We parents of children with autism have to become our own types of comedians. I've made a few jokes to non-autism parents and found even more humor in their mixed reactions...it's totally not intentional to make you squirm with one of my off-color remarks, I swear!! So thank you to those of you who are able to chuckle along with me during these times. If I don't make jokes, well, then I've lost even more of myself than I already have.
And so you will understand why I found it really freaking funny that on Monday, hours after writing my post where I inaccurately told you that M had not defecated in his pants in two years and then even knocked on some wood so as to not tempt the gods of poo to swarm down on me. In terms of the inaccuracy of my statement, I had forgotten a particularly awful, in-pants poo last summer when we did a little home test to see if M could tolerate larger amounts of gluten. The answer was a very foamy and stinky, 'hell, no.' In-home experiments aside, however, M had not done that in quite some time. Until, of course, I went and freaking bragged about him not doing it. Why, oh why, did I have to go and do that?
I was lucky to have some me time Monday night where I met a hometown friend also living in the Bay Area for an amazing dinner. When I opened the door after returning home, I was hit with the stench of a thousand poos wafting from my bathroom around the corner. There, the other half was washing M off in the shower as a really disgusting pair of jammy pants lay before me on the floor. (He's never been the best at multitasking, that one) So before I could even get out of my cute sweater and boots that I rarely get to wear anymore, I was in poo-cleanup-mode and off to the laundry room. We got through it. We always do...
And then the next night, we decided on the spur of the moment to join a friend and her son at the local sushi joint. We haven't been doing quite as many dinners out as we once did with M's new found disdain for all things public, but we wanted to give it a go since the boys love sushi. Fortunately, we sat in one of those tables with mats on the floor...or else the other restaurant patrons would have been regaled with a show of gushing pee flowing to the floor from M's chair.
But since he was already on the floor and didn't give two hoots about being soaking wet...and because we'd just ordered our sake and beer...we just shrugged our shoulders and went on with dinner the best we could. We have to get past these sorts of hiccups...we can no longer be slaves to all things M. That sounds harsh and selfish, and trust me it does not apply to all situations and we most certainly always put M's well-being first and foremost; but because he was still happy and not concerned, we had to be the same. We were having a lovely time after all, and dammit, we deserve those too :)
And don't worry...I made sure to get some paper towels and some hand sanitizer to properly clean the tatami mat he sat on. I haven't lost all of my good manners...yet.
Happy New Year to all of you! May 2009 suck it along with most of the rest of the decade. And 2010...I am putting alot of faith in you, so don't let me down now, okay?
Thursday, December 31, 2009
Monday, December 28, 2009
Christmas
We decided to take a last-minute trip to Tahoe for the holiday. We found a beautiful house that had all the comforts of home; minus the tree, of course. B was amazed at the snow which stood two feet deep on all parts of the property. He liked it until it went inside his ill-equipped rain boots, soaking both pairs of socks he wore and making him done, done, done with the snow. RIGHT.THEN!
I usually love renting homes in beautiful places like this, but for some reason I just could not get myself into the groove of this one, no matter how lovely and comfortable it was. I couldn't relax. I didn't sleep well. I didn't sit and read my book as planned. It was as though three days came and went in a flash that left me only with the rushed feeling of having to pack up the car and come home to mounds and mounds of laundry. I'm not quite sure what my deal was, but I am happy that at least B keeps saying he had a great time at the 'vacation house.'
M has been a bit tough this past week, and I am certain that played the largest part in my apathy toward our getaway. He has been physically hurting us several to many times a day. The other half received three cuts on his face during those three days, and I am marked with tiny fingernail-shaped scabs on my hands and wrists. He has become a master of using his nails to pinch and hurt...the same nails that scratch on walls and won't allow themselves to be cut more than two at one sitting. So needless to say, they are jagged and can really hurt. But the cuts really don't hurt more than our feelings do. How can your own child lash out at you continuously like that? Doesn't he love us? Well, the answer is, of course he does. We realize that he is beyond frustrated at not being able to communicate his needs or how he is feeling and it's human nature to lash out at those you are closest to. But nonetheless, when I see the clenched jaw and hear the.noise I can't help but flinch and try to run away. It is also human nature to not want to be hurt by someone, even if that someone is your beloved six-year-old child.
