In Which Connor Is Not Special And I'm Fine With It

I was filling out a questionnaire today; Connor has been selected for an award given out by the military hospital every year, and so we were to write a bit about him and send in some pictures to be used in the ceremony. Everything was going along swimmingly until I got to this question:

"Knowing that you are Mom and Dad, we would like to know from your perspective what makes your child special to you and your family."

And it was there that things screeched to a halt. I couldn't figure out how to answer this question, and I was surprised by my strong negative reaction to it. It's certainly a totally innocent query-- we were probably just supposed to list some of Connor's positive traits and move on. But it was that word "special" that was sticking in my craw.

While I say that Connor has special needs, as that seems to be the most PC term, and I love him deeply and fiercely, do I think of him as special? I might get a little flack for this one, but oh well.

No. No I don't.

He's not a saint or an angel or some sort of pillar of society. He's an ordinary little boy who happens to have a lot of challenges to deal with on a daily basis. While I know he's not ever going to be "ordinary" in the conventional sense-- he'll always be set apart by his physical and cognitive disabilities-- I really, really wish that wasn't the case. I wish that he could be viewed by the world outside our little family as simply a person, no better or worse than any other, and not as a case study or someone to be pitied or babied or scorned or idolized, depending on who's looking at him.

This is probably such a sticking point for me because we run into a whole lot of folks who tell Jeremy and me that we are special people for having Connor. And we're not. We're totally ordinary, normal parents who are muddling through raising a child and figuring it out as we go along, just like everyone else. I don't like being thought of as some sort of extraordinary person because it implies that only extraordinary people can raise children with disabilities. And that's not true; I firmly believe that anyone who would be a good parent to any child can be a good parent to a child with disabilities. To my mind, being special means being set apart. It implies an us and a them. And we don't want that, not for ourselves or for Connor.

It took me a long time to compose an answer-- I didn't want to turn Connor's award into my own oversensitive personal rant, and so it took me a while to figure out what I wanted to say. Tell me what you think about it. Here's what I ended up with:

"What a difficult question to answer! Certainly Connor is special from a medical perspective; he’s the only known case in the world with his specific genetic condition. But here’s the deal—despite the fact that his medical conditions permeate almost every aspect of our lives, we think of them as relatively unimportant. Connor has a variety of conditions that are part of him, just as he has blond hair and green eyes. They don’t define who he is.

"We could tell you about his bubbly, sweet personality, his great passion for music, and his easy acceptance of the hand that life has dealt him. We could mention his unmitigated joy in making new discoveries, his silly sense of humor, and the stubborn streak a mile wide he inherited from both sides of the family. We could talk to you about his bravery in the face of numerous emergency room visits, hospital stays, and painful medical procedures, his gentle touch with animals, and the astonishing beauty of his smile.

"But ultimately I think what makes him special to us is what makes any child special to a parent. He is our son, an ordinary person placed in extraordinary circumstances, who, like all of us, is doing his best to make the most out of what he’s been blessed with. He is made special by how very ordinary he is despite all of the challenges he is facing. We couldn’t possibly ask for more."



~Jess

Lazy Saturday

Today was a nice, relaxing day. We drove to our local Panera for breakfast and then headed down to the flea market taking place on post. We didn't find anything, and it was really crowded, so we gave up and headed back home. Connor ate Second Breakfast (he eats in the hobbit fashion around here) and then we all took a nap. Or rather, I took a nap and Jer watched Connor. I woke up a little after one.

"I'm just going to pop over to the grocery store," I told Jer, heading out the door. "I'll be right back." Jer would have been completely justified in rolling his eyes at this point.

Three hours later I returned with several new books for Connor, a couple new books for myself, a bottle of honey mead, some apple-almond stuffed pork tenderloin, a high pressure shower head, and a couple of crazy beeswax candles. Apparently, despite the fact that they look identical, were in the same bin, and have the same label, one candle is slow burning wax and the other is of the crazy-messy-throw-hot-wax-all-over-my-table variety. Jer and I ate pork tenderloin and spinach salad; Connor ate garlic-herb flavored chevre and apple-almond stuffing. Then Jer and I drank mead, which turns out to be pretty good stuff. Connor asked for mead but was denied. Sadness. We all watched in fascination as the candles burnt down at completely different rates while debating on what things in our house we should drip hot wax all over. No pyromaniacs live here, I swear.

Tomorrow I'm hoping to drag Jeremy to World Market to look at a couple of couches. Our sad futon, left over from our college days, didn't have much padding to begin with and is now beginning to degrade in interesting lumpy ways, as the cats both have their favorite spots on it and have worn down the padding in those places. As we're going to have a huge number of visitors over the next few months who will be relegated to sleeping on this sad, decrepit piece of furniture, I think they'd appreciate us buying something a little more comfortable. I'd debated buying a couch while Jer was gone, but ended up chickening out, as something that costs that much money is not something that I want to buy on my own. What if he came home and hated it? Not that Jer gets very fired up about interior decorating, but oh well. I worry about these sorts of things. So a-couching we will go!

~Jess

Frustrating Day

So I made the mistake of bragging to Ellen over at To The Max about how I'd actually had a pretty good week. Sometimes I think God uses my life for entertainment value. "Did you hear that?" he says, elbowing Gabriel in the ribs. "She's bragging about having a good week again. Give her the chair!" Then Gabriel comes down and executes a pile driver on my day while all the other angels look on and cheer.

Anyway, yesterday afternoon after his evaluation Connor kind of got all quiet and started acting like he was tired. I figured he'd just had a hard day and didn't think much of it. This morning when he woke up, however, he was kind of blue around the mouth and at the fingers and toes. Any mom who has a kid with heart issues knows that this is not a good thing.

Connor usually doesn't have any cyanosis-- that's the blueness-- so I was a little bit worried. He didn't seem out of sorts at all, though, it obviously wasn't a seizure since he was still conscious and breathing, and he pinked up pretty quickly when I got him dressed. I figured maybe he'd just been a little cold. I debated with myself about whether or not I should take him to Family Conversations play group, but I ended up deciding to go ahead since he was pink and happy, and just to call and make an appointment with his cardiologist for the next week.

I told them at play group that he was looking a little blue around the edges and so to watch him carefully (we go off and leave the kids with the therapists for about an hour while we listen to presentations or get sign lessons) and when we came back, they said he'd had a couple of episodes and seemed to pink back up when they lay him down on the ground. He started going cyanotic again during the last song of the day, so we took him into the other room. By this point I'm thinking-- okay-- I really don't want to wait until next week to see someone. He probably needs his medication adjusted and that's all it is-- he's gained quite a bit of weight and he's more active now-- but just in case I'd better take him in. We debated on whether or not I should just call an ambulance, but by this point he was once again pink and happy, so I just put him in the car and drove down to the military hospital where our cardiologist works.

