Tuesday, December 16, 2008
We've been talking about the plane all week, and about how just he and I will go first, and then Daddy will come in a few days. I think Connor is a little bit nervous about it. A couple of times this week he's woken up crying. He doesn't really cry unless something is wrong; I suspect he's having nightmares.
He's always had an incredible bond with Jeremy. When he has a painful procedure or is scared by something, Daddy is the one he asks for. I think part of it is that he sees me all day, whereas he only sees Jer in the evenings or on weekends. Jeremy always plays with him for a while when he gets home, whereas I take him to doctors' appointments where he gets shots and therapist appointments where he's forced to touch things he doesn't want to touch, have his arms and legs manipulated into weird positions, and do all manner of unpleasant things. I've noticed that if Jer's been working late all week, Connor tends to be more crabby and harder to put to bed. I think it's because Jer helps give him that hard roughhousing time so that he's calmer and more likely to go to sleep afterwards.
We talk about where Daddy is several times during the day. Connor's first sentence was "Daddy work." Whenever the front door opens, his whole face lights up and he signs "Daddy! Daddy!"
I don't begrudge Jeremy's superhero status in Connor's eyes. Part of it is that I know when I leave the room, Connor immediately signs "Mommy" and looks around for me. Of course he loves me just as much. I am the constant in his life, and he doesn't need to sign for me most of the time because I am always there. He spends almost every waking hour of his day with me, but only gets to see Jeremy those few precious hours before bed and on those two weekend days-- and sometimes, not even that. He doesn't understand why Jeremy leaves for weeks-- just that his Daddy is gone. No wonder he gets nervous when we talk about leaving Daddy for a few days and flying to a strange place. To a two year old, a few days could be an hour or forever.
The night before last when he woke up crying, Jer and I brought him into our bed. He calmed down immediately, and he and I had a little conversation.
"Did you get scared?" I asked him.
He nods his head yes.
"It's okay to be scared sometimes," I said. "We all get scared. It's okay to cry. We all cry. Even Mommy and Daddy cry sometimes."
Yes, he nods.
"Are you ready to go back to your room now?"
No, he signs, no, and then he puts his hand on my arm and stares at me, lower lip quivering.
"Okay. You can stay with us for a while."
He heaves a big sigh and snuggles into Jeremy's shoulder. "Daddy," he signs, and smiles.
Saturday, December 13, 2008
Connor and I have started talking about the airplane we're going to go on. The kid is a veteran flier-- he's had eleven plane trips, but this will be the first one as a toddler, so it should be interesting. Hopefully I will not be forced to drive the other passengers slowly insane by repeating the ABC song under my breath 18,000 times in a row in order to keep him from screaming. This kid is obsessed with the ABCs. He especially likes the W. He is perfectly happy to listen and watch me sing and sign them until my hands cramp up. Somehow I'm thinking the poor person sitting next to us will not be so amused.
He's looking forward to seeing his relatives, I think. He's especially looking forward to seeing my father, his Papa, because the sign we use for "Papa" is very similar to the sign for "pony"-- his other current obsession. This could possibly cause problems. I'm wondering what exactly he thinks his grandpa looks like.
Connor's been a little harder to take out in public recently. There are a couple reasons for that. The first is the holiday season. Connor has some pretty severe issues with Sensory Processing Disorder-- he can't take in and make sense of a lot of sensory information coming at him all at once. The holidays are a nightmare for this sort of thing. People ringing bells in front of the grocery store. Holiday crowds. Loud piped in music. Holiday candles. Christmas lights and dangling ornaments. Dayglo toys and displays.
Connor copes with this sort of thing in one of three ways. The first is that he'll close his eyes. He does this in especially loud environments. He squeezes them shut, wrinkles his nose up, and buries his face in my shoulder. The touch and scent of my clothing is a familiar thing, so he's used to that, and if he closes his eyes too he only has to deal with processing the noise.
The second way he copes is that he'll stare his hands or at lights on the ceiling. He does this if there are too many visually stimulating things and strange smells in the room, but it's fairly quiet. By staring at the ceiling or focusing on a familiar thing (his hands) he's able to block out all of the other stuff going on and just focus on smell. This is a fun thing when I'm carrying him on my hip and he's leaning way back to see the lights.
The third technique that Connor uses is the one that makes me have to do my Christmas shopping in very small doses. If there are too many things to see, too many noises, and too many strange smells, Connor will squeeze his eyes shut and start screaming at the top of his lungs. If he makes a really loud noise that drowns out the other noises, and he blocks off the visual stimulation, than he'll be okay since he only has to focus on smells. This is about the time I start heading for the door. This kid has a set of lungs.
Guess which coping mechanism I'm seeing the most this time of year?