On the plus side, however, we were really pleased with how much he is trying to talk to us since school break began. You can really tell he is making desperate attempts to find words to tell us what he wants. Another plus that at first seemed like a negative was that we believe he was really and truly excited about the prospect of Santa Claus visiting us and leaving presents. He has been having great difficulty calming his body to go to sleep lately, but once he finally does he is a heavy sleeper who will sleep until 9 am if allowed. On Christmas Eve we had an even more difficult than usual time getting him to bed, and once he finally did he was then awake and wandering at 4:30 am, and then up for good at 7 am. I think he knew what was up and that made me feel a bit reassured.
I also am coming to the conclusion that M is suffering from gut pain. His poor belly is so distended and on days when he seems to be more irritable than normal, his belly can be almost rock-hard in spots. Remember when I mentioned PANDAS and the strep titer? Well, we ran a whole slew of tests and found that his strep titers were actually normal. This was surprising since he very clearly responds well to antibiotics. The doctor was hesitant to prescribe more of them, but felt we needed to do another trial to see if we got another good response. We just completed two weeks and though the tantrums and aggression were not as under control as they were in November, his teachers definitely reported that he was more 'on.' Another interesting thing to note was that when not on antibiotics, he was/is having potty accidents. It is incredibly frustrating. Fortunately for us, he has not defecated in his pants in over two years (knocking on wood) and only urinated. But despite having us put him on the potty over and over, he'll just pee his pants and sit in it as though he does not even notice or care. It's bizarre.
The other test we ran also showed concern with his gut. M has been supplemented with vitamins like zinc, magnesium, calcium, etc. for two years. Oddly, these were all the things that were out of range, low, on the blood tests. He is also quite low on iron, which we just began supplementing yesterday. What does this tell us? It tells us that for some reason he is not absorbing nutrients properly. There are theories about children with autism having a condition called 'autistic enterocolitis.' This term was coined by the controversial Dr. Andrew Wakefield of Thoughtful House where M was seen until we recently decided to find a local biomedical doctor. There are many people who are in disagreement about this conditions existence. I, however, have met way too many people who have children on the spectrum with similar digestive problems to dismiss this as a very real possibility. So I have contacted Thoughtful House to begin the process of seeing Dr. Arthur Krigsman who is considered the best pediatric gastroenterologist in the autism field. I have no idea when we will get back to Austin to see Dr. Krigsman, but I am hopeful that he will find something that is treatable to help get M back on track.
My other plan of attack is to once and for all build up my kahunas to finally pull M out of this awful school. I just canNOT let the teacher saying to me 'Maybe this is just who M is' go and I realize that these people are only continuing to further damage my child. Might sound extreme, but I fully believe that they are. Once I figure out the legalities of it all (do I have to register as a homeschooler, etc.) I will withdraw him. I am very hopeful my experiment will prove beneficial.
This was an extremely rambling post, and for those of you who stuck with it, thanks!
Lots on my mind, I suppose, and I just needed to spew it forth here :)
I usually love renting homes in beautiful places like this, but for some reason I just could not get myself into the groove of this one, no matter how lovely and comfortable it was. I couldn't relax. I didn't sleep well. I didn't sit and read my book as planned. It was as though three days came and went in a flash that left me only with the rushed feeling of having to pack up the car and come home to mounds and mounds of laundry. I'm not quite sure what my deal was, but I am happy that at least B keeps saying he had a great time at the 'vacation house.'