I called the appointment line on the way there and was informed that they could squeeze me in in early March. Riiiiiiiiight. I explained the situation and they said that I could either call the pediatric specialty desk directly and see if they could page the doctor or I could go to the ER. So I called the ped's specialty desk. The phone rang twenty times. No one picked up. I gritted my teeth and drive to the emergency room.

When I got to the ER, I explained the situation to the guy at the front desk. He looked at my currently pink, happy child and said, "Well, here's the deal. He's not blue right now, and we're pretty busy today, so it will probably be an eight to ten hour wait, and the Echo team will probably already be gone for the weekend. If I were you, I'd just walk in to the clinic. They should see you a lot faster." So we got back in the car and drove back around to the clinic.

When we got to the clinic, the person in charge of reception at the pediatric specialty clinic was still MIA, so we walked down to the general ped's clinic. They told me that they weren't able to make any appointments for cardiology, and not only that, but Connor's doctor was out of the hospital for the day. I explained the situation for the third time and they decide to find another cardiologist to take a look at him.

This is when things get really ludicrous. The other cardiologist comes out, and with him standing over me in the middle of the waiting room we have the following conversation:

Me: Hi! I'm Jessie, and this is Connor-

Man: He probably has arrhythmia.

Me: Um...well he's got left ventricul-

Man: I know. I read the nurse's note.

Me: (Refusing to be interrupted.) He's had some intermittent cyanosis, which is not a typical symptom for him, and it seems to cluster around periods of activity. He's also been acting unusually tired. His medication hasn't been adjusted for a while, and I'm wondering if we couldn't have you take a quick look.

Man: Probably arrhythmia. If it happens again take his pulse and see what it's doing. Then you can have me paged.

Me: Well, he hasn't had any arrhythmia before, so I was just thinking maybe we need to check his lisinopril dose-

Man: Well if he's going into heart failure there's nothing we can do anyway. Just take his pulse if it happens again. We'll have Dr. P (Connor's cardiologist) call you tonight.

And then he walked off, leaving me sitting in the waiting room in sputtering, incoherent rage.

It's not almost nine in the evening and Dr. P hasn't called-- leaving me to speculate that they probably put the page in through the computer system and not the pager system, so he'll get the message on Tuesday (it's a four day weekend because of President's Day). He's usually pretty good about calling me back, so I'll give him the benefit of the doubt. I didn't stay and insist on Connor having an Echo done for two reasons--

1) He is still being a pink, happy baby and he hasn't had any more blue episodes. We'll just take it really, really easy the next few days until we get in to see our cardiologist, and if things look any worse I'll immediately take him to the ER, which is literally a two minute drive from my house.

2) I never ever want to see that doctor ever, ever again.

Seriously. I could maybe, maybe almost sort of understand him being a little rude if I was in there, say, five or six times a day with imaginary ailments, but this is the first time I've ever done this sort of thing. Maybe things were really, really busy and he didn't have a lot of time-- then I could understand him being a little bit short with me. Fine.

But what kind of a jerk on being told that a kid with heart issues is potentially having trouble walks into a crowded waiting room, doesn't even bother to take the kid's pulse, announces "well if he's going into heart failure there's nothing we can do anyway?" and then walks off?

Bleagh.

~Jess

Medical Monday: Duane Syndrome

It's that time again: Medical Monday! I blog each Monday about a different condition Connor has and then post a link to it on the side bar as I go. This way people can get a better idea of what Connor deals with on a daily basis and his family and friends can understand what I'm saying when I call and spout ridiculously long medical terms.

DISCLAIMER: I would like to emphasize for those people who stumble upon this blog that I'm not a doctor, and I have no medical experience other than the approximately 900 doctor's appointments I've been to in the past two years. I just know about these things in relation to how they apply to Connor and not anyone else's child, so if you want accurate info on this sort of thing, please please please ask your doctor or go to the medical library instead of looking it up on the Internet. The library is your friend.

So today's topic is Duane Syndrome. What is going on in this picture? Other than total frosting decimation, I mean. You may notice that what we call Connor's "wonky eye" (very technical term there) or "wonkavision" (because we aren't Roald Dahl fans in this house at all) is clearly visible. What most people think when seeing this picture is that Connor is looking straight at the camera and one of his eyes is turning in. Actually what's happening is the opposite-- he's looking up and away from the camera, and it's the eye that's looking straight ahead that's the problem. Connor has Duane Syndrome.

There are six muscles responsible for the movement of the eyes. Two of them control the horizontal movement-- one for inward movement, and one for outward. Each eye muscle receives its instructions from one of three cranial nerves. In Duane Syndrome (DS), cranial nerve VI, also known as the abducens nerve, is either missing or malfunctioning. This nerve sends the instructions for the outer movement of the eye.

There are three main types of Duane Syndrome. Connor has Type I DS, which means that he can move his eyes inward, but not outward. When Connor wants to look at something to his right, for example, his left eye will turn inward as it should. His right eye will get to about mid-line and then won't go any farther. In order to keep his depth perception and look at something with both eyes, he has to turn his head. This means that he's unable to track something unless it is fairly slow, because he has to turn his head to keep it in both eyes in line. (Try doing this sometime-- look straight in front of you and turn your head to watch something instead of your eyes. It's exhausting.) It also causes problems because people automatically align themselves with the eye that's straight ahead and think he's paying attention, when in fact the dog or mime in a box or whatever it is he's actually trying to look at is off to one side. About 80% of people with DS have it in only one eye. Connor is one of the "lucky" 20% that has it in both. In his case, his left eye has a little more movement than his right.

There's not much they can do for DS. Surgery isn't going to help when it's a problem with the nerve and not with the muscle-- usually the only reason surgery would be involved with DS is to correct a head tilt caused by someone trying to keep their eyes aligned. You can't really "retrain" the problem either by using a patch, for the same reason. Connor actually compensates pretty well.

Here's some good links involving Duane Syndrome:

National Human Genome Research Institute

Orphanet: Duane Syndrome

American Association for Pediatric Opthamology and Strabismus

~Jess

You Are Getting Very Sleepy....

Do you know at what time I took this picture? Midnight. Connor has apparently decided that sleeping is for wimps.

I apologize if this is rather incoherent, but I am very, very tired.

He's going through a phase where he tries to put off bedtime as long as possible right now. Every night we read a story, and he asks for more books. Then he needs more water. Then suddenly he has to go potty. Then he needs to snuggle. He tries these delaying tactics as long as he possibly can, but it's all a sham, and usually when we put him down he's out within thirty minutes.

