Dysphagia

It's always a challenge to figure out what to feed Sam. He doesn't chew and he has all these aspiration issues. Food goes up his nose and down into his lungs if we aren't very careful. So I puree everything and thicken liquids. But he doesn't like food that looks different from everyone else's or is just plain grey and no fun.

Tonight we had Panda Express. You get two entrees and one side per person. So that makes 6 different entrees. I split them up so we each had a bit of each of these. I ordered one side of rice and two steamed vegetables. For Sam, I made a big platter with steamed rice in the center. Then all around the outside I had a little bit of all the different things we had. I ground them all separately and spooned them over the rice. It looked very fancy and delicious. Each entree had a little bit different color.

When something is too dry, I add a little bit of half and half and it gets nice and smooth. Calories are not his issue...

He was very interested and happy to eat with us!

Mom of a Kid with Profound Disabilties

Ok this is hard. It's the second week of Program/School and with my eternal optimism, I filled it with appointments for ME thinking I would surely be free to do things without my sidekick. Last week he only made it to program one day because his sleeping patterns are way off and he had too much fluid in his lungs.

Rosa, the aid in his room, is a very nice woman who is convinced I'm over protective since he is always healthy and cheerful on the days I take him. She always says, "See? He is FINE here. He LIKES it here. He ate really good and he laughed all day long." So I wonder if she's right. Maybe I should make him go more often. Plus, they only get paid on the days he goes and they are really hurting for money in this crummy state, so I feel bad about that.

Yesterday was all about me. I took him to Esperanza and went to have my hair done. It was awesome. I really love my new hairdresser and going to her is the ultimate luxury in my life. When I went to pick him up, he smiled dimly at me and put his head down and went to sleep. Rosa told me all about what a great day he had, but all I could see was his blue fingernails.

But I had an appointment at Costco to get my new hearing aids. So I took him to Starbucks, which he loves, and bought him some caffeine. That sometimes perks up his lungs a little until we can get him home and hook him up to the oxygen. Then we went to get my hearing aids. (Which are going to take some getting used to, but I'm really excited about. They match my pretty hair!) Then I thought we'd pick up a few things since we were there. He was NOT happy about this. He grumbled and complained all the way around the store. He also stopped to sample snacks at every station throughout the store. So I thought he was just hungry. We bought a minimum of stuff and came straight home. By this time he was making the very loud, distressed honking noise he makes when something is really wrong. But he wouldn't eat and he wouldn't settle down.

His oxygen was not that low but he did have a junky cough. What are they feeding him at school? Is he aspirating? Rosa says that he drinks a lot of tea. Is he aspirating it? Are they feeding him carefully when he eats so much? He doesn't really care how much he aspirates or how much food goes up his nose. You have to watch him. And he is already having trouble with his lungs lately. (Allergies? It does seem to be worse in early fall and late winter) Or is his "laughing all day long" actually that manic laughter that is really a desperate plea for help? He gets this weird out of control laugh when he is upset about something or really worried about something. Do they know that?

Bath, chest vibrator vest, nasal spray, nebulizer, chest PT, dinner, more chest PT. Nothing helps. 10PM I rip the hearing aids out. The honking is really getting on my nerves and I certainly don't want to hear it as loud as the hearing aids make it. 11PM still honking. Oxygen getting lower. I hook him up to the oxygen machine and keep checking. I put soft music on the IPod and hook him up to that, too. Still honking. 12:30 AM we're both exhausted. I notice he is rubbing his feet together as if they hurt him. Could it be Athlete's Foot? He gets that a lot. I put cream on his feet and he sighs deeply and changes his tune to his (also loud and annoying) going to sleep hymn. 1:30 AM still singing but much softer. I give up and go to bed.

So it's almost 8 AM now. I have to decide what to do today. I have a dentist's appointment. I broke a tooth almost a YEAR ago and I really need to get it fixed. I can't take him with me to the dentist appointment. He really freaks out when we go somewhere and I am the patient. He doesn't like knowing I'm vulnerable. Well, you can imagine why. He knows he'd be in really big trouble if anything happened to me! (There's another blog topic - what happens when something happens to mom?)

