Things I Didn’t Know About Oscar
Now that Oscar talks a little, I’m finding out all kinds of things about him that I didn’t know previously, like . . .
His favorite food is juice. He did not elaborate on this, but I suspect it’s not the juice I buy in a bottle, but the juice that Norma makes him in the fancy juicer.
His favorite color is “yellow . . . no, orange, no, red.”
He pronounces “yellow” as “jello”. Yes, our nanny is Nicaraguan. He can also say “vamanos a casa”.
When he’s thinking about how to answer a question, he touches his index finger to the middle of his lips and says, “oh . . . hmm” and taps his lips a few times. It’s precious. Etta has started doing this, too, to be like her big brother.
He’s very contrary. I actually knew this already, but he loves to say no, and it’s not just “no,” but “NO [insert word for what he doesn’t want plus the next logical term]”, like “NO doctor, NO medicine.” He’s also a fan of “nuh uh uh” while waving his finger.
He didn’t know what the ocean was until December. We went to Monterey right after he got his glasses and when we crossed over the mountain and saw the water for the first time he said “Mom, what IS that”. I had no idea what he was referring to, thinking it must be some little bird or a truck, some detail, but then he said “blue water.” I said it was the ocean, which he repeated and said “BIG water” and I realized how much he had not been seeing for the first three and a half years of his life. Like pretty much everything. We’ve visited the ocean many, MANY times (two trips to Hawaii, one to Mexico, another to Thailand and just going to the beach here in Northern California) and he had never known what we were seeing.
His favorite thing to say is “what is that,” and he’s very quickly picking up on so much. It’s somewhat reassuring that he’s not just picking up on some things that he “should” have known; he’s focusing his questions more on things that he might not have noticed even if he had been able to see. Like, he’ll pick up a toy and not ask what the toy is, but he’ll ask about the different components – those are the wings of the airplane, the engine, the fuselage, the landing gear, the tail, etc.
He worries a lot about things I don’t think he should worry about. If he or his sister spills even a drop of water on a rug, he’ll freak out saying “oh NO, NOOO” and for the next day or two he’ll say “rug wet, oh no.” He asks about the iPhone that we lost months ago almost every other day, “black iPhone, where IS it? Where did it go?” I’d like the answer to that one, actually.
He listens carefully and understands a lot more than I ever imagined. I suspect this might be a function of the fact that he was pretty much blind and incapable of speech for the first three and a half years of his life. Last night I was trying to get him and Etta to go to sleep by telling them a story about a mom who was thinking about taking a weekend away from her kids to go to a photography retreat (we’re not into conventional story telling here), but she couldn’t decide whether to go.
He answered by sitting up, leaning over me and placing his hands on either side of my face and saying “no go Mom.” When I asked where the mom should go instead, he answered “castle.” Castle is Disneyland in Oscar speak. Obviously, I’m not going to the photography workshop. Who would want to spend a moment away from this kid when he’s getting even more interesting?
But we’re not going back to Disneyland just yet, either.
Oscar Day #4
Not nearly as dramatic or emotional as Oscar Day #1, but not a great start to our day today. Poor sick boy . . .
What we brought home from Disneyland
three sinus infections (all of us)
a yucky cold (Papa)
three ear infections (two for Etta, one for me)
bronchitis (Oscar)
whooping cough (me, thankfully the kids are fully vax’d)
measles (Etta . . . don’t get me started)
two cases of pneumonia (Oscar and me)
The healthy one, now just a little crusty from her rash:
Joy of Love – 17
Today’s theme? Staying in. Something we’ve been doing a lot of lately. Well, not something I’ve been doing, since I’m slammed at work, but the kids have been doing pretty much nothing other than hanging out at the house. Know why? Cause they’re super sick. I know this because I’m really attentive to their health our pediatrician clued me in today at Etta’s well baby check that she has a double ear infection. Yep, that I missed entirely.