Not tonight. Tonight I put him down around 8:30, which is later than his usual bedtime anyway, and he looked at me and signed:

"No! Eat!"

Assuming this was one of his usual delaying tactics, I told him, "No, honey, it's bedtime."

Then I kissed him and left the room. He didn't cry or protest. He just decided to not go to sleep until he got what he wanted.

I have this issue where I can't fall asleep until Connor is asleep. Does anyone else have this problem? It's simply physically impossible for me to go to sleep while he's awake. After lying in bed staring at the ceiling and listening to him sing for about an hour, I went back in to his room.

"What do you need, baby?" I asked.

"Up!" he signed. I kissed him and told him to go to sleep.

After listening to him yodeling happily to himself in his crib for another two and a half hours, I finally gave up and went back in. He gave me a big grin when he saw me. Victory was his!

"Up!" he signed.

I gave in and brought him into our bed. This is our fool-proof, never-fails way of getting him to sleep. Usually he conks out within five minutes. Instead he rolled over to look at me and started yelling for my attention. My child is nothing if not persistent.

"What, baby?" I finally groaned after it was obvious that he was not going to sleep any time soon.

"Eat!"

It's now 12:54 at night and I just finished feeding him most of a bottle, which is what he wanted in the first place. He's back in his crib, still giggling, talking to himself and listening to Peter and The Wolf on tape for the fifth time. When I put him back down, he grinned and signed: "No!" I'm not sure how long he's planning to stay up. Maybe he's going for some kind of record.

Thank God I don't have anything big going tomorrow (or I suppose I should say today), as I'm going to be good for absolutely nothing.

My son isn't stubborn at all, is he?

~Jess

Connor Meets Clifford, The Big Signing Dog

Our local Barnes and Noble had their Valentine's day festivities for kids today, so we stopped by to meet Clifford the Big Red Dog. There were cookies, various Valentine's Day themed activities, and pictures with His Fuzziness himself. Unfortunately I didn't realize that they were doing story time as well, or I would have brought Connor's FM system with me. I did an okay job of interpreting, though I did notice that most of the kids spent the story time watching me and Connor rather than looking at the book. Guess we were a bit of a distraction.

Connor was rather in awe of Clifford. He is a huge fan of dogs-- any dogs-- and so I got the impression that if he could have figured out how to stuff that poor girl in a Clifford suit into the carry-on space under his wheelchair, he would have finagled it so we could bring her home with us. Clifford knew a little bit of SEE, which was a pleasant surprise, but Connor had a hard time understanding her. It's really hard to sign when you have paws instead of fingers.

After Clifford left the premises, we shopped for a bit and found some books (of course) and then sat in the coffee shop for a while. "Clifford," sans the big red suit, came and found us and gushed over how well behaved Connor was and how well he listened. Connor, who had been completely enamored with her before, didn't want anything to do with her now that she wasn't a giant fuzzy dog. Oh well.

~Jess

Party Time!

We attended our first ever toddler birthday party today. Connor's friend AJ turned two this week, and five or six little guys and gals between the ages of 18 months and 3 attended the festivities. It was an experience.

I think everyone probably has a grasp on how the typical two year old thinks. Try to picture the birthday party from AJ's perspective. Here he is, an only child who has just been fed an obscene amount of chocolate cake and is therefore on a major sugar high. All of the sudden these six other children have descended on his house, where not only do they have the audacity to actually speak to his mother and father, but they are playing with his toys. AJ spent the vast majority of the evening screaming at the top of his lungs and running around attempting to wrest every toy of his out of the other kids' hands. Picture a scene out of the movie 300, only with more carnage and "MIIIIIIIIINE!!!" substituted for "this is Sparta" and you'll have a pretty good image of the festivities.

Connor and I sat in a rather bemused fashion on the sidelines and watched the drama unfold. Connor, never one to miss out on any great entertainment, laughed and clapped his hands whenever one of the children landed a particularly solid punch on their opponent. He seemed to have a good time, so the party was a success on that front, anyway. I got to eat chocolate cake and see AJ's mom and dad, so I enjoyed myself. Poor AJ, however, seemed to think it would have been much better if everyone had stayed home and just sent presents.

The really interesting thing, though, was watching the way all of the children interacted with Connor. AJ, though initially terrified of both of us, by the end of the party was actually wresting toys out of the other kid's hands and bringing them to Connor to play with. None of the kids screamed at Connor or hit him. All of them spoke to him nicely. One of the little girls was particularly fascinated with him and spent ten minutes or so showing him a toy dragon (See, Connor? The dragon goes RAWR!!!) and patting him gently on the hand. The dragon needed to wear hearing aids too, so we spent a lot of time pretending that my cell phone was a hearing aid and holding it up to the dragon's ear so he could hear what we were saying. Connor and the little girl both thought that was pretty funny.

Connor seems to bring out this reaction in almost all of the children he meets. They are mutually fascinated with each other. I think it might be because he's not a threat to them. He doesn't hit, he's not running around and trying to interact with their parents-- he's just sitting calmly and watching everything they do. Because he is gentle and quiet, they seem to instinctively react the same way around him. Connor, in return, doesn't ignore other children or bury his head in my shoulder the way he reacts when he meets new adults, but makes a conscious effort to stay in their world instead of retreating to his own.

Even Connor has his limits, however, no matter how tolerant he usually is. He strenuously objected to being called a "little kid" by one of the girls at the party. He is a big boy, thank you very much.

~Jess

Medical Monday: Cardiomyopathy (Updated)

Doctor Connor is in the house! Dr. Connor declares my glasses and stethoscope to be the height of hilarity. Also he demands chocolate pudding.

Because Connor has so many conditions and I refer to them all the time without proper explanations, I figured I'd declare Mondays to be Medical Mondays from now on. I'll blog each Monday about a different condition Connor has and then post a link to it on the side bar as I go. This way people can get a better idea of what Connor deals with on a daily basis and his family and friends can understand what I'm saying when I call and spout ridiculously long medical terms.

DISCLAIMER: I would like to emphasize for those people who stumble upon this blog that I'm not a doctor, and I have no medical experience other than the approximately 900 doctor's appointments I've been to in the past two years. I just know about these things in relation to how they apply to Connor and not anyone else's child, so if you want accurate info on this sort of thing, please please please ask your doctor or go to the medical library instead of looking it up on the Internet. The library is your friend.

