The R word. Still?

In an age where it seems everyone can "choose" to be offended at the drop of a hat I hesitate to write this post but it needs to be said so I will.  ENOUGH WITH THE R WORD ALREADY!  In the last few months (and twice this week) I have encountered people who are not ready to give up that derogatory and highly offensive slang that we hurled at each other back in the 80's like it was nothing.  I am talking about the word retarded or worse - retard.
This is not about being politially correct although it is justified in that sense too.  Its about being humane.  Its about growing up and its about not trying to cut down someone else by referring to them as a person afflicted with a mental condition or any condition.   The real problem is that the victims here don't even know they are being offended.  That might cause some to say, "then why does it even matter?"   I will tell you why it matters.
It matters to me because when you sit next to me telling someone else that you think its funny to ask your young child  "what are you, retarded?" and you don't stop to think that the mother beside you might have a special needs child or granchild then you are clueless.  Why do we think its ok to call someone a retard?  Why is it ok to continue to use an outdated term in an offensive manner?  It broke my heart to hear a priest use the word in that manner during a homily recently and no one said a thing.  Including me because I cannot bring myself to be the bad guy even when I should.  So I write about it and hope to change someone's mind.

Each of these incidents happened to me recently and in one case it was a teenager, that one I get.  I don't hate that child for calling my gifted son a retard.  She is a child,  a self absorbed clueless one is my bet but guess why she said it?  Because she still hears adults say it!  People have stopped saying "That is so GAY!" for the most part so why can't we quit saying something or someone is retarded?  People have stopped referring to people as "oriental" (unless your over the age of 75.) So why can't we quit the R word?  I can answer that - the offended party can't speak up for themselves! 

The third incident happened yesterday while I was sitting next to an aquaintance whom I previously regarded with a great deal of respect and liked  a lot because she's just so darn fun.   She won't ever know that her casual comment  caused me a great deal of grief or that my opinion of her has taken a drastic downturn. 
I have a child with special needs.  No she is not technically "retarded" or even "intellectually disabled" though if you observed her you would probably think so (she has autism.)  However, you wouldn't know by looking at her that she is supremely bright, she taught herself to read at 3 years old, way before the rest of my typical children.  She would classify as "intellectually disabled" on any test that didn't involve Mario Karts or how to program a dvr (both she is genius at.)  There is so much more to people than a superficial term, a single word classification of one aspect of the whole person. When someone takes a term originally meant as a description and turns into an insult it makes you think, whose the one with the impaired thinking ability really?  I say the one who calls someone retarded in the first place.

So on behalf of mothers and fathers with sweet little children who are intellectually disabled I beg of you PLEASE stop using the R word.  It matters to us.  It's not funny at all.  Ever.  Move on.

Just when everything is going wrong . . .

Image from The National Post

I don't do well with writing unless I have a flash of inspiration and lately they have been sparse.  Busy, sick, half crazy and irritated  these describe my current situation.  But I got one this morning and I would like to share it with you because it was simple and profound as inspirations should be. 

Let me set up the scene for you.  I have been sick for 9 days.  Really sick like WTH sick.  I have blown my nose till my brains came out which may explain the problems I am having.  My husband was sick for a month before me and as soon as he got better - wouldn't you know it . . .

MY kids are all sick.  ALL FIVE AT ONCE. On top of that my three year old may have fractured his big toe in a fall and wants to be carried everywhere.  You can imagine the wreck my house is in and the state of my fridge, laundry room and mind.  When I am not well, we just don't work, the house doesn't work.  It's all about survival of the fittest.  I have been the sickest for the past week but it looks like I am passing the torch to my oldest son today poor guy.  To him the only upside is UNLIMITED POPSICLES!!!!!!

I have been trying to breath and fight the fever and chills for days.  My solution is to take hot baths multiple times.  I can't stand the chills.  So let me get to the point.  It involves my daughter who you see pictured in the dryer below:

Yeah, she does this.  Its her new cool activity.  I especially love that she takes the time to throw all my clean clothes out on the dirty floor, sometimes she even waits until they are actually dry before she dives in.  Have you ever lost a kid in your own house?  Well after I found her here she succeeded in another recent endeavor which is climbing on top of laundry baskets trying to get the attic cord and pull down the ladder.  She got it open and tried to climb, it buckled and she fell and knocked her head on some doorway molding.  Never a dull moment here.

So all this is going on and I still feel like something you find in my backyard near my obnoxious Golden, Maggie.  I get Doodle downstairs crying (her not me, I think.) I proceed to treat the bumped head with an Elmo icepack and of course Doodle being who she is, refuses to cooperate, I stop mid-sentence when trying to explain to her that though what I am doing and what she is going through are uncomfortable and she doesn't understand it - I actually am trying to help her and it will feel better if she will cooperate!  Her brain works different than most, having autism that is. She often gets herself  into jams and dangers that a typical (Or neurotypical -NT) kid would not.  Or maybe they would? But either way, I can't explain it to her in so many words.  I just can't   So I quit talking and just yelled "TRUST ME!"  And then it hit me . . .