She and her brother have been sick for weeks, seemingly passing one virus to one another every few days. From what I have been told, they probably developed a sinus infection, leading to the nastiness in Etta’s ears. Oscar’s ears are fine, but he’s battling a very bad cough.
Because of this, we’ve spent most of the week in the house. This has resulted in Oscar missing all of his therapy for the week, which is not a good thing. In the absence of our much enjoyed OT, I have taken to providing my own sessions for the kids (at a massive savings, too!). Today we smooshed (yes, that’s a word) “therapeutic” shaving gel (that’s the kind that should cost $2, but you pay double for it) with finger paint all over the kitchen island. This turned out much messier than anticipated.
Etta has some very minor sensory issues. She hates to have food or anything on her fingers, so at first she was not all that into this project. As you can see, that quickly changed. She even got Papa into the action (although we don’t have any good pics of it). We had to bring the fun to an end, though, when Oscar decided that Etta really needed to be entirely covered in soapy paint.
Oh, and in viewing these pictures, please do not haul off and call CPS. I do feed Oscar; he just seems to be going through a growth spurt right now.
Joy of Love – 4, 5, 9, 12
I’m such a cheat, but I’m choosing to take photos that can work for different categories in this Joy project, which I think is better than simply abandoning it altogether. Today I worked on capturing the kids’ eyes, what they wear, what I love to hate about them (as if) and their passions/hobbies. I am not posting Oscar’s photos, since I am incapable of taking pictures of him that do not have a nasty glare on his glasses. It’s really depressing. He has such pretty eyes, which are actually functional now that he has glasses, but I cannot see his eyes anymore because of the distortion caused by his incredibly high prescription. His vision is clearly more important, but I do miss seeing his eyes.
Instead you get to see Etta doing what she loves most, laughing, while wearing her (almost) ever-present hairbow. She hasn’t yet established any hobbies, so I had to go another direction here. I tried to abandon her hairbow ritual last month, but Nanny Norma reinstated the tradition. Both she and Etta are always so much more accessorized than I am, so I’ll defer to them on this issue. This is what I love to hate. I love Etta’s hair, but I’m certain that I’m messing it up, so I’ve developed this fear of it as well, which I hate. I’ll never actually hate her hair or doing it, but I certainly hate how much I worry about messing it up or not maximizing its potential (yeah, I know how screwed up that is). I love this obsession, though, with her hair products and styles, things I frankly don’t give much thought to for myself.
Joy of Love – 10 & 13 – Comfort & Routines
Oscar having his morning coffee. It really is coffee. It’s just that it’s about 90% soy milk, 2% coffee and 8% sugar. He gets a variation of this concoction once a week, usually on Sundays, but sometimes on Tuesday morning when we’re rushing to our combo OT/speech session and he hasn’t had much to drink yet. He usually doesn’t get the opportunity to toast the occasion with Papa, though.
Etta has her own morning beverage ritual, naturally. Sadly for her, hers is 100% milk. Despite her heritage, I’m holding off on the buna . . . for now at least.
This is also Etta’s spot, her special place in the house. Each and every morning she is gently placed on the right side of the sofa, where she curls into the pillows and has her milk. The spot where she has taken to looking up to the television, pointing to it and demanding “movie now” while she has her milk. She only gets her movie on the weekend, but it doesn’t stop her from asking every day. Or following up when her request for a movie is shot down by asking for a “DVD” instead.
Disneyland with Sensory Processing Disorder
Any trip to Disneyland is a tiny bit daunting, but if you have a child whose needs are, say, “special,” a trip can be overwhelming. Worries abound – is it going to be overwhelming for him? Is he going to be able to enjoy any of it? Am I going to be able to enjoy any of it? What if he has a meltdown / starts raging? What about your other kids? Will we even be able to do anything they’re interested in? Are we going to end up spending most of our time in the room recuperating from all of the excitement / stimulation? If so, is this a colossal waste of money? Is it even worth it?