UPDATE: As undeniable proof that you need to get your info from the doctor and not me, a very nice person from the HCMA let me know today that you can only have LVNC or HCM-- not both as Connor's diagnosis sheet from his coordinating care doctor reads. I went back through my files and then called Connor's cardiologist for a double-check. Evidently somewhere along the line one of Connor's coordinating care doctors read LVNC with symptoms of HCM in a report from one of Connor's cardiologists and interpreted it as LVNC and HCM, which then found its way into Connor's permanant records and will now be almost impossible to change. Thanks, HCMA. Post corrected.

So that's that. Today's topic is cardiomyopathy.

I was checking out the news today online and came across an article about the Williams family. Louise and her twin daughters, Katie and Lauren all have dilated cardiomyopathy: a rare heart condition in which the heart is enlarged and weakened. I'd encourage you to stop by their website and leave some words of encouragement.

While Connor does not have dilated cardiomyopathy, he does have a very similar condition-- left ventricular noncompaction. I'm no expert on this sort of thing, but here is how it's been explained to me by several cardiologists:

The condition called left ventricular noncompaction (LVNC) is very rare and little understood. The muscle of the heart, known as myocardium, starts out during fetal development as a very spongy and spread-out material. As the heart begins to develop further, this material draws closer and closer together, becoming the dense, extremely strong muscle needed to be such an efficient pumping mechanism. With LVNC, the myocardium stays spongy, especially in the left ventricle, and so the heart is weakened and can't pump as efficiently. The difference in the heart muscle causes very deep nooks and crannies in the wall of the left ventricle, known as trabeculations. Trabeculations cause issues because blood can pool and form clots in these nooks and crannies, greatly increasing the risk of stroke. Connor takes aspirin every day to reduce the risk of this happening, and also takes another medication to help his heart pump more efficiently.

Because of how hard it has to work, Connor's left heart wall has become thicker over time. This is a condition that can cause serious problems if the thickness of the walls cuts off the blood flow in the heart. However, in Connor's case, the atrial septum-- the wall that divides the left and right ventricles of the heart-- is not becoming thicker and so he has no problems with blood flow. Other than not being able to play any contact sports or be in the military (I'm just heartbroken over that, I tell you) his heart issues shouldn't otherwise limit what he can do as long as they're well-managed.

The nature of Connor's heart defects are one reason why he is considered to have a shortened life span-- we've been told somewhere between five to fifteen years. However, most people who have been discovered with LVNC are diagnosed because they are going into heart failure, and so understandably the mortality rate is pretty high. It's likely that there are many, many people walking around with LVNC who have no symptoms and live a normal lifespan-- they just aren't ever diagnosed with LVNC and so the statistics don't reflect them. It's also likely that if Connor didn't have so many other things going on, his heart defects would never have been found, as he shows no outward symptoms at all. Besides, the doctors don't exactly have the best track record on the whole Connor-kicking-the-bucket thing. They've already declared him doomed on four previous occasions, and he's still his happy little very alive self.

Like Louise, Katie, and Lauren, Connor's heart condition cannot be fixed by surgery. If he were to have issues with his heart, he would have to have a heart transplant. He is at risk for sudden death, heart attack, congestive heart failure, and stroke. Luckily, Connor's heart thus far has caused him no problems and we hope this will be the case for a long, long time to come.

Here's some good links involving LVNC:

The Cardiomyopathy Association

The Internet Journal of Cardiovascular Research

Left Ventricular Noncompaction

Phoebe Willingham Muzzy Pediatric Molecular Cardiology Laboratory

American Heart Association: Rare Cardiomyopathies

~Jess

Breakthrough!!!!!

Connor absolutely blew me away yesterday.

We've noticed a pattern in the way Connor makes progress. Typically he focuses on either his physical development or cognitive development. Usually he'll make big strides in one area while plateauing or even regressing in the other area. He'll have a brief period of overlap where he either improves in both or improves in neither, and then he switches over to the other area for an extended period of time. I'm sure there's probably some official term for this kind of learning, which is apparently fairly common, but Jer and I refer to whichever skill set he seems to be making strides in at the present time as Connor's "focus area."

For the past two months or so, Connor's focus area has been in physical development. First Connor's sitting (with assistance-- his balance is still all wonky) improved considerably. Then over about about a two week period, he began standing and sitting down with assistance. As long as someone is holding his hands so that he can balance, he's able to stand now for up to two minutes at a time. About two weeks ago, Connor began learning how to "jump." It's the cutest thing in the universe, and probably a game just about every parent with a typically developing kid plays at some time or another. We grab Connor under the arms, say "Ready?" and he hunkers down like a little linebacker, a look of intense concentration on his face. "1...2...3....JUMP!" I'll yell, and Connor slowly heaves up with this tremendous effort. He would go, of course, absolutely nowhere if I wasn't lifting him up off the ground, but it's really, really cute and shows big progress.

Now, all of the sudden, he's switched gears. He's gone over a month without learning any new signs, and then in the past week he's learned three. He now signs "shoe," "jump," and my personal favorite: "please." He uses home signs for these of course-- for "shoe," as an example, he takes his right leg off the ground and waves it back and forth. But he gets his point across, so we're super excited.

As exciting as that is, however, I have some even better news. Four days ago, I bought some flashcards with pictures of animals on them, thinking that maybe I could teach Connor to recognize some of the more familiar ones. I know his new school will probably rely heavily on flashcards, so it's important for Connor to get used to them, and we've been having some more success with the PECS system, so I thought that maybe he was ready for them. I then spent the next few days holding up the picture cards one at a time and sounding like a complete and total idiot. "Cat. Cat. Do you see the cat? Here is a cat! The cat says meow!" I got bored after a while and started making up little stories, none of which were probably entirely appropriate. "Do you see the cat? The cat says meow, and it likes to shred Mommy's houseplants into little bitty pieces! Do you see the alligator? This is the animal Mommy thinks about getting for a new pet when she sees her destroyed houseplants. Alligators do not eat houseplants. Can you guess what they do eat?"

Connor did not seem terribly interested in these cards. He'd kind of look at them for a second, and then go back to studying his hands or the table lamp or something infinitely more interesting then these stupid little squares of cardboard his mom was shoving in his face and babbling on incessantly about.

Yesterday I decided that instead of just showing him the cards, I'd hold up two together and see if he could eye-point to the correct card. I didn't expect him to really be able to do it consistently, but it beat making up any more stories. I held up the horse and the cat, and asked him, "Connor, where is the cat?" Wouldn't you know he looked right at that cat? Okay, I thought. That was probably just luck. I switched the cat out to the other side, switched the horse out for a goat, and asked him again. And I'll be damned if he didn't look at the cat again. Okaaay... I thought, that was probably still just a fluke. One more time. I'm the eternal optimist. I switched the goat out for a spider and tried again. Connor looked at me as if to say Seriously Mom? and then looked at the cat for a third time and watched in bemusement as his mother sprang up off the floor and started dancing around the living room like a lunatic.

