It's called AUTISM- Have you heard of it????

OK, breathe Bonnie . . .
I am used to be being stared at for one of three reasons:

1.  I have five children  - not an extremely huge number of kids but definitely at least two more than most families you see in public places.

2.  I have a set of  7 year old quadruplets (that means FOUR)  -sorry but people ask me if they are twins all day long.  More so when they were babies but now they have grown, people have less interest which is kind of good but still occasionally I am nicely interrogated on my unique family and how they came to be.  I am OK with that usually because heck, we are a sight but you learn how to minimize the attention by dressing them differently, putting them in two twin strollers at the mall and walking away from each other.  Also the number one rule for avoiding friendly fire is this:  AVOID ALL EYE CONTACT. Especially when you are in a hurry and you just want to buy some chicken nuggets and milk and get out.  I am pretty southern and try to be polite and smile at everyone so this one is hard for me, but people take it as an invitation to approach you.  Sometimes I don't mind at all.  I like meeting new people and most are genuinely interested and kind.  Some get nosey and start asking questions about fertility and such but still.  I  don't mind.  Unless I am in a hurry so no eye contact.

3.  And the third reason I get stared at is that I am a bombshell, totally hot.  So there you have it.  NO I am kidding!!!  The third reason we get stared at in public is that one of my quads happens to have a moderate case of autism.  Not autism like the popular usage referring to quirky kids who speak very well and maybe flap there hands a bit but AUTISM like still wears diapers at night at 7years old, must have hours of therapy and see multiple specialist each week, can't tell you what's wrong when she is crying wildly at 3 am for the third night in a row, bangs her head and chews her lips till they bleed, rarely speaking kind of autism.  Don't get me wrong - my daughter is AMAZING, and brilliant.  She taught herself to read at 3 years old.  Even my son who is in gifted didn't do that.  I love her to the depths of my soul and she has made me a better person. Truly.  But she does complicate things on a daily basis.  Its like having a perpetual toddler in tow. 

OK so now to my point- 
I am used to be stared at.  Its just human nature, I get that.  Most people notice, register and move on:  I imaging the conversation in their heads going something like this:

"Holy cow!  WTH (or WTF! depending) Uh are all those hers?  She must have a daycare.  I wonder if she is in one of those weird religions who believe in having 20 kids? Wait they all look the same age except for that small wiggly one, they must have some twins in that mix? Why is that one acting strange?  She looks the same age and has the same features. Oh I see must be multiples, must be autism, must be a crazy overworked momma!"

And they would be right for the most part and they would go back to eating their fries or picking out their toilet paper or other exciting activity. 

So today after a total of one month of kids being stuck at home on the LONGEST CHRISTMAS VACATION IN THE HISTORY OF HUMANITY, we decided to go out in public after taking Doodle to speech therapy.  We ventured into an uncrowded Chick fila at 3pm for a very late lunch.  There is ice and snow all over the sidewalk and parking lots (hence the month out of school) so I am navigating with one hand on Doodle, three left on their own and my other hand on the bucking bronco that is my high-spirited two year old.  We'll call him the bull.  Have you ever walked a bull on a leash? No? Well that is best way to describe my little guy. 

Oh I forgot to mention whenever I have to take all five anywhere along, which is exceedingly rare, I stop and say a prayer for our safety and my sanity because it is quite difficult really but doable.  So I made the sign of the Cross and prayed silently before we entered the restaurant. 

I must preface my story with a side note about Doodle: she has an annoying habit of stealing peoples food.  People who unfortunately she doesn't know but happen to have chicken nuggets or fries and therefore she believes are all there to feed her.
 
So I pray, we enter and all my kids immediately turn left to go straight to the play area.  I let go of her hand for less than two seconds and when I turn the corner behind her a woman grabs my attention.

"Excuse me mam, I need to tell you that your daughter just took my son's chicken nugget and walked away"

Me: "I am so so sorry, would you like me to buy you some more food?"

She was about to keep on and I realized -
She doesn't get it yet, most people figure it out in about two seconds - that my daughter has special needs, that she can't help her odd behavior, that they should just get over it because really ITS JUST A CHICKEN NUGGET! Really this poor woman has her hands full with five small children and doesn't need any grief or judgement from me because she obviously doesn't want her daughter to steal stranger's food, she isn't a bad mom who lets her kids roam fast food joints unsupervised scrounging free food because they are broke and have no morals.  She just didn't catch her fast enough to prevent it and well ITS JUST A CHICKEN NUGGET!

Most people would think that but not this lady, not today.

So I stopped her and looked her in the eye and kindly said  "She has autism.  She does this sometimes.  I am sorry I didn't catch her.  Can I buy you some more food.?  Her lone child, a grown teenage son, caught on quickly and gave her a look and said "Mom it's fine."

She couldn't let it go because, I don't know, maybe I looked like I needed to be taught a lesson or given some unsolicited advice from her vast experience with ONE. GROWN. TYPICAL and POLITE child (wait a minute a typical and polite teenager is an oxymoron but back to the story.)

Her - "She didn't even look me in the eye, she just took it!!" 
 I am thinking LADY - she doesn't look anyone IN THE EYE! That's part of what autism is!! I am her mother and she won't look me in the eye!

She couldn't let it go.  Though she smiled and said "it's OK"  After I explained.  She had to get a jibe in.

As I turned to walk away with the bucking bull still in tow she says, "Maybe you should stay closer to her."  My jaw about dropped.

  Me being southern, instead of saying what I wanted to, instead of thinking of some cool sting on the spot to put her in her place for being ignorant and hurtful and judgemental  and lets just say it STUPID, instead of saying something I would later regret but would be so fulfilling at the moment. I just smiled and said "yea, well it's kind of hard with five."
  What I wanted to say was  "@$#%$^$#%R$#^%$^# to you and the horse you road in on! You ^#^%#$%$%$&^$%!! "

I. Should. Stay. Closer. To. Her.

Now why didn't I think of that?  She's %$^%$ brilliant!

 I want to thank you all for sticking out this long, vent.  I truly see kindness in strangers' hearts on a daily basis.  Understanding, recognition, sometimes empathy and a look that says they have been there, but once in a while someone who has lived under a rock or in a utopia comes along who doesn't know what its like to care for a child with autism or small children at all.  If you ever see a situation such as this unfolding before your eyes don't be afraid to step in and offer your understanding to the parent at hand.  It will serve as a reminder to those who deal with these situations frequently that not everyone is an ignorant git :)

Remember - its not the end of the world - its just a chicken nugget.  It's called Autism.

**If you've been in a similar situation due to having multiples or a child with special needs feel free to share your story in comments or email me. I would love to hear about it.  Then we can stew together!

Bonnie

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 :)

A few thoughts on Hbot dive #1

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 . . .