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Tuesday, March 27, 2018

A Call to Action...the Local Social

Okay, instead of alluding to issues, this will be a point blank post.  Both boys have stuff currently going on and I don't think I'm crossing that fine mom/child line that I do my best to respect.

Connor's Pierre Robin is a syndrome where many of the kids with this end up with 20 or more surgeries when they're especially affected.  That would be him.  To date, he's at 14. We've had a nice few years mostly problem free, his scars are minimum and his speech is amazing for having been born with literally no cleft palate.  As of lately, swallowing is slowly becoming a problem.  Mostly swallowing meats or anything especially chewy.  Instead of the swallow study that directs massive amounts of radiation towards his head, we're opting to have a feeding evaluation where an expert watches him and sees if he could simply revisit some swallow therapy.  He's also got a smaller upper jaw and a ton of teeth that will cause overcrowding and possible ripping of his upper palate...he's slotted for x-rays and decisions will be made from there.  There is a possibility of him simply using a nighttime head gear...this is what we're hoping for and we won't worry until the day they say otherwise.  Why?  Because this is the card we...he's been dealt.  ...he's also got an umbilical hernia...we simply watch it and as long as there is no major pain or problem it's not going to be touched unless he's slotted for a surgery for something else.  He's also got some crazy old-school stitch from his g-tube repair that somehow has poked out of his stomach and occasionally gets infected...we watch it until the day he'll get that hernia repaired.  He's also got ear drums that are shaped the opposite of the way they're supposed to go but to date, fluid has stayed away and we get him tested every 6 months or wait for him to complain of pain or notice hearing issues.   .......he's a tough kiddo and one day, he's going to really understand how he's a complete, amazing wonder.    .......the school has wanted him tested because of delays but we asked for them to wait a year since really, of course he's had delays.  This past semester of school, he seems to finally have really been picking up learning sounds.

Sawyer has Autism.  He's not high functioning and he's not low functioning.  We're kind of past hating these terms.  He's totally verbal and a bit quirky.  We've had a few school issues and he's had a few personal issues that we were afraid meant he has been regressing.    ......Sawyer has had interventions since he was 2.  ABA therapy, speech, social groups, occupational therapy, a psychologist, now a psychiatrist...... most of it has felt like wasted money.  I'm not even kidding.  The bulk of his therapies have always felt if there was some master autism plan and he just didn't fit in it.

  .........yesterday was a rough day.  We finally got to see what our pediatrician calls the wonderful, triple threat (pediatrician, childhood psychiatrist, plus autism expert) and yes, he was great.  He was also the bastard that made me cry and feel a bit hopeless...and the guy who has me up at 3 ready to take care of business.  I'm going to make my own damn social group for Sawyer.  It'll be called the Local Social.  I'll figure out how to make this a real thing because the group I was guided to yesterday has a wait of 8 to 12 months and boy, it's going to be crazy expensive once we get in there and who knows if it'll even help him....also, the last place we went to...the place that has been THE place...was ridiculous for our needs.  It was a ton of money and for higher functioning kids.  I had to actually ask for a print out of what was actually discussed for an hour and a half because I was thoroughly confused when I'd ask Sawyer what they talked about......plus, the group leader would come out letting me know how Sawyer went off topic and didn't seem to understand what they were aiming for.   HMMMMM....

Sawyer has a moderate language disorder.  Two years ago the University of Utah tested him and the bulk of his issues were with expressing himself...or expressive language disorder.  Recently, we went back for the same testing and his issues are showing with both what he understands and what he expresses....or receptive/expressive language disorder.  Any basic idiot that sits and pays attention to Sawyer will know there is something going on ....the experts are needed to pinpoint things....but us basic laypeople can get a clue that he's got social and communication issues.

Sawyer's school year hasn't been all that easy.  He's smart to the point of he can read well for first grade...really well.  He's been pretty good with spelling  and has a great capacity for memorizing.....but........BUT, these language issues very much come into play when he doesn't always recall what he's reading or understand what he's memorizing.  His grades have slowly declined as work has gotten harder and asked more of comprehension in the Language Arts...it's not really surprising when you take two seconds to think about it. ....Math is also starting to get harder for him.

