Starting Over

Happy Monday, Lovelies! I hope you all had wonderful weekends! Our weekend wasn't a bad one, but it didn't involve much sleep. Lately, most nights have been consistent of night owl children-- I know I've mentioned it before, and from the looks of things, this wont be the last time-- and then they sleep all day. It's not my favorite process, but I can deal. So on Saturday night, I decided to call it a night at about 11:00 pm. Three hours later I woke up to the hubby crawling into bed. It always amazes me how he can go from zero to snoring in less than 60 seconds, but I digress. No sooner do I hear the snoring does the Prince start crying.

Not just crying, but screaming. At this point, the Princess is sleeping so I attempt to calm the Prince before that slumber is disturbed. No matter what I tried; cuddling, rocking, a new bottle or toy, nothing was working. He would just start crying again the second I tried to set him down. My last ditch effort was to feed him some graham crackers-- a personal favorite of his-- and try to get him down again. Though he is not crying anymore, he does stay up to play for another hour or so. By 4:00 am, I am exhausted. Fifteen minutes later, he is finally asleep. I crawl back into bed and try to close my eyes, but as it turns out, the soothing sound of snoring isn't so soothing after all. After tossing and turning for who knows how long, I start to feel that familiar pull of dream land.

It seems I've only slept seconds when I start to hear crying from the Princess' room. I shut my eyes tighter, hoping that somehow that will make the sound stop. It doesn't, shockingly enough. It's 4:30 am by the time I look at the clock, and my alarm is the sound of the Princess screaming. I go into her room and change her diaper, dodging kicks coming my direction. I try to get her a new movie and tell her that it's still bedtime. As the level of her crying increases, so does my frustration level. I decide quiet time in her room might do her some good, as sometimes this is the only way for her to calm down and relax.

After what seems like hours-- which was mere minutes, really-- the crying hasn't ceased. She kicks the walls and floor as she goes. Her face is beat red from all of her screaming, I know she's hungry, but she's worked herself into such a frenzy that she refuses a bite of her favorite food. All the while the crying, kicking and screaming doesn't stop. I start to yell, I'm so mad. Mostly because I just don't know what to do. I break down in tears myself. 'I just want sleep!' I think to myself. Then it dawns on me.

It isn't her fault that we're going through this cycle. Sure, she was probably woken up by the Prince, and when she found it to be dark and she had a wet diaper, she just wasn't happy. She wasn't the reason I had been up since 2:00 am. We were just feeding off of each other. I'm sure that my face reflected her beat red status. As I looked into my daughter's tear filled eyes, I resolved that I would change this. At this point I was still struggling to feed her. I took a deep breath.

"You and I, baby girl are tired. It's still dark outside. Let's end this cycle we're in and start over. Fresh. A brand new day." I don't know if the words were for her benefit or mine, but I said them anyway. While she had stopped screaming, I could tell that she was apprehensive. So I resolved to lead by my actions.
I wiped my eyes dry, slapped a smile on my face and started singing to her. I have no idea what I sang to her, I'm pretty sure I just put words randomly together to a tune. As we got through the first jar of food, her face wasn't red anymore. By the end of the second jar, she was smiling and giggling with me. The rest of the morning went really well after that, I'm happy to say.

The Princess eventually went down for a nap around 10:00 am. Shortly after, the Prince woke up. It seems that they effectively tag teamed an all nighter. So yeah, if you see a zombified woman on the streets who looks like she can't hold her head up, pay her no mind. That's just me. But pass the coffee, will you?

'The Look'

Hi there, Lovelies! It was another late night with the little royals last night, so they are both comfortably
sleeping in. Not me, of course. They've already conditioned me to wake early most every morning. I digress. I was talking with the husband the other night, and he was telling me about how his boss was asking him questions as to what autism was, what it was like to deal with it and what may cause it.

What I find interesting in this is that I do not get that type of response upon  a new stranger learning of the Princess' autism. I get 'The Look'. I can't recall if I've mentioned this look before, but let me give a quick description. 'The Look', as I've so dubbed it, is one that can only be painted as one of pity, empathy, confusion, curiosity and relief. Relief that they don't have to deal with it.-- I do totally understand the relief. I've probably had it on my face plenty of times before autism came into my life.-- With a slight tilt of the head and a raised eyebrow, this look portrays so much.