God does this to me all the time.

He just can't explain all of my pain or all of this world's pain in a way that my brain can comprehend.  Now by saying that I don't mean He is not capable of doing it, I mean I am not equipped to understand every situation in life especially the more complex and painful ones like why is He letting my 92 year old Granddaddy exit this world in such a slow, painful and sad way? 

Why does it seem like the world is going insane with natural disasters right now?

Why do teenagers who don't want babies seem to come by them so damn easy and others of us have to wait 3 years and endure painful tests procedures, medications and miscarriages before we get our babies? 

These are big unanswerable questions.  For now.  But I believe there is a reason. That is my Faith.  And every time I come across one of them I will have to remind myself that He is silently pleading with me.

 

              " TRUST ME!   I know what's best.  It will all work out with a purpose for the good in the end.  Even if I can't explain it to you right now in a way you can understand or even need to understand.  I love you. Chill out."

Or something to that effect :)  Spare prayers for my sick, sick family please!  Have a good day and use hand sanitizer!

Finally!! Saturday in the park (actually just my house but still good.) HBOT verdict

Referencing catchy old seventies song there and if you are too young to get that then you may find yourself bored with my blog - so be it :)  Stick around, you may find something humorous here, everyone welcome !

OK, so I actually have 5 occupied children at the moment and a husband who has gone hunting so I am in my pj's with coffee and a brain that is awake and actually got 7 STRAIGHT HOURS of SLEEP last night!!!!!!!  I still can't believe it!  I didn't even have to get up and you know . . .

Cool!  Sorry about all the exclamation points but a woman with newly found sleep + coffee + free time is a happy women.  I think there is a logarithmic correlation between caffeine and amount of exclamation points used in a post.

Back to the topic, I have a short video on the inside of the Hbot chamber to show you what it looks like and how it feels in case you are about to embark on your own similar journey or are just curious if you could stand it.  We had to wait about a month to finish our set of 20 dives and did so just this past Thursday.  Here it is.

That hissing sound you hear is the pressurized oxygen being pumped in to the inflatable chamber.

As I have said before, I have found I am claustrophobic, mildly so and found I could deal with it through taking Benedryl before each dive, saying the Rosary and generally begging God to get me through it.  I had one final episode of panic on the second to last dive which took me by surprise but the Dr. distracted and comforted me with a few tales of other people who had similar experiences but, according to her, were much more annoying than me!  (I think she was just being sweet :) )

My final verdict is a mixed one - sorry if you were hoping for a definitive, miraculous finale but that's life.

WOULD I DO IT AGAIN?

- Yes if I didn't know what I know now
-Yes if God came down and told me to
-Yes because I love my daughter SOOOO much
-Yes if there was some new development that required a different protocol which wasn't available to me such as update equipment, drugs to knock me out, etc.
-Yes if I was financially endowed (I would go for 20 more dives) not that I really want to so no don't offer to pay for it - I know you were thinking about it!
Yes because I can at least say to myself that I tried everything possible to help her and don't spend the rest of my life wondering - if I had only tried Hbot . . .

NO
- if I knew what I know now - that it was horribly uncomfortable, time consuming, expensive and only vaguely effective and in that who knows if her gains were made by the actual Hbot or by her natural development and maturation?

 By gains I'd say I have seen an emotional expansion in her, real emotions, real tears that were not caused by physical pain but by feelings of guilt over hurting her baby brother when she accidentally opened the fridge door on him and knocked him to the floor or fear of something she dreaded.  And of course that wonderful moment back in July when she said "I love you" to me out of no where for the first time in many years.

But that's the problem with nearly ALL autism "treatments."  Most are not scientifically documented and sound due to parents' desperation for any and all possible help they can provide there child and who are therefore quite vulnerable to charlatans and quackery of all types.  By the way, there is an extra hot spot in hell for people who practice this kind of demented money- making in my opinion!

I read something comforting recently about such parents (obviously I include myself in that category) : A book discussing autism therapies said that these parents, were not generally naive and unintelligent but educated and thorough in their research about the different treatments available.  True.  I actually do consider myself educated and well-researched, just don't ask me for help with anything to do with fixing a car, the stock-market or how to bring about world peace.

I am sorry this post is so long. I am just giddy with freedom this morning although it will soon end as I am currently allowing my kids to jump on a less than 100% safe trampoline (one side of the net is coming detached but hey, some people don't even use a net on theirs and I figure they must have really good insurance as I have recently discovered broken little-boy-arms cost TONS of money!  Not as a result from the trampoline jumping of course :) It was those darn old monkey bars.