So obviously he was in major crisis of some kind yesterday. Was it a lung crisis or an Athlete's Foot crisis or both? He's sound asleep with his head hanging over the edge of the bed now which usually means he's having trouble with his sinuses. Do I get him dressed in his sleep, grab an Ensure, drive through McDonald's and take him to Esperanza? He will probably sleep most of the time. Or should I just let him sleep here and give him extra machine treatments at home? And reschedule the dentist - again.

AM I over reacting? Or am I UNDER reacting because I'm selfish enough to want a new, expensive crown in my head. (Hair cut, hearing aids and now I want a crown. And I don't even have a job! Next I'll be eating bon bons and watching soap operas) Magic thinking: am I somehow causing his distress because I feel guilty about being so selfish?

Well, writing all this out helps. The problem is that last night is a fairly common sort of night around here. So I get to taking them for granted. I think of them as practically "normal". But when you look at it objectively, what mother in her right mind would send a kid to school after a night like that? It really doesn't matter what Rosa thinks of me, I'm in charge and I'm supposed to be the expert on Sam. Sam is my job. The buck stops here.

I am so grateful for my dentist and his wonderful receptionist. I know I can reschedule and they will be understanding. I need to give Sam some extra treatments today and watch him to see if I can figure out what is going on. The crown can wait. Again.

Sam's Health Issues

I spend a lot of time and energy pretending we're just like everyone else. Sam may be short, but he's other wise normal. But that's just denial. It isn't normal for a mom to change her 27 year old son's diapers for one thing. It isn't normal for a 27 year old son and his mom to have such a GREAT time singing along with Elmo. Every year we have what's called a "Staffing" at Esperanza and it starts with a conversation about his strengths. The first thing mentioned every year regardless of who is participating is his smile. He really warms a room. The second is usually something about his delight in buttons and things that vibrate.

He misses about half of the school year because I just can't get all the things balanced that are required to keep him healthy. So just for a minute, I'd like to "go public" with what I have to do every day to keep him going. First of all there's food. I have to puree every thing and thicken most liquids before he gets them. But he doesn't like baby food or food that looks or tastes boring. So I have to figure out ways to make pureed food look good. We also go out to dinner a lot because he always eats well at restaurants. There's a limited amount of things he can eat at restaurants. He usually has a cheese omelete and pancakes drenched in butter and syrup. I make sure he gets 3 Ensure or Boost a day.

I change him, dress him, brush his teeth, wash him and clean up his messes. I try to figure out things to keep him occupied besides watching videos and sitting on his bed all day with a vibrating toothbrush. He WILL sit on his bed and drool with a toothbrush unless I motivate him to do something else.

His medical issues require several machines to keep him going.
First: Sleep Apnea. He needs to get at least 4 hours of good sleep in every 24 or he will get very sick. Unfortunately, it's usually somewhere between 4 am and 1pm. I've been trying to adjust this pattern his whole life with only partial success. We tried all last year to get him used to the bi-pap machine in the hopes that this would help him sleep more. I tried putting it on him when he went to bed. He would wear it until I left the room. I tried putting it on him an hour after he went to sleep. But that meant staying up until he went to sleep. And he doesn't go to sleep until early morning. So I tried going to bed and getting up at 4 am and putting it on. He wore it for a while, but it was always off when I got up at 6. So I tried putting it on at 6. This worked for awhile. But eventually he just started getting up at 6 with me. So I went back to getting up at 4 and he got so he would rip it off the instant I put it on him. I leaving the machine (which is very loud) on with out putting it on him for a couple of nights and then putting it on him again. But he still took it off the minute my back was turned. I started seeing snakes in the corner of the room and crying at nothing at all and basically losing my mind from lack of sleep. So now I check his oxygen at night and if it's low, I put him on oxygen all night. He tolerates that okay. I also check it at 6 am to be sure it isn't low. It is usually fine. I want it to be between 89 and 95. If it gets too high, the brain thinks it can stop breathing and that makes the CO2 levels go up.

The biggest danger from sleep apnea is the CO2 blood level that develops which can actually kill you if it gets too high. He recently had an arterial blood gas test which showed that his CO2 level is the same as it was a year ago. I think this means that there's no point in continuing to try to adjust to the bi-pap machine and I'm going to ask the doctor if we can get rid of it. Then we can go back to the same problems we've had his whole life - which in retrospect were better than this last year when I was trying so hard to fix them! I think his CO2 levels have been gradually rising over his entire life and we should continue to monitor them. When and if they get significantly higher, we'll re-address the bi-pap machine and even consider a respirator that connects to his throat at night.