The problem here is that while this look says so much, our mouths usually fail us. Instead the actual worded response is "Oh, OK." and rapid change of subject. As if to say that I myself am so fragile that I would be offended by asking further questions. I wouldn't be. You see, if you talk to me about it, sure you'll see the frustrations that come with it. It's not a cakewalk. You may also find that my Princess is my hero. I cope with trying to raise a child with autism, one who is non verbal and is trying her best to communicate her needs. SHE is the one dealing with the body that betrays her. A constant onslaught of sensory overload that bombard,  overwhelm and downright frighten her. A world that she should feel safe and secure in can be the very thing that makes her feel insecure.

Mommy doesn't always get it. Mommy gets frustrated, she yells sometimes. Mommy sometimes cries and sometimes, she trembles. She does her best to treat each and every day like a brand new day. My Princess doesn't get the option to say "Today is a new day, today my body will give me a great day." But each and every day, she gets up with a smile on her face, ready to play and explore. Ready to try new things. This is why she is MY hero. She will always be my hero.

So, with all of that said-- Back to my main point-- Why would the King get any different kind of response than I would? His theory is that when they hear he has an autistic daughter, they assume that I am the primary caregiver-- an accurate assumption.-- so it's a different feeling for them. I suppose that makes sense. Here's the thing: There shouldn't be a difference in how the parents are treated. Moms are no more fragile than dads in these cases.

Today, I think I'll wrap up this post with just a few pieces of advice when and if you ever come across a parent of a child with autism.

1. Unless told directly, don't ask if there's something wrong with the child.
Not that I've actually experienced this, but I figure it's worth mentioning. Unless the parent is forthcoming with the information, it's probably not best to assume that there might be autism-- or any other special needs for that matter-- involved.

2. If you have a question, ask!
I think the common misconception is that we might be offended, or you might say the wrong thing. I enjoy when someone actively engages me with their curiosities, and I am more than happy to share my knowledge. If I don't know something, I'll tell you. Autism is still a vastly unknown neurological disorder. The only way we are going to gain knowledge is by talking about it and asking questions.

3. Unsolicited advice is never OK.
This one I think spans the bounds of all of parenthood, but still worth saying. Unless we ask for advice, don't give it. Each child with autism is different, and even if you do know somebody who knows somebody, who knows somebody with a child with autism, and this worked for them, it may not work for us. We may have already tried it.

Look, we all need support. Some need more than others. If you're faced with a friend or loved one who is encountering autism, show your support. I've always believed in the saying "It takes a village to raise a child." That is no less true of special needs children. Be that support, and I can promise you that you'll soon share in the joys of what overcoming autism hurdles can bring to a family, that kind of love can change us all.

Imitation

Hi Lovelies! They say imitation is the sincerest form of flattery. In my house, it's that and so much more. We use it as a way to deescalate a situation and we use it to help with speech therapy. Of course, we use it to be silly too.

My favorite use of imitation is to help with speech therapy. Seeing as how the Princess is non-verbal, and the Prince is learning to develop his speech, this is a crucial time that we really focus on getting the back and forth of conversation. Most would simply continue a conversation with their toddler, even if their toddler isn't actually saying any words. Eventually they will. It's a little different with autism.

With autism, things just seem to process differently. For example, with the Prince, we can show him how to do something, like stack rings on a toy. We might show him once or twice, he'll watch intently, then try. If he doesn't get it, he will within the next couple of hours-- to a day or two-- while he ponders how we were able to stack those rings, and he wasn't. He will come back to it, and just do. Epiphany, it works! The Princess on the other hand, is a different story.

We can sit her down with the same stacking rings toy. Attempt to show her the same way as a we had the Prince. She may gaze in our direction once or twice, or even stare. Her focus is the rings. She will then get up, grab two of the rings and run off. We've tried this with the same result many times. She'll get it eventually. Consider teaching the to and fro of conversation in the same light. With the Prince, we can continue to have a normal conversation with him as he's babbling back to us. Words will replace the babble. We have to wait for the Princess to initiate with us.