I'm doing my shopping in fifteen minute intervals.
Wednesday, December 10, 2008
Connor was much better this time about her being there and me holding her. He was very concerned about her crying, though I suspect that initially he just didn't like how loud she was being. He kept wincing and shaking his head no, and finally he pulled his hearing aids out.
Connor is generally very empathetic-- he used to cry when other little kids cried. When he first got his hearing aids, though, the noise sounded so different from what he was used to hearing that when a little one cried around him, he started laughing. Whoops. He eventually re-identified the sound, though. I think that his empathy in this case was tempered by the fact that this was the Stranger Baby and HIS Mother was the one doing the holding and comforting.
Our cat Cricket was absolutely frantic, however. This is the cat that becomes Very Concerned whenever I sing in the house. I think she's convinced I've been mortally wounded and am howling in pain. She always runs up and desperately throws herself at me to try and comfort me-- not a very flattering reaction, I'm afraid. She has a healthy respect for babies (after Connor kicked her in the nose on their first meeting) and normally stays far, far away from them, but she broke her own rule and followed me around the house, head butting my ankles and wailing sympathetically. It was a noisy household.
Baby E is still adorable, though.
It's incredibly difficult to find a babysitter for a child with as many medical needs as Connor has. Our respite care worker, Katy, is fantastic. She only works weekends for us, however, as she has a full time job as well, so that means I need to ask around and see what I can find.
If we can't figure out someone to watch him, I'll go back to what I did last year, and have Connor's Family Conversations therapist bring the lessons out. It's not ideal, but it's certainly better than no lessons at all.
We've been learning SEE for about ten months now, and I have to say I'm really enjoying the classes. I've gotten to the point where I can hold a conversation without any real difficulty. Jer is a bit behind me, but this is because I have many, many more opportunities to practice SEE during the week than he does. We're going to have to figure out some way to let him keep studying while he's deployed. Maybe I can videotape lessons and send them to him or something. He's very, very quick at picking up sign when he does have a chance to practice, and I'm sure he'll continue to learn.
I've picked up some tricks to help me learn more vocabulary and become more fluid. I listen to country western songs in the car (though I don't particularly care for country western music) and Christmas carols this time of year so that I can sign along to the music at stop lights. It gets you some interesting looks from the cars next to you--especially if you are in the car by yourself-- but is pretty helpful. Country western music has the advantage of having a lot of very slow songs with very simple words, so that makes it easier for me to sign to them. I also have learned the signs to almost all the picture books in Connor's rather large collection. That helps me pick up words that don't come up in everyday conversation.
I try and set myself vocabulary goals based on what we're doing that day. If I'm making beef stew one night for example, in the morning I'll learn the signs of all the vegetables and kitchen utensils I'll be using, and that way I can talk to Connor about the stew in the evening as I'm cooking.
Once I become fluent in SEE, I plan to start taking classes in ASL. Despite that, we'll probably always use SEE for Connor.
Let me explain the difference between the two and our reasons behind that decision.
American Sign Language (ASL) is a completely different language from English, with it's own set of grammatical rules, slang, and proverbs. Structurally it's set up more like French, and it's impossible to speak and sign ASL at the same time. It's the predominant language of those who sign in the Deaf community.
Signed Exact English (SEE) is not a separate language from English. It's simply a different medium to portray English in, like writing. You speak and sign at the same time with SEE, and unlike ASL, all of the slang, saying, etc are exactly the same as English.
We use SEE with Connor instead of ASL for a number of reasons. Connor is HoH, and when he was first diagnosed his hearing loss was fairly mild, so he was already understanding some English. He deals with cognitive delays due to his wide variety of neurological issues, so we didn't want him to have to start over on learning language since it took him so long to pick it up in the first place. It would be very confusing and difficult for him to learn two languages when he struggles with just one.
Due to his poor motor skills, Connor will probably never be able to respond in correct ASL or SEE. He currently has about 40 home signs (signs that he has made up) that he uses with motions that his arms and hands can do, but he's not able to do the complex moves with his fingers needed to sign accurately. I would expect we will eventually transfer him over to using a computer and picture communication to give him a way to speak with a wider vocabulary than he has the motor skills to sign. We will use any method possible to let him get across what he wants to say. However, we will still need to talk with him by sign. SEE gives him three different ways to understand what we're saying-- hearing, lip reading, and sign. Even without his hearing loss, Connor would probably have been ataxic (non-speaking) and we began looking into teaching him a sign system long before we knew he was HoH. I think it should be considered as an important tool for not just Deaf and HoH children, but those hearing children with cognitive and motor skill delays-- especially those who are completely non-verbal or severely language delayed.