On a final note: I can't actually say I wouldn't recommend giving  Hbot a try for your child - if you are wondering.  I really can't.  Why?  Because of the mystery of autism, what causes it, why it is becoming an epidemic, why there is such a wide spectrum of the affected, and a continued and general belief in miracles.  For those reasons I will not tell you NOT to try this therapy on your child.  Who am I to be the final judge? That said, do not mortgage your future away to do this, NO WAY.

Peace and God's love to you all always.  I need to get out of my pj's :)

Book Review : " Why God Matters "

Welcome to my humble blog  - Five Kids a Dog and a Blog.  If you are new here my writings are generally about my life with 5 kids, four of them being quadruplets, a daughter with autism and my Catholic faith.  Well its a big jumble O' stuff really.  I like to have fun and make fun of myself and other things but I will not be making fun of this book because I really liked it.

Today I am hosting my very first book review!  I love to read so when the offer came in my inbox I was intrigued.  When I saw the title it was a neat moment of hmm is this a coincidence?  I think not.  I had seen a blurb about this book somewhere recently and was thinking I would like to read it anyway.  Funny how that works out.  As I am newly trying to be extra frugal, getting to read a free copy was a nice little perk.

The book?  Oh I guess I should mention the title!  "Why God Matters - How to recognize him in daily life," is written by a father/daughter team- Deacon Steve Lubert and his daughter Karina Fabian.  I can only imagine that co-authoring a book on faith would have to bring a family closer even if it was hard work.  It is published by Tribute Books and is set up in fourteen chapters.  Each chapter has an essay on a particular faith issue followed by a short "Life Lesson."  The chapters are alternately penned by the deacon and his daughter.

I am immediately drawn to the familiar voice in the essays, that of a friend almost and I like the Life Lessons for their digestibility.  I know that is a strange choice of words for a book but it fits.

The writing style is quiet, simple and straight forward.  It does not lack depth but pulls you into the next chapter by not overwhelming you.  A chapter a night would be a good pace if you could hold yourself back, letting the lessons sink in and really finding how they apply to you.

The book quotes scripture as well as the Catechism of the Catholic Church, however this book appeals to a wide audience , its Christian at the core and as Christians we all believe in and love the same eternal Father, Son and Holy Spirit, no matter how we celebrate.

There are chapters on a variety of topics and the personal stories were my favorite as they added to the flavor of authenticity.  I just love this book because it doesn't make the reader feel stupid or bad about themselves!  Everyone has to walk their own faith walk.  No one can do it for you.  We all may hear the same words in the Bible, at mass or service but our life experiences are different as are the gifts bestowed on us by the Holy Spirit.  We truly are individuals created by God for a divine purpose.  I'ts up to us to spend our life working with God's grace to fulfill our task set before us.  I think this book will be an excellent tool for anyone who is struggling with that questions Why does God matter?

It is an encouraging book, warm and real and positive.  I do recommend "Why God Matters"

OK, now back to my less mature usual blog rantings - by the end of the weekend and maybe sooner I will post my final installment on my daughter's and my experiences in the Hyperbaric Oxygen chamber.  Also, does anyone out there care if I try to monetize my blog with ads?  I could use a little income and though this is a hobby I might as well try it see what happens.  If it's too annoying I will remove it.  Hey, have a great night and I will be back soon.

Hey! I'm back!

Well I guess I took a hiatus for the end of summer/back to school season.  I really miss writing here.  I don't want to be one of those bloggers who has nothing to say but continues to post anyway :) 

Update on Pauli :  We are about to finish our last three dives in the Hyperbaric Chamber and I will give my more definitive opinion on the whole experience at that time.  And answer some questions like - would I do it again?  Did it really help?  So if you're interested look for that at the end of next week.

I am really trying to get my act in gear right now.  I have big plans to get my house cleaned and organized before Christmas (quit yawning) and I need to get on a better schedule at the gym.

I have to say, as to the rest of my kids, SECOND GRADE IS AWESOME SO FAR!  I really feel that they have teachers more suited to their personalities.  Teachers with patience, kindness and an appreciation for their differences and strengths.  This year we split the quads up a bit more. 

This is always a big questions with multiples, DO you split them up or keep them together?  Thank goodness a law was passed a few years ago to give the parents the right to choose since they know best how their kids function.  Thankfully, differentiation is becoming a common mindset among educators and lest you scratch your brain at that reference I will explain:  In the past ALL multiples were treated like they came out of the same box. "We must split all multiples apart into separate class rooms no matter what their parents say or there will be a crack in the space-time continuum!"  Now, we decide because guess what?  I know that little Johnny and Jeffy get on each others nerves but little Sissy needs Johnny to help her make friends and shield her from some cruelness directed at her due to her smallness and shy personality, etc.   (by the way, not my kids real names!)

