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Wednesday, May 4, 2016

Autism....a true diagnosis...step one

For those that know our family best, they know in 2009 we lost a daughter to a diaphragmatic hernia, I had a miscarriage in early 2010, Sawyer was born healthy in 2011, and Connor was our surprise baby in 2012 with a myriad of issues stemming from Pierre Robin.  I've shared it all in various social media forms and had no qualms with doing anything in sharing these things.  However, I didn't share openly about some things.  Physical ailments that are seen and obvious...that require obvious medical intervention is easy.  ......ailments beyond our sight are harder to explain.  Whether physical or mental.
I came from an upbringing where you handle your business and leave it to yourself.  I won't blame anyone or anything like that but I'll simply say that's not a helpful way to be when you've been dealt major blows that caused deep depression and then had children that needed unconventional therapies.  Mikey and I had all the major genetic testing once Ireland was born with the diaphragmatic hernia where basically we were told all future children would 99.9999999% free of any problems.  Let me tell you, genetics is awesome and helpful but it is not a predictor of all.
Connor being born with Pierre Robin and it affecting more systems than simply a physical fix...we ended up with Early Intervention in our home several times a week for various therapies from feeding to learning how to sit up.  In time, and after too many surgeries, his therapies changed to what basically amounts to listening and speaking...or language and communication.  With Sawyer being so close in age, he joined in those therapy session in our home and sooner or later, one of the therapists suggested that Sawyer may need to look into his own intervention.  .....from my unprofessional and totally haven't looked this all up-knowledge, Early Intervention (EI) is ran by school districts to help children with delays and special needs.  They're an awesome and income (and medical needs/bills) based service that with our (I believe) good middle class income, payed all of about $20 for each month. ......EI works with kids until they're 3 and then enters them in the preschool that has special education services in your area at that point.  Before the age of 3, both boys had various testing for cognitive skills and also various assesments to help show what sort of needs they had before entering the school setting.  Both have shown various delays and therefore entered the Individualized Education Program (IEP) process.....for now, I'm just defining the IEP as the document that sort of bullet points the special education services your child needs.  It states goals for your child and pinpoints any services the school district will provide.  From what I understand, Utah is one of the best states for helping parents with these but as in all states, it's not a perfect system.
Anywho, armed with many books, a great pediatrician, wonderful teachers and many therapists for speech, occupational and behavioral therapies.....both boys have done quite well.  That said, Sawyer is entering kindergarten this fall and the latest IEP meeting left me a bit upset.  Within 5 minutes, my normally controlled and stoic mommy understanding was in tears.   .......good teachers see things that we don't see at home.  Sawyer is quirky.  He has little issues with sensitivities and horrible fits if things aren't going his way.  His conversation skills are horrible though he's highly intelligent with numbers or little facts.  He knows his ABC's and can count to 100.  He can write his name and meets all the goals for starting kindergarten......but there are gaps.  He's a social butterfly and looks you in your eyes.  He walked and talked at normal times.  His growth is off the charts though his appetite is picky as all get out.  He's polite. ......he's a model kid in so many ways.......but ask him to enter a room full of people and you may find him under tables or ask him to be a ring bearer and next thing you know he's ran back in the house and in a closet, if he thinks something is too loud, he's putting his hands to his ears or screaming outside of a hockey ring because a buzzer went off, ask him to eat a few bites of veggies and we're entering a full meltdown that doesn't stop for a good 10 to 20 minutes....or how about read him a story and ask what happened, you'll get some bullet type words but not a story; ask how his day went and you'll get a bizarre rambling of whatever interests him in that moment; ask his phone number and you'll get the answer; he can spell his name, he knows he's 5; let him know that you'll see his friend today after lunch and he'll get upset every 10 minutes that he wants to see his friend (you can explain a gazillion times but he's not getting it).  .............anywho, tons of scenarios and new scenes provided in the form of an IEP and a teacher stating that Sawyer is very much ready for kindergarten but that a special education class may do him more good than a standard class gets your head reeling when you think you've been doing everything possible to set your kiddos up for success.  .........Now it's time to move on to simply telling the pediatrician you feel you're doing it all right and you feel like diagnosing kids at such a young age could alter or hurt their future.  There isn't a good mom out there that isn't worried about her children's future....if you didn't know before now, an educational diagnosis simply stays in files and does not follow a child's future outside of school....a medical diagnosis follows for a lifetime.  Feel that impact for a minute.    ........anywho, I'm not sure where or why or when I got scared of a diagnosis for anything stating my children have delays or Autism or what-have-you but obviously I've had a distaste for ribbons and awareness and puzzle pieces.  Cut me some slack seeing how it's safe to say things have not always been easy and everyone you know has an opinion.  ..........but, I finally said entering school with problems makes it necessary to have a proper diagnosis so I know my children are getting their truest needs met and I'm setting them up for success.  I only was ready for Sawyer to go for this type testing but after learning so much after one professional assessment, I'll be emailing the pediatrician to go ahead and set up testing for Connor (his issues are similar and yet much is different).
.........okay, so hopefully this is easy to follow.  Basically the pediatrician had papers sent to me that I had to fill out and send off to the University of Utah and Department of Health (it looks like the office is sort of a joint office between the two).  In the past, mainly through Early Intervention, I flat out was filling these pages and pages of bubble sheet type tests that spilled out results of "what was wrong" with you little one.  This time, the paperwork simply asked generic questions of family health, birth history, sibling history, and there were questions on what I wanted to learn about my son and what I felt was wrong.  It was about 5 pages and sometimes I felt spacey on how I described things....for instance, I remember stating that we often hear that Sawyer has autism but I didn't think so because he was so social and I felt his issues were more with language.  .......so, I mail this all off along with past tests, scores, reports and his latest IEP and a few weeks later get a call that a "team" has evaluated his packet of information and they've decided he needs a hearing test, a speech evaluation and a visit with the psychologist.  The psychologist is booked out for the next nine months so he'll be put on a wait list for the first available appointment but can get his other appointments right away.