The great triple threat doctor asked me yesterday if I could ask him one question, what would it be.  After circling subjects, feeling enlightened, feeling puffed up with compliments of my great parenting and doing the best I can....I finally built up the courage to ask when was this going to get easier and was Sawyer going to be just fine by 18.   I over spoke him and said that I've read so much and it seems that it should get easier....he chuckled...actually smiled with a little laugh and asked me what on earth was I reading.    ......ummmm...can you feel the deflation and tears???  He said no, it was highly doubtful that things would get easier.  Sawyer is not necessarily high functioning just because he can talk.  He has anxiety and that tends to get worse the more he misunderstands or feels misunderstood.  He gets incredibly quirky and visibly 'different' when he's anxious...he looks off and walks a bit different and his hands go up....he's either excited or a little fearful when you see this...he sometimes will meow or growl.  Because home is his safe place, he can get incomprehensible and yell if he's really upset.  .......apparently, as you age, people don't just smile that you said something sort of off and slightly 'weird'.  He's of that autism that is totally off socially and his communication skills are perplexing to say the least.  He's not got savant skills (as of yet) and he's not making the more obvious low functioning noises or gestures......he's the middle guy...the one you'll just wonder why he's acting and talking a certain way.  This incredible doctor and kind man said that most kiddos like Sawyer enter a sort of vicious circle of anxieties all based on his communication faults.....communication and socializing sort of go hand in hand.  The kids that get 'easier'...that become more 'typical'....that have a tough time but can integrate....they tend to learn how to communicate and they learn how to be social...... learning these things can become second nature just as if you practice anything day in and day out.  ....but most of these 'higher functioning' kids, do not have a lower capacity for learning.  They tend to have much better communication skills.....and this isn't to say they didn't work like crazy to get there........but the point is, they got there and Sawyer has not.  Sawyer isn't regressing...this is simply his autism.  ....and bluntly, Sawyer's sort of alone, already...in 1st grade!, at recess.  The good doctor said you can learn most of what you need to know just by watching them during recess.  Who knew....

Fortunately for me, deep down, I think I already knew the answers to my burning questions because this past weekend I took to our local community facebook page and asked if anyone was interested in forming a social group this summer due to a personal need and really, the expense.  Surprisingly, or maybe not so, there are already 12 people interested and I'm betting the number goes up.

I was really upset with that doctor yesterday.  I came home and cried like I haven't in a long time.  Checking mail yesterday, a friend sent a gift that really was a well timed blessing...and then we also had a letter saying that our beloved surgeon that's been with Connor from the beginning was leaving Utah to head the Vanderbilt University Cleft/Craniofacial team.  .......man, can we just say yesterday was rough.  .......Mikey came home and I cried some more.  I don't recall crying when Sawyer was professed as having autism...I suppose because we already knew.  Being told that your baby...and they all become your babies in these moments.....is not going to fly the coop in the way you think, is a low moment.  ........but thank God, I'm me.  I've got faults aplenty but I tend to not stay down too long.

The great triple threat doctor gave us the number to a place that'll do in-school ABA and also evaluate what's happening at school.  He also gave us a number for a new social group and when I asked him what he thought of me doing my own social group, he gave his blessing and said he felt guilty for not thinking of that himself (his son happens to be a non-verbal child with autism and down syndrome).  He said even if the children do not necessarily stick with the curriculum (that I was given by one of Sawyer's therapist)...the point was to have him socializing.  ......so to keep you up, of course our insurance doesn't cover either places he gave us and the social group has an 8-12 month waiting list.  We're not too worried because with a call this morning, I should be able to get letters that'll satisfy insurance and I'm going to get to work on forming my own social group.  Another mother messaged that she was willing to help and I figure I'll call our community 'building' and see if they can offer up a room or two once a week this summer for a few hours.  I can't seem to get it together to write a book but I can maybe do a flyer for a social group...and I like the sound of the Local Social.  We're probably not the only people needing the benefit of something like this.