M has been a bit tough this past week, and I am certain that played the largest part in my apathy toward our getaway. He has been physically hurting us several to many times a day. The other half received three cuts on his face during those three days, and I am marked with tiny fingernail-shaped scabs on my hands and wrists. He has become a master of using his nails to pinch and hurt...the same nails that scratch on walls and won't allow themselves to be cut more than two at one sitting. So needless to say, they are jagged and can really hurt. But the cuts really don't hurt more than our feelings do. How can your own child lash out at you continuously like that? Doesn't he love us? Well, the answer is, of course he does. We realize that he is beyond frustrated at not being able to communicate his needs or how he is feeling and it's human nature to lash out at those you are closest to. But nonetheless, when I see the clenched jaw and hear the.noise I can't help but flinch and try to run away. It is also human nature to not want to be hurt by someone, even if that someone is your beloved six-year-old child.
On the plus side, however, we were really pleased with how much he is trying to talk to us since school break began. You can really tell he is making desperate attempts to find words to tell us what he wants. Another plus that at first seemed like a negative was that we believe he was really and truly excited about the prospect of Santa Claus visiting us and leaving presents. He has been having great difficulty calming his body to go to sleep lately, but once he finally does he is a heavy sleeper who will sleep until 9 am if allowed. On Christmas Eve we had an even more difficult than usual time getting him to bed, and once he finally did he was then awake and wandering at 4:30 am, and then up for good at 7 am. I think he knew what was up and that made me feel a bit reassured.
I also am coming to the conclusion that M is suffering from gut pain. His poor belly is so distended and on days when he seems to be more irritable than normal, his belly can be almost rock-hard in spots. Remember when I mentioned PANDAS and the strep titer? Well, we ran a whole slew of tests and found that his strep titers were actually normal. This was surprising since he very clearly responds well to antibiotics. The doctor was hesitant to prescribe more of them, but felt we needed to do another trial to see if we got another good response. We just completed two weeks and though the tantrums and aggression were not as under control as they were in November, his teachers definitely reported that he was more 'on.' Another interesting thing to note was that when not on antibiotics, he was/is having potty accidents. It is incredibly frustrating. Fortunately for us, he has not defecated in his pants in over two years (knocking on wood) and only urinated. But despite having us put him on the potty over and over, he'll just pee his pants and sit in it as though he does not even notice or care. It's bizarre.
The other test we ran also showed concern with his gut. M has been supplemented with vitamins like zinc, magnesium, calcium, etc. for two years. Oddly, these were all the things that were out of range, low, on the blood tests. He is also quite low on iron, which we just began supplementing yesterday. What does this tell us? It tells us that for some reason he is not absorbing nutrients properly. There are theories about children with autism having a condition called 'autistic enterocolitis.' This term was coined by the controversial Dr. Andrew Wakefield of Thoughtful House where M was seen until we recently decided to find a local biomedical doctor. There are many people who are in disagreement about this conditions existence. I, however, have met way too many people who have children on the spectrum with similar digestive problems to dismiss this as a very real possibility. So I have contacted Thoughtful House to begin the process of seeing Dr. Arthur Krigsman who is considered the best pediatric gastroenterologist in the autism field. I have no idea when we will get back to Austin to see Dr. Krigsman, but I am hopeful that he will find something that is treatable to help get M back on track.
My other plan of attack is to once and for all build up my kahunas to finally pull M out of this awful school. I just canNOT let the teacher saying to me 'Maybe this is just who M is' go and I realize that these people are only continuing to further damage my child. Might sound extreme, but I fully believe that they are. Once I figure out the legalities of it all (do I have to register as a homeschooler, etc.) I will withdraw him. I am very hopeful my experiment will prove beneficial.
This was an extremely rambling post, and for those of you who stuck with it, thanks!
