yourself. AGAIN!", "You're being lazy and not making dinner. AGAIN!", "You're laying on the couch wasting time. AGAIN!", "You're letting the kids watch too much tv. AGAIN!". And do you know what I realized? I am a great, fantastic, wonderful mom. I am. Period.

Yes, I fail at fulfilling my expectations of myself as a mother. Again, Again and Again. But I also get up, dust myself off, and try again. Again, Again and Again. At least I have expectations of myself. At least I try to make a good, healthy meal for my family. I even like to do it most of the time. I try hard not to let computer/internet/tv interfere with developing healthy relationships within my family. I try hard to do quality, meaningful things with my kids on a daily basis. I teach them and play with them a lot. I develop my own skills so that they can see me as my own person. I let them play without me interfering so that they can develop those imaginations and learn to fight their own battles. I am patient and kind often. I say sorry when I yell or lash out. I hug and kiss and tell my kids I love them often, throughout every day. I get down on their level to explain things. We talk about things that happen in life, and how to work through them. I teach them about my values and what's important to me. I listen and try to understand them. I love their dad, and show them and teach them about how our love is so important, that it is the foundation of our family. I teach them that it's okay to make mistakes, even big ones - that both daddy and I have made some really big mistakes. But we can forgive each other, and we can do better. I teach them that it doesn't matter how many times we've made a mistake before, it doesn't determine what we will do next time. What determines next time is how we prepare ourselves for next time we have the choice. And THIS is what makes me a great mom! Yes, tonight I made some mistakes. Again. The same mistakes I've made before. Someday I hope to be perfect. But right now, I can just keep learning what I need to in order to do better next time. I might only get a teeny-tiny bit better next time. But I will try again. Again, again and again.

So, "AGAIN!" You - the word "again" - will haunt me no more, but will be my happy companion forevermore!

Hockey

Cpc:
"I know what hockey is. It's where people ice skate and play golf at the same time."

The Seven Senses, Asperger's & Anxiety

We've all heard of the Sixth Sense I know...but this is real...based in science! We actually have seven senses. We have the usual five of course. Then we also have our proprioceptive and vestibular. Maybe their names are a part of why we don't learn about them in school, I don't know.

Anyway, when we very first learned about SPD, we learned a bit about these two senses. I totally grasped their meaning as well as how they would affect Cpc for his entire life. I have never been able to explain it to others very well though. So a couple weeks ago when a friend of mine (who is a music therapist) explained it in really simple terms, I got really excited. So, for our record and those who are interested...here goes.

Proprioception is your sense of your body in space. Meaning I can feel where my hand is in front of me, I can feel my where my leg is as I go to kick a ball. Vestibular is your sense of your body in relation to gravity. Meaning I can judge just how much muscle I need to use to stand up, sit down or walk. It has a lot to do with that inner ear thing too.

Cpc doesn't really have many sensory deficits when it comes to the usual five senses. Some SPD kids do, he just doesn't. But proprioception and vestibular - those are two things that really make his life rather tricky.

A while back I posted about the "therapy" activities we do with Cpc to regulate him. He doesn't need these activities to "get his energy out" like many people think. Rather, he needs these activities to regulate his proprioceptive sense, because for some neurological reason, his brain doesn't do it's job at this. Without the "input" he needs, Cpc will constantly and incessantly seek for a comprehension of where his body is in space. This will look like a behavior issue. He'll start purposely pummeling people, climbing on them  and pushing them. He doesn't want to hurt people, even though he often will. He feels really bad when he does hurt people. However, when he's disregulated he'll often hurt people and himself without even knowing it. You might suddenly have a head knocking against yours in an extremely painful manner and he'll have no idea what he just did. His brain just doesn't modulate that sense sometimes. We take that for granted!