    .......I'm also going to call our state parent center and finally utilize their services.  I'm thinking Sawyer's IEP (individual education plan) needs looked over with a fine tooth comb and I need to know exactly what he's doing when he's at resource class and if he is getting the services he's entitled to. 

Okay.....that's the end of my typing...here's a few pics.  Peace...Love...Joy....always.  Happy almost Easter!

and to add a quick P.S.  ....please don't berate the doctor because his message was conveyed gently and kindly despite that initial chuckle...and it didn't feel hopeless though that was an initial reaction...we know very much what he was saying and we also know Sawyer has crazy amounts of potential.  And for both boys, prayers and well wishes are always welcome.

Connor's gift from the surgical dentist...

Newest member of our family...Lucian...adorable and I don't see him nearly enough.

Sophie, Connor and I being bums and taking a selfie.

Typical pre-appointment for something scene.

Sawyer lost his first tooth!!

This was before Sawyer had his university testing.

Sawyer slightly nervous about holding Lucian....no worries, he was surrounded...and on the floor...and Sawyer loves Lucian and gets a bit upset we don't see him more.

Last pic of all of us...we went on the Air Force base to sled a bit....it was crazy freezing!!!!!!



Monday, March 12, 2018

A random Day in the life....


This was a random day last week. (in February maybe?!) ........we only show what we want or feel comfortable sharing but man, life has felt stressful lately.  There are things you can't share because others wouldn't appreciate that and I totally get that.  ......I've got family I miss, family I worry about due to illnesses, those I worry about because they seem unreachable, there are friends going through such tough times, a friend's son having a crazy, unexplainable illness, my own feelings of having put everyone else first for years upon years.......my sons having things going on...one becoming a father soon and stressing about so much, an autistic son that has unexplainably started going backwards in areas that seem to private to put in the world right now...another son that has the school wanting to test him and we feel it must simply wait a year (after conversing about medical needs he has already, the school understood and even agreed that he's only 5....so....more tests can wait).    ........ugh, but we face the days and row our boat.  Each day is going to have that sun rise and fall regardless of any worries, so we might as well focus on the beauty and the good.  I can not explain my beliefs so simply but I believe in prayer and giving things to God...so I do this.  I do it constantly....it's basically my meditation of being present and eeking out the good.   .......and when I'm rowing, I really do try to see the beauty and sort of let go anything that I can't change.   ..............anywho, enough lamenting.




My Soybean up at an ungodly hour!!!....sort of like his Mama

My Con-con woke up waaaay too early.

A little breakfast.....we got that table a few months ago.  I'm giving the other table that I had to Tristan.  I have had my older table since he was a baby and it feels right giving it to him when he's starting his own family.  .......we have paint and staining plans for this table that expands if we need to.

We have an alarm system that works for us.  This little guy used to be awful about arguing or getting upset if his morning was disrupted by me needing him to get dressed or brush his teeth or put on shoes.  BUT...we discovered an app with multiple programable alarms and once they go off, the boys know it's time to do something.  Somehow, this is magic for us.  We even use our Alexa (Amazon Echo) and Hey Google (google home) for alarms at random (game time, tv time, etc.).

Connor and his Christmas Cat/gift...Wheezie.  

Sawyer and his Christmas cat/gift Sophie.

random, outside......we're up EARLY around here.

Cool dishes from the hubby...  I ridiculously love nice bowls and dishes.

Connor and Sophie.

Random Connor sighting...I'm most likely finishing up something private and not really getting to be private!  😉

I'm trying to give a hoot about a little makeup now that I'm past a certain natural glow....

Where is Sawyer?....random floor play....we try to limit show watching...though we could limit even more.

This guy could eat spaghetti-o's 24/7....and we remind him to actually chew because he thinks you just swallow them like a drink.

Random message from a book I probably am reading...empty amazon box...God bless recycling because it's a problem....

I should sell these books....Usborne really does have awesome kids books.

Awesome picture of my Soybean.  He's such a photogenic little guy.

We broke down and bought an x-box...for social, educational reasons we tell ourselves.  We only have minecraft and so far, it's enough.

Good night, sweet heart.

Go to bed, sweetheart....

