Back In the Game (sometimes)

I've spent three years living life from the sidelines and finally, I feel like I'm being brought back in the game. Before thinking the sideline is a bad place, I'll tell you that it was probably the most important place to be, though admittedly unpleasant at times. In April, a shift began. Slowly but surely, Isaac began to handle more diverse situations, and slowly but surely, that meant I could step into the game, cautious for sure, but eager. I've stayed home from many events and family outings with Isaac. This allowed Isabella to stay in the game and have fun with Walter, and sure, there have been times when Walter has given up his spot and has been benched with Isaac. But it's usually me, because the reality is, I know Isaac the best (Walter would agree, so don't think I'm slighting him). 

As we drove back from our vacation a few weeks ago, Walter said that for the first time since having Isaac, he felt like we all went somewhere and we all enjoyed it. Getting to this point, has been like climbing a mountain that we thought would never end. I could list all of the things we've given up participating in over the past three years, or all of the times we've tried and Isaac and I have sat in the car instead, but that wouldn't be fun. I will say that one of the many things I've learned from Isaac (and Isabella too, in her less intense way) is to live in the moment. For a long time I wanted to escape from the moment, and that made me feel helpless. Instead of escaping, I began to realize that my job on the sidelines was to comfort when all I wanted was for someone to comfort me, to help him feel safe and secure so that one day, we'd get our chance and he would be ready to be a team player, and most importantly, even in his smallness, to make him feel accepted, because there will be many games in this life where he won't be accepted. 

For as long as I can remember, I've gone to The Ohio State Fair. I'm sure you already know, whether it's a state or county fair, it's a shock to the sensory system, so we knew it could be challenging with Isaac because it has been in the past. We arrived at 1:30 p.m. and didn't leave until 9:00 p.m. Isaac and Isabella had a blast, and we drove home completely exhausted, but so happy knowing that we all had fun. We were so excited about our all-inclusive family fun day, that we went to the zoo the next day, and then we went to the zoo again the day after that. All-inclusive fun really is as good as they say--we couldn't get enough of it.

As I'm writing this, I am thinking about how we've reached this more positive place with Isaac and I feel like I should share some things we've learned and found helpful over the past few years. 

A few tips for your sensory-sensitive child that I've found helpful: 

-Give a warning about what is to take place. Before going to a social gathering, we tell Isaac that we are going to see a lot of people (same with people coming over to our house) and there will be lots of kids at said place, and he might accidentally get bumped into (or whatever sets off your child), but it's okay.

-Slow and steady wins the race. You can't rush a child with sensory issues. If do, you're screwed--simple as that. Ease into each and every situation and pull back as necessary. I have learned with Isaac, that I need to get to every appointment, story-time, whatever, early. He needs about ten minutes to be in that environment before the hustle and bustle begins. Yes, this means we sit in waiting rooms for a long time. Yes, it is a pain. But I quickly learned that if we arrived at a therapy appointment and they were ready to take him back right away, he would freak out and the appointment wouldn't be productive. Now we get there early, and he acclimates to situations much better.  

It's tempting as a parent to want your child to participate in what you think is fun. Sure, you want them to think playing with their friends is fun, but if you stand there and say, "go play with your friends, doesn't that look fun?" And your child is thinking, "no way, they're loud, and not only are they loud, they might touch me" well, fight or flight takes over and all bets are off. I have learned from Isaac, that if I just let him observe, even if he doesn't participate that time, the next time around, he is more likely to engage.

-Accept that it doesn't take much for a big thrill. Isaac does not like slides. It doesn't matter what we do, he will not go down a slide. He won't even sit at the top of a slide. Guess what? It doesn't matter! Who cares if the kids goes down a slide or not? One day, when he's ready, there is no doubt in my mind that he will happily climb to the top and slide down. For now, he sits at the bottom and says, "weee!" and gets super excited about it. Again, what we think is fun, may scare them to death, so why push it? 

-If it is really loud, even if you don't necessarily notice the noise, but you see your child getting agitated, quickly and quietly move to a different room, or go off in a different direction away from the noise. I feel like I am constantly observing Isaac, but I know it's better to act quickly instead of let things get out of hand. Even though we try to push his limits, he does have boundaries and it is our job to be respectful of those boundaries. I think it helps that I am very sensitive to noise and large groups so I have some inkling of how he feels. 

