I always like a good reminder of things I should say to my kids. It is so easy to forget to do these things from time to time. I particularly need to remember to say these to my typical kids. You can find yourself giving a plethora of encouraging verbage to your autistic child, then easily forget that your 12 and 9 year olds are not really in their 20's like sometimes I treat them. I am typically a "hard-ass" to my kids, but I tell them I love them all the time. I do some of the others, but can always do better. I love my kids. They are fantastic human beings. They will grow up to be better people than me. If that happens, then I will have succeeded as a parent.



19 Things we should say to Children
By Georgy
www.turnbacktogod.com


1. I love you! There is nothing that will make me stop loving you. Nothing you could do or say or think will ever change that.

2. You are amazing! I look at you with wonder! Not just at what you can do, but who you are. There is no one like you. No one!

3. It’s all right to cry. People cry for all kinds of reasons: when they are hurt, sad, glad, or worried; when they are angry, afraid, or lonely. Big people cry too. I do.

4. You’ve made a mistake. That was wrong. People make mistakes. I do. Is it something we can fix? What can we do? It’s all over. You can start fresh. I know you are sorry. I forgive you.

5. You did the right thing. That was scary or hard. Even though it wasn’t easy, you did it. I am proud of you; you should be too.

6. I’m sorry. Forgive me. I made a mistake.

7. You can change your mind. It’s good to decide, but it is also fine to change.

8. What a great idea! You were really thinking! How did you come up with that? Tell me more. Your mind is clever!

9. That was kind. You did something helpful and thoughtful for that person. That must make you feel good inside. Thank you!

10. I have a surprise for you. It’s not your birthday. It’s for no reason at all. Just a surprise, a little one, but a surprise.

11. I can wait. We have time. You don’t have to hurry this time.

12. What would you like to do? It’s your turn to pick. You have great ideas. It’s important to follow your special interests.

13. Tell me about it. I’d like to hear more. And then what happened? I’ll listen.

14. I’m right here. I won’t leave without saying good-bye. I am watching you. I am listening to you.

15. Please and Thank You. These are important words. If I forget to use them, will you remind me?

16. I missed you. I think about you when we are not together!

17. Just try. A little bit. One taste, one step. You might like it. Let’s see. I’ll help you if you need it. I think you can do it.

18. I’ll help you. I heard you call me, here I am. How can I help you? If we both work together, we can get this done. I know you can do it by yourself, but I’m glad to help since you asked.

19. What do you wish for? Even if it’s not yet time for birthday candles and we don’t have a wishbone, it’s still fun to hear about what you wish for, hope for, and dream about.

Autism Blog Post - Babble's tops for 2012

I look forward to mulling through these blogs as time goes by. I admire those parents and those on the spectrum, who can write so eloquently and with such good humor.

Thank you for your wonderful writing abilities. I wish I could put things in words like you do.

http://www.babble.com/baby/baby-development/top-autism-blog-full-list/

RIP - Ms. Flynn

My mother-in-law passed away last night. She was in mid-stages of alzheimers and has had lung/breathing/heart issues for the last few years which have gotten progressively worse. Trips to the hospital went from yearly to biannually to quarterly. she was in the icu twice earlier this year ... I did not think she would come out either time. Due to these last couple of health drops she was moved from her ALF to a nursing care facility. It was the correct thing to do. A month and a half later, she goes to sleep and never wakes up. My wife and daughters did spend time with her for a typical, casual visit a couple of days ago. Glad they did.

It was not unexpected. But it was not expected to be last night, either. Told our kids this morning after breakfast and each of our two girls handled the news as I would expect for their differing personalities. Flynn, as you might expect, did not react (or even pay attention) at all ... until her middle sister cried. As sweet Flynn would typically do, he wanted to console his sister. Pure sweet love and innocence. Was a touching moment for me at his genuineness and pureness.

Took them to school a little late and of course that threw Flynn off schedule. As parents of an ASD kid know - that is often a recipe for failure. His class was practicing for - wait for it - grandparents day tomorrow. gotta love irony. Well Flynn completely fell to pieces. I assumed because of the morning routine being messed up, the kids singing (loudly and poorly) in the echoing auditorium, being the center of attention (which he hates) and other things. I realized that I needed to get out of the way so the teachers could get him on task.