Tuesday, January 23, 2018

2017 photo dump

I haven't blogged in forever.....there hasn't been any rhyme or reason to it....I changed the name....started to think of blogging about various subjects....and basically, stalled.  No reason...simply didn't do it.  Now, I figure it's still January of 2018, so I'll start.  I'm going to simply blog for myself...as in making myself take pictures, write words ...then post.  That's it.  .........BUT, I do consider this a mild form of scrapbooking so will throw out pics from last year for posterity's sake.













Originally, the plan was waaaaay more pictures but for what's important's sake......this will do.  It was an awesome year of travels, new things, seeing family and prioritizing our own family.  This year, I'm wanting to add more in here to keep up with what we're doing.....and really, I'm doing it for purely selfish reasons.  I have a tendency to drop into depressive states despite all that's good in my life so this is a good way to chronicle and share with myself...and share with anyone else who happens to jump in here.  ..........off to a great 2018.


Saturday, December 2, 2017

My 'I am a badass" post

Okay....I'm an awful blogger...awful...but it seems I use this blog to put things out in the world and to explain things that may help others so that's what I'm going to do here.  .......usually, I'm boasting about my family or how I view things that nine times out of ten have everything to do with my children.  ....not today.
I'm entering a new phase in life where soon both of my youngest boys will be in school all day and I want to work....I just don't want to work in the stressful environment I've worked in since I was 17.
Sooooo........long story short, this post is about STEM (Science, Technology, Engineering, Math) and how I'm the one you want teaching this...it's about NDI (Non Destructive Inspection or some say ndt non-destructive testing).....it's a bit about how I'm a badass and though people throw those words around, they want you to sort of justify that...people want to know how on earth you're qualified to teach when you have no degree.

So, Hi, I'm Chanda.  44 years old with 3 boys.  I've got an angel girl under my belt.  One of my guys is grown and making me a grandma this year.  We're excited about that.  One of my guys is Autistic.  Sometimes he feels high functioning and other days we're cleaning dirty underwear and channeling our inner yogi.  My youngest guy has Pierre Robin.  He had some pretty severe things going on in his first 3 years of life, he's still got some things going on, and he's constantly 'watched' because as he grows, he's got more 'things' that will most likely require surgeries and intervention.  The angel wasn't with us very long but she gave us quite the education from the womb and then her 11 short days on earth.  ..........and yes, I'm more than a  mom.  I've worked since I was 17 and even when I had some stints where my pay was not from an outsider, I've worked and I've worked hard.  I'm a lifelong learner as well.  I do this from interest, joy and sometimes necessity.  I know some stuff...and I'm very much putting that lightly.

Recently I interviewed to help kids with retention needs.  Those kids that need help with reading or math.  Those kids that are behind. ....I'm uniquely qualified and yet anyone can help a kid here with a simple question that I learned from my cousin's husband (shout out to Sarah and her educator hubby, Zack)...if your kid has trouble reading or you have trouble understanding where they're coming from ask them 'what do you see?'....expand that thought when you're with them and within yourself and things will happen.  Expand that one simple thought and it's truly mind blowing.  ....I'm not even going to go into this but trust me, try it.   ....learn about confirmation bias, apply this basic step.....and POW!...you're expanding, my friend.

Now during this interview, I was asked my work history and some life history. .....what a loaded history and one that I summed up as I loved the opportunities I have had, I love the life lessons and the practical applications but I was ready to move beyond a constant justification of my skills and to simply help.  I no longer wanted the stress of being the only woman on a job site or arguing about why something passed or failed in the aerospace, construction, amusement park, etc. worlds....I had learned to live on one income and the money was no longer a big issue.  I love kids and have a knack with younger children.  As for my personal life, I didn't expand too much but said that my children have truly taught me patience to the point I can truly let go in a crisis moment to be calm enough to take care of whatever needs taken care of in a given moment.  I've taken nursing classes for the benefit of what my children needed at any given moment but I'm definitely not a qualified nurse...simply qualified for my own and know enough to possibly help in an emergency.  As for teaching, I'm qualified to teach Sunday School (don't laugh).  I've had a room of 18 first graders and commended myself for not going nuts and somehow getting the little goobers to actually learn something, have fun and leave me gifts because for some reason they really like me.  As for NDI, I'm your woman here.  I've worked in that career field and it opened doors.  ....who knew that one little interview was going to open such an awesome door with a call back and some chit-chats??!!