Anyway, I have Doodle in her same class which is perfect for her with awesome Ms. Andrews for the third year!  Her two sisters wanted to stay together and so they are while their brother wanted to try out things on his own and need to be in the FOCUS class anyway so that worked out well. 

Me and the little man are to be found most days at the gym, park and or grocery store.  I have joined the crazy coupon world order now and thanks to a couple of websites such as Southern Savers we are now saving quite a bit and I have stockpiled my pantry and freezer.  I had no clue how much I was really spending and now I have no excuse!  Look into it.  If I can do the system with my crazy life then anyone can.  One day I will conquer freezer cooking.

Update on book writing:  I have written, yes written two children's stories and am waiting patiently on my dear busy brother to illustrate them before I send them off to prospective agents.  If anyone knows anyone in the business who can offer advice please send them my way.  I have a couple other ideas I am working on that have to do with my Pauli and my family in general.  Have a great day!! 

Dog Days are upon us

Do you know how much I hate this heat??  Not enough to move up north, but still it depresses me in a way that only the cold, dark days of winter can rival.  Hmm cold sounds good right about now . . . 

There is not much you can do with five kids when its hot:

Who is going to invite you over?  (No, I am not fishing for invites!!  Promise!)

You can't ban them to outside play like I remember my mom doing.

They eat up all the Popsicles you buy in one day.

The dog tears up any type of outdoor plasticky or blow up pool type thing you put out there and when you venture out she breathes her hot sticky breath on you then leaves a coating of saliva and dog hair adhering to your legs.

When we go to the play land at McD's inevitably Doodle will steal other people's fries and lick their kids ice cream cones and now that she isn't a cute little toddler, people don't think its so funny anymore although I am expecting you to laugh while reading this so  - go ahead :)
Oh and as a Bonus she likes to set off the alarm by trying to open the door that says EMERGENCY EXIT ONLY.

The local library is smaller than my house with old VHS tapes and an old unsympathetic librarian to  match.  What are my tax dollars going for??

Can you tell I am grumpy?  I think I know what set it off too.  This morning I went to Mass and during the Sign of Peace or Kiss of Peace where everyone shakes hands and wishes, well, peace to everyone around them, a little dried up lady refused to shake my hand.  Refused.  Now this has happened to me before and I believe the general excuse is not germaphobia but some archaic adherence to Pre -Vatican II tradition.  I understand tradition but if it makes someone feel awkward and serves absolutely no purpose in its adherence.   WTH??  NO offense to seniors but it usually is the seniors who refuse to participate.    Yes I know, I need to get over it.  And I will. Promise.  I'm just sayin', if I was someone else I think I would shake hands with me.  I seem like a nice enough person?? 

OK so updates on Doodle:  She is doing some more talking and slightly more eye contact, she asks for the HBOT at random times by pulling on my arm and taking me to the door saying "Want to boat please!"  That's kinda cute.

It gets so hot in that boat that I am dreading the next dive.  I have two coming up this week and maybe three the next.  We still have four weeks till school starts.  I am not sure my house or brain or body will survive the heat, the extra sugar and carbs (think ice cream and pizza) or the overload of laundry, dirty dishes and bored children.  I still like summer but maybe just until the Fourth of July.  Well I will check in next week.  Until then - PEACE BE WITH YOU!!

Doodle, I do not speak Spanish . . .

So I have been MIA for a bit for several reasons.  My almost 16 year old cousin has been staying with us so we have had fun visiting and doing things a bit out of the norm.  I will surely miss her extra help with the kids, having a nearly grown female to talk to and the way she picks on my husband.  I have been given a glimpse into the world of raising a teenager but not an accurate one as our conversations are very easy and I don't feel the pressure to make sure she does anything (her mom has covered that very well already as she is turning out to be a lovely young woman - go Katie!)

I have three daughters so I needed the tutoring!  How do you handle the constant attention from admirers of your children?  Sheesh, I will need to observe a little more because though I am sure she has a good head on her shoulders and the   neighbor boys are probably still goofy and awkward and this point, as my husband pointed out - they won't be for long and he still remembers being a teenage boy.  Somehow the thought of raising my two sons into teenagers doesn't scare me nearly as much?


We have finished 11 dives with 9 to go.  I am having to piece days together now as my childcare situation will be less easy with my cousin gone and a husband back to work so instead of every morning it will be 2 or 3 mornings a week.  I don't want to post a bunch of nothing so I won't post on days there is nothing to report.

That said, I remind you that all the things I report are strictly my observations and not scientific evidence of anything.  Who knows at this point?  Days go by and I don't notice anything and the creeping doubt of Am I Wasting Our Money? sneaks in.  Here's a funny update: 

Doodle has taught herself Spanish.

