Through facebook and the autism speaks page, it had a link to a blog by a mom describing a typical day for her autistic child at school. Her husband taking their son to a typical school event like every school. It is a sad state of affairs in our society, what we as parents of autistic children can so clearly see, intolerance by unknowing /indifferent adults. This childs classmates were being cruel and the teacher was sure it was because of what they learn and emulate of their parents.
We have had a particularly hard week or two. The DAN! doctor has us doing another round of diflucan along with some enzymes and fiber. We are playing ring around the rosey trying to get all of the meds, supplements and vitamins in him at the "appropriately" effective time of the day. You can mix this with that we are told ... you have to wait at least 30 minutes to eat after this then a certain amount of time after that ... our son is only interested in a limited diet so we cant mix his meds with other stuff (thank the Lord that he will take all of his meds, etc... through an oral suringe with minimal resistance otherwise all of this would be impossible).
We are trying the GF/CF diet as best as possible on top of the limited diet and he barely will sniff any of this horrid food. We have determined that there is a reason gluten is used in food ... IT MAKES STUFF TASTE BETTER!!! My wife goes to a TACA meeting last night and proceeds to hear why we should not let our son eat the few things that he will eat, because the natural sugars are bad for his yeast levels. We also hear another dose of why this should not be given the same time as that, etc... etc... etc...
Now, as an engineer, I have a reasonable amount of skepticism. All of the most opinionated stuff comes from moms of autistic children. I know everyone is well intentioned, but like all parents of autistic children come to learn ... what works for you may not work for us. You always have to take things with a grain of salt. However, that being said, there is nowhere to turn. No "credible" traditional professionals know anything. Our pediatrician is a great guy. He is clueless about autism. We have heard things and felt things that make us wonder if our DAN! doctor is all she is cracked up to be. I also did a little research yesterday and she is not an ARI recognized DAN! doc. She may follow all of the protocols to the letter, which she said she does, but the very small amount of baseline/watchdog there is, she does not have to answer to.
I sat there and listened to my wife cry last night after this long meeting of feeling like we still don't know what the hell we are doing. I don't have any good answers for her. I am supposed to be the "Man" of the house who has answers or at the very least is the rock that things can be bounced off of. Steady, steady ... isnt't that what a husband and father is supposed to be. I am at my limit. My wife and I had our 16th anniversary last week. One of our daughters is acting out. The other is drawing in some. There is no one thing that I can point to that is the overriding family challenge, other than autism. I covered in an earlier post all of the life difficulties, those are still the same. But I have finally discovered the largest and scariest black cloud over our family. The ever present tick-tock, tick-tock, tick-tock, tick-tock of autism on our 4 year old son and what the daily "lost" production means to our son's future years from now.
This blanket of burden to find the right med/supplement protocols, the correct foods/diet, the correct therapies, the correct everything to clear some of this fog from our precious son is draining our family and our marriage. Autism sucks. I hear people say that some day later in their families life autism was a blessing to them. I am not going to wax poetic, as if I had the capacity, but excuse me ... autism flat sucks.
I fear for our family. I fear for the future of my son. I fear for my marriage. I have a history of dementia and heart disease in my family. My mother had early onset dementia and guess what ... some studies indicate that is directly hereditary. Am I going to start fading away at 59 like my mom. Hell, that is 20 years from now. Am I going to be worthless to my future 24 year old son??? Will the daily lost time now make him less capable 20 years from now. If so, who is going to care for him??? His sisters, who have an extra weight to carry, already, from now till then.
No one truly understands what it is like to have an ASD child other than the parents of one. The therapists come and go. That is part of what has led me to this rant. One of our ABA therapists quit her job. My wife is getting an uneasy feeling about that establishment and if what they are doing is the correct kind of ABA therapy. All of the therapy costs a bloody fortune and after you drop between $60-$130 an hour on uncovered therapy, when do you determined that it is not the correct place for your child. Drop money on GF/CF foods that turn out to suck to the point of non-description. Meds and supplements that you hear conflicting opinions on.
I am feeling pressure like I have never felt before in my life. I would love to try it all, but there are so few options and so few dollars. When reality and life hit head-on to wants, dreams and desires ... what wins??? Unfortunately we are starting to change over to reality and life hitting head-on with desperation and fear. I am afraid that is a horrifing mix. Only a roll of the dice will determine the outcome.
I have also stated that I am a good moral person and a knowingly struggling christian. These are the days that make me not want to reach out to God for guidance and comfort, but to lash out in anger and seething ... or to question the existance???
Fear, desperation and borderline internal RAGE ... that is a bad combination ... but yet there still exists the tick-tock, tick-tock, tick-tock, Tick-Tock, Tick-Tock, TICK-TOCK ...
Wednesday, April 21, 2010
Thursday, April 8, 2010
DAN! Doc
So, my wife took Flynn to the DAN! Doc today. 2 hour drive, 30 minute wait, 30 minute visit and off to track down the plethora of meds/scripts and supplements. After a small amount of hassle, we got the local Wellness pharmacy to fill the order and should be ready for tomorrow.
That means Diflucan begineth! Which means diarrhea to follow. Happy, Happy, Joy, Joy! Last go round we did 40mg of suspended diflucan orally with a syringe (it is amazing that we cannot get him to eat hardly anything, but he will take any liquid meds in an oral syringe no matter how bad it tastes...including fish oil) We are trying it a little different this time. Wake up in the a.m., enzymes then 30 minutes later diflucan wait at least 30 minutes and then some other crap that my wife remembers and I dont. Supposed to help "heal" the stomach. This is supposedly the souped up version of what we did last time and will do a number on the gut yeast.