Second: Bronchiectsasis. He frequently has so much mucus that he can't breathe and gathers in huge quantities in his lungs making it difficult to breathe and easy to develop pneumonia. This is not cystic fibrosis but it is very similar. We don't know why he develops so much mucus. We have a number of machines to address this problem and they must be done in the morning when he wakes up and at night before bed and sometimes when he gets home from school. Going through the whole routine can take 30-45 minutes. But even when I do them faithfully, he still gets too much mucus sometimes and then I have to keep him home to monitor him. We have a nebulizer through which we give him medication to open his lungs up and make them stronger. We have a nasal wash machine and we have a chest vibrator that was developed for children with cysctic fibrosis. We also do a lot of manual chest PT. We have a suction device to help when he's got stuff stuck in the back of his throat. (Mostly mucus)

Third: Aspiration and swallowing difficulties. We had a swallow study done this summer and discovered that WHEN HE IS FED CAREFULLY he doesn't aspirate food. Obviously, aspirating food into his lungs is a very dangerous thing because he already has challenges in his lungs. HOWEVER if he is given thickened liquids or liquids in a commuter mug or sippy cup and purreed or very soft foods, he doesn't aspirate. Cake and donuts must ALWAYS be made soggy before he eats them. He must not have anything "crumbly" because it is easy to aspirate. There is a Mexican cake called Dulce de Tres Leche that is the perfect consistency. I always think of that cake when I am adding liquid to his cakes. For example, when we go to Starbucks, I order him a Traditional coffee Cake and a Mocha frappichino in the bottle. Then I pour the frappichino into the coffee cake until it is soggy. It tastes like Tiramisu and he can eat it just fine.

Food does go up his nose if he has more than about a teaspoon full of food in his mouth at a time or if it is the wrong consistency. This means more mucus, infected ears and possibly aspiration into his lungs although this has not been seen in the tests. Again, careful monitoring of his eating is essential. We are considering botox treatments to decrease the amount of saliva in his mouth hoping that helps. But insurance may not pay for it.

So he gets sick when his lungs are compromised by aspiration or just an accumulation of mucus or when he hasn't been getting enough quality sleep. He also gets sick when his weight goes below 75 pounds. (This makes my grocery shopping odd - I buy low calorie, low fat stuff for me and the opposite for him. And try not to eat his food!)

I also take him to Target and we look at stuff for hours and then we meet Eileen at Starbucks. See, it's not all work and no play!

Okay. So I've said it. Now I'll go back to pretending this is just a lot of fun.

White People

"White people can help us but they cannot join us." - Malcom X

Or anyway Denzel Washington said it in the movie by Spike Lee.

The one year of my life I didn't date Charley, I did briefly hang out with the president of the Black Student Union. That was around 1970. I went to a rally he ran for Louis Farrakhan. I didn't notice I was the only white person in the auditorium until practically the end when I began to notice the angry looks I was getting. I kind of slunk out and that guy never spoke to me again.

I started out life as a minority. I was a white kid on the Navajo Indian Reservation. Although we moved to California by the time I started school and I became a California Surfer girl and eventually a hippie just like my peers, I don't think anyone realized the impact that my early years had on me. I don't really believe there is a place where I "belong" outside of my own home. I am at home in my skin, but I travel through a world where other people are fascinating because they are different from me.

In high school, many of my friends were Japanese. (The rest of them were in the band.) In college, my friends were multi-cultural, flamboyant, counter-culture, gay. Then I moved to Japan where I felt completely at home unless I looked in a mirror. Sometimes I would catch a glimpse of myself in a window and be shocked. Who was that white person? Oh wait. That's me!!!

We attended an "inclusive" church for many years. That means that it was a church for gays, lesbians, transexuals and bisexuals and also us. It was a great church. But eventually we drifted away because, although the pastor wanted it to be an "inclusive" church, many members of the congregation often needed it to be an exclusive community where they could "come out" in safety. Our presence made them uncomfortable. We were intrusive.