So enter the appointment.  We're told it'll be a 30 minute hearing eval and then a 2 hour speech assessment.  Ears are great...flying colors.  Sawyer is so polite and says his pleases and thank yous and the audiologist is impressed.  Thank you.  We meet 2 ladies for the speech assessment.  They take time to play with Sawyer for a few minutes and then we're off to testing.  I'm told to basically observe and zip it....they did this nicely.   .......There was a variety of play type questions and then the standard flip book with pictures and scenes and questions for him to point at things....he did great with everything the first 10 or so minutes.  Then we enter them asking questions, pointing at grouped items and wanting one word descriptions, theory of mind set ups, ..........now, they're seeing things and so am I. This understanding that he's answering things flat out wrong or in some weird way was the next hour and half.  Honestly, it can get upsetting when you see some of this.  They two testers were so kind and full of encouragements for Sawyer.  They took several breaks and honestly, he did awesome.  .......I thought I wouldn't know a thing once we were done but no, I got a truly major overload of information.  He was average on this and moderately delayed here and there (for those not knowing, delays are measured mild, moderate, severe...), they felt it obvious he'd had good intervention therapies because he did so well with his alphabet and certain skills that were easily memorized and parroted back.  I learned that he has a classic echolalia response to many questions (echolalia is one of those Autism words that I thought simply repeating a word or statement...as in Connor can do this and it's like he's a broken record that keeps skipping back and repeating over and over and over....whereas Sawyer parrots answers to questions that should have his own answers with answers he's heard someone else say)....he's social alright but he's social when it's on his terms (can I just say that was totally enlightening for me and it's dang true and makes me get why he seems perfectly fine when he's running around and playing while I'm talking with friends....yet having a fit and running away or wanting to hide the minute we enter a restaurant or new social setting without kids or entertainment).....anywho, like I said it was information overload.  I did ask if they thought he's what they'd deem high on the spectrum and she said that was a tough thing to answer.  In certain ways, yes and then again, no.  Like the one woman explained, Sawyer seems to have holes in conversations and though all his therapies have helped with many things, they've also missed the major point of him learning how to sort of connect all the dots.   She thinks he can start kindergarten with a regular class since it's only 2 and a half hours but that he definitely needs to be pulled daily to reinforce learning points....and she was honest that time would tell if this was his best course of action.  She did think ABA therapy would be good for him since he has a good attention span and works well while being encouraged........but that will have to wait until we've gotten a full on phsychological eval with a definitive diagnosis.  .........I don't have any of the papers that they went over with me yesterday so have probably left huge gaps in this post but I should have access in the next few days through their MyCharts system.
For now, our next step is to see the psychologist (which they're trying to pull strings to expedite this and also gave me numbers to several others and said take the first appointment we can get) and to call his current therapist and teachers once I have access to the notes and results of the speech pathologists.  She had new suggestions on where we should go from here and once I've got more of an understanding of those things, I'll share.  I was armed with packets of info but it looks like the biggest next step, beyond the psychologist, is to have a new IEP meeting to ensure the new suggestions are put into place before school starts.

