Our big fancy dinner
Attempting to expand our culinary horizons past establishments that include a drive-through, the kids and I went out for barbeque. C’mon, what did you expect?
They did pretty well, although Etta did attempt to break out of her highchair at least a dozen times. We had to make a hasty departure, though, when Oscar decided we were finished and attempted (twice) to make an escape with other customers. We’ll try again next week to see if we can manage to complete a meal in one sitting.
Eyelashes
Now that Oscar can see, he’s become much more focused on the details of the world. The other day he saw an eyelash on his hand after looking at me blankly when I told him to blow on it and make a wish, he reached down and did it. Doesn’t look like a typical blowing motion, I know, but that’s one of those signs of apraxia the therapists keep seeing. Still wondering what he wished for.
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 . . .
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.
Finding the Joy – 1
I literally cringed when I just typed those words.
I am Scandinavian-American. Scandinavians are known for being reserved and generally not showing their emotions in public. In that respect, no matter how much I dislike cultural generalizations, I am stereotypically Scandinavian. I mean, it’s not that I don’t feel emotions, it’s just that I don’t share them widely very often. And, if I do express emotion publicly, it’s more likely to be a negative one, like frustration, than a happy one, like (dare I say) joy.
So, why did I type that somewhat uncomfortable word? Remember how I said I was going to work on being a better photographer? Well, step one on that quest was signing up for an online mini-class called The Joy of Love (cringing again) given by this awesome photographer named Kelly Willette. Actually, step one was finding my camera manual and figuring out what those letters and pictures on that dial on my camera meant. Step two was signing up for this class. It’s running throughout the month of February; there’s still plenty of time for those of you who aren’t emotionally stunted to get in. Just click here. Don’t worry, it’s free.
Our first project was to document one our loved ones in “what they do”. So, I give you Oscar doing what he loves . . . watching a cartoon on my phone’s Netflix app, just as he does every night, with one of his prized possessions within reach. No pressure to make words come out of his mouth, no pesky sister running around him, no dog trying to steal his food and Wallace & Gromit before him to entertain. His version of heaven.
I’m not sure that I’ll be posting photos here every single day (it’s best that I don’t make promises I likely would not keep), but I will be participating in the program each day throughout the month. Who knows, maybe my hope to be a better photographer will help me break through my frozen Nordic shell.
Our practically perfect day
I had planned on taking the kids to the aquarium over the long holiday weekend last week. Since I had to work instead, we headed there this morning. It was a ridiculously beautiful day at the coast today. We arrived and there were hundreds of harbor seals out, although the kids didn’t seem to notice. They looked a lot like rocks and weren’t making any noise, so I could see why they weren’t terribly impressed.
They thought the aquarium itself was far more fun. We saw nemo, sharks and an octopus and star fish. We went to see the jellyfish presentation, during which my children decided the presentation was supposed to be interactive. Oscar kept yelling “JELLYFISH . . . JELLIES . . . JELLLL LYYY FISH!!!” each time a new variety of jellyfish was shown and Etta would run from our seats to in front of the screen (below it, of course) to dance for the audience. The actual jellyfish exhibit afterward was a bit of a letdown, I imagine (for everyone, not just my kids).
After we’d been there a while, Etta said she wanted milk. Oscar reached down to her and patted her shoulder and said, “‘s okay . . . Donalds,” which means “it’s okay, we’ll go get your milk at McDonalds.” Nice.
Oscar even did me a favor and pushed Etta back to the car – the entire way back to the car. I hate paying for parking in suburban areas (I’m cheap), so we always find the free parking up the bike trail, and may I say, my son must be in great shape. He must have pushed that stroller close to a mile. Every time I would try to take over, he’d just push harder. His occupational therapist is going to be very excited about his “heavy work” today.
Our day would have been perfect, but our nemesis, Sensory Processing Disorder, made a somewhat dramatic appearance. Oscar used to hate sand. When we went to Playa del Carmen a year ago he would scream even if I would carry him across the beach. He can stand it a bit more now, but there was a lot of sand and tiny rocks on the bike path back to our car. Oscar would convince himself that he had rocks in his shoes and sit down and yell for me to help him. I’d clean out his shoe and wipe down his feet, showing him there was nothing in his shoes, but he could not register it. It made for a long walk to the car, but he made it on his own without a meltdown, so that’s definite progress.
And, after all that, we managed it home (our second almost two hour car ride today) without anyone crying, including me.
Fun with SPD!
Good clean fun
I think they’re starting to genuinely like each other.
When they’re not trying to kill one another, that is.
War
Oscar has declared war against me. Just me, apparently, everyone else is safe. Why would he do this, you ask? It looks like it’s all because I make him talk.
Remember how I was bragging last week about how Oscar finally “got it” and could say “I want” X? Well, Oscar’s made it pretty clear since that day that he does not want to say “I want” X. He wants to say X and only X and I’d better give him X when he says it or all hell will break loose. I’ve been all Super Nanny consistency on him from day one and I have not given in, but as you know, I’m not the only authority figure in the house. Nanny Norma will give in to him when it comes to food.
