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Wednesday, February 5, 2014

CDH, Pierre Robin, Craniosynostosis, Autism, etc.

Whoa....2 months with no blogging.  As always, it's been awhile but hey, it's how this life is going.
There's been snow, Christmas, New Year's, Dr's appointments, eye appointments, first regular dental visits, a new diagnosis in the family, early intervention, med changes, a birthday, ........we stay busy.
      To cut to the chase, I'm blogging today because recently Sawyer had an Autism diagnosis and I've made some comments here and there.  I want to simply put our view out in the world a bit to understand where we stand.
     I think it's safe to say our family is unique in what is traditionally called a special needs family.  Mikey and I also choose to believe all families are special and that labels do no one any good outside of the medical and educational system (as for our children and ourselves).  The medical community obviously needs a diagnosis to help treat and the educational system is an extension of your personal community that may need to approach needs in a different way.  ........one thing we're learning is that medical special needs are pretty much a permanent file that follows you, as in from birth to death, ...once this has happened, it can't be changed.  An educational file is not permanent in the sense that things can be changed, labels dropped, or labels never even needed.
     Connor's diagnosis of Pierre Robin and Craniosynostosis (his head shape has been added in the file due to his scalp fused uniquely and made a bit of a boney mohawk that simply means as he grows he'll need yearly checks for pressure to make sure his brain always has room to grow).....anywho, Connor's diagnoses will permanently be in his medical file as they will and can affect his future health.  Connor's early intervention has been dropped so once he starts school, unless he needs speech or something else comes up, there will be no need for the elementary schools to know he ever needed assistance in any learning areas.
     Sawyer's diagnosis of Autism is strictly from the early intervention team's psychologist.  Because he recently turned 3, he transitioned from early intervention therapies in the home to services in the school district...basically, he's enrolled into public preschool.  Before he started the preschool, which he only started yesterday, we met with several people for evaluations on exactly what he needed and the something called an IEP (individual education plan) which lays out quite specifically what he needs from the education system for his particular needs.  .......a few things about Sawyer's diagnosis.  From what I'm learning there is high functioning and low functioning.  High functioning in it's simplest of definitions (according to me) means they have a few issues but can blend into society just fine with a bit of learning.  Low functioning (my definition) is a much more severe case of autism that needs far more interventions than typical public services can handle.  .......Anywho, going with my definition, Sawyer is high functioning in several areas and a sort of middle ground right now in more organized social settings (hard to come up with that one).  According to his autistic tests though, he's high functioning here and there and in other areas he's not exactly high ...he just needs help figuring some things out.  Truth be known, I still don't understand all the technicalities.  He has things called T scores and that has another paper that has things saying elevated, highly elevated, below average, etc.  He has a paper with an average shaded in the middle and marks to the far right,outside the average and then things to the left outside of the gray area.  I initially thought anything graphed to the far right of average would mean he was a genius and things to the left would mean he needs help.  Somehow, I'm way off base there.  It meant he really needed help because he was below average or simply way out in left field.  ...........anywho, he's got some things going on.  His speech is better at home then outside of the home and even in the house there is obvious things going on.  It can be very hard to decipher what he wants sometimes.  His behavior is erratic.  That's my best thoughts on that right now.  He is socially...hmm...different.  He does fine with others when he can run around, he's not so fine in a controlled environment and can easily get upset (meaning scream or smack at himself or want to be off to himself or want to throw things, etc.).  Most people don't see this part because we tend to stick with the friends who let him run around and do his own thing.  .......So beyond the stack of papers that go into major details of what he needs and exactly how he speaks or acts or socializes, he's considered autistic only in the educational system.  ..........however, we had his 3 year well baby appointment at the doctor's office.  Sawyer has 2 evaluations that have been set up for over a year now to see a medical setting sort of psychologist.  We may go ahead with that testing but I asked my doctor not to categorize him in his medical records as being autistic.  Basically, here in our place in the world, standard procedure is he was seen by a psychologist, he took the tests, and therefore will be considered special needs for services in the educational and medical community.  We decided we do not want this in his medical files just yet because at 3, we believe maybe he just has some quirks that he can work out being in a more social setting with his preschool and in a staff that knows the way to teach him.  .........My doctor seemed skeptical, she has known us for some time so I do respect her thoughts but ultimately, I said no to calling him anything just yet.  I don't want this label to follow him if he ends up being that totally high functioning kid that people would never even know he's got anything going on.
......so, in a nutshell, that's our feelings.  We admittedly have a lot to learn with autism.  Our beloved pediatrician is still going to go ahead and at least send us some information she believes we need to read.  She's a bit concerned of our non acceptance right now but says she also understands where we're coming from (she has a 4 year old and 2 year old in her own house).  She knows we're label haters...despite our sincere love for all the advocates out there that give us so much information.  We're probably walking contradictions....I'll leave that for you to decide.  ........and really, we're not NOT accepting autism....we actually are beyond aware that Sawyer has things going on....we just are in that stage that surely with a bit of learning, his speech will get better and his social behaviors will change as he sees what's acceptable and what's not.  ......and for the record, he will look people in the eye.  He likes to line things up, but so does Connor....heck, Tristan probably did that too.  But I will say, that when others tell me their personal horror stories, I'm so thankful for their sharing that their kid does weird things too........but at the same time, part of me thinks, you have no idea.  Yes, see, I know he's got autism deep down.  He does things that in my head he knows better and yet.......he doesn't.  So so very hard to explain.  Also, it's not a he's-usually-good or usually-bad thing....it's a this is a constant who he is thing.  Daily.  Screaming everyday for seemingly nothing.  Constant running around.  Horrible sleeping and naps are on if he wants versus if he doesn't and those who know me, know my boys have a scheduled life....not strict but predictable.  ..............anywho, I don't know enough to go on.  Sawyer got a label.  We believe it fits him but even if clinically he fits this description for a lifetime, we prefer he not have the label so as not to put him in a box.

