I'd Judge Me Too

Hello, Lovelies! As parents, I think it's almost standard to be at least a little judgemental. I mean, if you think about it, there are so many "Great Parenting Debate" topics out there. There's breast vs. bottle/formula feeding, cloth vs. disposable diapers, car seat debates, circumcision and so much more. We spend the days leading up to the birth of our new pride and joy pouring over all of the reading material we get our hands on. We vow to ourselves that we will follow the expert advice to the letter. We imagine everything to perfection. The reality is, there is no such thing as perfect.

In the months leading up to the Princess' birth, I wont say I read all of the books; that would be a lie. I did, however read every internet article that I could get my computer to reach. I tended to stay away from the articles about disabilities, birth defects and other issues. I couldn't imagine that possibly happening to my child. Never in my wildest dreams did I imagine that almost 2.5 years after I would give birth the the most beautiful little girl that I had ever laid my eyes on, would I hear the words "She falls onto the spectrum. She is autistic." So here it is: All of the things that I would have judged other parents for, and as a childless individual, I would have judged myself.

Television: 
I swore to myself that there would be absolutely no TV watching, aside from maybe an hour a day. That was quickly squelched when the King decided he wanted to help the Princess transition to her room and bed, so he put a TV in her room with lots of movies. I went with it. It helped. She went from screaming for hours to calm and content, and would happily chew on her pacifier and slowly fall asleep. She'd sleep through the night, and it was wonderful.

Dental Hygiene:
I suppose hygiene is really one category, but I have a couple to add here. So I decided to break it up to the specifics. I promised myself that we would get teeth brushing down to a science. Twice a day, keep those pearly whites nice and shiny! Unfortunately, the Princess has a real "hot zone" around her face and head. This means anything that comes at her face/mouth that she hasn't explicitly approved of only produces tears, ear drum bursting-- Mine-- and a tightly sealed closed mouth. If that doesn't get you to stop, then will come the hitting, of herself or you, whichever might be closer. Maybe both.

Hair brushing/washing:
Obviously, most kids have issues with their hair being brushed and tangled. I think that's one common complaint I've heard from many mothers that I can truly relate to. The Princess hates water on her face-- see the hot zone issue I was talking about?-- and absolutely passionately detests brushing and washing of her hair. The tears and screams come to such a rate that you'd think that we were pulling out her hair strand by strand. We're not. There's also a dead weight thing that she does, where at not quite 4 years old, she feels like she's well over 100 lbs. On the super rare occasion, she'll allow me to do her hair. When she does she gets the cutest styles I can possibly create. OK, so pig tails it is. Otherwise, messy ponytail or bun will suffice.

Eating:
This one is a biggie for me. I knew from the get go that I wanted my baby girl to have a much more balanced and healthier diet than I've ever had. When it came time to start to feed her solids, she fought hard. The Prince, as I discovered later was very much similar, with the exception that he moved on quickly and will now eat anything and everything we put in front of him. Once we finally got her eating the delicious looking puree, it seems that she never wanted to move forward. We got her to eat stage 3 foods, but that is where she plateaued. She will eat two jars at a time now, of stage 3 foods-- Only fruits with the occasional yogurt-- and eat 6-8 jars a day. Yes, I do still have to feed her, as she does not feed herself. I'm hoping that this will somehow be squelched by high school, but we'll see. We call her our fruititarian, but back to the dental hygiene, this does not help with the appearance of her teeth.

Those would be the main categories, but there is so much more to it. She's still in side by side play mode-- which works for the Prince, though he's wanting more interaction these days-- she wont make eye contact with anyone who isn't her family, or those she has come to see as family. Sometimes she gets the strangest habits, such as licking walls and windows. These are all things that as a childless woman, I would have judged. OK, so I'll even admit that if I didn't have an autistic princess that I might still judge these behaviors. We judge what we don't understand, after all.

I guess the moral of all of this is that as parents, we need to stand strong together and not judge each other. Well, as much as possible anyways. You don't know what the other parent is going through. Autism is a neurological disorder that you can't see with your eyes. You may not know that this child/person is autistic, and you may judge their behaviors. Until you walk in another's shoes, you wont truly know what struggles each individual has faced.

How Do I Protect You From Yourself

Hi Lovelies! I know, I know. It's been a while. Have you missed me? Because I've missed you. Anyways, lately we've been doing better with our sleeping issues and some of the upsetting behavior has started to diminish. As the dust clears from all of these things, there is one thing that troubles me.