I can't possibly tell you how bad I hope this makes a positive impact for our son. He deserves it and his parents need it. Two weeks of that then two weeks of normal ole diflucan then start the florastor probiotic (we will be doing the vsl #3 probiotic the entire time...actually we have not stopped that since we started it in December).
We will be saying hopeful prayers that the biomedical efforts will really take hold this time and supplement the diet stuff we have been doing in earnest this last few months. We have a few additional diet changes to make ... and he aint gonna like it. gotta reduce sugar intake which means reduce/eliminate apple juice ... guess what ... that is the only thing he will drink other than rice milk. yeast feeds off sugar and if we are going to get the yeast, we have to reduce the sugar. All of his "powder" meds go in his juice. What to do now??? How about powder meds in about 2-3 Tsp of juice and oral syringe??? May actually try it that way.
Wish us luck.
That means Diflucan begineth! Which means diarrhea to follow. Happy, Happy, Joy, Joy! Last go round we did 40mg of suspended diflucan orally with a syringe (it is amazing that we cannot get him to eat hardly anything, but he will take any liquid meds in an oral syringe no matter how bad it tastes...including fish oil) We are trying it a little different this time. Wake up in the a.m., enzymes then 30 minutes later diflucan wait at least 30 minutes and then some other crap that my wife remembers and I dont. Supposed to help "heal" the stomach. This is supposedly the souped up version of what we did last time and will do a number on the gut yeast.
I can't possibly tell you how bad I hope this makes a positive impact for our son. He deserves it and his parents need it. Two weeks of that then two weeks of normal ole diflucan then start the florastor probiotic (we will be doing the vsl #3 probiotic the entire time...actually we have not stopped that since we started it in December).
We will be saying hopeful prayers that the biomedical efforts will really take hold this time and supplement the diet stuff we have been doing in earnest this last few months. We have a few additional diet changes to make ... and he aint gonna like it. gotta reduce sugar intake which means reduce/eliminate apple juice ... guess what ... that is the only thing he will drink other than rice milk. yeast feeds off sugar and if we are going to get the yeast, we have to reduce the sugar. All of his "powder" meds go in his juice. What to do now??? How about powder meds in about 2-3 Tsp of juice and oral syringe??? May actually try it that way.
Wish us luck.
Wednesday, April 7, 2010
Hello, Anybody there???
I can't believe I have gone this long since my last post. The countless number of times that I have thought about posting something new ... It has been a bunch. Actually the reason I have not posted anything really has more to do with having too much going on, too much to blog about, not the opposite.
Everytime I think about it, I am simply to tired. Sitting here at work late and thought I would take a little Flynn break.
I guess the primary things are that over the last bunch of months we have substantially increased his therapies. He is now going to the special education pre-school 5 days a week, 4 hours a day. Speech Therapy on Mondays, 2 hrs of ABA on Tues/Thurs and we have some great folks at church that shadow him on Wednesday nights and Sunday School (I count that as pseudo-therapy since they are turn taking and working with him one on one with his peers around him).
We have gone to see a DAN! doctor and are working on some biomedical stuff. As a matter of fact my wife takes him to see the doc tomorrow ... that is another story ... well how about now ... We did a round of diflucan at Christmas break for a high yeast level and it seemed to have some slight positive effects. Started a couple of probiotics afterward (We are doing a multivitamin, Cod liver oil for Omega 3's and Zyrtec/singulair, as well). We had some problems with folks that work at the DAN docs office returning phone calls and such ... killed about 3 weeks before we got them to ask the doc the right questions ... really pissed about that. Needless to say the yeast levels came back up high. I suspect we will have to do that all over again. Diflucan in non-potty trained children is not a pretty sight. Oh, yes I forgot to mention, my 4.5 year old son is still not potty trained and still no where close to it. So getting urine samples for the testing was a complete pain in the ass and also another reason it took so long to get another doc appt. We had to have the test results first and therefore have to have the urine sample before that.
You know, I can't keep a coherent thought. We have had these issues since Sept:
Allergies - He loves the outdoors and wants to be out there more than anything. He has developed allergies to virtually everything outside.
Almond Allergy - found out the hard way that he has this severe allergy. Puked everywhere, swelled up and we spent 10 hours at Childrens hospital ER. We now are the proud owners of Epipens.
Started GF/CF diet - started slow at first and have really picked up that effort more. This requires a great deal of effort on my wifes part.
DAN! doctor stuff - which requires being a wanna be chemist, understanding biomedical stuff which no two doctors in the world agree on, recognizing that half this stuff is a best guess and that it worked for someone but may not for your child, realize that there is a grand total of 3 DAN! docs within 4 hours drive from our house. The one we see is 2 hours away. I guess this DAN doc stuff really is an extension of all of the biomedical crap. Did I mention the pain in the ass about getting a urine sample ... also did I mention the non-potty trained child ... yea joys of parenting an autistic child. Sometimes these things you take for granted with your other children really are difficult.
Work - I am just glad we are still in business. All of the above stuff requires bucket loads of money. Work is really, really, really hard right now. I need to spend all of my time at work ... but I can't.
Mother in Law - Her dementia is progressing. That is just a rotten illness and my wife is spending a decent amount of time with her. At least she is in assisted living. That has taken alot of the intense pressure off for big time issues.