Yes, the girl who only talks when she needs something like bed, food or drink and occasionally to go jump trampoline Please!

Now I have suspected for some time that she was doing this.  It shouldn't surprise me all that much since she taught herself how to read at age three, before any of her typical siblings learned.  That is a funny story for another day.  She likes to watch Spanish sesame street, Plaza Sesamo.  And the girl Googles and You Tubes videos in Spanish and many other languages.  I have seen Calliou in French, Disney in Italian, Big Bird in multiple languages playing on my computer screen. 

She switched my blogger account to Romanian for a couple months till I could figure out how to switch it back so I learned a few new words :).

But-
She started speaking Spanish to me last night.
We were fixing dinner and she was very hungry which means she hangs around in the kitchen peaking into the oven and handing me potholders.  So she says "Los Carnitas!"  Which I think, is some kind of meat dish, I was making a sausage and vegetable pasta sauce and baking popcorn shrimp but still - she was close and pronounced it correctly!

Last night as I tucked her in I was tickling her and hugging her and she looked up and said "Amigos! Friends."  How sweet is that?  I know its just a word but we are talking about a child who said nothing but EEEEEE! her first three years.  Well technically she did have about 4 words before the autism kicked in full gear and lost them all.  I remember a time when I thought she might never speak and that is the case with many severely affected children so last night was a tiny miracle.  I really think there is some area of her brain that is savant like and I can't wait to find out what else she is capable of.

Please know that many if not most children with autism are bright kids and are NOT mentally retarded or intellectually disabled as was once thought.  Some are however, and they need double efforts on the part of their parents, teachers and communities to make there lives comfortable, happy and to reach differing stages of independence and productivity.

Have a great day Amigos!

Dive 9! Punctuation marks!?":

Isn't she beautiful?

OK, I skipped a post because I didn't want to bore you with the nothingness I had to report.  I ramble when there isn't anything exciting to say -

The dive was great today, as they have been all week.  I zone out, she zones out and we just chill (except that it gets quite hot and muggy in there.)

So I was thinking about punctuation marks today, you know I never really learned how to use all those nifty marks and even though I love to write and took advanced composition in college (my papers got A's but my grammar tests got F's!)  It just bores the h_ll out of me.  And yes, even though I am married to a former English teacher with a Doctorate.  I tend to sprinkle commas like a spice and they don't always go where they should.  I like to call myself the queen of run-on sentences.

Anyway, the kind of punctuation marks I am referring to are the marks in your life timeline.  The moments when something said, done or undone changed the course of your life forever, for the better or for the worse.  What are yours if you care to share or just think of them to yourself?  We all have them.  Everyone has a life story and some are more interesting or exciting than others but I bet most people could come up with a decent short story memoir to share.

Here are a few of mine:

When I was in college, about to graduate with a degree in Zoology (how many jobs do you know that require that degree?) And I had no clue what to do next. I remember the moment I decided to become a teacher.  On hind site I question the intelligence behind that choice but, no, it is the reason I have the husband, kids and life that I have today.

The moment I walked out on a cliff in Australia one night and heard God's voice in my heart, answering a youthful question I had very clearly.  That has always stayed with me because it was so immediately answered.

The moment I laid on the ultrasound table and was told I had 5 babies growing inside, that is an entire post in itself so I will leave that for later.

The moment I decided my husband had my heart.

And so on . . .

My point to all this is my fervent wish that the end results of these HBOT treatments will be a huge neon punctuation mark in my daughter's life story.  Or maybe not, but here's hoping.

Dive 7 - Bandwagons, Twilight and okra

Ha, right now you are thinking - WTH with that title?  Well I will get to it.  Is it wrong to say WTH?  I think that is less offending than WT_?  Although personally I snicker when people use that in conversation (the abbreviated form that is.)  Pop culture is a funny thing in general.

So people are either joiners, who make novels into bestsellers for instance, or non conformists who shun what's popular, right?  I can't really place myself in one category though if someone were judging me from the outside I would probably appear to be in the former category.  I mean look at what I've told you about myself so far, Harry Potter, Twilight, alternative therapies (yes ALTERNATIVE therapies are quickly becoming a bandwagon- funny oxymoron.)

Well, to start I don't have much to report about our visit to the CHAMBER today except that all I wanted to do was go to sleep (holding out on coffee before therapy!) And that is a good sign. But Pauli is getting bored and hot in the last 15 minutes which makes it hard to do so, sleep that is.  If anyone out there has any suggestions on keeping a seven year old with sensory issues entertained in a small place, let me know.  Please :)

One day I want to tell you all the amazing things Doodle is able to do and has learned to do on her own but today I wanted to mention something completely different because I am excited about this bandwagon, yes I have a point and general direction to this post!