-Have an object at hand that makes them feel safe. For Isaac, this is his pacifier and whatever toy he left the house with that he has deemed the most important toy of the day. Keep track of those items as if your life depends on it. 

-Know when it's time to leave. Just don't push your luck. As much of a bummer as it is, it's much better to leave with a semi-happy child than it is to leave with a screaming one. I've been in both situations, and trust me, when you see the red flags, make for the exit. If you do leave with a screaming child, don't get mad at them, know that you pushed the limits, reassure them that everything will be okay, and chalk it up as a learning experience. Think back and consider what the triggers may have been that set off your child, and you'll be more prepared for the next social gathering.   

What to do about siblings: 

As I recall, one of my mom's favorite phrases has always been, "life isn't fair". Life isn't fair. Learn it. Accept it. Get over it. BAM! She wasn't that harsh, that's just how I feel as an adult, because God knows, I know, life isn't fair. 

We try to stress to Isabella that life isn't fair because it truly is true, after all, and more importantly, our family is a team, and being part of the team means that you have to make sacrifices. If she is unhappy about having to do something because of/or for Isaac, we remind her that we are team, and we also remind her that Isaac has to wait for her while she has her ballet lessons, and he waits for her during swim lessons, and he waits while we take her out to ice-cream, etc. Before a play-date, I always remind Isabella that if Isaac is really unhappy, we will leave. She generally complies, and I try to find a balance between making the two of them happy. Sometimes that means we really do need to leave ASAP, and sometimes it means that Isaac and I can excuse ourselves to a different room for some quiet, or I can distract him just long enough that Isabella feels she had sufficient time to play with her friends. Honestly, sometimes grandma (otherwise known as, my mom) has to come to the rescue, so that we can all spend time with our friends without Isaac. We had a very unfortunate birthday party experience last month. It was a situation where Isaac decided he wanted nothing to do with it, and nothing was going to make him happy, so my mom met up with me and took him to her house. Thankfully, this allowed Isabella to continue playing with her friends, and Walter and I were able to spend time with our friends whereas, the plan was that I would take Isaac home (again, removed to the sidelines) and pick them up later.  

Again, these are things that I've found helpful in dealing with Isaac's sensory issues. You may not agree with how I approach these situations. I don't really care. What I do care about, is making my children feel like people, building trust, and accepting them for who they are. 

Our day at The Fair. Isabella, held a snake, rode on rides, learned how to use a bow and arrow, milked a cow, watched the most amazing Sea Lion show I've ever seen, and ate a funnel cake (well, not the whole thing). 

At one point during the snake show, Isaac took a keen interest in that man sitting next to Isabella. He stood inches away from him and stared at the side of his face. Apparently he was undisturbed by our child's strange behavior because he didn't even look in his direction. We had to pull Isaac away when he began peering around to get a closer look at his glasses. 

Isaac did not like the sheep or the cows.

Isaac performed his own show before the start of the what was a very boring show on Falconry.

If you hadn't noticed, I'm trying to hand off the camera so that I'm actually in some pictures and my kids know they had a mom. One of the best parts of the fair for me, was getting to spend most of the time holding Isabella's hand. I am usually the one holding Isaac, and watching (from the sidelines) Isabella and Walter have fun, so it was such a gift to walk around hand in hand with my girl.

My grandpa would have been proud. I had a nearly perfect shot.

Until next time.

-Sierra

Exercising with a five year old.

First of all, exercising with a five year old is definitely not a good idea. I've been trying to figure out how to exercise during the day, so that I have don't have to do it at nine o'clock each night when I'm already exhausted. Since Isaac cries when I pee, it seemed a far fetched plan that he would contentedly play while I spent an hour exercising. Well, as it turns out, he wasn't the problem. My little sports commentator was, and I heard each of these phrases, at least two times: 

She's better than you.

Why aren't you doing it. 

Look, I'm doing it better than you. 

She has her leg up higher. 

Why are just laying there. 

I'm hungry. 

Why can't I have the weights? 

I really wanted the weights!

I'm starving. 

She's doing it way faster. 

I'm sooo hungry. I'm starving. I need something to eat right now!

You need to do it faster, like her. 

Are you done yet? 

When can I eat? 

I'm seriously considering re-joining the gym. 

Isaac thought it was hilarious that he could put his pacifier on this toy and then put it in his mouth.

We are also working very hard at getting him to agreeably sit with us for dinner, and have a tube feeding at the same time (that's the tricky part). The last two nights it has worked perfectly. In his mind, tube feeding + high chair = DVD player, or else I'll scream forever. So we are very grateful for a couple peaceful meals.

