Nap Time

Good evening, Lovelies. I guess morning. It's about 4:30 am here, and I've been up for an hour. At 11 pm, I just couldn't keep my eyes open. By 3:30 am, I was up with the little royals again. What a wonderful nap. Now I sit here drinking my hot chocolate-- After an agonizing hour of battling with myself whether or not to make coffee. I opted for not yet. That could change.

Sleeping issues are something that have been quite prevalent in my world lately, and frankly, it sucks. The Prince would be easy enough-- In theory-- to wake up after a late night, deprive him of a nap and regulate his schedule. He sleeps. When he does finally go down for bedtime, he is out for eight or nine hours. With anywhere from a two to three hour nap in the middle. This is what the King and many others have recommended. To be completely honest, the only reason I don't do it is because I'm exhausted. Usually on those late nights, I've been up with the Prince AND the Princess. When I do finally buck up and bear it, I'm certain this will most likely be successful. Again, he sleeps. The Princess naps.

That is quite literally the only explanation I can give. When she sleeps, she sleeps anywhere from two to four hours at a time, and that's it. She'll be up for hours afterwards. Then down for two to four hours, rinse and repeat.

A real example of her sleeping schedule the last week or so-- We'll start from going to bed:

10:00 pm-11:00 pm: Falls asleep after a busy day.
1:00 am-2:00 am: Awake, usually in need of a diaper change and to eat two jars of food.
4:30 am-6:00 am: (This one varies) Eat two more jars of food and fall asleep.
9:30 am-11:00 am: Awake for the day.

Gosh, seeing that written out is almost a little depressing to me. Especially when I think of the earlier days of our existence with our Princess. She was an amazing sleeper. I couldn't have asked for an easier baby on that front. From about 2.5 months she started sleeping in her own bed, in her own room. Through the night. OK, I lied. We'd wake once through the night, requiring a bottle; then right back to bed until morning. It wasn't until she was about 2 years old that she started regressing, and I haven't seen those easy days since.
I've tried everything. I've tried night time routine. I've tried Melatonin-- On doctor's orders. I've tried herbal tea that promotes sleep. It's supposed to be amazing stuff. Maybe I'll try it next time I get non-children induced insomnia. With her, I tried to sneak it into her bottle. First I tried the mixture the same ratio as I do water to milk in her cups. That did not go over well. A few hours later-- And a trusted bottle later-- I tried two droplets of the tea-- Lemon ginger, for those wondering-- in her normal drink. Apparently, it's the little things and she still refused. So here I sit with tea and melatonin and a very awake Princess.

The King made a comment to me last night before I crashed. Something about it not being healthy to adapt to this nocturnal schedule like I am. I don't disagree with him. I sense where it's hitting my health. Beyond being exhausted and bags under my eyes, I've noticed some digestion issues. My temper is a little shorter than I'd like. I get random twitches and ticks. I know that if I were to consistently get enough sleep, that will all change. It makes me think though. If lack of sleep is doing all of this to me and my typically functioning body, what is it doing to the Princess'?

I know part of her sleeping issues are her all-fruit-all-the-time-diet. All that sugar, natural or not, can't possibly be good for her. She just wont even LOOK at anything else. Any other option at this moment is public enemy number one in the Princess' eyes. But I wonder if maybe we were able to get her to sleep, maybe we'll be able to get over the dietary issues. And the behavioral issues. Maybe that babbling stringing together that's starting to sound like sentences will become sentences. Maybe, just maybe.

So how do I do this, you may ask? How am I going to possibly get the Princess to sleep? I don't know. I do know that with the school year quickly approaching, I need to do something. Her doctor had mentioned getting her on a sleep aid at one point. First we would try melatonin to reset her internal clock. It didn't work. I haven't gotten her on any other sleep aids yet. I've heavily thought on it, and truthfully I maybe should have already just done it. I just haven't been ready yet. Something about giving my almost four year old a sleep aid almost feels selfish to me. Like I'm drugging her so that I can get some shut eye. If I can just keep wading through these nights, maybe I'll get my amazing sleeper back.

I know it sounds silly. I do. I can't help it. I am facing the reality that in fact I might be helping her.  As the King said, it's not healthy to have this sleep schedule. Maybe this is just one more thing to buck up and bear.

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.

The Princess Likes to Party

Hola, Lovelies! Today begins a new week, new challenges and successes. Hopefully your weeks are starting off well. The little royals are both still sleeping, so our week hasn't quite started yet. They'll be up soon enough, and it will be back to the grindstone. So now that I have a little bit of time, I thought I'd share how our weekend got started.