If you have a child with special needs like sensory processing disorder or autism, these thoughts are just the tip of the iceberg.
Obviously, I cannot answer these questions for you, but I can give you a tip that you might not be aware of that could actually transform this vacation from something you endure to something you all enjoy. It’s called the Guest Assistance Card, and (as Grandma pointed out at one point in our trip) it’s worth its weight in gold.
What is it? It’s a card you carry with you throughout your stay at Disneyland that alerts cast members to the fact that your group needs special assistance. Depending on your needs you’ll be asked to wait in a different line from the main line or be asked to stand in a designated spot while you wait. It’s tailored to the need of the guest who, for whatever reason, cannot or should not wait in the main line.
What isn’t it? A pass that lets you cut through all lines or go to the head of the line. This is super important for everyone to note – especially those people who are NOT carrying one (and may get angry that others appear to be getting preferential treatment) and any parents who might think that this pass is going to turn Disneyland into their own private theme park. That’s not the point here, folks.
How do you get one? Go to City Hall on Main Street and explain why you need one. You don’t need any medical papers explaining your special need, but you do need to be able to describe why you need assistance, including what would/could happen if your child were to stand in the regular line. After hearing our explanation, the woman at the desk told me that’s exactly why they have this process and stamped our card.
How do you use it? This varies by ride, but usually you go to the entry where there is a wheelchair symbol. If there is Fastpass, you just use the Fastpass system (get the ticket and come back at the designated time). If you have questions, just ask the cast member at the attraction; they’re super nice.
Why use this? Obviously the answer to this varies depending on your need. I was alerted to this system by a friend, and while I thought about using it, I kind of talked myself out of it until Oscar’s doctors, therapists and psychiatrist told me I was insane (okay, maybe the shrink said she “would strongly encourage” me to rethink my plan). For a kid with SPD, standing in a line at Disneyland, with hundreds of people crowding and pushing and the noise of the rides and all of the people, it can feel like the masses are about to literally crush you.
Last year, not using this card, we rode maybe two or three rides, returned to the hotel for 5-6 hours to rest and then went back to the park for a couple more rides in the evening. After a good night’s rest, we repeated the process on day two. All in, Oscar and I rode maybe ten rides total. In two days. And the mere thought of going in one of those lines again with a child teetering on the brink of raging after being pushed/pulled was enough for me to seriously reconsider another trip to Disneyland ever again.
This year, we did not ride significantly more rides per day (and we certainly did not run from ride to ride), but we spent more time in the park looking at things, wandering around, spending money (believe me, this thankful parent spent far more as a direct result of her feelings of good will towards the Disney family after this) and just enjoying ourselves. We still took long breaks when it was clear that we were at risk of Oscar melting down, but we weren’t at risk of that after half an hour of being jostled in lines. It was more like a “typical” risk of a toddler tantrum after two to three hours of “regular” park experiences.
The other thing I noticed was that I was not spending all of my time shielding Oscar and worrying about the impending meltdown. Last year I was constantly on alert for anything that could set him off while we were in line; finding ways to increase our personal space while avoiding a confrontation with some of the more aggressive parents waiting in line and generally waiting for IT to happen. This year, waiting in the “other” line, where most of the parents had kids like mine and were so much more aware of personal space issues, I found myself waiting in line like the parent of a toddler without sensory processing disorder. You know, a typical toddler who wants on Dumbo now. It was great. Plus, most of the kids in this line were simply a pleasure to be around.
What to know. Okay, it sounds like a golden ticket, right? In some ways it totally is. In others, not so much. Like I mentioned earlier, this is not a ticket that lets you avoid lines. In fact, at some points of the day, these lines will be LONGER than the “regular” line. Depending on your need, theoretically you could switch to the “regular” line, but that was not really an option for us, since we needed to have more space than that line typically affords. So, when we were faced with this, we just skipped the ride and tried to come back at a later point. We encountered this on both Small World and Dumbo.