I used to go to Native American things with my friend James who would introduce me by saying, "She's cool. She's not a Wannabe." It was fascinating and I learned a lot. I loved hearing pow wow drums again. But I was not really invited unless I was with James.

Now we live in the neighborhood "Hermosa" and, except for a few Polish families who have lived here for 30 years and more, everyone else is pretty much Latino. Charley teaches in a school that is traditionally Puerto Rican and I have been teaching children to play Puerto Rican Cuatro for the last 4 years. We are trying to learn Spanish.

But we are not Puerto Ricans. We are not Native Americans, we are not gay, we are not Japanese and we are not Black. (see photo).

I spend a lot of my time at Esperanza Community Services. (see link at left) I'm a board member there. But I do not have cognitive challenges or at least not many.

I am not a Wannabe. I don't want to be anyone but myself. But I think two things.

First, it is really important for people to get together as exclusive communities from time to time. The world is a horribly unjust place and our society (like many societies) does terrible things to people who are different. Like Denzel Washington speaking as Malcom X said, it is important for people to learn to love themselves, love other people who are like them and then love the people who are different. That's not a direct quote, it's sort of what he said. I get that. I really do. As a white person, there are things I can do to help, but I can't really become anything other than who I am.

Each of us needs to spend time learning to love ourselves and coming to terms with the unique crimes, responsibilities and gifts of "my people".

Second, it is even more important for people to spend time with people who are different. If we don't appreciate the value of people who are different we are in danger of becoming intolerant and perpetuating injustice. We are all one race. I really believe that. We have different colors of eyes and hair and skin, but we are all the same. We have different opinions and ways of behaving and abilities, but we are all the same. We have different genders and orientations and likes and dislikes, but we are all the same. We need to find that out by exploring other options. We don't need to change to do that, we just need to learn to appreciate the depth that variety gives to life.

I think this is the single biggest issue we face in the world today.

And here's the good news, it can begin with something as simple as a potluck.

Truth or Propaganda?

I got e-mail from someone I am not sure I know. She basically sent it to everyone in her address book. It starts out something like “I’m not trying to change anyone’s mind, but I think everyone ought to read the following. It’s written by a very intelligent man who isn’t a name-caller and doesn’t use scare tactics or anything. He just lists some facts that we all ought to consider.”

Now I’m not going to tell you anything about the issue involved because that’s not the point. Suffice it to say that it was regarding an issue that is hotly debated in our society today. I’m not going to tell you whether the attachment was from a conservative or a liberal because it doesn’t matter. It wasn’t the position that bothered me as much as the irresponsible manner in which he presented his opinions and the fact that someone out there actually thought it was intelligent, well reasoned and not a scare tactic or name calling.

Okay, honestly, it was a position I happen to oppose. But I don’t like it when people I agree with use these same tactics. I just notice them more when someone with whom I disagree uses them.

First of all, it was very large, bold type. Anyone who is visually screaming is not calm or reasoned.

Secondly, there wasn’t a single fact in the whole article. It was mostly polemic and opinion dressed as fact. He said things like if we take this course of action we will be just like people in country X. “God Forbid”. Okay, I don’t actually know much about the situation in country X and what I do know is all good. So I’m not exactly sure what horror he is asking God to Forbid. I’ve got a hunch that many of his readers also don’t know. But he sounds like he knows and he says “God Forbid.” This is a scare tactic.

He then goes on to rip to shreds the spokesperson for the issue he is opposing. He uses opinion dressed as fact over and over. He says this person is the kind of person who says what you want to hear but then does the opposite. This sounds like a fact, but it isn’t. It is slander unless he backs it up with some actual fact. He doesn’t actually call the spokesperson a back-stabber. I guess that’s what my correspondent meant when she said he isn’t a name-caller. But the implication is clear. Then he goes on to advise us to watch what he does rather than what he says. This is pretty good advice and sounds like something a father would say. So it tends to give credence to the unsupported nastiness that preceded it. But that is not the same as giving facts to support these claims.

I could go on, but you get the idea. If you don’t, try reading the rules for submitting an article to Wikipedia. There is a very good example of what good, honest, factual writing should be like.