The vestibular sense is something we deal with less often, nevertheless it's still a struggle at times. If Cpc's proprioceptive sense is really out of whack, then you can bet your bottom dollar his vestibular sense is a little off, but not to the extent of the other. We never really see his vestibular sense out of whack on it's own...for some reason they are very related for him. Back before we really got a handle on Cpc's needs, we did see his body have a hard time modulating it. He had learned to walk at 9 months, and around 15 months he suddenly had a really hard time. He would walk right into things, giving himself black eyes. He would randomly trip for no reason, much more than the average toddler. And boy did he LOVE to spin. He could spin and spin and spin. When we started Occupational Therapy we learned that spinning is the number one thing that can disregulate him. So we just don't let him spin. Period.

We were also talking with some people the other day about Asperger's, and since we were told he all but has Asperger's (before the diagnosis was melted into the Autism diagnosis), I figure I can do a little more explaining on that and how it affects us. Asperger's runs in my family. My Aunt has it officially, and pretty strong too. There are no official diagnoses on this, but we're positive that many of my Grandmother's siblings had it - at least 3, maybe more. My dad and his siblings all portray some Asperger's traits, some more than others - whether they like to admit it or not! So does my Grandma really - or at least she did before she completely lost her memory - now I'm not sure what to think! My siblings and I all portray some Asperger's traits, some more than others. On a lesser scale I have been able to note many of the Asperger's traits in many of my cousins by looking back on memories and some of the things I know about them. Autism is a spectrum disorder, and Asperger's is considered on that spectrum. Well, it really has a spectrum as well, and whether Cpc can have an official diagnosis or not - frankly he's on that spectrum. And maybe really my whole family is. I'm not saying we all have Autism/Asperger's. Not at all. What I'm saying is that you can't necessarily define where it begins and where it ends. We don't know what causes it. But it is definitely genetically linked - as you can see by my family. It is surely some combination of nature and nurture as afar as how it manifests itself. I don't know if my siblings, cousins and I all display some traits because we grew up around people with those traits or what.

I do know what traits I really struggle with, and what Cpc struggles with, and that they are things that are typical of Asperger's. Actually - as I've done my research I've learned some really interesting things that I want to share, and I'm going to do so in no particular order.

1- Asperger's presents itself in 2 different ways. One, a child will hit development milestones WAY behind. Such as speech - they won't speak until they're like 3 and then suddenly speak a lot. Two, a child will seem totally normal or even ahead developmentally other than some basic regulatory functions (like sleep and potty-training) and then they will show signs of regression. This is what happened with Cpc. Cpc's pattern is to learn something pretty early, and then regress a bit. This has happened with walking, talking, learning to do puzzles, and countless other little developmental steps. He also had the sleep regulation issues, and still struggles with regulating his bladder.
2- Children with Asperger's tend to have both Melatonin and Seratonin deficiencies. Cpc clearly had a melatonin deficiency, and I really don't know how to identify a Seratonin deficiency - maybe that's something I'll learn in the future.
3- Asperger's goes hand-in-hand with Anxiety. This may have something to do with the Seratonin deficiency. Anxiety is not always easily recognizable, and most of the time kids with Asperger's have no idea they are anxious. It was when the evaluator did Cpc's evaluation and explained this to me that I realized Cpc was anxious for the first time. He pointed out the symptoms to me, and it is since that moment that I started really starting to comprehend this whole Asperger's thing in the first place - and how there are symptoms throughout my whole family. I have major anxiety, although it is not constant for me - it is merely the direction I naturally lean under pressure and stress. It is severe enough for me though that my parent's divorce was extremely debilitating for me, and I had NO idea what was going on with me. I had constant anxiety until just the past couple years.
4- Kids with Asperger's have an excellent ability to hold it all together around others, but break down at home. What this means is that parents of kids with Asperger's can really feel alone. These kids are so stinkin' smart that they can try really really hard to do what they know their parents want them to do, act like they know they're supposed to act. They desperately want to please people - particularly those that they love the most. So they will hold it all together while they're out and about. People will look at these kids and say "those parents are making things up about their kids" because the kid will hide or mask their symptoms. But then the kid will get home and totally lose it because they've been trying extra hard to hold it together. Cpc's case is pretty mild so we don't experience the total breakdown after getting home from big things, but we do experience him holding things together pretty well around others. People tell us all the time how "he's so normal." Yeah, we know. He is. But he's also different. This is what makes us nervous about him going to public school. We're afraid that he will be under the constant strain of holding things together at school, and then he'll struggle at home more. So yes, we're still considering home-schooling him.
5- Kids with Asperger's struggle socially. I think this is probably the only thing most people know about Asperger's. For us this displays in three ways. One - it's really not good for Cpc to be around other kids when his proprioceptive sense isn't regulated. As a kid can you imagine wanting to be friends with a kid who hurts you and has no idea he's doing so? Yeah, this can put a damper on his relationships pretty darn fast. Two - anxiety can really get in the way of starting a conversation. So making new friends can be a little tricky for him. Also, he's more likely to struggle mending a little tiff. Three - because kids with Asperger's are so stinkin' smart - they tend to assume that if they know something, everyone else does too. This means they tend to seem like snobs. I struggle with this bigtime, although I hide it pretty well. You know how I said I caught onto the proprioceptive/vestibular thing pretty quickly, but had a hard time explaining it to others? Well, I sort of assumed that once I learned it, everyone else had too. I do this with everything. I cannot for the life of me comprehend how there are so many people in the world who don't understand how bad permissive parenting is, or that attachment parenting doesn't mean baby-wearing and co-sleeping. I learned all about that in college, and continue to increase my knowledge about that pretty regularly. So, I end up being kind of judgemental - and that's not really good for relationships either now is it?