You may also be confronted with at least one embittered parent wondering why your kid is getting “special” treatment, wondering aloud how many rides he’s been able to go on that day. I actually answered him that at 8:30 pm that day we had gone on exactly five rides all day. I seriously doubt that any child who needs this card is using it to ride dozens of rides per day. For us, this card just made the rides we went on that much more enjoyable because they were fairly stress free. And, if one is considering defrauding Disney and fabricating a case for his child to get one of these cards when the child doesn’t actually need one, I would encourage him/her to consider that perhaps the one thing better than having this card is not needing it in the first place.
Other SPD Considerations. Any toddler at Disneyland is going to be overstimulated by the end of the day to some extent. Kids with sensory processing disorder are going to hit that point earlier than most. Oscar’s SPD results in his being overwhelmed by sensations. While he is sensory seeking in a few ways, he is mostly what they call “avoidant”, which means he simply cannot handle sensations that children typically can cope with. In addition to the guest assistance card I discussed above, there were a few other things we did to get us through the trip.
First, quickly establish which kinds of rides your SPD child can deal with. Oscar cannot cope with the “dark” rides. The noises and lights are just too much for him. We tried one and avoided that entire category the rest of the trip. Note that there are a lot of these rides, so it’s a fairly significant limitation if your kid isn’t going to go on these.
Second, find some “quiet” rides that can serve to be both an event and some down time. Oscar found one of these on his own – the big white paddle-wheel boat. He loved it and it was a perfect way to go from the intensity of some of his rides to the relaxation he desperately needed. The monorail and Disney train are also good for this.
Third, find the rides that actually serve as part of your child’s “sensory diet” for the day. The spinning from the teacups, the up/down flying motion of the rocket ships or Dumbo, the music from Small World, the carousel or the concerts throughout the park, the lights in the Toy Story ride, it all counts. There are also playgrounds within the park where kids can run, jump and climb without risking getting lost. We even threw in daily trips to the ice cream parlor for those textures and aromas.
Fourth, be aware that the fireworks and World of Colors might be “too much” for your child. Oscar loves the look of fireworks, but the noise is just too intense. Same with World of Colors; he was mesmerized by the music and lights, but some of the sounds were simply too loud for him (although we managed to stay for the whole show). We were able to enjoy the fireworks far more at our hotel room than we did in the park, although it was still too loud even at that distance.
Fifth, consider staying on site or very close to the park. This was a lifesaver for us on both of our trips. We could quickly get back to the park after a few hours napping or relaxing at the hotel or eating at a local restaurant at Downtown Disney. There is no way we could have spent more than four hours at the park at one time. Three hours was really more of our limit. Once we hit the limit, we headed “home,” where we could hang in the room or around the hotel, playing or watching movies.
Sixth, bring some of the comforts of home with you. We brought the mondo mega double stroller with the huge canopies. These were perfect for both kids when it came to shutting out the sensations. Oscar shuts his on his own now when things crowd in on him, and it was certainly helpful for Etta, too, when she needed her naps.
Perhaps most importantly, don’t treat this trip as though it’s the only time you’ll go to Disneyland. . . even if it is. This is a stressful trip, even if your child has typical toddler issues. With SPD, or other similar conditions, there is simply no way you’re going to be able to experience everything the park has to offer. At least not without losing your mind. You’re going to have to choose what you’re going to let you child experience and be comfortable that that is enough. Although we’ve only done this twice now, I’m fairly certain that the mere fact that my kids have been to Disneyland is enough for them. They’re not measuring the success of the trip by how many rides they went on or even what they missed. If that’s enough for them, it’s certainly enough for me.
Joy of Love – 3 – Then and Now
Yes, it’s the eighth of the month and I’m just getting to #3 in my photography lesson. I really am not a good “project” person, although there is a reason for this delay that goes beyond simple procrastination and life getting in the way.
