Innocence Lost - The Siblings

I "stole" the following blog from a better writer than me. How poignant this mom is that she can put this level of emotion into words. I have added "a diary of a mom" in my links on the right. She is worth reading and following.

Innocence lost – The Siblings
March 22, 2012


Their innocence lost, they had to be braver and more generous than children should have to be. ~ Eustacia Cutler, speaking of her other children – Temple’s siblings.

My heart is breaking.
It’s too much tonight.
These kids – these amazing little people – carry the weight of the world on their far too fragile shoulders.
They live in a world that we all lament is too slow to evolve. Yet they have sped past it at lightening speed – self-actualizing like a trick of time-lapse photography – Behold! Before our very eyes the caterpillar, the chrysalis, the butterfly – all in the blink of an eye because they live a life that demands that they have wings.
But sometimes the weight – the weight of this fast tracked evolution is just too damned much.
These babies are pushed into a wisdom so far beyond their years. We demand from them – and they continually surprise us with – a spiritual maturity and depth of understanding that leaves their peers standing in the dust on the playground. And while we celebrate their maturity – An old soul! A tiny sage! Oh, how grown-up you are! – we’ve handed them the double-edged sword of insight – that which makes the plodding emotional development of their peers a frustrating and terribly unfunny joke.
An understanding of human nature that forces their eyes to see in stark relief the cruelty that passes for interaction between children their own age. An integrity that forces them to stand against injustice where they find it – and don’t they find it everywhere? And don’t we? We, the people who have walked this path with their siblings, who blinked and winced against the blinding light that came upon us in a flash and forced us to see – to really, truly, painfully see – how we treat one another.
And as hard as it was to come to terms with our new lives under that light, we came armed with the accumulated tools of a lifetime. With some measure – albeit dramatically varied among us, but nonetheless at least some collected measure – of finesse with which to face the cruelty that we could no longer not see. And along with the finesse, the luxury of choosing with whom we will engage and when we will, Gambler style, know when to walk away.
But our kids – these siblings who see so much, understand so much, who have hearts eight times the size of their fear – they have no tools. They stand unarmed before a world of children that would chew them up and spit them out by lunch-time if it might get them closer to the cool kids’ table at lunch.
Fifth-grade girls try on different personalities like they’re changing their clothes. But our kids, our beautiful, wise, precious kids see through the flimsy facade. And they search and they search for any shred of integrity because they’ve learned – just as we have – that what’s REAL is all that matters. And they lean into friendships, diving deep, fumbling to find what lies beneath the facade. They give their hearts the only way they know how – in full. And when those hearts are carelessly tossed aside they crumble the only way they know how – completely. Because what we give so too we stand to lose. And practiced as they may be as defender – and no matter the relish or reluctance with which they play the role, they know it by heart – they have no defense left for themselves.
Because they know too much. They know that barbs disguised as jokes aren’t funny. They know that insecurity fashioned into ammunition hurts. They know that careless words leave indelible marks.
And with a sense of right and wrong so deeply entrenched as to be inescapable, they walk out into the world brandishing their pistol at the first sign of unfairness, injustice – their fingers itchy to pull the trigger. But the gun shoots blanks.
And in the middle of it all is the desperate fight to stay under the radar – not to draw attention because by God isn’t it enough that they live under the unbearably unpredictable spotlight of Oh My God This Is So Embarrassing – and yet – and yet! – every bit of their desperate desire for anonymity fights with their even more desperate need for attention. Because we all need attention. And there is never enough to go around.
And they leave the minefield at home and run headlong every day into a landscape dotted with overt and hidden perils. A land, where just as we do, they see it all. Because they, like us, can’t help but see vulnerability. They sniff it out like bloodhounds and attach to it because it’s what they know – and guarding it from danger is the role they play. And because their hearts are stretched so far beyond the boundaries of their precious youth, they feel so deeply the sting of knowing that each and every human being matters and each and every human being feels and thinks and sees and smells and knows what’s being said about and around and above and through them and they know – just as WE know that each and every boy is some other mother’s son and each and every girl is another mother’s daughter – that so too each might be loved by a sibling.
And by God, how would they want someone else to act in their shoes, on their behalf should it be their sibling who is being hurt by careless words and not-so-harmless harmless pranks? And always, always they take the perspective of the other because how often – how often? – do we tell them, show them, demand of them, that they must?
And where are THEY in all of this? Where do THEY live and shine and breathe and say Screw it, I don’t care what you think. Where are they to draw their OWN lines, make their OWN decisions, find, somewhere in a world that feels so far out of their control the ability to chart THEIR OWN course?
Where do they get to stop pleasing and be pleased?
Stop worrying and be worried about?
Stop defending and be defended?
I know they will change the world.
I know that they already are.
But in this moment, it’s too much.
My heart is breaking.
These kids – these amazing little people – carry the weight of the world on their far too fragile shoulders.

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!

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...

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.

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.

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!