The rule is that if Oscar wants a certain food he has to say “I want” [that food]. No big deal, right? It is a big deal, of course. I know it is very difficult for him to actually say those words and he not only has to enunciate them, which is tough, but he also seems to have a memory retrieval issue so that just makes things more difficult for him. But, this is not going to resolve itself without constant practice, so I prompt him to practice. Norma prompts it, too. I’ve seen it. It’s just that she’ll give in after a few attempts and give him food. She remembers Super Skinny Oscar, and she does not want to go back there.
This has led to a fairly big issue in our house these days. When we go down for breakfast, Oscar now looks at me and points to the door, basically telling me to get out. Obviously, this is not going to fly, so I give him his cereal [the aim here is to get him to talk, not to starve him into submission] and stand my ground and start with the questions. Do you want yogurt, do you want toast, etc. All he will say to me at meal time now is NO. Well, NO, and then he’ll turn to Norma and say whatever food he wants that I haven’t listed (eg., “No, soup”). She’ll say “Oscar do you want soup?” and he’ll say “NO”, not because he doesn’t want soup, but because he knows that he’s supposed to say “I want soup” now.
To get away from this hangup, I let him say “soup, please” instead of the entire sentence, but that just creates the same control issue for him, it seems. He’s refusing to say that, too.
I had started to think that he was doing this because he really couldn’t remember the words I and want, but that possibility was eliminated today at speech when Oscar said to his speech therapist “I want” X exactly when he was supposed to even before she visually prompted him. Honestly, it was sort of annoying. I explained what was happening and she said it was pretty common, especially with kids with oppositional issues (and boy are those showing themselves these days 
).
I suspect that this is a combination of him telling me that at home he shouldn’t have to work as hard as he does at therapy, a bit of Norma undermining the message of consistency, Oscar mimicking his sister (who is the Empress of No-land these days) and possibly my pushing him to work too hard at all of this. I’m not sure what the answer is, but for the time being, we’re going to stick with the consistency approach (and I’m going to push Norma more on that so we’re consistent all day long). Why? Because “I want” Oscar to start talking.
Pics to prove I’m not actually torturing the kids . . .
Oscar trying to pull Etta around. It was a little tougher for him than it was when Hailey was doing it.
Oscar also built a train track and found a big train at kids’ club the other day. The boy’s an engineering genius.
Oscar Goes to Therapy
Oscar has been going to his new therapists for about three months now, and it’s been fabulous. His therapists are amazing women who are very tuned into his needs. They’re flexible and very creative about finding the best ways to draw him out and get the most out of our sessions. More importantly, they’re very optimistic about his future and see how bright he is.
The first twelve sessions or so that we had with our speech therapist, and maybe the first four with the occupational therapist, were really focused on assessing Oscar’s skills. Since establishing a baseline, we’ve moved to treatment, where we have a list of goals to work towards.
Right now, in speech, one thing we’re working on is building up a set of stock phrases for Oscar that will enable him to communicate with the outside world. In the past two and a half years, we’ve developed a special language at home that has allowed Oscar to get his point across fairly effectively. Sadly, that language, which is composed of a mixture of American sign language, gestures and single nouns that Oscar speaks, is not spoken by anyone other than Nanny Norma and myself.
Our first phrase is “I want _____”. We’ve been working on this phrase for weeks. Weeks. It’s been agony for everyone involved. Why this is so difficult is still a mystery. Oscar appears to have a processing disorder that makes it difficult for him to comprehend what people are actually saying. When asked to repeat the words “I want the car,” Oscar initially would say something to the effect of “pinkabunkacar”. When we’d break it into distinct words, with visual cues for each word, he’d be able to repeat it one word at a time, but could not put it into a sentence.
- ST – I
- O – I
- ST – want
- O – want
- ST – the
- O – the
- ST – car
- O – car
- ST – I. want. the. car.
- O – Pinkabunka car.
Today, though, we had our first co-treat session (with speech and OT combined) and he got it. He wanted to spin on the trapeze and said “psin.” This, by the way, is a huge accomplishment. Three months ago Oscar would have grunted and leaned towards the trapeze and become frustrated when we didn’t know what he wanted. He understands now that words are more effective, so when Miss M opened her mouth to say “I want to spin”, Oscar beat her to it and said “I want pins”. Not the greatest grammar or articulation, but we can work on that next. Even better was that the next time he wanted something, he went to her and said – “I want climb, I want climb, I want climb,” which is kind of funny because Miss M usually makes him repeat things three times, so he’s clearly getting this stuff.
One phrase down, what, a bizillion more to go? Baby steps.
This was the other major breakthrough of the session. Oscar got messy. Really messy.
Oscar hates to be messy. Loves to make a mess, but the world comes to an end if he gets something on him. As you can see from the pictures above, he isn’t really sure that he likes to have a mixture of shaving cream and paint on his hands, but he loved smearing it around on the table. When we got into the car, after he’d been cleaned up, I asked him if he wanted to do that at home and he yelled “paint fun!” Take that Sensory Processing Disorder.
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Etta’s Hats
Where I’ve Been