Oh yea I have two other kids and a wife - Trying to maintain any symblance of a normal life with the remaining family is crazy hard. Competent baby sitters are hard to come by and the other time sucking issues of life make spending quality time with anyone hard. My two girls are doing well at soccer and seem to have a level head about the way life is going. They are required to do more than they should. I am very proud of both of them. They are angels to their brother. I wish and pray for the best for my wife and I. We are constantly reminded by people and literature/articles/news reports how high the divorce rate is for parents of autistic children. I am not going there without a fight. I love my wife and want to keep it that way!
Seminars (my wife went to see Temple Grandin in Nashville a week ago - said it was fantastic), Autism society meetings, TACA meetings, play dates/parties with other "disabled" kids, movies (Temple Grandin's movie on HBO was awesome), books, magazine articles, TV shows, advertisements, internet articles and all kinds of other stuff to constantly be engulfed in autism. There is so much that is not known and we desperately feel like time is sliping away from us during the crucial pre-school years. We desperately want him to stay close to his peers, but it is not looking promising. I am starting to have thoughts of whether he will ever progress. Gotta keep those bad thoughts outta my head. As a parent, you never feel like you are doing enough, no matter how much you are doing.
Ramble, Ramble, Ramble ... Maybe if I dont go so many months between posts I can keep each post concise. How about I give that a whirl! Hope to see you soon!
Everytime I think about it, I am simply to tired. Sitting here at work late and thought I would take a little Flynn break.
I guess the primary things are that over the last bunch of months we have substantially increased his therapies. He is now going to the special education pre-school 5 days a week, 4 hours a day. Speech Therapy on Mondays, 2 hrs of ABA on Tues/Thurs and we have some great folks at church that shadow him on Wednesday nights and Sunday School (I count that as pseudo-therapy since they are turn taking and working with him one on one with his peers around him).
We have gone to see a DAN! doctor and are working on some biomedical stuff. As a matter of fact my wife takes him to see the doc tomorrow ... that is another story ... well how about now ... We did a round of diflucan at Christmas break for a high yeast level and it seemed to have some slight positive effects. Started a couple of probiotics afterward (We are doing a multivitamin, Cod liver oil for Omega 3's and Zyrtec/singulair, as well). We had some problems with folks that work at the DAN docs office returning phone calls and such ... killed about 3 weeks before we got them to ask the doc the right questions ... really pissed about that. Needless to say the yeast levels came back up high. I suspect we will have to do that all over again. Diflucan in non-potty trained children is not a pretty sight. Oh, yes I forgot to mention, my 4.5 year old son is still not potty trained and still no where close to it. So getting urine samples for the testing was a complete pain in the ass and also another reason it took so long to get another doc appt. We had to have the test results first and therefore have to have the urine sample before that.
You know, I can't keep a coherent thought. We have had these issues since Sept:
Allergies - He loves the outdoors and wants to be out there more than anything. He has developed allergies to virtually everything outside.
Almond Allergy - found out the hard way that he has this severe allergy. Puked everywhere, swelled up and we spent 10 hours at Childrens hospital ER. We now are the proud owners of Epipens.
Started GF/CF diet - started slow at first and have really picked up that effort more. This requires a great deal of effort on my wifes part.
DAN! doctor stuff - which requires being a wanna be chemist, understanding biomedical stuff which no two doctors in the world agree on, recognizing that half this stuff is a best guess and that it worked for someone but may not for your child, realize that there is a grand total of 3 DAN! docs within 4 hours drive from our house. The one we see is 2 hours away. I guess this DAN doc stuff really is an extension of all of the biomedical crap. Did I mention the pain in the ass about getting a urine sample ... also did I mention the non-potty trained child ... yea joys of parenting an autistic child. Sometimes these things you take for granted with your other children really are difficult.
Work - I am just glad we are still in business. All of the above stuff requires bucket loads of money. Work is really, really, really hard right now. I need to spend all of my time at work ... but I can't.
Mother in Law - Her dementia is progressing. That is just a rotten illness and my wife is spending a decent amount of time with her. At least she is in assisted living. That has taken alot of the intense pressure off for big time issues.
Oh yea I have two other kids and a wife - Trying to maintain any symblance of a normal life with the remaining family is crazy hard. Competent baby sitters are hard to come by and the other time sucking issues of life make spending quality time with anyone hard. My two girls are doing well at soccer and seem to have a level head about the way life is going. They are required to do more than they should. I am very proud of both of them. They are angels to their brother. I wish and pray for the best for my wife and I. We are constantly reminded by people and literature/articles/news reports how high the divorce rate is for parents of autistic children. I am not going there without a fight. I love my wife and want to keep it that way!
Seminars (my wife went to see Temple Grandin in Nashville a week ago - said it was fantastic), Autism society meetings, TACA meetings, play dates/parties with other "disabled" kids, movies (Temple Grandin's movie on HBO was awesome), books, magazine articles, TV shows, advertisements, internet articles and all kinds of other stuff to constantly be engulfed in autism. There is so much that is not known and we desperately feel like time is sliping away from us during the crucial pre-school years. We desperately want him to stay close to his peers, but it is not looking promising. I am starting to have thoughts of whether he will ever progress. Gotta keep those bad thoughts outta my head. As a parent, you never feel like you are doing enough, no matter how much you are doing.
Ramble, Ramble, Ramble ... Maybe if I dont go so many months between posts I can keep each post concise. How about I give that a whirl! Hope to see you soon!
Wednesday, September 23, 2009
Saw "The Horse Boy"
After a minor amount of research, I discovered that "The Horse Boy" was only presently scheduled in two places near me.
In Atlanta starting November 20. I thought about arranging a trip with my wife to the N. Georgia mountains and watching the movie on our way through ATL. However, when I contacted the movie theater to try and confirm they were going to have the movie, they said I needed to check on November 17 ... that would be the first day to confirm. Well, it is hard to arrange a get away to the mountains, which revolved around seeing this movie, if I was not 100% they would be showing it. Therefore, plan B ...