Today’s, well, the third lesson in this project was “then and now”. Since today is exactly one year from the day when I first saw Etta’s face, obviously, she is the subject of today’s project.
A year ago I received Etta’s referral! Oscar and I were at the Anaheim airport waiting for our flight home from Disneyland and when I went to check to see that my phone was off I noticed that I had missed calls from my agency. Part of the reason for our quick trip away was that I was going stir crazy from waiting for a referral I had thought would come months ago, so it was a shock to see that I had missed the call not once, but twice. I hurriedly called my coordinator back and was just able to download this photo, which I stared at for the entire flight.
And here she is today (or yesterday, actually) . . . to say she’s changed a little is an understatement. Isn’t she the cutest little girl ever?*
*I’ll accept answers in the negative only to concede she may be tied for cutest girl ever with your little girl.
Our Multipurpose Celebration
So much for my posting while we were away. Turns out that Disneyland with two toddlers and two grandparents in tow was more eventful than anticipated. I barely even managed to snap a dozen pictures.
We ran off last week for a whirlwind tour of the happiest place on earth. Grandma and Grandpa came out from the frozen tundra of Oklahoma, somehow managing to quickly get rescheduled onto a flight when their first attempt to get here was derailed by the blizzard. Literally minutes after they arrived at the house, we jumped into a minivan and started our seven hour drive to Anaheim. The kids were amazing, especially Oscar. Etta had a tougher time, since she’s not a big fan of television, so we couldn’t entertain her with Olivia or other cartoons. When we got to the hotel, Etta was ready for bed, but Oscar kept screaming that he wanted to go to “house!” Took me forever to realize that he was demanding to go to Mickey Mouse’s house, which is how we had described going to Disneyland.
Both Oscar and Etta loved their weekend getaway. Etta is a bit young for many of the rides, of course, but did she ever love Small World. Actually, I think that was both of the kids’ favorite ride in the park. Oscar expanded his horizon this year and added Mark Twain’s big boat ride to his list of favorites, as well as Nemo’s submarine (shocking, since he seemed to hate it when we were on it, but raved about it to a little boy we met at dinner). His go to rides from last year, the rocket ship and Dumbo, are still up there with Small World. His Disney experience, though, was far, far different this year from last year.
I don’t think I’ll ever really understand how Oscar used to experience the world. He obviously can’t explain it, but now that he can actually see and has the words to express a bit of what he’s seeing, it’s becoming clear that his life is significantly different than it was a year ago. Even if I hadn’t been able to see how engaged he was, the sheer number of times he said “wow, look at THAT” would have tipped me off.
I’ll spare you the images of a terrified Etta looking in horror at what, to her, must have appeared to be two gigantic rats and massive squirrels attempting to grab her and show you Etta being silly.
We had a fabulous trip to Mickey Mouse’s house, where we were able to celebrate Papa and Grandma’s 45th wedding anniversary, almost three full years of my being a mom, Oscar surviving my parenting for that long and something so important it deserves its own post, so you’ll have to wait for it. I only wish we had been able to stay another day.
Finding the Joy – 2
Two days on this project and I’m so emotionally liberated that I didn’t even cringe when I typed the word joy. Impressive, no?
Today’s theme is “how they look,” capturing your loved one’s essence. I got a great pic of Etta, screaming her drama queen scream, but I’m not going to post it because it is not terribly flattering and, as we all know, the internet is forever. So, instead, you’re getting Oscar again, which might be more of the rule than the exception in this project. Frankly, he’s easier to photograph because he’s been around this block a few times and he is not going through his “no” phase like a certain someone around here.
This, is how Oscar looks when he flashes his fake smile. Not the fake smile he gives for the camera, but the fake smile he gives when he’s done something wrong. The sort of wrong he did when he caused his sister to emit that drama queen scream I mentioned before. Get the picture?
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Etta’s Hats
Where I’ve Been