Trends can be a good thing like people moving away from smoking, or a bad one like drug experimentation in the 60's and NO I wasn't around for that!  Some people like my cousin and my best friend are non conformist.  They aren't into Twilight (sheesh, I don't get that one at all,) and tend to think that people who do what everyone else does are yawnish.  I agree for the most part.  If everyone does the same thing how bland would the world be? 

However, sometimes the bandwagon is an great and awesome thing like the current trend toward eating healthier, local grown, organic foods.  How can that be a bad thing?  It's not.  So I was reading a post on something called CSA's last month -Community Supported Agriculture.  Where you buy a "share" in a local farm and in return you get a portion of each week's harvest.  I followed a link that was provided called localharvest.org and found a brand new CSA farm just down the road (new to CSA, the farm was very established.)  How neat!, I thought.  Maybe this will get my kids and myself to eat more fresh veggies.  They are OK about it but when I go to the store I stand there in front of the produce and have no idea what or how much to buy and tend to waste money and things rot in my produce drawer and give off a weird caustic smell before I realize I did it again.  Then it starts all over and its a vicious cycle. 

This way I know I will be getting a certain amount on a certain day each week and I just have to eat it up before the next Tuesday.  It's supposed to be enough for a family of four and with my kids being little, our seven will eat just this amount I bet.

Above is a picture of this weeks haul which costs $20.  It is supposed to be about 20% less than grocery chain prices.  Not sure, but supporting the local economy is a great thing to do in any case.  There is actually a little more than is pictured. So I have boarded this trend train for the better.  Now I have no idea how to cook Okra so if anyone has a clue please send it my way!  Talk to you tomorrow :)

Dive 6 - Week Two

Today was the easiest and quickest yet.  I think I will make it now.  So onto other topics.  I believe I conquered that hill :)

Its hard to say scientifically if any gains she is making are from the HB chamber or from her ABA therapy ( I think its both really.)  But I find myself watching her constantly to see if she is reacting differently, saying something new, express an emotion in a socially acceptable way. 

As I write the most wonderful thing is occurring.  She is playing a modified game of Jenga right along side her four siblings!!!  She is nearly always on the computer or messing with the TV remote, hijacking my phone or up in her room alone with toys or books.  She rarely engages with anyone else unless forced.  I am loving this!  I know it isn't scientific but she is changing somehow.  Let's pray it continues. 
BTW my awesome cousin Amber (almost 16) is here for two weeks and she is such a help.  She totally gets Doodle and treats her just like the rest of the kids.  I love it when people are comfortable around kids with differences.  Amber arrived into my small neighborhood yesterday afternoon and within 20 min the teenage boys across the street were snooping around sending there cute little brothers over to check her out.  My husband met them at the door and told them to tell their brothers to "Man up and come over to meet her themselves."  They did and I was impressed.  You have to understand A) there are NO teenage girls in my entire neighborhood but a lot of boys and B) Amber is a cutie.

Here are the pictures of Doodle and her siblings playing.  Thanks for the Jenga game Katie!

Dive #5

I couldn't believe it (yeah, really I could,) when today I woke up filled with the dread of going back to the chamber.  I have had a couple of decent dives now and am faced with the reality that its probably going to all be okay.  So I sucked it up and we went and it was fine except hotter than normal.  I kinda wish it was January?  That's saying something cause I really do not like winter, even in the south.

So all week I have been telling myself.  "If I live till Friday, I get to see Eclipse with my Sister in Law.  Yay!"  I made it and am just hours away from cinematic escape!  I loved the books and the movies are pretty good too.  So here comes my reward. 

I have one last thing to share which struck me as timely and interesting.  Don't you believe God is very subtle and succinct at times? Other times its more like a bullhorn but this is what I read on the dog-eared page that I turned to in a book I brought into the chamber during those first harrowing moments of the first dive.  Keep in mind I haven't looked at this book in at least 6 months but had popped it in my bag to keep me company.  It's called The Power of a Positive Mom.  By Karol Ladd.  Its a wonderful book, well written and nondenominational in the best way.
     "Norwegian Christian author O. Hallesby referred to prayer as the "breath of the soul".  He wrote:

The air which our body requires envelopes us on every hand.  The air of itself seeks to enter our bodies and, for this reason, exerts pressure upon us . . . The air which our souls need also envelopes all of us at all times and on all sides.  God is round about us in Christ on every hand, with His many-sided and all sufficient grace.  All we need to do is to open our heart.  Prayer is the breath of the soul, the organ by which we receive Christ into our parched and withered hearts . . .As air enters in quietly when we breathe, and does its normal work in our lungs, so Jesus enters quietly into our hearts and does His blessed work there."