Lots on my mind, I suppose, and I just needed to spew it forth here :)
Wednesday, December 16, 2009
Heartfelt
When the rain is blowing in your face
And the whole world is on your case
I could offer you a warm embrace
To make you feel my love
When the evening shadows and the stars appear
And there is no one there to dry your tears
I could hold you for a million years
To make you feel my love
I know you haven't made your mind up yet
But I would never do you wrong
I've known it from the moment that we met
No doubt in my mind where you belong
I'd go hungry, I'd go black and blue
I'd go crawling down the avenue
There ain't nothing that I wouldn't do
To make you feel my love
The storms are raging on the rollin' sea
Down on the highway of regret
The winds of change are blowing wild and free
But you ain't seen nothing like me yet
I could make you happy, make your dreams come true
I know there's nothing that I wouldn't do
Go to the ends of the earth for you
To make you feel my love
To make you feel my love
-Written by Bob Dylan
Saturday, December 12, 2009
Turning Tides
I keep telling people that 2010 is going to be my year. After telling 2008 to 'suck it,' and knowing that I'll be doing the same come New Year's Eve 2009, I'm probably proclaiming 2010 as the Year of Deb partly because I believe it has to be, and partly because I'm not quite sure what I'll do if it isn't!
My parents recently visited for a.whole.week. over the Thanksgiving holiday. I love my parents very much and feel close to them in many ways, but they are not the people I feel most comfortable showing the raw and real truth of our day to day living. There aren't many people we can comfortably show that to, but with my parents it's even more difficult. Part of this is because I end up getting a little stressed because the other half isn't the biggest fan of my parents; a thing that I understand in some ways, but don't at all understand in others...I mean, they're MY parents for frack's sake. If you love me, please tolerate them, no?
But the other part is that my parents have this unspoken air of superiority in their handling of all matters, be they financial, family, etc. They don't have to spell out these feelings to know that they are there. My mother has said to me (and you'll probably gasp a bit when you read this) 'You don't need to have another child. You've got a lot to handle already.' They said this about my sister way back when as well, and though I wholeheartedly agree, I now realize that that is just nobody's place to say that but mine or my sister's, or anyone else's. And though she said it from a place of love, the delivery just never seems to settle right with me.
So when both my parents expressed several times (again, from their own type of loving place) that 'we have our hands really full,' or other comments like how difficult it is to dress M and how they don't know how I do it, etc. I started to realize what all of 'this' must look like to them, and how I don't really want other people to see the real 'this' anymore. I don't mean that I'm closing my open book attitude on my life. I am not a rose colored glasses person, so why artificially paint something to appear that way? But there are just some people in my life that I think I'd rather not have believing that things are so horrible...because they aren't. Not really anyway.
So this is why I feel the tide is turning...or at least that it must. In trying to soften the things my parents believe they saw to be so difficult, I told my Mom that I was really starting to learn that you can't be handed a situation like this and not try to find out the meaning of it all; to figure out what your purpose is along this journey. So this is what I am trying to do now...and I'm trying to find out the best way to achieve this purpose. I don't want to live my life as a victim of circumstance. I think I have done that for the past couple of years without really realizing that, yes, this did happen to me, but it happens for M times 100 each and every moment of his life.
I don't type all this out because I believe I'm going to all of a sudden not have any stress in my life. I don't believe that I won't continue to lose my shit just a tiny bit each time during the day that M yells at me, digs his nails into my arms, and goes limp-legged making my back ache just a little bit more than it already did. No, these are the truths of my existence that I cannot hide.
So be gentle with me...don't be too hard on me when I slip up and am not positive. Tides don't turn overnight, you know. But knowing that they need to is at least one step in the right direction. Hopefully my steps will be large, comfortable strides rather than tentative baby ones. One can hope, right?
My parents recently visited for a.whole.week. over the Thanksgiving holiday. I love my parents very much and feel close to them in many ways, but they are not the people I feel most comfortable showing the raw and real truth of our day to day living. There aren't many people we can comfortably show that to, but with my parents it's even more difficult. Part of this is because I end up getting a little stressed because the other half isn't the biggest fan of my parents; a thing that I understand in some ways, but don't at all understand in others...I mean, they're MY parents for frack's sake. If you love me, please tolerate them, no?
But the other part is that my parents have this unspoken air of superiority in their handling of all matters, be they financial, family, etc. They don't have to spell out these feelings to know that they are there. My mother has said to me (and you'll probably gasp a bit when you read this) 'You don't need to have another child. You've got a lot to handle already.' They said this about my sister way back when as well, and though I wholeheartedly agree, I now realize that that is just nobody's place to say that but mine or my sister's, or anyone else's. And though she said it from a place of love, the delivery just never seems to settle right with me.