It was showing in Chattanoga starting last Friday the 18th till tomorrow. One week only! I desperately wanted my wife and I to make the 2 hour trek together and watch the movie. I thought 4 hours in the car together and nice dinner out, in addition to the movie, would be a nice way to spends some quality time together. Well, we could not go the 18th-20th and finding a weekday babysitter on short notice to stay 7-8 hours with three children is not exactly an easy thing to do.
Well, I was sitting in the office yesterday and finally decided that this movie may never show anywhere close by (it might show on pbs or something, but I did not want to count on that) and if I did not go yesterday, then I may never get a chance to see. I got tickets on fandango, jumped in the car and off I went.
I realized during my drive that I have not had a couple of hours to myself like that in a long time. I used to use alone time in the car as a way to escape and think. Yesterday was a nice little mental getaway.
Well I will have to be honest. I thought the movie would be fairly well attended, even at the 5:30 showing on a random Tuesday. It was me and a grandparent aged couple. That was it. I was surprised. I sure hope this movie was well attended during the other days and times. I thoroughly enjoyed this movie. Well, actually it is a documentary. It was not quite as emotional as I thought it might be. I was actually a little nervous about watching it and how I would feel. This whole autism adventure is crazy. As a fairly unemotional and level headed person, I have been awfully emotional and unlevel headed.
more later...
In Atlanta starting November 20. I thought about arranging a trip with my wife to the N. Georgia mountains and watching the movie on our way through ATL. However, when I contacted the movie theater to try and confirm they were going to have the movie, they said I needed to check on November 17 ... that would be the first day to confirm. Well, it is hard to arrange a get away to the mountains, which revolved around seeing this movie, if I was not 100% they would be showing it. Therefore, plan B ...
It was showing in Chattanoga starting last Friday the 18th till tomorrow. One week only! I desperately wanted my wife and I to make the 2 hour trek together and watch the movie. I thought 4 hours in the car together and nice dinner out, in addition to the movie, would be a nice way to spends some quality time together. Well, we could not go the 18th-20th and finding a weekday babysitter on short notice to stay 7-8 hours with three children is not exactly an easy thing to do.
Well, I was sitting in the office yesterday and finally decided that this movie may never show anywhere close by (it might show on pbs or something, but I did not want to count on that) and if I did not go yesterday, then I may never get a chance to see. I got tickets on fandango, jumped in the car and off I went.
I realized during my drive that I have not had a couple of hours to myself like that in a long time. I used to use alone time in the car as a way to escape and think. Yesterday was a nice little mental getaway.
Well I will have to be honest. I thought the movie would be fairly well attended, even at the 5:30 showing on a random Tuesday. It was me and a grandparent aged couple. That was it. I was surprised. I sure hope this movie was well attended during the other days and times. I thoroughly enjoyed this movie. Well, actually it is a documentary. It was not quite as emotional as I thought it might be. I was actually a little nervous about watching it and how I would feel. This whole autism adventure is crazy. As a fairly unemotional and level headed person, I have been awfully emotional and unlevel headed.
more later...
Monday, September 14, 2009
Moved to the verge of Tears
It has been quite a while since I found the combination of emotion, energy, time and topic to visit this blog. Mostly, I have been unable to find the energy. I assure you I have had the emotions and the topics. I have begun to trully understand the life I am now leading as the father of an autistic son. The number of things there are to do ... well ... are endless.
Trying to be a father, husband, business owner, employee, active christian, friend, community participant and simply trying to be a bread winner and rock for my family is taking its daily toll. There are endless books I should read, therapy sessions I should arrange, health insurance fights I should start, time I should spend with my oldest daughter, time I should spend with my middle daughter, time I should spend with my wife, time I should spend for myself, time I should spend with God and ... Oh Yea ... time I should spend with the one who needs my time the most ... Flynn!
I just finished reading a book today that I started about a week and a half ago. Like most good books I read, I usually kill myself the last 20% of the book and finish it in one day. Tonight was the conclusion to The Horse Boy by Rupert Isaacson. Spend money on this book. It was given to us by Tracy. Tracy bought 20 copies to give to people just like us.
Like the cover of the book states it is about "A Father's Quest to Heal His Son." I never cry. I did not cry reading this book. But, I welled up 20 or 30 times today completing this book. I am exhausted. There is a documentary that was made of their family journey to Mongolia to see where healing and horses come together at one place. The beginning of horses ... and where Shaman live. This man made me feel inadequate and empowered at the same time. I want to see this movie. The scenes he described in the book make me want to see it if for no other reason. The power behind the story makes it compelling to see. I wish and pray for this kind of future for my family, my son.
The website is www.horseboymovie.com.
Trying to be a father, husband, business owner, employee, active christian, friend, community participant and simply trying to be a bread winner and rock for my family is taking its daily toll. There are endless books I should read, therapy sessions I should arrange, health insurance fights I should start, time I should spend with my oldest daughter, time I should spend with my middle daughter, time I should spend with my wife, time I should spend for myself, time I should spend with God and ... Oh Yea ... time I should spend with the one who needs my time the most ... Flynn!
I just finished reading a book today that I started about a week and a half ago. Like most good books I read, I usually kill myself the last 20% of the book and finish it in one day. Tonight was the conclusion to The Horse Boy by Rupert Isaacson. Spend money on this book. It was given to us by Tracy. Tracy bought 20 copies to give to people just like us.