Could there have been a more subtle bullhorn?  I am humbled that he took time out of his busy universe to see my tiny speck of sand body cowering in the stupid tube and answer my prayers for comfort that first morning by directing my eyes to that very passage.  Cool.  Have a great weekend I will be back on Monday morning for dive #6.  Go team Jacob!!  I actually like them both ;)

Day 4 - went quickly

Why can't our chamber be this large and open?

Or even this one, clear with someone sitting next to you saying "it's ok Bonnie"  huh?

No, this is what I get.

  See that little vinyl window?  My face is always looking up through that at fluorescent lights and cringing.  Doodle sits at the lightless end playing games.  How does this not bother her with all her sensory issues?  It is a mystery.

            ********************************************

Blessedly quick and uneventful was today's HBOT dive #4.  I still had a couple of heart-racing moments but thanks to the Dr's reassurance that the chamber could not, in fact, blow up if she say forgot to turn the pressure down when it gets to 4 (atms, I guess?)  Luckily this is due to a governmental regulation on the machine that requires a built in safety stop, she doesn't have to stop it, it stops automatically.  I am actually thankful for a government regulation?  You mean they did something useful and correct, for once?  huh?  Don't get me started on politics because I rarely have any clue as to what I am talking about in that arena.

Here's an interesting coincidence, or maybe not a coincidence?  Doodle slept all night.  All night.  We are talking till a hair before 6 am.  That is amazing and wonderful.  For the past 6 months or so she has been waking at 1:30 or 2am and climbing in our bed.  I am fine with that because she goes back to sleep.  She can do that forever if she will go back to sleep.  There were many months and years when she would cry, scream, play, flip every one's lights on, refuse to sleep in her own bed.  And this is not a "cry it out" option kind of child.  I do understand both ends of the sleep training/co-sleeping thing and I have discovered through having multiple children of the same age with different personalities, that each child requires their own route and method.  NOTHING anyone says can sell me any different on that position.  If you try I will smile and say, "Oh do you have quads? and two children on the spectrum?  Oh you don't?  Then be quiet please." 

Gee do I sound snotty this morning or what?  All that oxygen has gone to my head :)

Really though, parenting in general, multiples or not, special needs or not, aren't we all just feeling our way? Groping in the darkness for someone or thing or book to shed some light with the hopes that one day we will look back on our efforts and smile knowing we did the best we could?  I am.  Trying that is.

To end on a funny note: Guess what song I am adding to my playlist?  Guess . .


WIDE OPEN SPACES yeah . . .

See y'all after dive 5 for the next installment of Some funny play on a soap title as it relates to being claustrophobic in a HBOT chamber that I can't seem to come up with right now because a small man with an excruciatingly stinky diaper is crawling on me as I type.  Ciao!

HBOT dive 3 - trucking along

Today was our third dive.  The funniest thing happened.  When we arrived Doodle ran into the room and climbed in the deflated chamber and said, "I want to Boat please!" 

She has a funny way of getting her thoughts across by using nouns as verbs, ex I want to BED please! (sleepy), I want to TEA please! (thirsty)  It's cute but we hardly notice it anymore.  I am just thrilled when she says anything at all, especially when I can understand it :)

So her being eager made me calm again.  We had one little glitch.  After we were in the chamber and it was fully inflated (takes 5 - 10 min) I realized we didn't have the fan in there with us.  I started to panic because the thought of building heat seemed like a cooking process in which I was the main coarse and that didn't exactly appeal to my Benedryl suppressed panic mode.  So I called her cell and the Dr. came and depressurized us and gave me the fan.  That irritated Pauli so I had to calm her back down and we were off.  She played with my phone the whole time and I read and listened to the ipod.  Certain songs make me feel better and others worse.  It has to be something not to slow (time drags) but not to upbeat because if it makes me want to dance and move around I will get hot and anxious.  I will work on my play list for tomorrow.

Thanks to my friend Katie K.  We now have a DS to play with tomorrow so I think Doodle will love it and if not I will make use of the Harry Potter game she included :)  Yes I love HP - sue me.  My brother totally does not get that.  Then again he still likes comic books and I totally don't get that.  To each his own.

  I have included a couple of pics so you can get an idea of what it feels like inside.  I know this is not supposed to be all about me but until I get a grip on my own discomfort it is, then I will turn my total attention to her.  Conquering your fears is exhausting and empowering at the same time.  Anyone ever done that with something?  I would love to hear about it, really.

HBOT dive #2 . . .a wonderful surprise

Well, I survived dive 2 with the help of Benedryl.  Apparently it does indeed take the edge off.  I also avoided my full caffeine intake this morning as I didn't need any extra help in the heart racing department.  I tried visualizing before I went in and more prayers of course.  The biggest help was bringing my ipod with a few new songs.  I was going to load it with the exact number of minutes of music so I would be able to track time but I had about 40 min on there and that was fine.  I let Doodle borrow it and it kept her occupied a good 15 minutes.  She especially likes Justin Bieber's "Baby" and I do too.  I do not care who knows it.  He is adorable and that makes some people want to hurl but I love it. 