If we adopt another child who is Deaf or HoH and who doesn't have any cognitive delays, we'd probably talk with them by SEE until they reach school age to give them a good base in structural English, and then switch to ASL unless we're talking with Connor at the same time. From the Deaf friends we've talked to, it's pretty easy to learn ASL after you know SEE as it's much more conceptual and many of the signs are the same. I think that each system of language has it's own benefits. It will depend entirely on the child and their individual needs.
Tuesday, December 9, 2008
Monday, December 8, 2008
Sunday, December 7, 2008
That Elmo doll is sort of creeping me out, though. Every time I go in Connor's room at night, I can see these huge white eyeballs staring at me...
Loki spent a good ten minutes this morning bathing my nativity set.
We have this ceramic nativity set, and he apparently thinks they taste good, because he has started licking them. I checked the package and there's no lead in them, so that's okay. He's on a good diet with adequate calcium, so it's not a diet deficiency. I'm not sure what he thinks he's doing.
In some sort of crazy biblically related coincidence, he especially likes the lamb. He traps it in between his paws and washes the whole thing. I'm debating on whether or not I'll put them up before we leave for Texas, because otherwise I'll probably come back to discover he's eaten baby Jesus.
Saturday, December 6, 2008
Connor had his gastric emptying study set for 11:00 in the morning. He's not allowed to eat for four hours before hand, so I needed to get him up bright and early to eat something before we left.
Now, I am a morning person. Connor evidently did not inherit that particular characteristic from me, because he it usually takes him a good half an hour to 45 minutes to warm up. First he lays in bed for a little while with his eyes closed and makes little noises, then he opens his eyes up, rolls onto his back, turns his lights on and keeps making little happy noises, and finally he decides it's really time to wake up and ups the volume, which is when I come and get him. Any interruption in this routine is a recipe for a good two or three hours of crabby, sleepy Connor.
I thought that maybe if I woke him up at 6:00, he'd be ready to eat by 6:20 or so, so I gently woke him up and stepped out of the room to let him start his wake up process. Silence. He immediately fell back asleep. I went back in, turned his lights on, turned his music on, gently woke him again, and waited. He rolled back over on his side immediately and fell back asleep. I picked him up out of bed, changed his diaper, got him dressed, gave him his medicine, and carried him into the living room. During the whole process, Connor had the huge pouty lip, was signing "no no no no no no!" and still had his eyes closed.
Lord knows what it's going to be like trying to wake this kid up when he's a teenager.
Connor decided that since I was rude enough to wake him up, he would refuse to eat any breakfast in retaliation. He clamped his lips together when I offered him his oatmeal and drank about three ounces out of his bottle before 7:00 rolled around and it was time to quit eating.
We left the house at 8:00 because I wanted to hit Pike Place Market before we needed to be at the hospital. It's a good thing I left early, because evidently all of the bad drivers decided it was grocery shopping day or something. After gassing up the car, it took us about an hour and 45 minutes to get to Seattle. Since we had to be at the hospital at 10:30 anyway, I decided to go to the market after Connor's appointment and drove through the city to Children's.
They were running late at the hospital, so I spent two hours in the waiting room with an increasingly hungry and crabby Connor. We finally got back into the room around 12:30, and our very nice nurse set everything up. First we gave Connor a bit of radioactive tracer in an oral syringe, and then he had some milk. He lunged for the bottle-- it was kind of funny. He was allowed to drink for about five minutes-- enough time for him to drink about three ounces. Then the little guy was strapped to a table and a camera the size of his entire body was positioned about three inches above him. It looked a little bit like he was in a Frankenstein movie. We had a television and some light toys, but the poor little guy was too small to see out from around the camera, so he had to stare at the gray plastic surface for an hour knowing his bottle was in the same room and totally inaccessible.
You can imagine how much fun this was for all parties involved.
After an hour we unstrapped him and the mysterious doctor (who we never saw) took a quick look at the pictures. Apparently there was still a bit of tracer in Connor's stomach, so we were told to come back in an hour and we would take some more pictures. Luckily Connor was allowed to eat.
Connor and I headed over to the crazy Barnes and Noble across the street and he scarfed down his bottle in the coffee shop. Afterwards we spent 15 minutes shopping, and I grabbed this version of The Night Before Christmas, which I like because the pictures are so high contrast-- good for Connor. It also has a really, really cool popup ending, which is probably not appropriate for kiddos who like to touch things as it's super fragile, but in Connor's case is fine. I also grabbed another book for myself-- The Good Husband of Zebra Drive by Alexander McCall Smith. If you are fond of in-depth characters, uplifting stories, and mysteries (an interesting combination) you will probably love The No. 1 Ladies' Detective Agency series, of which this book is the eighth. I highly recommend them.