Like the cover of the book states it is about "A Father's Quest to Heal His Son." I never cry. I did not cry reading this book. But, I welled up 20 or 30 times today completing this book. I am exhausted. There is a documentary that was made of their family journey to Mongolia to see where healing and horses come together at one place. The beginning of horses ... and where Shaman live. This man made me feel inadequate and empowered at the same time. I want to see this movie. The scenes he described in the book make me want to see it if for no other reason. The power behind the story makes it compelling to see. I wish and pray for this kind of future for my family, my son.
The website is www.horseboymovie.com.
Wednesday, August 5, 2009
Keep your @!?#% scorn to yourself!!!
Deep Breath ... Exhale ...
Deep Breath ... Exhale ...
Deep Breath ... Exhale ...
That is basically what I was thinking about telling my wife. I did not dare say it out loud. After knowing her 20 years, I have learned when to say "helpful" things. Today was NOT one of them.
She was doing some things for her ailing mother and lugging our three kids with her. The last two days have been difficult from outside influences and therefore Flynn has not even come close to being on a good routine/schedule. Autism loves routine. He has also been a little under the weather. Two days of bad routine and illness does not bode well for productivity.
In a nut shell, after taking the kids to places they do not perform well in, they ended up at the grocery store to gather things for my mother-in-law. Grocery stores and big box retail stores are hell on earth for Flynn. He acted out and acted out loudly at the check out lane.
Needless to say, when a helpful high school age bag girl got down in Flynn's personal space and did the goofy sounding "how are you doing" and "how old are you" and "my you seem to be in a bad mood today" and ... you get the picture. Then she did the worst thing possible, she tried to push the shopping cart ... Very Bad Move! He exploded and after this last and by far the loudest scream of the shopping trip the entire store did the "movie-like" head turn and stare. Jaws dropped open, people mumbled their condescension and good old fashioned scorn covered their faces.
This is when my wife did what made me very proud of her. She defended her brood. She looked in three different directions and said to each group in a loud, stern, commanding and mostly motherly protective tone ... "He has autism ... Are we supposed to wear a T-shirt around for you people" and something to the effect of "mind your business".
This is very unlike us. Normally we would be apologetic and attempt not to disturb other peoples' space and peace. But this time, the peoples' undue facial scorn was rude and insensitive to our family, not the other way around. So sometimes people need to Mind Their Own Damn Business and keep your unsolicited attitudes to your own F@CKING selves. We are trying to raise an ASD child and buy F@CKING groceries. Solve your own damn problems you have before you look down your nose at us!!!!!!!! Did you ever think that maybe there is more to what meets the F@CKING eye!!!!!! We might just have issues we are dealing with that you don't know a F@CKING thing about.
Whew! I was proud of my wife today. She left with tears in her eyes and trying to stay composed with her head up. We have two other children who are watching. Some days, autism can be a blessing in disguise. Today was not one of them. Some days are simply hard. I wish people would be more understanding nowadays. They might be the ones in a similar position in the future.
Tuesday, August 4, 2009
Friends, Family and Causes
A few things have happened in the past couple of days that have reminded me that life is a precious gift that needs to be loved and lived.
I had a veterans foundation group call asking for a donation. I told the nice lady, like I tell anyone who calls with a worthy cause, that I do my giving through my church. I know my church and the worthy efforts they support. I feel comfortable with how they serve the community ... local and outside our area. I also had a high school friend of mine die yesterday from a multi-year and difficult battle with breast cancer ... she leaves behind a loving family and a young daughter.
It got me to thinking about causes that I have personally been touched by and that are worthy of support.
- I have a son with autism. Autism awareness and prevention are my focus of my time and money right now.
- I have had a brother fight for our country, been in serious fire fights and had friends of his die. Our military and our veterans are worthy.
- I have had a grandfather and father-in-law die of lung cancer. Cancer prevention and cures need to be found.
- I have a sister-in-law who is battling breast cancer and of course my friend who passed yesterday. Breast cancer awareness and prevention need to be backed.
- I have had my mom die from dementia. Hers was early onset that started when she was 60. She passed last year at the age of 65. Both of my grandmothers died of Alzheimer related/caused illnesses. My mother-in-law is suffering from the early stages of Alzheimers. All forms of dementia that effect so many of our seniors needs a cure.
- I have a brother who's daughter is suffering from a bipolar disorder. Mental health care requires someone to champion their needs.
- I have had numerous, numerous, numerous friends and their families dealing with differing bouts of dementia, cancer, autism and other mental disorders. They all deserve help, support and appropriate legislation.
- I have learned of a young child my sons age who is suffering from a disease that I have never heard of and I could not even pronounce. That child's parents are having to deal with a rare illness that no average person knows anything about. Who is leading a cause on behalf of that family?????
There are so many worthy and needing children, families, individuals and loved ones that need help and support. Where do all of these people go? How can everyone get the help they need? Who helps the ones who have no one looking out for them or helps those people who are dealing with illness that are outside the mainstream of the publics consiousness?
I don't know. I don't know. I don't know.
All I know is that I will do what I can for those loved ones in the sphere that I can positively impact with my love, prayers, actions, research and determination. I may not have the pocket book to do all the worthwhile things that I would like ... but I can do what I can do!
Monday, July 27, 2009
Church Success
Yesterday was one of the new found success stories for our family. Taking our two daughters to church service in the past was an effort in learning, teaching and patience. Just another opportunity as a parent to teach our children our values and beliefs. Mostly the values part. You know ... sit still, be quiet, don't yell, get up, don't throw, don't run away from me, why can't you sit here for a few minutes, do you want a spanking, whats the matter with you, I am taking you back to the store for a better behaved child and what have I done to deserve this! (I hope you get the humor in the last few). It really did not have much to do about God and the bible at their early years as it did about behavior and preparing them for later years, when they could be open to being fulfilled spirtually in church.