Friday night was like any other, both the Prince and the Princess were fighting bedtime. They've both become such night owls lately. We had been up and down a few times that evening, but by 1am all was quiet. It was time for the King and Queen to take leave to our chambers and get a nights rest in. OK really, the King was already snoring by this point, so I decided to join him. I slept pretty well, not a wake up all the way through. Or so I thought.

8 am Saturday morning rolled around and the house was quiet. I do my morning stretch, get up and head out of the bedroom to start the day. Not yet having coffee, or even opening my eyes for more than five minutes, I was not prepared for what I would stumble into. As I step out from my adjoining bathroom into my dining room, one of my cats starts meowing at me fiercely. This is normal for our day, it usually means she wants to be fed. That's when my eyes started processing what I was seeing.

Directly in front of me, our dining room and laundry room area was in shambles. Papers, my reading glasses, diapers and clothes scattered everywhere. To my left is our kitchen. My eyes scan that way. I'm in utter disbelief. Cupboards are open, the garbage is scattered on the floor: eggshells, coffee grounds, dirty diapers. The cat's food and water dishes are flipped upside down. Contents that were previously put away in the cupboards where scattered with the garbage. Complete and total chaos.

My first knee-jerk reaction was that it was cats. I was looking at the cat who was brave enough to show herself to me while I took in the sights. So sure that the only perpetrators to these vicious crimes of cleanliness was my two fur babies having HAD to run amok that night. As I'm starting to yell, "Stupid cats!"-- With a few more expletives thrown in there-- one other sight catches my eye.

The baby gate has been knocked over. As I make my way over to this latest development, I was cautious. When I get to the downed baby gate, I peek into the hallway to the left. There I spot a diaperless Princess sleeping on her bed. Two pieces of paper that were previously in the dining room were scattered around her. I put the baby gate back up and really make a closer inspection of the mess. Then I see it. The details that point to a Princess who had free reign of the house apparently while we slept. There's two of her favorite blocks on the floor, presumably in trade for something that she played with. There's the diaper in the middle of the mess which she decided to take off. Yep, our mastermind wasn't four legged. She was a three year old Princess.

As the mess was cleaned up, some thoughts came to mind. First, was what it must have been like for her when she decided to have a run with it. I imagine it was something like:
'I'm up! I'm bored. Where's Mommy and Daddy? Maybe if I kick at the gate a little. Hm, it fell down. Maybe if I check over here, no there not there. What about over here? Nope. Maybe if I do this, that will get them out. Sweet, I'm gonna play!'

Second, I'm so glad that the Princess doesn't have the instinct to put random things in her mouth. I imagine if it were the Prince, well I don't want to, because I know that he will have tasted most everything that he came into contact with. The thought makes me shudder.

Yet again one step behind the Princess, we installed some pieces to make the baby gate more secure to the wall so that there wont be anymore late night parties while we sleep. At least not until the teenage years. Until next time, Lovelies. Let us pray for no more late night parties.

Unprepared

Bonjur, Lovelies! I hope so far your week is going well! Lately, the Prince has been hitting a lot of milestones and becoming more mobile than he already was. He is as adventurous as a little boy can get, and already working on giving mommy a heart attack. I was sitting around with a couple of my friends the other day, one of them a mommy herself. We were discussing the concept of "Kids will be kids. Accidents happen." To which I explained that my best plan of action is to learn and adjust. Then she asked me one of the best questions I've heard.

"Don't you ever feel like you should already know this by now, since you already have a child?"

Great question. It didn't take me much more than a second to respond with, "Nope."

The look of shock at my honesty made me smile. But that wasn't my goal. It was my real answer. I am in completely new territory. Aside from the differences of boys vs. girls, where boys are naturally supposed to be more adventurous than girls-- Which I'm not sure I believe that stereotypical nonsense.-- I'm still on an extreme learning curve. While all children are different and develop differently, the difference between autism and typical development are vast. The Princess was so content to stay where ever she was, that she didn't even crawl until after her first birthday.

With that came a lack of wanting to put things in her mouth, a lack of exploration that would normally put her in a more dangerous situation. She didn't stand until close to her second birthday, climbed shortly after. The Princess wouldn't take her first steps until she was two and a half. Sure, this puts her in the mobile adventurous category, though differently. The things with her that have ultimately made me worry are still different than what the Prince does now to make me worry.