So after further testing, I've determined Connor can now identify the spider, horse, cow, rabbit, butterfly, bee, and kitty correctly five times in a row.

Next on the list, algebraic equations. Okay, Connor, where's the x?

~Jess

Bittersweet Goodbyes

This morning, Jer left for training. He's still in the US, but due to the nature of the training we won't be in contact with him for the rather significant time period he's gone. We sat down last night to talk to Connor about his daddy leaving.

The conversation went something like this (all of Connor's answers are signed):

Me: Connor, tomorrow Daddy has to go on a trip for work. We're going to get up very early and take him to work, and he won't be coming back for many, many days.

Jer: Connor, I won't be able to talk to you on the phone while I'm gone, but I will miss you very, very much and I will be thinking about you.

Connor: No.

Me: I know you don't want Daddy to leave, but he has to go. It's okay to be sad about Daddy leaving. Are you sad?

Connor: Yes. (He leans against my chest.)

Me: I will miss your Daddy very much too, but he will be coming back. We can talk about him every day and mark off the days on the calender until he is home. Do you want to do that?

Connor: Yes.

Jer: Can I have a love butt? (These are Connor's substitutes for hugs and kisses, which would involve way too much Connor-initiated touching for his comfort level. Basically, he gives you a very gentle head butt.)

Connor: Yes. (gives his Daddy a love butt)

Me: Do you want your daddy to give you a hug and a kiss?

Connor: Yes.

Now, it's pretty hard to tell whether or not Connor is actually understanding what we are saying or if he's just answering yes or no randomly to what sounds like a question. This morning, at around 3:45, we woke up, put everything in the car, and dropped Jer off at the office. Connor was too groggy to really respond to anything. We drove back home, cat-napped until about 8:45, and then woke up, ate a quick breakfast, and drove to our Deaf and HoH play group.

At the end of playgroup, we always sing the "Bye-bye"song. It's the kind of children's music that toddlers absolutely adore. It would make Sergei Prokofiev slam his head against a wall. The song has these fantastic, thought-provoking lyrics:

Bye bye (insert child's name here)

Bye bye (insert child's name here)

Bye bye (insert child's name here)

It's time to say bye bye!

Anyway, when Connor's turn came around, he listened carefully to everyone singing his name, and then signed:

"No. Bye bye Daddy."

Guess he was paying attention after all.

~Jess

Public Service Announcement

Did you know that prunes are "full of natural sugar and vitamins that act as skin soothers - especially well suited for stressed or sensitive skin?" This is according to Janet Cox at the Dole Nutrition Institute, which I'm sure is an excellent source as Dole has an entirely objective, unbiased opinion about prunes since they don't, you know, sell them or anything.

Did you also know that in addition to being excellent for the skin, prunes make this great noise when you spit them out of your mouth? And they make fantastic shampoo and furniture paint as well!

Thank goodness we have Connor to enlighten us on these matters. In these tough economic times, it's important to get as much out of our resources as possible, and he's determined to find as many uses for prunes as he can. As long as those uses don't involve actually eating them. Because that would be gross.

~Jess

First Meeting Heebie Jeebies

So our first meeting with the school district was interesting.

I say interesting because I'm not quite sure what to think of how things went, and I don't want to get too pessimistic before we've met any of the team we'll be working with. Basically we sat down with a coordinator, outlined the things that we wanted to do, set up an meeting for an evaluation, and then signed a piece of paper that said we'd been warm bodies in a room.

The coordinator was very, very nice, but I still came out of the meeting with a sinking feeling. We've outlined two very specific items that we want to walk out of Connor's IEP with and absolutely will not take no for an answer. We've thought about these items for quite some time. We've discussed them with his therapists, special education teacher, and doctor and they all agree with us that we are not asking for unreasonable things and have very, very good reasons for wanting them. They are:

1) Connor needs to be in a Deaf and Hard of Hearing classroom. Ideally we'd like to split his time-- two days a week in the Deaf and HOH classroom, and two days out of the week in the Developmental classroom, but if we have to choose one, we'll choose the Deaf and HoH. Connor has to continue to acquire language, and he needs to do it in an environment where his peers all sign, even if they are learning things a little bit out of his range. We can supplement with physical and speech therapy outside the classroom if necessary, but he can't spend four days out of the week in a classroom where he doesn't understand what everyone is saying.

2) Connor needs to be assigned an aide. We'd ideally like this aide, preferably a nurse aide, to go to SEE classes and learn how to sign. Since he uses a wheelchair that he cannot direct himself, needs help going to the restroom, cannot feed himself, is visually impaired, will have a g-tube, and is at risk for seizures in which he stops breathing, heart failure, and stroke, we feel that someone who is there to help Connor is not too much to ask.

Once we had outlined what we wanted for Connor, the coordinator, who as I said was very nice, began speaking gently to us about "least restrictive environment." She said that having an aide would be the highest level of restrictive environment, and they need to start with the fewest restrictions and work up from there.

After having said this, she then told me that there were only two schools who had an RN and LPN on staff, and the Deaf and HoH preschool was not one of them. Because of Connor's potentially life-threatening issues she believed it would be best for him to go to the one that was only five minutes away from the hospital.

So essentially what she was telling me is that in her opinion, it would be best if Connor went just to the Developmental preschool without an aide.

Now, I have a few problems with this. Okay, I have a lot of problems with this, but I'll just outline the ones that center around the logic she was using to justify this opinion. In my understanding, the concept of least restrictive environment centers around the idea that a child be as included as possible with other children who do not have special needs. Now while the Deaf and HoH classroom does contain mostly children who are Deaf or HoH, it also contains children who are CODAs (Children of Deaf Adults) or have siblings who are Deaf. If Connor can participate in a classroom with typical children provided he has an aide, I would think that this would be a less restrictive environment than putting him in a classroom of only special needs children without an aid and, I might add, without any form of communication.

I would be able to understand the logic behind him needing to be at the school only five minutes away from the hospital if I didn't already know that the Deaf and HoH preschool is only seven minutes away from the exact same hospital.

I didn't go into any of my reasons why I was not happy with the initially expressed opinion at this meeting. I know that the coordinator doesn't actually have any say in what happens to my child at this stage in the game, though she might later as she is also a child psychologist and could potentially be on the evaluation team. I didn't want to get angry and start things off on the wrong foot right from the beginning-- I'd much rather have a great, mutually respectful partnership with the school, so I won't dig my heels in until we get to the meeting where it matters. They might be completely in agreement with me and immediately give us everything we are asking for. That being said, I absolutely will not take no for an answer on these two requests, and I can be very, very stubborn when I need to be.