Well, then along comes child number three. Flynn, autism and sitting still in church were a daunting combination. Therefore we had not tried yet. We just had not given it a whirl. Well Saturday we decided we would give it a try. It is the summer and typically a little more laid back. As parents of an autistic child we have learned to be prepared, well thought out, contingency plans set, nimble with whatever situation was to unfold and most of all we are trying to add extra doses of patience and understanding. We felt as though we were ready. We hoped he would be ready.
We trotted off to church. I dropped off the family at the front door to make sure we got the prime seats in the back of the church by the exit doors. I got inside as quickly as I could to find them sitting in, although not ideal exit seats, serviceable seats in case of a needed quick and loud exit. After a few adjustments to the sitting order ... I wanted it to be daughter-parent-flynn-parent-daughter. That way we had him sandwiched, the girls seperated from each other to reduce the additional amount of parenting that typically comes from them sitting next to one another and the bonus of having the girls on the outside in case they needed to be dispatched for some chore or requirement (i.e. going and getting the collection basket from the elderly lady who is the next person sitting from us a mere 20 seats away).
Deep breath, take in the families in front of and behind us ... This was the really funny part. You know everyone typically sits in just about the same seats every Sunday at church and are used to who sits around them. All of a sudden here is this random family of 5 with 3 young kids plopping right down in the middle of their Sunday morning familiarity. Oh well, they better get used to it. I am good about being early to church ... My wife said she got some looks. We apparantly took "their seats".
We go to a pretty traditional and fairly wealthy Methodist Church that started a contemporary worship service a handful of years ago. We recently finished a multi-year building campaign that included a very nice multipurpose contemporary worship building. It is used for speakers, concerts and the like. It has multi media screens, stage lighting and a rocking sound system. The rocking sound system was our area of concern. Autism and loud music of any kind do not always play nice together. Not to mention the hundreds of strangers that Flynn was surrounded by. Anywho, the service starts...
The first two songs crank up and are loud like normal. Flynn seems a little uneasy at first. Trying to figure it all out and take it in. I decide I am going to hold him so he can see the contemporary worship band and singers (probably total of 16-18 on stage). Of course I am sitting under one of the "can" spot lights and took the opportunity to wear a sports coat to church on a July Sunday whilst holding my 45 pound 3.5 year old. I was drenched within 2 minutes. I started to bounce him a little with the music and sing, but realize this may be just a little to much sensory input and decide I will just hold him still and kiss him on the cheek every so often. This seems to have the desired effect and he seems to settle in a little by the end of the second song. (I on the other hand am about to pass out from dehydration). Songs over and announcements begin.
He sits fairly still through the announcements and we get to some prayer time. Then begins the seat kicking. We pull his shoes off so the kicking is not quite as loud and intense. I also am able to put my leg where it covers one of his feet, so the kicking is reduced to one bare foot. This also seems to take the fun out of it and so he soons stops. Prayer time ... somewhere along the line the folks in sunday school and the church mothers day out taught him to pray with his hands clasped. When he does this, he is remarkably still. So he sits quietly, flanked by his parents and we all five sit still through an eternity of praying with our hands clasped, heads "mostly" bowed and quiet. Actually still and quiet. It was very cool to watch our son sit like that, no matter how short a period of time it was. Then greeting time ...
We eased into greeting the neighbors around us (no scowls from the elderly church goers we displaced) and then offertory, where another couple of songs were sung while we are all seated. This was when another very cool moment happened. Flynn loves the song "Grace flows down". Being speech impaired, the words don't roll off his tongue very easily, but this is one of his top five favorite songs. To my ears, he sang this song just as wonderfully as any person has ever sung this song. It took everything I could do to keep from crying. That was one of the sweetest moments I have had in a while. That cute child, intensely watching the band and singing a song about God's grace ... makes me well up remembering it.
The preacher then read scripture and started his sermon. Now it has been about 45 minutes since church started and here we sit. Still a family of 5 enjoying church together. No major incidents and zero corrective parenting required thus far. I never in my life would have "thunk" it possible. He started to get a little squirmy and for the sake of preserving what had been a superb family memory up to that moment, it was time to take him out of church while it was still a precious time. He waved to his momma and said bye-bye loud enough for the few rows around us to hear, which I thought was perfect and also precious. I lead my little barefoot mini-me out the back of the church receiving smiles from everyone who looked at him (I wouldn't lie to you, but my son is one seriously cute kid. You will have to give all credit to his beautiful momma).
That was just the start to what turned out to be a wonderful day in the T Earl family memory banks. I wrote elsewhere that our reference points to joyful moments has changed in the last few months. I assure you, Flynn's first day at church was one of the highlights of this year. It goes to show that when you look for the good things in life and roll with the punches, you will find them. My son made yesterday a good day!!!
Well, then along comes child number three. Flynn, autism and sitting still in church were a daunting combination. Therefore we had not tried yet. We just had not given it a whirl. Well Saturday we decided we would give it a try. It is the summer and typically a little more laid back. As parents of an autistic child we have learned to be prepared, well thought out, contingency plans set, nimble with whatever situation was to unfold and most of all we are trying to add extra doses of patience and understanding. We felt as though we were ready. We hoped he would be ready.