One day, she decided to take the computer chair for a 'spin'. She was doing great, round and round and round she goes... Until she lost her grip. I was just on the other side of the baby gate, and while everything was OK in the end, that computer chair was taken out of her 'zone' and has remained that way ever since.
The Prince of course, is very different. He makes me second guess myself regularly. He's become quite an adept climber, and enjoys climbing anything he can. His favorites include: the couch, the coffee table and the Princess' bed. He's climbed onto the couch, fallen off and then right back up again. That's of course when he's not eating. I'm told these are pretty common behaviors in boys. I can't completely attest to that, other than watching my friends and their growing boys. I'm sure I'll learn soon enough.

So there you have it, folks. No matter how hard I try to be prepared for whats to come, I know I will always be learning and adjusting as I go. That's just my normal.

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.

"Your Princess Falls on the Spectrum."

Hello, Lovelies! Today, I wanted to do a bit of a follow up piece to the "Not MY Child" post.-- If you haven't read already, you can read here.-- seeing as how that was simply when the word "autism" entered our world. It hasn't left since, but there were steps that lead us to this point. If you are a parent of a child with autism, you're probably going to be at least remotely familiar with the process, though each of ours is different.

As I was leaving the appointment that fateful day, the doctor told me that she'd be setting up a referral to Early Intervention. What they would  do is evaluate the Princess and we'd go from there. I had absolutely no idea what to expect. I agreed, and then went home and proceeded to have my breakdown. A few weeks had passed before I heard anything at all about the appointment, and we were in the process of moving to a different town. When I told the lady on the other end of the line, she told me the best thing to do is wait until we know for sure when and where we are moving to, as we may be in a different county and therefore a different office would be taking over.

OK, time consuming, but at least I was able to ignore the greater problem for a bit. I'd been in a cocoon of denial anyways for the time being, so what was a couple more weeks? Finally, we found a place to move into, and were on our way. Which left me with the next step of contacting the Early Intervention people, and figuring out where to go from there. We had indeed moved to a new county, and had to go through the new office. They told me that they'd be passing the referral on to the new office, and I should get in contact with them in a few days. So far, all it had been was a whole lot of phone tag. Great fun!

Once I did get a hold of the new office, we set up the appointments. The previous office we had gone to had appointments within weeks. This new office had an appointment in three months. Longer wait, but feeding my now living, breathing butterfly of denial wasn't so bad. The three months passed by way to quickly regardless.

First, we started with an office visit. They tested her hearing, which was a totally new experience for me, since I had never gone through this process. The Princess in my lap in a booth with various toys and noises going on around us. All the while they're noting if she looks or responds in the direction to. She didn't always, so they put little ear buds in her ears and told me her ears where working properly. Maybe she was just distracted. Then we moved to a room where for about an hour and a half or so, we watched the Princess play. They asked me questions, they tried to get her to respond. They left the room to tally the score.

"She qualifies for early intervention," they told me, "but we're not autism specialists, so we can't say to that. We do recommend an autism screening." We signed up for it. So far all this means is that my Princess is very delayed, but we don't know much more. Yet.

The autism screening was even more different than the early intervention. They come to your home. I was so not prepared for that. Now it means on top of everything else, I have to make sure to keep my house clean? To my standards of clean for company, you'd barely know there are children living here. Alas, we must move forward, there is no going back. Over the next couple of months, we had various people come into our home, from special education teachers, to autism specialists, speech therapists, occupational therapists, the works.

In each, we'd sit in my living room while the Princess ran from her room out to the living room. And back again. They would ask me the same questions that I'd already been asked a dozen times before. Making notes. Always making notes. While I hated this process, I was more than happy to be doing what was best for the Princess.

After what seemed like forever in this process, it was time for the fateful meeting. Everybody was there, each and every one that had come and gone through my front door to observe and evaluate my beautiful little Princess. Now they were all sitting in my living room. Each with their notes, each with their opinions. One by one, they told me where they saw her delays and her successes. With each one, I look and nod and smile. All the while wondering, 'Yes, I know this. But what does it MEAN?'

Finally it was the autism specialists turn to talk. I focus in on her, looking for either my damnation or salvation. Whichever it chose to be. And then I heard it:

"Your Princess falls on the spectrum." I think my world went a little blank at that moment. The end of that meeting really is a blur. I think we spoke about some assistance's. We spoke about what this would mean for the Princess, and for us. We were now her autism team. Her support, and we would all be fighting for and with her.

That was around a year or so ago. Since then, I wouldn't say she's a whole new child. An improved version, yes. We are making progress, very slow, but it's still progress. I know that we made the right choice for her. I also know most of all, that I am blessed to know this beautiful girl, and for her to allow me to be in her world.