So when both my parents expressed several times (again, from their own type of loving place) that 'we have our hands really full,' or other comments like how difficult it is to dress M and how they don't know how I do it, etc. I started to realize what all of 'this' must look like to them, and how I don't really want other people to see the real 'this' anymore. I don't mean that I'm closing my open book attitude on my life. I am not a rose colored glasses person, so why artificially paint something to appear that way? But there are just some people in my life that I think I'd rather not have believing that things are so horrible...because they aren't. Not really anyway.
So this is why I feel the tide is turning...or at least that it must. In trying to soften the things my parents believe they saw to be so difficult, I told my Mom that I was really starting to learn that you can't be handed a situation like this and not try to find out the meaning of it all; to figure out what your purpose is along this journey. So this is what I am trying to do now...and I'm trying to find out the best way to achieve this purpose. I don't want to live my life as a victim of circumstance. I think I have done that for the past couple of years without really realizing that, yes, this did happen to me, but it happens for M times 100 each and every moment of his life.
I don't type all this out because I believe I'm going to all of a sudden not have any stress in my life. I don't believe that I won't continue to lose my shit just a tiny bit each time during the day that M yells at me, digs his nails into my arms, and goes limp-legged making my back ache just a little bit more than it already did. No, these are the truths of my existence that I cannot hide.
So be gentle with me...don't be too hard on me when I slip up and am not positive. Tides don't turn overnight, you know. But knowing that they need to is at least one step in the right direction. Hopefully my steps will be large, comfortable strides rather than tentative baby ones. One can hope, right?
Wednesday, December 9, 2009
Autism Prevalence
Thoughtful House (in Austin, TX) just released updated data for 2008-2009. You can access graphs for all of the states and outlying areas here.
This data is based upon reports of students receiving special education services due to a diagnosis of autism.
Please keep in mind that these shocking increases do not include students who are home schooled, in private placements, too high functioning to receive special education services, or not receiving the services they need at all.
The most significant note was 1 in 67 eight-year-olds receiving special ed. services for autism in the state of Minnesota. I have heard that Minnesota is a leader in terms of providing appropriate services for our kids, so if you consider that even this number is likely underrepresented, well, we should all be completely appalled.
I cannot tell you how many families I know in the state of California whose children seem to clearly be impaired by autism and yet are told that they do not qualify for services under that label. (or any other label for that matter, unfortunately) So consider just how high the numbers might really be in your state.
This data is based upon reports of students receiving special education services due to a diagnosis of autism.
Please keep in mind that these shocking increases do not include students who are home schooled, in private placements, too high functioning to receive special education services, or not receiving the services they need at all.
The most significant note was 1 in 67 eight-year-olds receiving special ed. services for autism in the state of Minnesota. I have heard that Minnesota is a leader in terms of providing appropriate services for our kids, so if you consider that even this number is likely underrepresented, well, we should all be completely appalled.
I cannot tell you how many families I know in the state of California whose children seem to clearly be impaired by autism and yet are told that they do not qualify for services under that label. (or any other label for that matter, unfortunately) So consider just how high the numbers might really be in your state.
Autism - Statistics, Incidence, Prevalence, Rates
I thought this information might be interesting to some of you.
Thoughtful House (in Austin, TX) just released updated data for each state and outlying areas based upon the number of children currently receiving special education services due to a diagnosis of autism. Please keep in mind that these shocking numbers are understated since those who are home schooled, in private schools, too high functioning to receive special education services, or not receiving the appropriate services at all, are not counted.
Sunday, December 6, 2009
Navigating The System
I'm over at Hopeful Parents today. Please stop by and read some of the amazing stories other parents share on this great site!
Saturday, December 5, 2009
A Time To Reflect...
...on things like snot, fevers, regressive toilet training, parents, and of course...turkeys.