Let me give you a small education on NDI....very small....just enough to respect those that choose to do this.  .......I never chose it actually.  I went into the USAF to become a nurse...please don't tell my mama but I was kicked out of that program for underage drinking.  ....yeah...not cool.  I nearly got kicked out of the Air Force but lucky me scored incredibly high on the math section of the ASVAB (basically, the military's test to see where they can put your butt and where you'll be useful).  Not so lucky me scored incredibly low on mechanical comprehension but since Chanute AFB, IL was closing soon and they needed people in the NDI career field, yours truly got sent from sunny San Antonio, Texas to a very cold Illinois.....it was a winter move....nice.

And the drinking thing?  I'm grateful I got scared out of my wits because it very well saved my reputation and my future.  ....plus, it's a hilarious story when you know the entire story...another day though.  ....the low mechanical score?...you learn as you go and you tend to not forget because you were always the youngest, the lowest ranking and the one always having to let the older guys chill out....funny but I learned tons because I rarely had the choice to sit on my butt.

I had a knack for NDI education.  Little did I know that with this career choice, I would be testing every time I seemed to turn around.  If you truly want to understand the career...google it.  We check for stress and wear and tear, cracking and such so catastrophic events do not take place.  We do this in a manner that isn't destructive.  We learn how to use ultrasounds, eddy currents, magnetic fields, x-rays, viscous and elastic properties.....we're far from dumb folks.   And yes, since the technology is continuously changing, we test for each of these properties on average, every 2 years.  We're a certification kind of career.  We need to know a bit more than how to turn on the machine....once you're outside of the military, you better know your stuff to stay employed and actually worth your signature.  So am I qualified to teach STEM?  You bet your sweet ass I am.

In addition to years of NDI, I also certified as a CWI, a certified weld inspector.  Google that too if you need to know more but basically, my initials are throughout the state of Utah (and quite a bit of Ohio) and many surrounding states because I'm the one that made sure materials were qualified to be used, I made sure those hospital steps were worthy of standing on, I signed off that yes, that dental equipment isn't going to fall in your lap if the earth shakes a bit and yes, if you walk out on that crazy Plexiglas structure over the Grand Canyon, yours truly made sure the structure will hold your bum and the 49 others with you.  From the ground up, an engineer or architect or financing genius built it all on paper or a computer....I and all the NDI and CWI folks made sure those forms and programs were acted upon and could stand water.  Am I simplifying all this? Yes  ....am I embellishing this?  No.  ....we test constantly and we know more than the average bear about much of what holds our material world together and how easily it can come apart.  ..........and to keep this short, we end up learning to read drawings well, we can decipher contracts and technical jargon, we know what is good and what is not....we can manipulate our machines to see if that massive bolt that contains the stress of 50 plus bodies floating in the air of some awesome amusement park ride will not send you flailing to your imminent death.  ......and if the plane goes down, we will even test to see if yes, it was a fan blade that cracked and indeed caused catastrophic damage...you might want to start testing those periodically.

Now STEM and me....  If you come to a STEM class, you're not being graded.  You are most likely learning real world application.  You're also coming to me because a test score said you should (I kind of don't like this but it's the way it is right now).  It's sort of today's shop class.  If I teach 8 kids math....I'm teaching a scenario.  I'm asking if you have 4 glass cases in your bakery and need this much product here and here...and this much money...and this much profit....how do we do this?  If you have a special needs kid that must take in so many ounces of fluid per hour, how do you come up with the right answer considering weight and other factors?  If you're coming to me for science or technology ...I'm teaching through experience and real world applications.  If you want your mouse to move this ball on the computer, how are we going to make that happen?  If you want to make a sound wave move in water, how are we going to do this?  ..........you need your traditional teachers but you need someone like me too.

I'm actually also going to be doing a few after school type programs that will fortunately be open to anyone that wants to learn this stuff...because it's fun and makes lots of kids learn why your regular teacher has drilled the 'boring' stuff.  We're also talking about an all girls coding after school program because truly, we're big time under-represented.