It's the self injurious behavior. While the other tantrum throwing behavior is lessening-- The heel pounding, the closet door slamming-- this other behavior is taking it's place. It comes in many forms-- bouncing her head against the wall, kicking at herself in the rear and what can only be described as a "reverse worm" movement. It's not getting any easier to witness. It is only getting more painful. My heart breaks each time I see it. How, as a mother, can you watch this and not become concerned? I don't think any parent is truly immune to the heart wrenching feeling that comes with watching your 3 year old harm themselves.

So my question to you, my beautiful Princess: How do I protect you from yourself? When I imagined life as a mother; before you were born, still a beautiful life inside me, I imagined all the dangers in this world. I thought out countless scenarios of what could come, and how I would protect you. As an infant, to protect you from SIDS, I would listen to the advice of the experts on sleeping positions, pacifier or no. I would protect you from being cold by keeping you warm and swaddled, room at a comfortable temperature. From illness, I would protect you by keeping an environment that would be free of germs-- Well, as best as I can, as we all know that germs can come from anywhere, and some exposure isn't always a bad thing. I would vaccinate you to protect you from the germs that I would never want you to get.

From the bad guys in the world, I would shield you both physically-- If needed-- and emotionally. I would make sure to show you the wonder in the world as I see it. All while quietly keeping an eye out for the undesirable things and people. I could go on in all the ways I prepared myself to protect you. There was one that I never thought about. I never thought about how I would protect you from yourself.

You see, I never thought autism would be in either of our vocabularies. I never thought that this would be the reality that we live. But it is. With this reality, comes new challenges; New focuses. Now, I'm faced with what to do when you bounce your head against a wall. Do I pad the wall? Do I buy you a helmet? I'm not ready. Do I simply wrap my arms around you and love you through it? Something tells me that while I would love that option, you would feel too confined. I still want you to be independent, after all.

What do I do then? I'm told to try to figure out what sensory experiences you are blocking out or replicating-- Depending on the behavior. Vibrations, movements; these are all things that  could potentially help to curb this type of behavior. I'm not sure which ones you are dealing with. So I will go down the list until I find a solution. No matter what, I will find a way.

So yes, my Princess, if that means I have to buy you a helmet and pad your walls, then you bet your sweet patootie that I will be doing these things. We have a bit before I'm going to do that though, rest assured. I need to make sure that I've gotten to all the other points on the list first. Because I'm not ready to settle at the last resort yet.

Be Careful What You Wish For

Good morning, my Lovelies! Welcome back to my land of chaos. All the ups and downs of living with a Princess with autism. Of living with a non-verbal child. It's a challenge, always having to figure out behaviors and the pitch of the cries to figure out exactly what is needed. You start do daydream after a while, about what it would be like  to have that child say anything. I'm here to tell you to be careful what you wish for.

I used to hear of these defiant days of "No!", of "I'll do it myself!" and everything else that came from the frazzled parents trying to maneuver around these obstacles to ultimately get the obstinate toddler to do whatever it was that he/she was resisting. I would think to myself, "At least you know what they need/want. I'd give anything to hear my Princess say ANY word. I would take a 'No!' in a heartbeat!"

So when I started hearing the word "No," in it's different variations, I really didn't think too much of it. Not more than the usual feeling of it's a new sound that she has discovered, she will over use it until it loses it's attractiveness and move on. I thought it was cute. Key word: thought.

Here's where I figured out it was more than a "passing phrase":

Picture it: Princess is throwing a fit, pounding her heels to the floor.

Me: "I don't care what the problem is, we do not solve it by pounding our heels on the floor! Go lay down!"

Princess: "No!"

Me: (Not quite sinking in yet) "NOW!"

Princess: "No!"

Me: (One more time, slowly sinking in) "I SAID NOW!" (This is where I'm slowly trying to hide my smile)

Princess: "No! No, no, no!"

OK, so now I'm simply trying to suppress my laughter, and my frustration all rolled into one. All I can think is "I'm pissed because she's back talking me. But oh my God, she's back talking me!" You see the conundrum?

It's a very bittersweet feeling, really. We haven't added any new words to our vocabulary yet. But you see, now she's realized we respond to "No," and uses it as a blanket word when she's upset and needs something. Though that is surely fading as well.