Yes, it has been nearly one month since I last posted. Where has the time gone? I have noticed that many of the blogs I follow are also a bit sparse in their posts. Is it just the holiday season that makes us deviate from our norm, or are you all, like me, dealing with back to back...to back...illnesses and various other craptities, (wow, that word didn't get corrected-hmmm?), and haven't had the brain power to come up with sentences that make a lick of sense to anyone but yourself?
The other half traveled for business the better part of three weeks, during which time M, and subsequently I, came down with strep. Yippee. That ailment never seemed to really right itself and turned into a virus-y, cold thing that all four of us got. Just when I thought we were on the mend, my parents came to visit from Texas and my Dad was quite ill with a bad sinus/upper respiratory infection. We spent Thanksgiving morning at the local ER to fix him up.
I had to get Dad better because that weekend the other half and I had 48 hours of respite during which we drove south to Paso Robles and the Justin vineyard & winery. We stayed in a lovely room there where we felt comfortable enough to not do much of anything.
We took an inadvertently off-road drive in the Prius to the fabulous little town of Cambria.
And out of the 160 wineries in this region, we only tasted at two, Treana and Oso Libre. We went back to our little villa and had in-room massages and then promptly put on pjs, ordered pizza, and fell asleep by 10 pm. It wasn't the romantic, reconnecting trip I'd hoped for, but who feels romantic when they can barely hear for the snot filling up their sinus passages? And I brought flannel jammies, so the other half had to know right off the bat it wasn't going to be that kind of vacation. Ha! But it was really and truly an absolute luxury to sit around in those flannel jammies and read a really good book without little people constantly asking for my attention. Just what the doctor ordered, I'd say!
So now we are one week back from our trip and three of us are still (again?) sick. We are running quite the racket on doctor visit and prescription co-pays.
And M had a rough week at school which should have been our biggest clue that he'd end up with a raging fever last night. But we're hanging in there regardless and plan on making an attempt at some Christmas cheer today.
Here's hoping you and yours are surviving the holidays and all of the germs that seem to come with them!
Yes, it has been nearly one month since I last posted. Where has the time gone? I have noticed that many of the blogs I follow are also a bit sparse in their posts. Is it just the holiday season that makes us deviate from our norm, or are you all, like me, dealing with back to back...to back...illnesses and various other craptities, (wow, that word didn't get corrected-hmmm?), and haven't had the brain power to come up with sentences that make a lick of sense to anyone but yourself?
The other half traveled for business the better part of three weeks, during which time M, and subsequently I, came down with strep. Yippee. That ailment never seemed to really right itself and turned into a virus-y, cold thing that all four of us got. Just when I thought we were on the mend, my parents came to visit from Texas and my Dad was quite ill with a bad sinus/upper respiratory infection. We spent Thanksgiving morning at the local ER to fix him up.
I had to get Dad better because that weekend the other half and I had 48 hours of respite during which we drove south to Paso Robles and the Justin vineyard & winery. We stayed in a lovely room there where we felt comfortable enough to not do much of anything.
We took an inadvertently off-road drive in the Prius to the fabulous little town of Cambria.
And out of the 160 wineries in this region, we only tasted at two, Treana and Oso Libre. We went back to our little villa and had in-room massages and then promptly put on pjs, ordered pizza, and fell asleep by 10 pm. It wasn't the romantic, reconnecting trip I'd hoped for, but who feels romantic when they can barely hear for the snot filling up their sinus passages? And I brought flannel jammies, so the other half had to know right off the bat it wasn't going to be that kind of vacation. Ha! But it was really and truly an absolute luxury to sit around in those flannel jammies and read a really good book without little people constantly asking for my attention. Just what the doctor ordered, I'd say!So now we are one week back from our trip and three of us are still (again?) sick. We are running quite the racket on doctor visit and prescription co-pays.
And M had a rough week at school which should have been our biggest clue that he'd end up with a raging fever last night. But we're hanging in there regardless and plan on making an attempt at some Christmas cheer today.
Here's hoping you and yours are surviving the holidays and all of the germs that seem to come with them!
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