Okay....hoping some of that made sense and willing to try to answer questions if you need me to.  I left out so much that was discussed and there is so much more that could be added that I think the general public doesn't understand with a quick Autism "checklist".....but the biggest thing I'm thinking right now is I did what I thought was best all along.  I didn't pretend there were no problems that needed to be addressed but I did detest the thought of yet another child being diagnosed anything.....and really, I'm okay with that.  This is the right time for us.  .......maybe I'll share the new issue soon about how we're hoping to be approved for a new (to me, anyway) program where Connor will hopefully be approved for Medicaid based soley on his own income and health issues.  It's an involved process and something we will be so thankful to have since we've yet to find a true money tree to fund interventions and future surgeries.   .........so please, no judgement.  It's not welcomed or needed.


Fun picture....and let me be honest, it's hard to pick a picture when you're thinking others will look into more than what is there.  This was a fun day, being silly......two unique little guys.

Wednesday, April 20, 2016

Revelations....confessions...Mike Rowe love


I read something so ridiculously profound and simple this morning.  It was Mike Rowe from the show (famous to me), Dirty Jobs.  He was basically talking about blue collar work not being talked about in the respectful manner it should be.  He was so damn right...and his words hit me in a different but HUGE way.  ......I think most of us are dreamers and being bombarded with pictures of the perfect life and how to make your dreams reality or how to make the perfect cake, body, swing, yard, house, marriage, life, etc.  ........UGH!!  It's my life.  FOR REAL.  I am 42 and just realizing how much of a ridiculous dreamer I truly am.  ....I've been trying to "find myself" for freaking ever.  Silly me, I'm right here.  I've been trying to please everyone.  I've been trying to be agreeable and lovely and not make waves or hurt anyone's feelings.  I've craved attention and acceptance and love and all that makes me feel all ooey, gooey, nice and fuzzy.  ....Silly freaking me.  This is all perfectly normal, too.  I've also totally wanted to do my best by myself, my hubby, my kids, my family, my friends....ya know everyone.  All very noble and really, true to myself.  I've also been a huge pinterest, instagram, blog, and facebook lover/stalker.  Social media can be intoxicating with all it's loveliness and connections.  I won't even call it false connection because it's been (at times) awesome for times I've needed to feel connected or to learn something new.  ....that said, I have to sort of monitor my time on it because truly, it can be a total life-sucker, too.  I don't want my hours added up to having spent thousands of hours just wishing for more...........though truth be told, I think even without social media that I've possibly done this.  ............I'm not sure when this started.....this dreaming up the perfect life that made me tons of money just from my pure talent, moxie, and wisdom.  But happen, it did.  .......I'm like a gazillion other dreamers being bombarded (even though well intentioned) of messages about "Follow your Dreams", "Aim High", "Make it Beautiful", "Find your True Calling", "Follow your Passion", ETC., freaking ETC.  .......seriously, I like Mike Rowe's "Don't follow your passion, but Always bring it with you".  I find wisdom there.  I find wisdom in people growing and realizing their reach has exceeded their grasp.  It's not giving up or settling...it's common sense.  ............anywho, so as not to hurt feelings or upset anyone because no matter what, I am still a people pleasing type....I'm just going to continue sharing what it means to me.  I'm going to share what my ever so awesome and sweet cousin has told me is my wisdom.  She is right...I have had some experiences that have given me wisdom....I've also realized we're all embedded with a bit of wisdom...some of us just seem to be born with it and some of us acquire it through education, reading, experience, listening, etc.  I'm the one that was born without it but acquired it through simply living.  
.......I've got a friend that's been adamant about me writing some stories from my life.  God, I love having friends like this.  ....for a gazillion reasons I'm going to do it.  I'm not going to write a book today or even tell anything truly enlightening......I'm just realizing I've figured something out about myself.  I'm a sharer so I'll share.  I do like writing so I'll write...just here on a blog.  I like lots of things and I'll share it here.  I doubt I'll get rich or become famous.  I'll, at some point, probably get with my cool cousin because she says I can make money just writing and sharing my "stuff" and seriously, money is good.  .............also, because I put Mike Rowe in the blog title.......he really is awesome and I agree with so much of his "wisdom".  Look him up sometime.  I could actually totally get behind his 'cause'.