We trotted off to church. I dropped off the family at the front door to make sure we got the prime seats in the back of the church by the exit doors. I got inside as quickly as I could to find them sitting in, although not ideal exit seats, serviceable seats in case of a needed quick and loud exit. After a few adjustments to the sitting order ... I wanted it to be daughter-parent-flynn-parent-daughter. That way we had him sandwiched, the girls seperated from each other to reduce the additional amount of parenting that typically comes from them sitting next to one another and the bonus of having the girls on the outside in case they needed to be dispatched for some chore or requirement (i.e. going and getting the collection basket from the elderly lady who is the next person sitting from us a mere 20 seats away).
Deep breath, take in the families in front of and behind us ... This was the really funny part. You know everyone typically sits in just about the same seats every Sunday at church and are used to who sits around them. All of a sudden here is this random family of 5 with 3 young kids plopping right down in the middle of their Sunday morning familiarity. Oh well, they better get used to it. I am good about being early to church ... My wife said she got some looks. We apparantly took "their seats".
We go to a pretty traditional and fairly wealthy Methodist Church that started a contemporary worship service a handful of years ago. We recently finished a multi-year building campaign that included a very nice multipurpose contemporary worship building. It is used for speakers, concerts and the like. It has multi media screens, stage lighting and a rocking sound system. The rocking sound system was our area of concern. Autism and loud music of any kind do not always play nice together. Not to mention the hundreds of strangers that Flynn was surrounded by. Anywho, the service starts...
The first two songs crank up and are loud like normal. Flynn seems a little uneasy at first. Trying to figure it all out and take it in. I decide I am going to hold him so he can see the contemporary worship band and singers (probably total of 16-18 on stage). Of course I am sitting under one of the "can" spot lights and took the opportunity to wear a sports coat to church on a July Sunday whilst holding my 45 pound 3.5 year old. I was drenched within 2 minutes. I started to bounce him a little with the music and sing, but realize this may be just a little to much sensory input and decide I will just hold him still and kiss him on the cheek every so often. This seems to have the desired effect and he seems to settle in a little by the end of the second song. (I on the other hand am about to pass out from dehydration). Songs over and announcements begin.
He sits fairly still through the announcements and we get to some prayer time. Then begins the seat kicking. We pull his shoes off so the kicking is not quite as loud and intense. I also am able to put my leg where it covers one of his feet, so the kicking is reduced to one bare foot. This also seems to take the fun out of it and so he soons stops. Prayer time ... somewhere along the line the folks in sunday school and the church mothers day out taught him to pray with his hands clasped. When he does this, he is remarkably still. So he sits quietly, flanked by his parents and we all five sit still through an eternity of praying with our hands clasped, heads "mostly" bowed and quiet. Actually still and quiet. It was very cool to watch our son sit like that, no matter how short a period of time it was. Then greeting time ...
We eased into greeting the neighbors around us (no scowls from the elderly church goers we displaced) and then offertory, where another couple of songs were sung while we are all seated. This was when another very cool moment happened. Flynn loves the song "Grace flows down". Being speech impaired, the words don't roll off his tongue very easily, but this is one of his top five favorite songs. To my ears, he sang this song just as wonderfully as any person has ever sung this song. It took everything I could do to keep from crying. That was one of the sweetest moments I have had in a while. That cute child, intensely watching the band and singing a song about God's grace ... makes me well up remembering it.
The preacher then read scripture and started his sermon. Now it has been about 45 minutes since church started and here we sit. Still a family of 5 enjoying church together. No major incidents and zero corrective parenting required thus far. I never in my life would have "thunk" it possible. He started to get a little squirmy and for the sake of preserving what had been a superb family memory up to that moment, it was time to take him out of church while it was still a precious time. He waved to his momma and said bye-bye loud enough for the few rows around us to hear, which I thought was perfect and also precious. I lead my little barefoot mini-me out the back of the church receiving smiles from everyone who looked at him (I wouldn't lie to you, but my son is one seriously cute kid. You will have to give all credit to his beautiful momma).
That was just the start to what turned out to be a wonderful day in the T Earl family memory banks. I wrote elsewhere that our reference points to joyful moments has changed in the last few months. I assure you, Flynn's first day at church was one of the highlights of this year. It goes to show that when you look for the good things in life and roll with the punches, you will find them. My son made yesterday a good day!!!
Friday, July 17, 2009
Attitudes and Latitudes
Did not want to smudge the previous lovey dovey post with this drivel...
Who knows what life will hold. I am generally an optimistic person. That is a trait that I did not have until I met my wife in college. I have maintained that through today. But dang, I am ready for some good things to happen. Even the little things seem to suck right now, particularly work related.
I have historically been a very laid back person. I grew up at the beach in northwest Florida. Most beach folk will look upon that with scorn, but every other person/place east of the Mississippi River love the beaches of northwest Florida. The beach was my babysitter...
My mom would pile us up and take us out to the beach for many, many, many hours. I am the youngest of three very outgoing boys. She would take her foldout lounge chair, a readers digest book (for those of you old enough to remember what that even is) and her beach umbrella; she would lather us down in No. 15 No-Ad sunscreen (again for those of you who remember what that is) plop down our cardboard box of GI Joes (for those of you who ....) and let us go to town for those many hours. We never stopped until it was time for lunch. Who remembers when a good lunch consisted of an RC Cola, bologna sandwich/vienna sausage, individual bag of chips and the coup de grace ... Moon Pies!!!! Raise your hand if you want to be in that scene, on that sugar white sand beach with the surf roaring, under that umbrella eating that meal...I thought so...
Man, I love the beach! I love the beach lifestyle. One day when the time is right, I will be there again.