We drove back across the street and were taken back into the Frankenstein room again around 3:00. Our nurse strapped Connor to the table again for more pictures-- thankfully for just a few minutes this time. Connor and I headed out the door at 3:30.
I wanted to go on a Christmas house tour with some of the girls that evening, so I skipped Pike Place and we headed for home. Alas, the house tour was not to be. It's normally about a 45 minute drive from Seattle to our house, but that night it took almost 2 and a half hours. It was stop-and-go traffic literally the entire way. About an hour into the drive, Connor decided he'd had enough and pitched a huge screaming fit. I pulled into the drive way already ten minutes late for the house tour, handed Connor off to Jer, threw the car in gear and drove to where I thought the reception was meeting, neglecting to check the directions. I went to the totally wrong place and missed the tour.
Jer was really sweet and got me some ice cream when I returned, totally defeated, twenty minutes after I'd left the house. He gave me a back massage, took care of the little guy, and made me some tea while I read my new book, so even though it was a lousy day, it ended on a pretty good note.
Jer's pretty good at turning days around like that.
Wednesday, December 3, 2008
We took a quick trip to the grocery store, but otherwise it was an at-home day until the evening. The cashier at the grocery store made a comment about how it was great that I was signing, but that I didn't need to "do it with her" because I could understand what she was saying. I didn't want to get into a big explanation in the grocery store line, but this has come up before, so I'll post my reasons here.
I know it looks kind of strange that I sign to hearing people. I know they can understand what I'm saying. I'm not signing for them. I'm signing so that Connor can understand at least half the conversation. If you think about it for a minute, it makes perfect sense. Those of you with kids probably have noticed that you have to watch what you are saying around them because even if it doesn't look like it, they are listening to your conversations with others. They learn all sorts of interesting words in these conversations-- oftentimes words you probably wish they hadn't. Nevertheless, every time you speak, they are subconciously learning rules about the English language.
Now, imagine that your child is Hard of Hearing or Deaf. If you are speaking to someone in the noisy grocery store and your faces are turned away from that child, they get nothing. Either they can't understand what you are saying at all, or what they are getting is full of holes and misheard words. If your child's only way to acquire language is when someone is speaking directly to them, they are going to miss out on a lot of learning opportunities.
That's why I try and use Signed Exact English whenever I'm speaking to anyone and I'm with Connor. It may be a little bit slower sometimes, and I'm not fast enough to interpret what the other person is saying for Connor yet, but he is getting at least half of the conversation, which is better than nothing. Connor has enough trouble as it is acquiring new language without adding in the HoH issue.
I'll get off my soap box now.
Tuesday, December 2, 2008
And here's a blood glucose monitor:
So now apparently I look like I do undercover work for the ADA. I just need a trench coat and a fedora.
At any rate, Connor had a great PT and ST session. He is starting to recognize pictures as representations of objects, which is a huge step for him. Once he understands that pictures on cards can be symbols for things he wants, we can begin using a picture communication system for him-- possibly a modified version of PECS. He's already making choices between two pictures. He also did a great job standing up to play. We won't see Julie and Laura again until after Christmas as we'll be leaving for Texas soon-- it's crazy to think that our trip is that close!
When we come back from our vacation, Julie and Laura will begin administering the Bayley Scale of Infant Development to Connor so that we'll have that data for when he starts school in April. I'm glad that they will be giving the test to Connor so we'll have an additional set of data other than what the school's assessment will show. This is because Connor refuses to cooperate with developmental exams given by people he doesn't know. Connor reacts to strangers giving him developmental assessments like they are terrorists trying to get him to give up government secrets. In his case, name, rank and serial number are all represented by the sign "no," and that is the only thing the therapist will see him do during our two hour time together.
Therapist: Connor, can you see this ring?
Therapist: Let's touch the ring. Can you touch this ring?
What color is this ring?
And that's if Connor's in a good mood. If he's in a bad mood, he'll stare at a fixed point about three feet to the left of the therapist and pretend she doesn't exist. If she tries to move into his line of sight, he'll look in the other direction. He was in a bad mood at his last assessment, and they placed his cognitive level at three months.
For the most part, I could care less about what the developmental tests say. Anybody who spends ten minutes with Connor in a setting he's comfortable with knows that he's got a cognitive level way above three months. If anything, it's nice that they assess him that way because then we are certain we can get all the services he needs without a fuss. The problem with this being the only assessment the school sees, however, is that we want Connor to split his time between the developmental preschool and the Deaf/HoH preschool, and if he's assessed too low, than there's a chance they won't let him attend the Deaf preschool. So we'd really like to have some data that shows he will benefit from being in a school with Deaf peers who are not developmentally delayed.