Our side yard......Mikey getting a bit of help from the boys.  ......this is where we planted all of the roses for Ireland.  We want to add fencing around all of this...and it'll happen......but it'll have to wait until next spring.  Budgeting.......it's a real thing.


Sawyer likes to sneak Stormy in the car for rides.


This is the back of our house.  Ugh...sooo not on a DIY show as an after pic....but it's real.  I'd like to add some shutters one day and make this into a screened porch.  For now, the boys enjoy digging under that area that's going to be covered in plants soon (Utah has rules where planting doesn't happen until after Mother's day).  Time for taking off the AC cover hasn't come around quite yet....and really, this weather has been awesome so we're good.


This is the back....that's the fence that we want to finish out to the side and around what's officially Ireland's garden.  In a few more weeks her roses and trees should be in bloom and be pretty and all pinteresty.  For now it's just an open area.  When we have her area fenced, we're also going to figure out the best spot for a fountain we were gifted.  ...excited to have these roses bloom near that bench/half picnic table.  I've also finally discovered that snapdragons and this other flower (that's name escapes me) grows easily and spreads and flourishes like crazy and will be planted around that area with the bench.     ...........that rock monstrosity to the left is our redneck fire pit.


Plum tree is flourishing....


Baby chicks.......we all love them.


More baby chick love.


Sawyer is our total resident pet lover.


This is my ridiculous crafty space/kitchen that has no real purpose upstairs.  Connor was up there doing his thing and making "Mustache Man"....next time I'll actually take a pic of his creation!  Meanwhile, he was being cute doing his thing.


We were learning the camera on my new phone....obviously, a good model choice.


My blackboard kitchen.....that will probably not ever be in a magazine but totally is loved.  We scribble here, write names, decorate in two seconds for birthdays and holidays....everyone needs something chalkboard in their kitchen because seriously, birthday cake tastes better if someone took the time to either write your name out or put some dorky dollar store decorations up.


This is truly my most loved room in the house.  Not the family room upstairs, but our little living room downstairs.  I get crap for moving things around and redecorating and this room gets the brunt of that obsession.  Mikey put in the floor and the wainscotting.  The furniture could seriously be replaced but it works and really, it's the least of my worries in this world.  I love this area and think world peace can be achieved in a totally comfy and personal living room.  My favorite moments beyond a kitchen table or backyard bash is sitting with my friends or seeing our kids vegged out making memories in here or in their respective homes.  ........if you've been in our upstairs rooms, you're kind of in the elite friendship mode.


New camera love........this is another favorite spot in my home.  That book shelf full brings me happiness.  Books are rarely thrown out here though I have given many away.  The shelf up top has Ireland's urn and some angels and such....also, my Grandma and Papa are up there.  The painting was a Father's day creation when the guys were babies.


Camera play.  My other model.  Love him.


Okay....that's it.  Dream #52,gazillion.  .......seriously though, I'm mostly living my dream.  As a girl, I wanted a family of my own.  A husband that loved me, kiddos, a home of my own, a job I loved....the jobs have changed through the years....but essentially, I'm truly a productive member of society in my own right, I make a list most days and achieve most of the things on it......I live well and am thankful.

Tuesday, February 23, 2016

Picture Dump


Sweet pic from the other night.

Exploring at Antelope Island recently.

More Exploring.

A favorite view.

Sawyer with Tristan at his 5th birthday party.

Stormy....aka, fat cat.....so loved.

Sawyer's million dollar gift.  😉

Connor's driver training started early.

Sawyer is just cooler than most of us.
Fact.  😉
Kisses.

Gifts of waterproof pants were appreciated this Christmas.