It usually starts with her saying "Bah!" and going from there. It tends to become a game to her, where she is constantly trying to throw us off our guard. "Gah!" or "Bah, gah!" come into play. This is where it starts for her. The smile on her face as she plays this game while simultaneously learning is enough for me to continue this mimicry until she grows bored with it.

I mentioned that we use this also to deescalate situations, but this really pertains more to the Prince than the Princess. You see, he craves back and forth interaction, whereas the Princess is perfectly content to sit and play seemingly oblivious to her little brother. He also hates diaper changes. Anytime that he is getting worked up into a fit, one of the ways that mostly-- not always-- works is to start mimicking his sounds. He cries "Ahhh!" I repeat it back to him in a slightly melodic voice. We then start this back and forth until he is smiling, memories of upsets long forgotten.

So you see, imitation is the sincerest form of flattery. In the right hands, it can be a most useful tool. It's a favorite of mine, and until the day it becomes ineffective, I will continue to wield it.

Grateful

Welcome back, Lovelies! I hope everyone is having a wonderful weekend! I have had a weekend of reflection, myself. I've been thinking about all of the ups and downs, the back and forth. Being the parent of a child with autism can be one of the most stressful things any mother has ever gone through. You know what? While I wouldn't wish a child with autism to any parent in the world, let alone that any child be diagnosed with it; I'm actually grateful for my Princess with autism.

I know it sounds strange, but there is a reason for this. Yes, autism has become the X-Factor in our household. We wont know how a day is going to go until we hear from Senor Autism. But the fact is, I'm growing weary about seeing some of the fear producing tactics used to justify something is unsafe. Vaccines for instance-- No, this is not a debate. It is only an example.-- have been a culprit for years about the dangers of vaccinating leading to autism. The way it sounds is as if it's the worst thing in the world to have your child diagnosed with autism. I'm here to tell you it isn't always pleasant, but it certainly isn't the worst thing in the world.

You see, with the Princess, you can take any and all affection at face value. If she hugs you, she means to hug you and give you all the love she can give. Her smiles are so genuine you can't help but smile back, because she's truly happy. Her laughter is equally as infectious. When she's upset, sure, the varying levels of what might be wrong can be up for interpretation. The point is that she isn't pretending. Something is very wrong to her.

The other great thing about having the diagnosis for autism is that suddenly, you are not alone. Teaching, training and guiding, all of it you have help with. Since her diagnosis, the Princess has been in specialized preschool. She has teachers who know and love her and will fight for her. She has occupational therapists and speech therapists to help. Yes, I am a stay at home mom which means the child rearing stuff, that's on me. For everything else, I have help. It's wonderful.

I know now, because of her diagnosis that her delays were not something that I was doing wrong. This knowledge and acceptance has benefited me the most. I spent my days leading up to her diagnosis wondering at each and everything what I was doing that wasn't allowing her to hit those basic milestones. Now, I understand that it wasn't me, it was her autism holding her back. Knowing this, I will help her move forward through the murk that is her autism, I will be by her side all the way.

The absolute best part for me? Probably when we went on an outing to a park with many others with children of varying ages. In that park was a gentleman wearing a speedo. Not sure why at the park and not a beach, but to each their own. Every other child there the Princess' age and up-- To a certain point, of course.-- turned to their parents and asked why. Not mine. While all of the other parents there had to come up with answers and explanations for their little ones, my little royals were blissfully ignorant. I was grateful.

Don't get me wrong, if I could turn back time and somehow fix the Princess' autism, I would. In a second. I can't. I can't change what is, I can only accept and move forward. I need to teach my children how to do exactly that, and I will lead by example. These are life lessons I think we can all stand to learn. Even in the darkness of your worst fear coming to life-- In any form, for me it was my child being diagnosed for autism. For you it could be something entirely different.-- if you find something to be grateful for, you have all the light you need to get through it.