So I shot her back two e-mails I recently received on the same issue. One was a real article on the issue with real facts written by someone who has really studied the issue. The other was a thoughtful opinion written by a man who is truly concerned for the welfare of humanity. It was conciliatory and embracing and written in normal type. I didn’t really think about why I sent them. Upon reflection, I think my real agenda was to show her what facts and opinion without scare tactics and name calling look like.

But she shot back an e-mail saying that she is educated and informed and I need to look into the issue more. Well, probably she’s right. But I’m not going to allow myself to be educated and informed by nasty people, so I asked her to remove me from her address book and she did.

I don’t mean to say that she is nasty. As I said, I don’t actually know who this woman is. It sounds like she is a nice person. But we both obviously think the other person is kind of dumb and misled and we neither of us want to hear what the other has to say.

Is this the core of what is disturbing me? I’m a nice person. If two nice women can’t find a common ground for discussing things they disagree on, what hope is there for the world? Or am I just annoyed that someone who doesn’t understand the difference between fact and opinion and cannot recognize not very subtle propaganda has my e-mail address?

Jonah and the Whale

For some reason, several people have spoken to me lately about this Bill Maher movie on religion. Seems goofy to me. I mean, who cares what he thinks? He's cranky! But I did just waste half an hour trying to figure out what I actually think about Jonah and the Whale. I haven't thought about him since I was a kid! So I haven't even seen the movie and it's making me think. That's never a bad thing, is it?

So here's what I came up with:
"There's more in heaven and earth than are dreamt of in your philosophy, Horatio." Maybe it could have happened. But I don't really care! It isn't relevant. I don't think it matters whether or not there was a Jonah, let alone whether or not there was a whale!

Myth often brings us truth more profoundly than fact.

So the point of that story is not the whale. The point of the story is... well what IS the point?

More often than not, control is an illusion and safety a gift.

If God is trying to speak to you, it is better to listen than to run.

In this world, the answer to the question, "why" is usually silence.

My Take on Sara Palin

As the mother of a son with profound disabilities, I was initially thrilled to hear a woman say she, as a fellow mother with a child with disabilities, would be my advocate in Washington. The world needs people like us in power. There would be less war and more compassion. I am a firm believer in all mothers who work. Mothers and fathers of children with disabilities have already made a huge difference in the world. They have not only fought long and hard to make things better for their children and for the rest of the population of people with disabilities, they have worked to make this a more just and humane world for all of us.

But the next day I saw a picture of her with her baby on a magazine cover and started to have doubts. This child is an infant! Governor Palin has more experience in Foreign Policy than she has as the mother of a child with disabilities. Her foreign policy experience is based on trade negotiations with her two closest neighbors, Canada and Russia. And she's been doing that for several months longer than she has been the mother of a child with Down's Syndrome!

I would be a lot happier if this child were older and I knew this family had successfully faced the challenges that are clearly on the horizon for them.

My concern is more than "Walk the Walk before you Talk the Talk." The first three years of being a parent of a child with disabilities are hell. Parents and siblings have to come to terms with the profound way in which the core of their lives will change. There is a deep grieving process that must occur if the family is going to come to a place of acceptance and move forward into a very different future successfully. There are an endless stream of questions that must be answered, doctors and physical therapists and other specialists to be consulted. Children with Down's Syndrome often have medical issues that need to be addressed in the first few years. There is also the problem of dealing with the confusing issues of aid. How much financial assistance will the family require and is it available? What kind of in-home assistance will be needed for the extra care required? There is a seemingly endless stream of helpful people who suddenly think
they have the right to invade your private life whether you have invited them in or not.

It sounds like Gov. Palin has a very supportive husband who will have to become the primary caregiver and advocate for their child. But even though I took on that role for our son, I would have been lost if I hadn't had my husband close by to support me and co-parent. I can't imagine how Mr. Palin will manage if his partner is on the other side of the continent!

There is rage, confusion, sorrow and guilt to be faced and every day seems to bring a new insurmountable problem. Many marriages do not survive this initial period. Many careers are lost simply because the stress from home is too great. Someone who has already dealt successfully with this process might very well be transformed into a person who could change the world.

There are many women I would like to see in Washington. I think, after tackling the difficult journey of becoming the mother of a child with disabilities, Sara Palin might someday become one of them. But right now, I think it is really too bad she didn't blink.