If I'd kept track of the hours Isabella spent cleaning the chalk board over the past few days, you would assume I was running a child labor camp. It's clean. And I never asked her to do it. Obviously. If I'd ask she would have thought I was torturing her.

Isaac's Occupational Therapist is amazing. First of all, she's the polar opposite of me. This means that she is always super peppy and when she sees Isaac she says, "HIIIGH FRIEND!" in a really loud high pitched voice, and has so much energy, that I wish I could bring her home with me. She dressed up as a ladybug on Halloween, which totally freaked Isaac out, but he got over it and agreed to work with her that day. I reserve my high pitched happy voice for Stella and our nighttime cuddle, which always make Walter roll his eyes. It goes something like this: Well there's my puppy daaawwg. Oh what a cute Stella Bella. You're my poopsie poopsie puppy do...okay, that's probably enough. Please don't stop reading my blog now. It's our moment, okay?

She tried to get Isaac to pretend he was eating the rice. He gave her an intense look of disgust and refused to touch the spoon.

Another mom at OT was commenting on how angelic Isaac always looks..."does he ever scream?" Does he ever! The kid has lungs of steel. Don't let his blonde curly hair and big blue eyes fool you! Just hang out at my house for a day and a night.

Isaac has started using a few new signs lately: outside, like, stuck, train (correctly, instead of his own variation), sit (which has only increased his bossiness), diaper, out, open, shoes, socks. He is always saying some new sounds, and makes verbal approximations to the words: Woody (essential), help, house, home, Mario (another important one), Wii (can you tell what he likes yet?), Luigi (yep), Isabella (ba), Oma, Opa, Papa, and I'm sure a few others.

In OT he is working on some fine motor skills such as, zipping a jacket (we practiced about thirty times during ballet today, so he's pretty good at that one now), and also everyday tasks like helping to put his pants on (now if I can get him to stand, and ask him to show me a leg, he will help put his leg in his pants), taking on and off socks and shoes (which we're actually going to stop working on since he is getting his braces next week, and he will have to work up to wearing those all day), recognizing that he needs a diaper change, telling us what he wants without throwing a tantrum, touching food, transitioning from playing with one toy to playing with another (agreeably), and about a million other things. We're a very long way from these everyday tasks, but he is making progress in baby steps, and we'll take it!

My lesson learned for the day: don't put hummus in Isaac's blend. He's been smelling like garlic for several hours. I like garlic, but when it's burped up...totally gross. I hope you enjoyed that little tidbit of information.

Goodbye!

Wash. Rinse. Repeat.

I desperately wish that I could turn off my mind. I really think that God should have given us each a little switch. Too bad He didn't consult me on that.

I realize it has been almost two weeks since my last post. I wish I could say we've been having fun. But, we haven't. Isaac is so cute when he falls asleep at night. He pulls the covers up to his little chin, and tucks himself in, then wiggles with happiness and looks at me with a big smile. And then, in the blink of an eye, we've slept very little, it's approximately six o'clock a.m. and Isaac is in yet another bad mood. Wash. Rinse. Repeat. That's what my life feels like--except it has nothing to do with washing hair.

People have been asking me repeatedly (see, there's a theme to this post), "why is he crying?", "what's wrong with him", "is he tired....hungry....hurt somewhere--ANYWHERE"...WELL HOW THE BLEEPETY BLEEP, BLEEP DO I KNOW?!

Oh, by the way, if you haven't already caught on, this is an angry post.

Please stop asking me what's wrong with my child. I have no idea. He has about ten doctors, they have no idea. He has four therapists, they have no idea. Maybe one day, when he can actually talk, he'll tell us.

A few nights ago, I asked Walter, if he could wish for one thing, what would it be. He thought about, and came back with some deep, thoughtful response. Mine wasn't deep. In fact, it was quite shallow. I didn't say that I would wish for Isaac to be normal, that I wish he could walk, or talk, or run, or even eat, I just wish he would spend more hours out of each day, happier than unhappy. That's all I wish for.

For all of the readers who need something happy to read, today officially began our journey of homeschooling. That's kind of a lie because we've been working on math since June, but today, we added the rest of the subjects to our schedule. Isabella's phonics lesson was on the letter 'M' and she was supposed to think of an object beginning with the letter 'M', and draw a picture of it:

"What can you think of that starts with the letter 'M' that you want to draw a picture of?"
"Hmmm...I know! A mammal!"