This is all my interpretation of the things I've researched too - so don't take it has hard facts! I sure love Cpc, and am learning to understand him better every day. I am SO glad he's my son and I'm so grateful for everything I learn from him.

Parenting

Just a thought I had the other day....

One of the reasons parenting is so much harder than other jobs is that we are not just doing tasks; we are teaching habits.

Some days I get so frustrated with myself that after 29 years of life if still isn't a habit for me to do such-and-such. So of course I shouldn't be frustrated at the kids when they still don't remember such-and-such even though I have told them at least one hundred times! But I am!

Arc Loves Real Food

Arc got the privilege of starting solids in the past few weeks! She has been anxiously awaiting for some time now, and growing ever more hungry! Lucky for her, Santa brought her some babyfood!

She started out so excited about finally getting to eat that she barely made it through five bites before we had to calm her down with a binky and holding her. But she is now patiently eating her way through two meals a day and is as pleased as can be with herself! However, if I start taking too much time to take a bite or two of my own she is not afraid to remind me of her hunger with a good little scream!

Hunter, Shooter and Prey

We would like to introduce our newest family members!

For Christmas Cdc received a Betta fish and two African Dwarf Frogs. We actually just gave him the fish bowl and a gift card (since we were at the lake) and he got to choose his fish himself.

At the store his fish was a dirty white, but when we got home and put it in the tank it turned a beautiful red. Cdc named his frogs Hunter and Shooter, which led to the fish being named Prey. So far they are all getting along with each other very well. We did struggle maintaining the water temperature for a few days, which led to us exchanging the fishbowl for a small aquarium. I think We finally have them all settled.

Hunter and shooter managed to fit into their names pretty well right off the bat. Hunter likes to poke around the bottom of the tank inspecting everything, seemingly hunting for his prey. Shooter darts around the tank all day long, as though he is darting after his prey.

Hunter is on the left, minding his own business, as Shooter darts down on top of him.

HAPPY BIRTHDAY to US!

Its official! Our family is 6 years old! We decided to start a new tradition this year. We didn't even start it purposely! It sort of happened, and we liked it so much we'd like to stick with it!

Pmc and I are taking a night to ourselves next week for our Anniversary because that's when the timing worked out. So we threw a little birthday party for our family tonight.

We made cupcakes together and showed our wedding slideshow to the kids! It was such a fun, simple night. We really try to show the kids just how important our marriage is to us, and this just felt so right!