We'll just have to see. It's just that this seems to me like a warning we may have a fight on our hands.

~Jess

IEP

We have Connor's first IEP meeting this morning.

I know all we're doing is going over paperwork and saying that our son needs an IEP. I know this meeting is not very important.

Doesn't matter. I'm terrified anyway.

I'll let you all know how it goes.

The Kissing Corner: Part 2

I have never been good at waiting.

I think it's because I'm a worrier. I'm the type of person who lies awake at night thinking up implausible scenarios in my head and outlining what I would do if I was put in those situations. When I'm in the middle of a crisis and I have something to do, then I'm perfectly fine-- but take me away from the action and make me sit on my hands, and I'll drive myself slowly, quietly crazy thinking up everything that could go wrong and feeling totally helpless.

Connor's surgery was supposed to last two hours. It took six.

We had a couple of books to keep us busy, but neither of us could concentrate. We didn't talk to each other. There wasn't anything else to say. We just sat and glanced nervously every five minutes at the phone that was our link to the operating room.

In order to begin the surgery, the doctors had to remove the IV line in Connor's umbilical cord and insert a central line. This line would enable them to quickly administer medication if Connor's heart began to fail, and also to safely keep him under anesthesia for the amount of time needed to conduct the surgery. Connor's veins were so small that they were having difficulty placing the line-- the needle would go right through the vein. After an hour of trying to get the line in place, they were finally able to get it to work, only to have one of their medical students accidentally pull it out when he was helping positioning Connor on the operating room table. They had to start over from scratch.

After two hours they brought in a special IV team, who would attempt to cut down to Connor's jugular vein and insert the central line there. Unfortunately, they chose his left side when they were doing the procedure. We later discovered that Connor is missing his jugular vein on the left side.

Every half an hour or so, someone in the surgical room would call the phone and let us know that nothing had happened yet. Then we would call out to my mother's cell phone and let her know the news. She and Jeremy's mother would then call everyone else to let them know, and we would all go back to waiting.

We had many, many relatives and friends that would have gladly stayed in the waiting room with us, but we had asked to be alone. I think that everyone handles this sort of thing differently. In my case, and I think it was probably the same for Jeremy, I was so physically and emotionally exhausted that the thought of being in a room with other people, even people I loved very very much, was unbearable. I couldn't make small talk, or even eye contact. Every shred of self control I had was needed just to keep breathing. I think if anyone other than Jeremy had been there and tried to comfort me I would have just curled up in a ball in the middle of the floor and subsided into incoherent weeping. After our initial breakdown, we just sat across the room from each other in silence. Anything else would have been too painful.

After four and a half hours they finally managed to insert a central line. Now the surgery could begin.

By this point, Jeremy and I hadn't eaten for almost ten hours. We debated for a little while about whether or not we should go and find something to eat. We were both terrified that we'd leave and Connor would pass away on the operating room table while we were gone. We finally decided that Jer would go and find us something to eat and I would stay in the waiting room.

The cafeteria was on the other side of the hospital, in another building. By this point it was late enough that the normal doors leading to the building were all locked, so Jer had to come back empty handed. A nurse heard us trying to figure out what to do and offered to show us a passageway in the basement to reach the cafeteria. This time, I would go and Jeremy would stay.

The corridor was long and dark, and the cafeteria was mostly closed, but they had a cart of ready-made meals for the nurses and they let me take two. I hurried back down the corridor, which now seemed twice as long, and into the elevator. I walked through the open doors and saw the surgeon sitting in the chair next to Jeremy, their backs to me. The bottom fell out of my world-- the surgery was supposed to last at least another half an hour.

Then Jeremy turned and gave me an exhausted, elated grin, and I knew everything was okay.

Once the problem of the central line had been solved, the surgeon told us, Connor's surgery went like a dream. His heart had absolutely no problems, they had no trouble removing the kidney, and things went much, much faster than they expected. Connor was already being moved to a new room in the Cardiac ICU, and we would be able to see him just as soon as everything was set up.

We called out, told everyone the news, and then raced down to the Cardiac ICU. It was past midnight and we were so tired we were nearly delirious, but somehow hearing it from the surgeon wasn't enough. Before we could leave for the night, we had to see our son.

The receptionist at the desk told us that they were still getting Connor settled, but she'd let us know as soon as they were ready for us. We waited another two hours before we were allowed in-- the nurses forgot to tell the receptionist that they were finished. Finally we were buzzed through at around 2am and stumbled down the corridor towards his room.

He was still asleep, still intubated, swollen beyond all recognition, and covered in tubes and wires, and it didn't matter--he was the most beautiful thing I had ever seen.

Our son was alive.

~Jess

If you are looking for it, here's part one.

The Kissing Corner: Part 1

This is a serious, rather painful blog post. If you aren't in a serious mood right now, this is not the post for you.

I'm a frequent reader of Carrie's blog, Little Miss Hannah. Carrie writes about her daughter Hannah, who has recently been diagnosed with Gaucher Disease. She wrote a post today that made me want to share our own experiences with dealing with the knowledge that our son may have a shortened life span.

We were originally told that Connor would be stillborn, and I spent the last four months of my pregnancy waiting for him to die. Every week we would go in for an ultrasound, every week we would see him still moving, his little heart still beating, and every week Jeremy would drive us back to the house while I sobbed in the car, simultaneously relieved and terrified that he was still alive.

We didn't know what the future would hold for us, but the doctors told us that it would probably be bleak.

When Connor reached the point where he could survived outside the womb, we began to have more hope. Surely if he'd made it this far, he would be okay. When it looked like he was taking a turn for the worse, we went ahead and induced labor. Connor was born after 23 hours with his umbilical cord wrapped around his neck, blue-gray, unbreathing and totally limp. His heart was still beating, though, and five minutes later I held a tiny little bundle in my arms for an all too brief moment before he was whisked off to the NICU.

Everything was so confusing and it was all so fast that we didn't really know what to think. Connor had a whole host of life-threatening problems. He had about 25 birth defects, affecting almost every system in his body except for his respiratory system. His right kidney was so large it was cutting off blood flow to the rest of his body and displacing his other organs. His brain was missing a couple of areas and others were small or malformed.

On the second day they gave us the news. We were told that if he was to make it that he would probably have what they called brain stem function only-- that he would breath and his heart would beat, but that was about it. He would never know who we were, never interact with his surroundings, never laugh or move his arms and legs with purpose. I lay awake that night secretly wondering if it would be better for him if he didn't survive.