But ... as i was leaving, the kids started to sing their next song. something along the lines of "today is grandparents day" ... or some such thing ... then it dawned on me! did Flynn really, actually GET what was going on ... did he realize that his Mimi did pass away ... did he understand that his grandmother was not going to be there for "Grandpals" day ... he surprises us from time to time at what he absorbs ... did he absorb the bad news and the reality that he won't have a grandparent there tomorrow?

my heart skipped, lump in my throat ... I will most definitely love on my son tonight with extra care. Just in case he is struggling to express his sadness from the mind of a slightly verbal 6 y/o with autism...

"borrowed" information and bloggersphere travels

i have killed some work time today ... in this economy who needs to be looking for productive new projects to work on! pffff ... lets just spend today being counterproductive and going broke!

naw, as the below post indicates, i have bounced around some blogs today. i have also posted on a handful of other folks blogs. i have never done that until today. it was fun and i enjoyed seeing some others' thoughts. i grabbed this cnn article from one ...

http://www.cnn.com/2010/HEALTH/05/19/autism.divorce.rates/index.html

i was glad to read that about 6 months ago and was glad to read it again today. the business of the blogger i got that from can be found here:

http://www.nationalautismresources.com/

thought i would pass it along. looks interesting and will spend a little time poking around on it later ... because now i need to get back to work. my employees will be disappointed if i dont send some bills out (so i can pay them) and get some new work in (so i can pay them)!

good grief - cancer

i just fumbled around the blogger.com world. i kept hitting the next blog button. i swear out of the 20 or so sites i visited, 14-15 were regarding cancer. it may be the afflicted, the spouse, the kids or friends, but it was cancer, cancer, cancer.

Edit: I think they have used key words to have the "next blog" be those that relate to your own ... ala google/facebook (isnt blogger.com a google thing?)

my heart goes out to all of those who have dealt with the world altering, earth shaking issue of cancer. so much difficulty. so much adversity. so many people showing fighting spirit and looking for silver linings. lots of soul searching and positivity amongst the challanges. who has not been affected by cancer? i personally have had both grandfathers die of cancer, father-in-law passed away ... however many, many more who are cancer survivors - sister-in-law, uncle and lord knows how many friends and acquaintances ...

funny enough 3 blogs were about surfing ...
one was scary and i did not even stop to see what the subject was ...
one was an attorneys blog about ... being an attorney and recommended legal books to read - i passed on this site also.

i may have to do this 20 blog blitzkrieg again. that was heartwarming and interesting ...

"For the chance that maybe we'll find better days!"

Poignant song considering the events of the last couple of days. Has been a very reflective time in our house. The demons, the obstacles, the difficulties ... they seem to pile up and pile up. Compartmentalization only helps so much. How healthy is it to try and simply be ignorant to the hardships. ignore them. hope they go away. let them bounce off - but they never trully bounce off. they always make some dents. at some point all of the dents become injuries. you have to address the injuries. slowly the family options are being reduced. at some point decisions have to be made and reality will break through the ignorance and indifference. decisions are harder than they used to be. it used to be picking between good options was difficult. now the options are not good and they really are more like leftovers instead of options. but regardless, time marches on and reality will park itself at my footsteps. family and autism are the priorities. self is not. what do i do...

"Better Days" by the Goo Goo Dolls.

Lyrics:
And you asked me what I want this year
and I try to make this kind and clear
just a chance that maybe we'll find better days
'cause I don't need boxes wrapped in strings
and designer love and empty things
just a chance that maybe we'll find better days

So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again

I need some place simple where we could live
and something only you can give
and that's faith and trust and peace while we're alive
and the one poor child who saved this world
and there's ten million more who probably could
if we all just stopped and said a prayer for them

So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again

I wish everyone was loved tonight
and somehow stop this endless fight
just a chance that maybe we'll find better days

So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again
'cause tonight's the night the world begins again

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 ...