Actions Speak Louder

TGIF to all of my Lovelies out there! I hope those that are working aren't working too hard, and to those who get the day off, enjoy! If you're a stay at home mom like me, you're probably just hoping that this gateway day to the weekend goes so easily that it's like it's our weekend already. For me, the Royals are still sleeping-- Apparently, they wanted to sleep in today, I am not going to argue!-- So I'm doing what I can to entertain my time. I don't want to clean after all.

I know by now you all know that the Princess is non-verbal. This is part of who she is right now, and that's just all there is to it. It wont last forever, but for right now, it is a part of our existence. While there are definitely some things I wish she could say, like "Hey, Mommy! I pooped!" That would be a good one. Or maybe, "I love you, Mommy." That would be a GREAT one. It's funny, but you'd think that if she were non-verbal, we'd still be in that phase where Mom and Dad are trying to gauge the pitch of cry to what need. In reality, if you open your eyes too, you'd realize her actions speak far louder than words.

There are some actions that I still don't have answers for. For instance, why she takes off her diaper as frequently as she does, astounds me. If her diaper were always soiled when she did it, I'd say there's your answer. But we will sometimes take off diapers within mere minutes of putting a new one on. For the most part, though, we are starting to interpret most actions. If she stands just outside her bedroom door, she needs something. What that something is, well, your guess can be as good as mine. If she runs up to you, and looks you in the eye, throwing both hands in the air, this could mean one of two things. Either she wants a hug, or wants to be picked up. The only giveaway there is if you do one and she wanted the other. Watch your eardrums, Lovelies. She's gonna blow. Then, there are these beautiful actions that are so incredibly self explanatory, that you'd be crazy to miss.

Picture it: The Princess is standing in the hallway. She's got a toy in each hand. You pick her up and over the baby gate, set her back down and say "Go to your chair." And she's off! You watch as she runs through the kitchen, into the dining room, straight to her chair. Can you guess what this means? I'll give you a hint: She's hungry. As you round the corner with 2 jars of baby food in hand-- Because who could eat just one??-- She giggles and smiles telling you that you've gotten it right.

In those moments are my triumphs. At that moment, I've figured it out. I've taken the impossible and turned it into the possible! In my chaotic world, I often feel like I just fall short. I feel like I'm always two steps behind. That the moment I feel like I've got things figured out, it all comes crashing down around me, and I've got to pick up the pieces again. But then there's these triumphant moments that tell me if I keep plugging along, if I keep picking up the pieces, there will be fewer to pick up next time. And maybe, just maybe, at some point way way far in the future, there wont be any more pieces to pick up.

Free Hugs

Good day, Lovelies! You know those moments in life where everything just seems to be crumbling and the only thing that you know you need to make it all better is a hug? It's the simplest form of human contact and comfort. We crave that closeness, that comfort to the point where the second we get it, all troubles seem to melt away. The Princess has these moments too, they just seem fewer and further between.

We recently went to the King's company picnic. As you know, this requires a lot of planning and preparation. For myself, this also requires sleep. So when 4:30am came around and the Princess was crying and needed to be taken care of, I knew that all I wanted to do was get her settled and get back to bed. Things were going as planned. She had a very wet diaper, so I changed her and got her a new movie. When I went to change her outfit to a dry, warm outfit, I had the most unexpectedly beautiful moment.

As I stood the Princess up to finish zipping up her outfit, suddenly she wrapped her arms and legs around me in the biggest, tightest hug. In that moment, my mind released any inkling of going back to sleep. Instead, I embraced this moment as I hugged her back. I so rarely get these moments to be 'Mom' that I couldn't let go. We sat there for what seemed like 30 minutes-- Really, it could have been an instant, and it would have felt like an eternity.-- until I felt her muscles relax and she slowly let go. From there, I got her a cup of milk and she fell back to sleep. It was too late for me, so I sat on the couch dozing.

Later that day, as we were about to leave, I was working towards getting the Princess into the car, when she did it again. I felt her latch on so tight that a crowbar wouldn't pry her off. She wasn't ready to get into the car yet, she needed her comfort. Again, I lost myself into the moment and hugged her back as tightly as I dared until I felt her release and we got into the car without further incident. The car ride to the picnic, I was in my own little bubble of a utopia from all the hugs I was giving and receiving from my Princess that it didn't fully matter that she was having a fit in the back seat.