Shark fishing from the shore at night, redfishing from shore at Pensacola Pass, Blue Angels twice a year, scalloping, riding my bike to the grass flats at shoreline and fishing for specs with my favorite jig, fishing with a gill net with the family, fishing from the bridges for white trout and croaker (that was never about the food, it was always about spending time with Dad), throwing the cast net for mullet, skiing behind the behemoth of a boat we had, backyard fish frys and hush puppies with family friends after fishing all day, walks on the beach at sunset, 25 mile bike rides on the beach as the sun rises, sleeping in at the beach condo after a night out with buddies and listening to the roar of the surf, oysters on the half shell, beach bonfires (when you could still do that), simple nights out with friends talking about life and laying there looking up at the stars, reggae and acoustic sets at the outdoor local bars, draft beer and bushwackers and long island ice teas, jumping off "the levels" under the bridge, nothing like the 4th of July fireworks in a beach military town, the electicity in the air on a beach saturday night, Mayokis, Fiesta of Five Flags, Mardi Gras, backyard pool nights laying still in the water and watching the bats dive down for a skim across the top of the water, and my favorite two memories ... laying on the pier at shoreline with Joe watching shooting stars at 3 a.m. because we were the only ones without curfew and proposing to my wife on a cold March day with the roar of the surf outside the open 5th floor condo windows ...
Man that is a life well lived. I am not well traveled. I have been a few places. But I try to saturate myself in the qualities of life whereever I happen to be. Shooting stars, rainbows, sunrises and sunsets...beauty and the joy of the world are around you all the time, you just have to look, feel, smell and sense it ... soak it in ...
Took a facebook quiz that said if I was a Jimmy Buffett song I would be Tin Cup Chalice...
"I wanna go back to the island
Where the shrimp boats tie up to the pilin'
Gimme oysters and beer
For dinner every day of the year
And I'll feel fine, I'll feel fine
I wanna be there
Wanna go back down and lie beside the sea there
With a tin cup for a chalice, fill it up with good red wine
And I'm chewin' on a honeysuckle vine"
Exerpt of a letter to my wonderful wife
I probably won't share too much like this, but I happened across a letter I wrote to my wife a couple of years ago and it still means as much to me today as it did then, maybe moreso. Obviously I could not share most of the letter (actually proud of myself for its contents, they were heart felt) ... lots of personal stuff just for us. I love my wife. we have known each other over 19 years. We have our difficulties just like anyone, but nights like tonight with her and our three kids just reaffirm how special our relationship is. Like I mentioned before, we are having external difficulties, but we as a pair seem to be riding the wave O.K. I wish our family did not have to face the challenges, but we are and we will succeed. When you love your wife and children, then success is the only option. I have always succeeded when the important things were on the line and nothing is more important than my family. No time period in my life is as impactful as what we face now. I have had some "wing-dingers" in the past that I will eventually get around to, but right now seems to be right up there in the challenge department.
Anywho...here is the snippet from my letter to my wife...
"...we can do anything the world has in front of us when we do it together. You are my rock and my heart. You have given me my children who are my soul and our future. You hear people jokingly talk about the meaning of life. I believe everyone has a meaning that is unique to them. I think I know what mine is. It is to raise our children with you and for them to have a long, joyful life and for them to have a happy and interactive relationship with their grandchildren. That may seem silly on the surface, however, to me the underlying story that goes with this is powerful. If our children have a long, joyful life then we will have had a long and joyful life together. If they have a happy relationship with their grandchildren, then it will mean we did also, because they will have learned that from us. It will mean our relationship together was joyful and fulfilled. Joyful and fulfilled, I believe are two powerful words. I want that with you and I know we will have that together, as will our children and grandchildren. It is a life that makes me well up inside to think I am going to have it with you. Our lives together really have just begun and our future is amazing."
Shall I pat myself on the back again. Just kidding. There is that word "joy" again. I wrote this in 2005 after a four week span when my father-in-law had died from cancer, my wifes grandmother died in her 90's, my wife just found out she was pregnant with our third child and we had just culminated a difficult previous 12 months by placing my mom in an assisted living facility with early-onset dementia (She was 62 at the time with symptoms starting at 60). I really was in a crazy place then. Seemed to calm down a little after that until the last 6-9 months or so and has gotten nutty again.
I thought I would share.
Anywho...here is the snippet from my letter to my wife...
"...we can do anything the world has in front of us when we do it together. You are my rock and my heart. You have given me my children who are my soul and our future. You hear people jokingly talk about the meaning of life. I believe everyone has a meaning that is unique to them. I think I know what mine is. It is to raise our children with you and for them to have a long, joyful life and for them to have a happy and interactive relationship with their grandchildren. That may seem silly on the surface, however, to me the underlying story that goes with this is powerful. If our children have a long, joyful life then we will have had a long and joyful life together. If they have a happy relationship with their grandchildren, then it will mean we did also, because they will have learned that from us. It will mean our relationship together was joyful and fulfilled. Joyful and fulfilled, I believe are two powerful words. I want that with you and I know we will have that together, as will our children and grandchildren. It is a life that makes me well up inside to think I am going to have it with you. Our lives together really have just begun and our future is amazing."
Shall I pat myself on the back again. Just kidding. There is that word "joy" again. I wrote this in 2005 after a four week span when my father-in-law had died from cancer, my wifes grandmother died in her 90's, my wife just found out she was pregnant with our third child and we had just culminated a difficult previous 12 months by placing my mom in an assisted living facility with early-onset dementia (She was 62 at the time with symptoms starting at 60). I really was in a crazy place then. Seemed to calm down a little after that until the last 6-9 months or so and has gotten nutty again.
I thought I would share.
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