Mikey's birthday!!

Christmas was awesome.

Annual gingerbread house.

Connor's Christmas picture...I'm pretty sure we cropped this picture to fancy it up.

Sawyer's Christmas picture.

Tuesday, November 24, 2015

My personal greatest gift......bible journaling

Decided not to give any sort of testimony....hopefully my life will simply reflect where I stand....none of us are perfect here.
Anywho, since Thanksgiving is just about here and Christmas is coming up, I thought I'd share something I got into this year.  It's called bible journaling and I learned about it through www.illustratedfaith.com.  It's something I've loved and hopefully one day it'll be a nice keepsake for my kiddos.  For now, it's been something that has only influenced me in the best of ways and my absolute favorite pages are all of my boys' handprints.  I figure I'll be adding my parents and asking a few friends to throw those in here as well.  I also have pockets added here and there with pictures and letters/notes that mean the world to me.   ......wanted to share despite my total lack of artistry.  I personally just write things (prayers, scripture meanings, sermon notes, etc.), add 'stuff', stamp, sticker things, and keep this as sort of my own little communication of what's most important in my life.

This was bought on Amazon as an ESV journaling bible.  They have single and double column pages.  When this bible is filled up, I'll definitely get the single column.  I feel a bit limited with the double column.


These are photo pockets that go with project life....a quick google will explain project life.


Genesis 2:24-25 .....my love of this is from the thought of neither Adam or Eve feeling shame.  I find that incredibly powerful.

Psalm 23

Sawyer's hand print...if you look at the top of this page, I made a tab from his picture....I also date most everything.  This is Psalm 113:9.....I may not have been barren but at my age and having lost Ireland before him, his life brought me TONS of joy!

Tristan was not exempt from giving me his hand print.  Psalm 127:3-5.  He was my unexpected gift when I was young.

Lord's prayer.....Matthew 6:9-14

Be childlike....Matthew 18:3-5

So much in Luke....this is near the Beatitudes Luke 6: 20-23

Luke 2: 49  .........parents looking for Jesus when he was just 12.

my Shake it off page...very corny but still love it... Luke 9: 5....for an emotional type like myself, it's important to remember.

some personal stuff behind that pic...love my husband.

just showing you can write personal notes and hide it behind a pic or something taped in there....obviously only so personal but I like doing this for little prayers and such.....nice to look back

behind that taped in piece


Ephesians 1: 7-10  my 'work it' page

Philippians 4: 4-7  4: 13  ..........the secret to a happy life is simple

Another favorite....Colossians 2: 6-7 ...where I'm rooted.....also from 3:12-14 to remember forgiveness is not an option when you were forgiven so much....  (side note: forgiveness doesn't have to come without setting boundaries, it's just letting it go since God gives the ultimate justice, Romans 12:19 ....yeah, I just preached.....from latest sermon notes.)

just marking up 1 Thessalonians from a class I took with some awesome ladies.


Connor's page...James 1: 17-18 ....he is most definitely a good and perfect gift.


My to do list....James 2: 17

1 Peter 3:15 ....my reason to love ALL with gentleness and respect.  I have a real issue with anyone who preaches to others in a higher than thou way or those that will point out other's wrongs.  I believe in the Holy Trinity and definitely believe in the word of God....and with that, I strive to live through He who lives in me always remembering that I'm supposed to be an example not a judge.....(and constantly remembering to ask for forgiveness in my gazillion screw ups....remember, I try but am human)

some notes I've pocketed in the back

My own hand print.....one day this may mean something to those that love me.  It's my goals page....Galatians 5: 22-23


Exodus 31: 3-5

proof I'm an awful artist but still like doing my thing....  Exodus 36: 1



Psalm 98 ...joyful noise

Close up of Sawyer's page...

Ireland's page....Psalm 139: 14 .....she was fearfully and wonderfully made

Proverbs 31: 25 ....I like to dwell on her laughing at the time

Ecclesiastes 3: 1-8  A time for everything.....

Isaiah 49: 15-17  Inscribed on the palm of His hand....

Ecclesiastes 9: 7-10  Enjoy this life....

OK....I'll stop now.  It's something I love and thought my fellow Christian peeps would possibly enjoy either doing this or sharing the idea this season.