Doodle kept me calm.  It was amazing.  As long as she laid still and played with my phone or a book I felt relaxed but when she started to sing or kick from boredom I started feeling the panic return though much milder than yesterday's experience.  I also found that if I covered my eyes with my arm and couldn't see the ceiling of the chamber, I was okay.  Sitting still helps the heat to not build up to bad. 
Speaking of the word CHAMBER.  What an awful word to use in this situation!!  Its like calling it a Hyperbaric COFFIN or DUNGEON.  Why didn't they name it the Hyperbaric fun tube or the HB Oh boy!  Sheesh, who wants to lock themselves in a CHAMBER that doesn't suck blood?  Me that's who.

I haven't decided if I will post a video daily or intermittently yet.  But here is the really wonderful surprise.  After the dive we had to go straight to her psychologist for ABA therapy (I will fill you in on that soon.)  She did so great today the Dr asked me what we did differently because Doodle was so calm and cooperative.  CALM and COOPERATIVE.  I don't think anyone has ever used those two words together to describe my daughter during one of her many therapy sessions.  That is mini miracle #1  But not the wonderful surprise.  The surprise is . . .

We were sitting in the waiting line at the pharmacy drive thru in the silence no dvd, no radio, no talking and out of the blue she says to me "I love you" 
You have to understand that she hasn't said that to me in 2 or 3 YEARS and never on her own.  It was always echoed.  Boy, what a reward for all I'm going through.  If you have never had a kid who couldn't tell you they love you you probably won't understand how it felt, or maybe you can imagine it.  I don't know but it's like hearing you've won the lottery.  Really.  That's all for today.  Stay tuned and thanks for your many prayers.

HBOT Session #1

Tomorrow morning Doodle and I will start her first "dive" in the hyperbaric chamber.  I am learning as I go but here is what I know so far:

~It is used on brain damaged victims (such as those in car accidents)
~used on diabetics and others with non healing wounds
~used on divers who acquire the bends
~used on kids with autism who theoretically have areas of the brain not being used due to a possible lack of oxygen perhaps during birth?

~I have heard it can have fantastic results with decreasing behaviors that are undesirable. 
~There is some scientific proof of positive results out there yet it is not approved by the FDA or whatever governmental body regulates such things.
~it is fairly expensive for being experimental, or maybe all experimental treatments are expensive since insurance won't touch them.
`Its probably the only thing we haven't tried to help my daughter.  She is seven now and a well-respected Psychiatrist in the field once told me that when she turned 7 the therapies quit working as well.  Makes me feel panicky and sad but still hopeful.

I believe in miracles, even small ones.  I will still believe in them even if this turns out to be a big waste of money.

I will keep you posted if you are interested.  I plan to take some short videos of me asking her social questions which we have been practicing under ABA therapy every day or two and will post anything interesting that happens.  Feel free to follow our journey.  I am excited and optimistic yet tempered with realism and nagging random voices from science professors in my past!  Prayers are much appreciated as always.

Doodle's new activity

Here is Princess #3, well technically she was born 2nd so I guess she is 2. Anyway, she loves her Daddy almost as much as she loves Pizza and playing on the computer. He is her security blanket. I try not to be jealous but sometimes its hard. At least she connects with someone. That is such a blessing when you have a child with classic autism.
There is so much talk these days of autism. I hear people in the grocery store casually throw around, "oh my son has autism" I look at the son and he is smiling and talking to mom or the cashier and maybe he gives a little screech or repeats a phrase he just heard but I am thinking "really?" Umm No your child is "on the spectrum" and that is a whole other ball game. Being on the spectrum is nothing like having full on autism. Its like night and day and I don't understand why they are even considered the same thing. It makes me mad, sorry. But when people say their kid has autism so casually it really makes light of the heavy load the kids who are really afflicted (and their families) carry. If your kid can't tell you they love you, or what they want for dinner, or why they are crying at 3 am or doesn't even look at you when you come into their room at school, then you know what I mean. Otherwise your child is on the spectrum or has PDD-NOS. They do not have Autism per say. Yes I know there are different levels of severity. Something about this just really makes me angry. Sorry. But on a lighter note . . . We have a new equestrian in the family!! Doodle has started horse therapy and she LOVES it!!
See that smile? It lasts the entire 30 minutes she is riding. And she is getting better and
more independent each week.














These are some of the volunteers at the farm she rides at. They are awesome and some of the kindest hearted people I have met in our journey so far.