Sooooo.....if you want to ask a question, I'll do my best to answer.  I certainly hope I've made those that wonder what on earth I'm doing and how the heck am I qualified learn something.  I'm most likely never going to be the English teacher because clearly, that's not my thing.  But true STEM is emerging and new and so awesome.   .......plus, it's cool to truly, truly know that old dogs can learn new tricks and that self-education matters.  ....what really matters is continuously learning.

That is all.   ....and yes, I am a badass.  We don't own it enough unless we find a meme that's a mere shadow of the light we really hold  ...today, own that title and shine on.  I will.

Wednesday, August 16, 2017

What's Important

Because the news I see is depressing.....here's pics to remind me what's truly important in my life, right now and always.  I hate no one and do my best to love all regardless of party affiliations or color or size or age or religion or any of that nonsensical labeling of our differences.  .....for me and really I think most....we need and want love and the most basic things that equal a full heart, a comfortable home that provides our necessities, and a daily purpose that leads us right back to that full heart and home.  .....The conversation of one most tragic event should not be talked about so much as to believe this was a nation simmering.  Actually the nation at large is full of loving and kind people...I feel certain most people are good and would like to get their work done and get back to those they care about and to the things they enjoy.  Pockets of hate will exist in this world no matter what actions we take.  I value those that are so passionate about the current news but I truly believe the hateful people causing the tragedies simply lack those basics needs of love and home.  I'm not so smart as to know the solution of spreading love versus hate but I think it has something to do with starting at home and modeling to all you meet what is the difference in right and wrong, what is good and kind, what is helpful and loving to your neighbor and the strangers you pass daily.  I think it starts with empathy....understanding and listening to the other before you seek to be understood.  Blame and pointing and being the one that knows better simply leads to two more differences to argue about....how about looking for a win-win.  For today my win-win is I understand people are upset and I pray they can find some peace because they surely have work to be done that has nothing to do with the 24/7 news going on...they want to get home or take care of their home, eat something, love on their people and so forth......

My  Loves...in no particular order...and mainly pics from this last month with a few randoms of the year thrown in......


Nature at Antelope Island

My husband.....

Friends...

My littlest....

Messes/Art.....

Friends.....

Walks...

Seeing my boys love their pets....

Holidays and Traditions....

Sawyer...

Oh no....Chocolate.....

Random yummies with someone I love......

Adorable moments.....

Awww....my baby, Connor....

T-ball...

Planting pumpkins just for friends.....

My first baby......Tristan with the woman we all love, Nika....

Swinging...

Fishing.....

Jumping....

Achieving.....

Fun times!.....

Summer loving......


Fixing and improving.....

Celebrating...

Traveling....

Dreams becoming reality...

Making those memories...

Finding our joys....

My man taking care of us and getting us down to the basics....

Random happy moments.....

Ahhh....my peaceful babies....

Absolute, simple, joy....

Random silliness from my most favorite person.

Connor silliness....

My brave boy.....

The faces of wonder from their first fireworks.....

The wonder of magic from their Pop-pop....

A new interest?......

An expanding, diverse, awesome, instantly loved family....

Little boys......

Cousins....

Grandma time....

Travel memories.....

Hummingbird discoveries.....

Random Picnics....

Grandparents.....


Family....

Lottery dreaming with Pap-pap...

Pigging out Amish style....

Putt-putt....

3 generations.....


Friends turned family.....

Simple, awesome, beautiful times....

Long time friends...

Uncles going that extra mile.....

Games/Cheating Farkle players....

Chicken fights....

Boating.....

Not enough time....

Random beauty of a simpler time.....that's actually right here, right now.....

Powerful random storms that remind you how very small you are....

God showing off.....

So gorgeous....

Beautiful Architecture and time taken to stop and notice.....

Sawyer love....my middle baby....

Connor love...my living symbol of strength....

Celebrating a lifetime of love.....

Celebrating a new life to come...and praying this little one will always know he/she is loved beyond measure and has a beautiful purpose of belonging in this amazing world.