On the third day they let me hold him for the first time. It was a delicate and tricky maneuver-- he had so many wires, sensors and IVs that it was terribly difficult to transfer him to a chair without losing something, but Jeremy and the nurse managed and suddenly Connor was in my arms. He let out a little sigh and fell asleep. I remember bending over his head, and the smell of his hair hit me like a wave and I was utterly, completely lost. He smelled like a combination of every good, clean thing there is in this world. Fresh baked bread. Newly turned soil. Air swept clean after a thunderstorm. Home. That was it for me. It didn't matter what the doctors said. I was in love.

On the fourth day, we sat in a little room with seven doctors and a chaplain who asked us to choose the manner of our son's dying. Connor's kidney was causing his blood pressure to sky rocket, and they didn't think his heart could hold out too much longer. If they didn't do the surgery to remove the kidney, he was sure to pass away within the next few days. However, his blood pressure was also dangerously high for surgery, and they believed that his heart probably would not make it through the stress. They gave him between a five and ten percent chance of survival. What did we want to do?

We knew that kidney ailments are excruciatingly painful, and that Connor had probably been in constant agony for the last three months of my pregnancy. We felt like if Connor was going to pass away, it would be better to do it on the operating room table where he would feel nothing and his passing would be quick rather than a lingering painful death. There was the feeling, too, that Connor had fought so hard to make it this far, that we couldn't allow him to not have that chance. We calmly explained our reasons, and told them to do the surgery. Then we asked for a moment alone, and when everyone had left, broke down in each other's arms.

We baptized Connor that afternoon. The chaplain was excited: it was his first baptism, and he was very honored to be present. He smiled as he told us that normally they don't do these things unless it looks like death is near, but he'd talked with the doctors and thought that it would probably be a good idea. Then he realized what he'd said, turned a little pale, and suddenly became very busy looking up a passage of scripture.

On the fifth day, we said goodbye to our son. I remember waking up that morning and being shocked that the sun was still shining. It didn't seem right, that the sun should be shining on the day my son would die. And all of the people walking around on the street-- didn't they know that the world was over?

We took a roll of pictures of him. We sang him a lullaby. We caressed his forehead. We walked in silence next to his isolette as we headed down towards the surgery room, and with every step it felt like I was walking in a dream. None of this should have been happening. I wanted to snatch Connor out of the isolette and run.

The men who transported him down to the operating room didn't know about his prognosis. We reached a corner and stopped.

"We call this the kissing corner," one of the men said. "We call it that because this is where you kiss them goodbye."

And I looked at my son, and touched his hand through the glass, and I said goodbye. I tried to throw as much of myself into those words as I could so that he'd know I was there with him and he wouldn't be scared. And I watched them wheel him around that corner, saw a last glimpse of his hair through the glass, and I thought, that's it. That's the last time I will see my son.

We managed to find a private room, stumbled into it, closed the door, put our arms around each other, and felt our hearts break in our chests.

~Jess

For part 2, click here.

Scary Day.

As I'm typing, Connor's asleep in the next room, listening to one of his favorite CDs: Heartbeat, Kodo's 25th anniversary album. Kodo is a taiko band-- Japanese drumming-- but they combine all sorts of world music elements in their CD. It's not exactly what I would call relaxing, but Connor seems to love it. I think one of the reasons he enjoys it so much is that he can hear some of the drumming and feel the vibrations even with his hearing aids off.

He and I both had a rough day today. We had to sell our little car, as the clutch is broken (to the tune of 1300 dollars or so) and to fix it would be almost more than the car is worth. Since Jer will be deploying at some point in the relatively near future, there's not really any point in buying a new car only to have it sit for a year. So we sold the Hyundai to a very nice man who was looking for a safer car to drive his eight month old daughter around in, and just happened to be an Hyundai auto tech, so he could fix it up for much less.

At any rate, Connor and I went by this gentleman's place of work to sign over the title. I had Connor's wheelchair with me as I wasn't sure how long we would be there and it's very difficult to hold and sign paperwork when you have a 20 something pound wiggly kid in one arm. There was no wheelchair ramp to get to the service station-- my choices were between walking all the way down the parking lot to the outside of the center and going around through the car entrance, or to try and take the wheelchair up a really short flight of stairs with a couple of steps, a big landing, and then a couple more steps. I've taken Connor up steps like these in his stroller probably 8,000 times, so I didn't think the wheelchair would be any different.


A very nice man at the dealership had seen me assembling Connor's wheelchair out the window and offered to lend me a hand, which I accepted. He lifted the chair up on to the wheelchair base for me. Unfortunately while I heard the click of it snapping into place, and jiggled it to make sure it had caught, I failed to look up under the wheelchair to assure that the front hooks were fully engaged. You can probably see where this is going.


I took Connor up the first two stairs with no problem, stopped on the landing for a moment, tilted the front wheels up to go up the next stairs, and then watched in horrified disbelief as the entire chair lifted off the base in what seemed like slow motion, pivoted up, and landed face-down on the concrete stairway.


I frantically turned the chair over and inspected a very, very scared and very, very sad Connor. I grabbed my phone out of my back pocket as I turned the chair over, expecting to have to call 911, especially since Connor is only secured to the chair by a lap belt and so should have hit the concrete head first. I was absolutely amazed to discover that though he was scared, he wasn't bleeding at all. Apparently the chair had fallen so that Connor's head was in between steps instead of on them, and the frame of the chair had protected the rest of his body. We sat down on the steps and I cautiously inspected him from head to toe. Miraculously, not only were there no broken bones or head injuries, there wasn't a scratch on the kid. He calmed down pretty quickly, and signed back to my questions that he was scared but he didn't hurt anywhere.


I think Connor's guardian angel deserves a serious pay raise.

So after we finished up with selling the car, we drove home, Connor went down for a nap, and I had a short shower and a fit of hysterics. I learned two basic lessons about Connor's wheelchair from this experience. I will never, ever ever ever attempt to take Connor up any stairs in his wheelchair ever, ever ever again. I will always, always always physically check under the chair to make sure that all of the hooks are engaged that should be, even if I've heard the click of them engaging and checked the chair by feel.

Connor also learned a lesson about his wheelchair. Connor learned that wheelchairs are scary, evil demons that make you fly up into the air and fall down with no warning. Connor is now (and rightfully so) absolutely terrified of his wheelchair and doesn't want to have anything to do with it.

Thank God he's okay.


~Jess

Primal Scream Day

I've been trying to do more interpreting for Connor in areas such as meetings, parties, doctor's appointments, performances, and conversations. I feel like he gets left out of a lot of things that could be learning opportunities for him, plus it's a good way to work on my interpreting skills. The problem is that I'm still pretty slow while signing, so I get way, way behind and have to paraphrase to catch up. I'm sure this probably drives Connor nuts, but the only way I'll get faster is to keep practicing, and we can't really just have an interpreter follow us around all day, so I'll keep doing it.