So with all of this, I leave you with the very sound (albeit, cliche) advice of "Be careful what you wish for, you just might get it."

Mostly Cloudy With a Chance of Showers

Hi there, Lovelies. I hope you are all out there enjoying this month of May. Spring time, it can mean many things to many people. For some, it's the start of beautiful weather; for others, it can mean allergy season. Weather wise, spring time can be unpredictable at times. One day, it's sunny and beautiful. The very next, it's a blustery cold, windy and rainy day.

Much like life, really. If you really look at it, life is just a series of ups and downs. Rich wonderfully warm moments of love one moment; cold and windy down turns the next. We keep drudging through the weather, hoping from one moment to the next that we have the proper accessories to tough it out.

From one day to the next, I can never predict how the day is going to go. The certainties are that I will wake up-- God willing-- take care of my children, change diapers, feed them, make sure they're loved, and go to bed. Wake up the next day and repeat. Some days are just pleasant. We all wake up in amazingly good moods, we play throughout the day. We laugh, we smile, we love.

Then there are days that start out like today. My head is throbbing, I'm hungry and tired. Quite frankly, I feel as if I hear a child yell one more time, my head will almost literally explode. I am up to my elbows in dirty diapers, diaper rash, and frankly; a very grumpy Princess. I have been kicked and hit more times than I can count today.

Also, it seems that it makes perfectly logical sense to go after a round toy with your foot by shoving your entire leg underneath the baby gate. Thus starts the cycle again once we are sufficiently frustrated at both the lack of being able to grab said toy and now you're stuck. Now, don't get me wrong. We've had some laughs today too. We've danced a bit, we've played. We've spun around in circles. Overall, it's not been terrible. But it's only noon, and it really can go either way.

I'm sure I'm not alone out there in the parenting world. We all weather out the storms. Wouldn't it be great if there was some kind of a forecast system in place to let you know what kind of day you were in for? Like, today for me the forecast would read: "Partially grumpy with a 70% chance of emotional outbursts."

I sure hope I have an umbrella.

The Inevitable Question

Hello, hello, my Lovelies!  I remember in the days before the Princess was born, I tried to plan to the best of my ability. I would imagine various scenarios, how I'd play them out to their solutions and think to myself, "I hope I do it right."

Then, after she was born, in all of her newborn freshness, I'd wonder if I was doing it right. Silently, I'd hover any time I heard a sound. I would over analyze every cry. Every diaper change, every bath, every mealtime; I'd have a new question. Ultimately, I would simply say to myself, "I hope I'm getting it right."

As the Princess got older, however, my world and thoughts began to shift. I started to notice as her peers were quickly surpassing her in many milestones. One by one, they began to roll, crawl, stand and eventually walk. All the while, the Princess is still content to lay there. Now at first, this was very easy to ease my own nerves with the usual "Every child develops differently," and "She still has time to catch up."

Slowly even that was hard to swallow, as I noticed the gross motor skills weren't the only ones that she was lacking. I watched as other children held their bottle, explored items with their mouths, babbled, started eating solids and eventually moved on to table foods. The Princess wasn't having any of that. As far as holding her own bottle went, she seemed to have the attitude of "Why should I if you're going to hold it for me?" Eating foods was a new battle all together, and I realized quickly she was picky. Always preferring fruits to veggies, though a few sweeter veggies were OK. With each struggle, with each milestone that I'd watch others pass-- And she seemed content where she was-- I'd ask myself a new question: "What am I doing wrong?"

I couldn't fathom that my child was the one and only child on the planet who didn't like chocolate milk. Or why she simply wouldn't even try a new variety of food. Even before then, "What am I doing wrong?" plagued my existence. With the questions from friends and family members pouring in each time we saw them-- And the subsequent advice that almost always followed-- my world was crashing down, and all I could think was, "What am I doing wrong?"

I listened to all the advice. I kept trying new things. I put a brave face on every time I went out. Eventually, I really didn't want to go out much. The questions I'd get from those around me-- While varied in wording,-- rarely ever changed. "Is she holding her bottle yet?"-- That was a "No," until close to a year.-- "Is she sitting up yet?"-- "No," until about her first birthday.-- "Is she crawling?"-- "Nope," Until shortly after her first birthday.

