Sunday, July 25, 2010

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!!

Wednesday, July 21, 2010

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 SesamoAnd 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!

Thursday, July 15, 2010

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.

Tuesday, July 13, 2010

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 :)

Monday, July 12, 2010

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!

Friday, July 9, 2010

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 ;)

Thursday, July 8, 2010

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!

Wednesday, July 7, 2010

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.

Tuesday, July 6, 2010

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.

Monday, July 5, 2010

A few thoughts on Hbot dive #1

video
Well, we did it.  We dove.  It.  Was.  Awful for me that is.  She had no problems until it got hot and muggy about half way through.  Then she was bored and hot and started to fidget.  But back to the beginning.  Unbelievably I had quite an experience.  It started out ok.  I am not panicky.  I have never had claustrophobia, I ride roller coasters and am not skittish.  I had a mini freak out when the Dr. zipped it shut.  Its cylindrical in shape and about 7 feet long so we had room to lay down or sit up.  it has to inflate and that takes 5 min and it makes your ears pop like when you drive up in the mtns.  Not uncomfortable though.  I had to turn around and look out the vinyl window to see the Dr and I just thought "I can't do this, I won't be able to get out.!"  Terror welled up inside me as well as panic and guilt because I paid a lot for this (we are skipping our summer vacation at the beach) and I love her and want to be able to bear anything to help her, even my own discomfort.  The shame of losing momentary control was immense.  It was mostly in my head thankfully, I didn't scream but I did insist she unzip the chamber and let me stick my head out and think for a second.  She said it happens sometimes but most always with the parents, the kids are fine.  And that was true.  Doodle thought it was funny.  She happily read books most of the time, or laid in my lap.
 I psyched myself up and told the Dr we would try again.  I laid down and did the only thing I could think of that might help.  I prayed.  I started saying the Rosary.  Now I am Catholic and that may be foreign to some of you but let me tell you - if you have ever been in a moment of intense fear and have nothing to cling to but prayer it helps to have something repetitive or meditative to say because you can't find the words that may be in your heart or head at the moment.  Just get yourself to that place of peace that surpasses human understanding as fast as possible.  I hate to sound dramatic.  I certainly don't live my normal life like this but I want to be honest about this whole process and this is really what happened.  It worked, I asked God and Virgin Mary to calm me and Pauli and to get me through it for her sake.  I was able to have my phone in with me and that helped. I could call my husband, a friend or the Dr in the next room. 

I started reading, time went by.  It felt good and relaxing for a while.  Then it began to be oppressively hot and sticky due to the pressure.  I had a small fan but I directed it at her to keep her cool mostly.  She got bored and agitated.  I started panicking again . . . I thought "She is going to flip out and want to get out, I wonder if she is feeling what I felt at the beginning?"  I had to get out.  I prayed again, harder and slowly the panic subsided. I imagined a clock in my head counting down the time.  Theoretically I knew we were safe and that there would be an end soon.  But what did she think?  Did she think we would never get out again?  I can only imagine what she thought as she has never been able to tell me more than "sad" or "mad" and that has been very very recently.  I hate autism.  I hate it.

So I had an epiphany of sorts.  I always thought people who freak out about enclosed MRI's were kinda wimpy and needed to get over it.  My own mom had to have relaxing medication to get through it.  The Dr. told me to take a Benedryl before coming in tomorrow.  It hit me - my sister Becky, who passed last year, took a Benedryl every day of her life along with other medications like Zanax. She had panic attacks and phobias her whole life.  God I had been so unsympathetic!!  How could I be so harsh on her??  I am so sorry Becky.  I get it now.  I will never judge someone for their phobias again. I get it now.  You have zero control over it and can't talk yourself out of it.  Its a physical and psychological thing.  I get it now.  Wish I had understood then.  I'm sorry . . .

Sunday, July 4, 2010

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.