As a consequence, I've developed a list of pet peeves. Since Ellen over at To The Max has declared it Primal Scream day, I'll be sharing them with you. I know we're supposed to do it in all caps, but I can't bring myself to do it. Oh well. This isn't really a primal scream, anyway-- more like a list of whines.

PEOPLE WHO TALK REALLY REALLY FAST: I know it's in your nature, and you shouldn't have to slow down for me, but I'm still on your first sentence and you're already done talking and impatiently waiting for me to reply to you. Slow down a bit, for the love of God.

PEOPLE, ESPECIALLY DOCTORS, WHO USE REALLY REALLY BIG WORDS: Your sentence involved the words sphygmomanometer and photoplethysmograph, when you could have said blood pressure cuff and oxygen saturation levels. We all know you are really, really smart-- you made it through medical school, after all. But do you realize I have to finger spell all of these words? Do you realize I can't spell most of these words? It makes for really slow going.

PEOPLE WHO WORK WITH SPECIAL NEEDS CHILDREN WHO HAVE BEARDS: My son cannot lip read if you look like Santa Claus. I know there are lips in there somewhere and it is your personal style choice, but if you work with anyone who is having to lip read, shave.

PEOPLE WHO LOOK AT ME WHEN THEY ARE TALKING TO MY SON: Sure, I'm the one telling him what you said. But he's going to think that eye contact is not part of a conversation. If you want to ask him a question, ask him, not me. I'm going to start giving you his answer while looking at that potted plant over there.

PEOPLE WHO THINK I AM DEAF BECAUSE I AM SIGNING TO MY SON AND START TALKING ABOUT US TO EACH OTHER VERY LOUDLY IN THE GROCERY STORE: Yes, I can hear you. I am not Deaf. And yes, I can shop in the grocery store all by my very own little self, bless my little heart. Watch me start talking very loudly and signing to my son about how rude you are for saying those kinds of things about people when you think they can't hear you. Also about your weight problem.

Ahem. Rant over.

~Jess

School Worries

So we're just starting to really gear up for Connor's transition to school. I have to admit: I'm totally, completely, NOT READY for him to be in school. I've been in denial for the last few months. Surely my BABY won't be three that soon?

But here we are less then three months away, and suddenly whether I want to or not I have to start getting him ready. It's IEP time.

For those of you who aren't teachers or parents of special needs children, an Individualized Education Program, or IEP, is a contract with a school that outlines the educational goals of the student, any aid, programs, or supports to be provided by the school, and any other accommodations needed. Every special education student is required by law to have one.

Now in Connor's case, we feel that we should do a little something extra for his teacher or teachers. After all, if I was a teacher and received an IEP for a child that included the kind of medical report and evaluation Connor's folder will likely have, I would be very intimidated and a bit at a loss about what to do with the child. I want to let Connor's teachers know what his strengths are and the most effective teaching methods for him without making them defensive or having them feel like I'm overbearing or interfering. I think a friendly, not antagonistic relationship would be the best for all parties involved.

So here's what I'm thinking. I'd like to make a notebook for Connor's teacher. It would be a three ring binder (easily updated) divided it into three main sections: About Connor, Communication, and Medical. Here's what would go in each section:

About Connor:
Personality
Areas of Interests and Favorite Games
Likes And Dislikes
Strengths and Areas of Difficulty

Communication:
Connor's Signs
Vocalizations and Their Causes
Other Methods of Communication (eye-pointing, picture communication, etc)
This section would also include a DVD of as many of Connors signs as we can capture on tape, and me or one of Connor's therapists signing the rest. We'd also try and film some of Connor's games and common behaviors as a resource for the teachers.

Medical:
A brief explanation of Connor's medical issues in layman's terms
How these issues will affect Connor in the classroom
Medications Connor is taking
Special Dietary Issues and Allergies
Emergency Contact Guide
Emergency procedures in the event Connor has his g-tube pulled out, has a seizure, goes into heart failure, etc.
Instructions for all of Connor's equipment-- hearing aids, FM system, wheelchair, g-tube, oxygen, etc.

So I'm kind of wondering whether or not this is really a good idea or would be useful to a teacher, or if it would be totally overbearing. Some of this info will probably be in the IEP-- I figured it might be a little easier to wade through if it was organized like this, though. What do you all think? Am I being silly?

~Jessie

Do You Smell That?

I apologize in advance if this post is rather scatterbrained. I made truffles today, and am currently on a major sugar high as a result of the massive quantities of chocolate I consumed during the cooking process. The fact that some of the truffles contained espresso probably did not help.

Anyway, I spent a lot of time in the kitchen today, which brings me to my topic for the evening-- using your spice rack as a therapy tool.

As you all know, Connor has Sensory Processing Disorder. His mostly manifests in a reluctance to touch new objects and in an extreme sensitivity to texture, but all of the senses are connected. What we've discovered is that if we work on one sense-- sound, or smell for example-- after a while he's able to tolerate more stimulation of his other senses as well. So about once a week or so, I choose some selections from my spice rack, bath products box, and tea collection, and we spend about twenty minutes experiencing different smells.

It's very funny to watch which smells Connor enjoys and which he can't stand. He really likes smells that I use often in my cooking-- he particularly enjoys cinnamon, nutmeg, oregano and rosemary. He hates almost all floral scents. My lavender tea makes him act like I've shoved offal under his nose. He doesn't care for citrus. He also hates spicy scents, even though he loves spicy food.

Surprisingly enough, despite his hatred of all things floral, his favorite scent is jasmine. He LOVES the smell of my jasmine tea. Who wouldn't? That stuff is amazing. He will attempt to shove his entire nose into the jar to get closer to the smell. I have to save it for last, because he will sometimes refuse to smell anything else after it, but will just sit there whining and pouting until I let him smell it again.

During the spring and summer we venture out into the garden, and while I'm working I crush herbs and stick them under his nose. I'll rub them on his hands as well, and he spends a lot of time holding them to his nose, taking them away and looking at them, and then holding them to his nose again.

I've never been a big believer in aromatherapy, but in recent months I've changed my tune. I've found that if I have Connor smell some of his favorite scents before we go to a noisy, crowded place, he's less likely to have difficulties while we are out. I'm seriously considering getting some essential oils of his favorite scents and carrying them in my diaper bag to have on hand if he gets worked up about something. In the meantime we'll just keep making due with my less portable (but free!) garden herbs and spices.

~Jess

Leaving On A Jet Plane...

So in about six hours, Connor and I will be up on a plane headed for Texas.

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.


~Jess