That's where she stalled. For a long time. All the while, that same hauntingly annoying question followed me wherever I went. In the meantime, she became a very adept crawler. She got just about anywhere she wanted to be that way. She was quick too. But pulling herself up to a stand just didn't seem to appeal to her. In fact, she wouldn't pull herself to stand until shortly before her second birthday. Walking was later still, at about two and a half. With each passing day of working with her, wondering what could I possibly be doing wrong?

Trying to get her to eat table foods, well, I still can't. Some days, I wonder if she'll be packing little jars of baby food in her backpack each day well into middle school. I know that's not going to happen, but even I admit I worry.

I now know the "why" we've had all of this difficulty. I know it's not my fault, or something that I did or didn't do. I know it's not her either, or any type of choice that she may have made. It doesn't change the fact that the question still haunts me. That each time I hear "Is she eating table food yet?" makes me feel just a little smaller and smaller each time. I know it's not me. It's just a member of the family that hitched a ride with the Princess. One that came unannounced and shows no signs of packing up and going. His name is Autism, and he likes to make things more difficult for all of us.

Don't worry, we'll work around the little fiend. We'll find a way to show him that he is not who the Princess is, just a part of her. And some day, we will be able to answer the question of "Does she eat table foods?" with a victorious, resounding "Yes!" That will be all the proof I need that we can overcome and work through Autism. It's a fight that I'm willing to fight with my beautiful Princess.

Awareness Across America

Hi there, Lovelies. In honor of April being Autism Awareness Month, I wanted to show a visual celebration of autism awareness across the country. Please enjoy.

Blue Decorated Tree- Salem, OR

Blue Decorated Tree-Salem, OR

Blue Pinwheels- Corning, CA

Blue Water Fountain- Overland Park, KS

Autism Walk Makes Front Page of Local News- Mt. Airy, NC

Adventures With the Prince

Hi there, Lovelies! I've realized that I have shared a lot about the Princess, but not very much about the Prince. So today, I wanted to give him just a bit of a spot light. As you know, he's a typically developing one and a half year old. He's incredibly adventurous, and seems to look danger right in the eye and chuckle at it.

Now, while he is typically developing, he has been a bit delayed in the pulling to stand category. From what I understand, it is more likely that the younger sibling of an autistic child be delayed in some way. Not usually enough to fall on the spectrum, or even warrant early intervention. With all of that said, he has since become an adept stander, and has started to cruise.

Of course, his preferred method of getting around these days is to crawl. With this, gives him a new sense of freedom, and seems to get him into some interesting predicaments. For instance, I once found him between his crib and the wall-- Don't worry, there was plenty of room between, so he was OK.--  as he had crawled under. He's also getting much harder to contain these days.

Baby gates are a non-issue for him, as he can knock them down if they are not mounted to the wall. As of now, we use those big plastic tubs weighted down to block his way, though it wont work for long, since he's already realized he just needs to be able to push them out of the way. He just needs to gather the strength.

My personal favorite feat that he is working on is opening doors. That's right, ladies and gentlemen, the Prince is not walking yet, but he is trying to open doors! He just crawls up to the closed door, pulls himself to a stand and reaches for the doorknob. Yep, he's tall enough. With pulling a door open, it takes him a second to realize that when he's using said door to hold himself up; he is effectively keeping it closed. So he adjusts, tries again-- And Voila!-- he's opened the door.

His door opening skills have provided some entertainment, I wont lie. Most recently, actually. The King had just gotten home from work, and was rushing around the house getting more comfortable, and putting things away. I was in the Princess' room, changing her movie. The Prince was crawling around as usual, exploring his world. As the King went into the royal bedroom and closed the door behind him, the Prince came following.

I saw him pull to stand at the door, so I started narrating the situation; hoping to alert the King to the Prince's presence on the opposite side of the door. It went a little something like this:
"Be careful, he's standing on the other side of the door!"
"Oh, he's reaching for the doorknob, I think he's going to open the door!"

And in that exact moment, he pulled on the doorknob, with all of his weight pushing on the door, low and behold!-- The door opened!-- The Prince following after. Hands in the same position as they were when he opened the door-- Plop! Belly flop to the floor.

At this moment, the King apparently has just realized what's happened and asks:
"Did he just crawl, stand up and open the door?"
Yes dear, he did. I couldn't hold my laughter together at that point. I was in tears. The Prince was not, all was right in the world.

Well, looks like we'll be going out to purchase those special childproofing doorknob thingies-- Yes, that's my technical term for it.-- sometime in the near future. Until next time, my Lovelies. I hope you've laughed as hard as I have.