A mammal. Not a mouse, or a muffin, a monster, or hellooo, mommy....a mammal. She's funny.

Some Isabella quotes:

Mommy, Isaac is just like Hello Kitty, he's cute, soft, and cuddly. And mommy, you're just like Barbie, because you're beautiful. 
     -Thankfully, I'm not "just like Barbie" or I'd fall on my face.

I just love, love, LOVE the letter 'P'! 

It's just too much work for me (to do her math work sheet), and then, I feel in my heart, that I want to play with my mp3 player (that Walter found while cleaning some stuff in the basement).

Mommy, why do you have an attitude? You are having the same attitude as daddy about me going to bed.

"No, I don't want to read that story tonight!"
"Why?"
"I don't like that story."
"Since when?"
"Since twenty years ago."

To a stranger: Um, Isaac doesn't actually like when people touch him. It makes him grumpy. 

At a very stressful feeding therapy appointment: I think he just wants you to give him the toy. 
     -Yep

You didn't give me any green paint, so perhaps you could get some for me. 
     -Perhaps.

And the finale, because I couldn't help it, and I really need things to laugh about these days: 

Daddy, that bug probably fell down into the basement just like the spider that was in my room did, and now they're probably making love.

Goodnight. 

Definite Dysfunction

I was given the write-up from Isaac's OT Evaluation and it sat in my car for a few days, because that's what happens to things that enter my car, they get sucked in and forgotten about. Don't worry, I bring my kids in the house. Last night, after I sifted through some junk, I found the paperwork, along with the information for the parenting class that I'm supposed to "strongly consider" in order to deal with Isaac's behaviors. From a sensory perspective, Isaac is considered "typical" in a couples areas, has "some problems" in a couple other areas, and "DEFINITE DYSFUNCTION" in a few other areas.

I've read a fair amount over the past year about sensory-processing disorders, and guess what? Me, myself, and I, experience definite dysfunction in the area of auditory processing. I'm being a tad facetious here, but to be completely honest, when Walter chews gum, or picks up one of those mints upon leaving a restaurant and I hear his teeth crushing it up on the way home, I want to scream. In an effort to help him become more empathetic toward my dysfunction, I told him a few weeks ago that when he does things like that, eats hard candies, chews gum, makes any sound repeatedly, it feels like tiny worms are crawling across my brain.

I thought that impressing upon him the idea of worms in my brain would make him think twice about that mint--it didn't. My family feels bad for Walter because I make him watch TV at lowest possible volume setting, but I think everyone should try to imagine worms on their brain, and then maybe they would understand.

Don't worry, Isaac. I get it. Maybe when people talk to you, look at you, or God forbid, touch you, maybe then you feel the worms too.

Walking

Three weeks ago, Isaac stood up and walked across my grandma's couch. Since he's being keeping this skill a secret, we were obviously shocked. So I told him, if you can walk on a couch, you can walk on the floor. After a fair amount of encouraging, nagging, and cheering, he stood up, and took a few steps. Walter said, "how cool will it be when we're in the kitchen, and Isaac comes walking in?" Dude, that will be so cool. (I don't say 'dude', but Sarah does, and it seemed appropriate).

What else is new? We've made some progress in the feeding department. Isaac is now eating, by mouth, about two to four ounces of puree, each day. This all takes a fair amount of bribery, and I have to up the ante with cooler toys each session, but I'll take it, especially since we aren't using the TV as bribery. He gets tired after two ounces, so I try feeding him two times each day, and that is going really well. His mouth is definitely getting stronger and he's working on making new sounds. Did you know, speech and feeding go together? Poor feeding typically results in poor speech. Who knew that those mouth and facial muscles are working so hard all day. I know Isabella's are working extra hard since she doesn't stop talking. Last week Isabella told me that I never talk to her. Right. The last I checked, she talks all day, and I am typically required to respond otherwise, she'll repeat over and over again until I actually respond.

A few other comments from Isabella, "When I'm a mommy, I will never, ever have rules." Tuesday night, she told Walter that she wishes she could live by herself so that she can go to bed whenever she wants. It is so hard to be five. 

We've had some major success with grass! Isaac scooted across the grass with his trusty inner tube.

Walking!

Yo, Stella, did you see that!

I guess he made up with the swing. For about a month, he'd cry when we'd go near it.