Our Journey Continues

Our journey continues. I am surprised I have not Blogged in so long. It seems like every time I have thought about putting some thoughts down, I am either to emotional to do so or not emotional enough to feel the need to do so.

I need to get back here regularly. It could/should be a great outlet. Once a week or so? I find that the only time I can really concentrate is during work. Don't need to be doing it then. When I am home I am living it and don't feel the energy to do it then. Today, Thanksgiving eve, we are not doing squat here at the office. I am poking around on facebook and thought I would say hello.

My December resolution is to release some feelings and thoughts here. I will be back. BTW, I am in the midst of The Da Vinci Code. I am enjoying this book.

Later

Book List - BBC 100

Had a friend post a BBC list of books ... suggesting that most people have not read more than 6 ... thought I might read a few more of these than I have and I needed a place to store the list ... so here it is.

1 Pride and Prejudice - Jane Austen
2 The Lord of the Rings - JRR Tolkien
3 Jane Eyre - Charlotte Bronte
4 Harry Potter series - JK Rowling
5 To Kill a Mockingbird - Harper Lee
6 The Bible
7 Wuthering Heights - Emily Bronte
8 Nineteen Eighty Four - George Orwell
9 His Dark Materials - Philip Pullman
10 Great Expectations - Charles Dickens
11 Little Women - Louisa M Alcott
12 Tess of the D’Urbervilles - Thomas Hardy
13 Catch 22 - Joseph Heller
14 Complete Works of Shakespeare
15 Rebecca - Daphne Du Maurier
16 The Hobbit - JRR Tolkien
17 Birdsong - Sebastian Faulk
18 Catcher in the Rye - JD Salinger
19 The Time Traveler’s Wife - Audrey Niffenegger
20 Middlemarch - George Eliot
21 Gone With The Wind - Margaret Mitchell
22 The Great Gatsby - F Scott Fitzgerald
24 War and Peace - Leo Tolstoy
25 The Hitch Hiker’s Guide to the Galaxy - Douglas Adams
27 Crime and Punishment - Fyodor Dostoyevsky
28 Grapes of Wrath - John Steinbeck
29 Alice in Wonderland - Lewis Carroll
30 The Wind in the Willows - Kenneth Grahame
31 Anna Karenina - Leo Tolstoy
32 David Copperfield - Charles Dickens
33 Chronicles of Narnia - CS Lewis
34 Emma -Jane Austen
35 Persuasion - Jane Austen
36 The Lion, The Witch and the Wardrobe - CS Lewis
37 The Kite Runner - Khaled Hosseini
38 Captain Corelli’s Mandolin - Louis De Bernieres
39 Memoirs of a Geisha - Arthur Golden
40 Winnie the Pooh - A.A. Milne
41 Animal Farm - George Orwell
42 The Da Vinci Code - Dan Brown
43 One Hundred Years of Solitude - Gabriel Garcia Marquez
44 A Prayer for Owen Meaney - John Irving
45 The Woman in White - Wilkie Collins
46 Anne of Green Gables - LM Montgomery
47 Far From The Madding Crowd - Thomas Hardy
48 The Handmaid’s Tale - Margaret Atwood
49 Lord of the Flies - William Golding
50 Atonement - Ian McEwan
51 Life of Pi - Yann Martel
52 Dune - Frank Herbert
53 Cold Comfort Farm - Stella Gibbons
54 Sense and Sensibility - Jane Austen
55 A Suitable Boy - Vikram Seth
56 The Shadow of the Wind - Carlos Ruiz Zafon
57 A Tale Of Two Cities - Charles Dickens
58 Brave New World - Aldous Huxley
59 The Curious Incident of the Dog in the Night-time - Mark Haddon
60 Love In The Time Of Cholera - Gabriel Garcia Marquez
61 Of Mice and Men - John Steinbeck
62 Lolita - Vladimir Nabokov
63 The Secret History - Donna Tartt
64 The Lovely Bones - Alice Sebold
65 Count of Monte Cristo - Alexandre Dumas
66 On The Road - Jack Kerouac
67 Jude the Obscure - Thomas Hardy
68 Bridget Jones’s Diary - Helen Fielding
69 Midnight’s Children - Salman Rushdie
70 Moby Dick - Herman Melville
71 Oliver Twist - Charles Dickens
72 Dracula - Bram Stoker
73 The Secret Garden - Frances Hodgson Burnett
74 Notes From A Small Island - Bill Bryson
75 Ulysses - James Joyce
76 The Inferno - Dante
77 Swallows and Amazons - Arthur Ransome
78 Germinal - Emile Zola
79 Vanity Fair - William Makepeace Thackeray
80 Possession - AS Byatt
81 A Christmas Carol - Charles Dickens
82 Cloud Atlas - David Mitchell
83 The Color Purple - Alice Walker
84 The Remains of the Day - Kazuo Ishiguro
85 Madame Bovary - Gustave Flaubert
86 A Fine Balance - Rohinton Mistry
87 Charlotte’s Web - E.B. White
88 The Five People You Meet In Heaven - Mitch Albom
89 Adventures of Sherlock Holmes - Sir Arthur Conan Doyle
90 The Faraway Tree Collection - Enid Blyton
91 Heart of Darkness - Joseph Conrad
92 The Little Prince - Antoine De Saint-Exupery
93 The Wasp Factory - Iain Banks
94 Watership Down - Richard Adams
95 A Confederacy of Dunces - John Kennedy Toole (reading this one right now)
96 A Town Like Alice - Nevil Shute
97 The Three Musketeers - Alexandre Dumas
98 Hamlet - William Shakespeare
99 Charlie and the Chocolate Factory - Roald Dahl
100 Les Miserables - Victor Hugo

An affliction desperately seeking acceptance/Tick-Tock

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 ...

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.

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!