When we got to the picnic, things went pretty smoothly. The Princess set to running back and forth at her usual pace. At one point, she really wanted to be held and if she wasn't being held by one of us, she had decided she would get someone to hold her. So she set out, running up to complete strangers to her throwing up her arms in a way that the King and I know means "Hey, they're not carrying me, pick me up!" Instead of picking her up, she received hugs. Many hugs, from just about everyone she encountered. Only once was she successful in getting a random person to pick her up.-- Don't worry, we were with her the entire way.

As we were leaving, and I was about to put her in the car again, she latched on. This time, it didn't last as long before she was ready. On our way home, I reflected on the events in the day thus far. I was wrapped in the warmth of my bubble of hugs and love that I got from the Princess that day. Watching her socialize and get hugs from others was just icing on the cake! Even as she was throwing a bit of a tantrum in the back seat-- She must not like car rides today.-- I was in my own little happy world.

I think she's realized that she can get me to stop pretty much whatever I'm doing by hugging me. She now gives me big hugs whenever I'm trying to lay her down, or put her in her room. While it doesn't change the end result of what I am doing, I am more than happy to stop for a time and welcome her into our own little bubble of free hugs.

Same World, Different Dimensions

Bonjur, Lovelies! In my limited free time, I tend to watch videos online. Mostly things that entertain me, make me think or just give me a laugh. I also watch different videos on autism, people with autism and signs of autism. A lot of them give me hope, they really empower me to empower the Princess. Sometimes they make me cry.

There's one girl whom I follow with autism, who is non verbal but has found a way to get her voice out into the world. She uses her computer to type out her thoughts, and you'd be amazed at what this girl has to say. This lets me know that regardless of if the Princess can yet verbalize to me her emotions, her wants or needs, that they're in there. I really do try to bring myself to the Princess' world as much as I possibly can. Until recently, I thought I was doing a pretty OK job. Turns out, I think I was wrong.

The video that I watched was entitled "Carly's Cafe" and in it, you are Carly-- The girl whom I was speaking about earlier-- sitting with your sister and father in a cafe. You want a coffee, but can't seem to express that very basic want. In turn, you get hot chocolate. The video gets chaotic as your senses go haywire. By the end of this video, I was sobbing. It was my proof that I was not doing a good job of trying to get myself into the Princess' world.-- If you'd like to watch the video, you can do so here.-- That no matter how hard I tried, I just wasn't getting it.

Let me give you an example of where I think I go wrong:

The Princess is hungry. She looks to me as she tries to convey this very message. This is how I imagine it goes if we were looking at it from her perspective.

Princess: "I'm Hungry, Mommy."

Me: "What's going on? Do you need a new diaper?"-- Proceed to change diaper.

P: "No, Mommy. I'm hungry."

M: "Hm, well that didn't work. A new movie then."-- Changes movie.

P: "Well thank you, but really Mommy, I'm hungry. Can we eat now?"

M: "Would you like a cup of milk? OK, I'll get you one."

P: "Great thanks, Mommy. At least you're trying."-- Drinks milk, but moments later is finished.

P: "OK, I'm really hungry."

M: "Are you hungry? Let's get you something to eat."

P: "Finally."

How it really came out-- don't worry, I wont go as long this time:

P: *Smile, giggle*

M: "Do you need a new diaper?"

P: *Smile, giggle* a few seconds later, *Scream, kick*

M: "New movie?"

P: *Scream, kick* *Smile, giggle* *Scream, kick*

You get the point. The point is, I try. I do my very best, but still it isn't enough. I wish I could figure out instantaneously what the Princess needs. I'm no mind reader. I can only do my best to interpret each sound, cry or smile. I'm not perfect. I have plenty of room for improvement. I will continue to do my best, to learn more, to improve.

Really, we're not in two different worlds, as I had originally imagined it to be. We're both living in the same world, just different dimensions. We just need to figure out a way to bridge the gap. Together we can. I know I'm trying and I'm sure the Princess is too. We'll just find our middle ground eventually.