So, why I labeled my blog post as I did is because I feel pressure that certain people in the various communities we are connected to because of our children, expect us to advocate.  I made comments that were not very nice, on hindsight, about not going around wearing puzzle pieces with Sawyer's name on them (a typical autism sign is the puzzle piece).  I apologize for that.  Really, it was not very sensitive to others and I should not have said it.   ........moving on, I'm so thankful for all those advocates.  Really.  We wouldn't have anywhere near the information if it weren't for these people.    ..........BUT, I am needing to do the best I can for my very own family.  We've had a daughter with a congenital diaphragmatic hernia, a son born with Pierre Robin, a cleft palate, craniosynostosis, feeding problems requiring a g tube.  We now learn Sawyer has autism.  I was diagnosed with legit depression and only in the past few years learned my birth mother had me taken from her because she had such severe depression the state of VA took me from her...apparently depression is genetic, so my doctor says it's sort of a given that losing a daughter would spiral me into a pretty bad depression that needs meds.  I then get PTSD (post traumatic stress disorder) when I have Connor and am pretty freaked out that I'm going to lose another baby.  Who knew PTSD is not just for those facing war scenes but those facing life battles?!  ........so, for my family, which condition should I advocate for?  I choose to speak about each, share what I can, help who I can....  I openly talk about death and depression and topics that are not exactly popular to make a dime in the blogging world.  I check out where the money is actually going to with many of these advocates because quite honestly, I see more talk than giving with some....anywho, a big topic for another day.    bottom line:  I do feel like I advocate.  If someone were to sell me a shirt with a puzzle piece and Sawyer's name on it and I knew that money was truly going to help someone, yes, I'd wear that thing.  I'd buy the buttons for Ireland and the pants for Connor and a pair of shades with wellbutrin xl taped to the sides for myself.  ......the thing is, I've got more fliers and return address labels then I care to share when we tend to give a bit of money, and it sort of ticks me off (once again, a rant for another day).  I'm also a tad upset when I've been asked to contribute to blogs or links and then sent a mile long list of what they require (did you ask for me to share or are you adding something ridiculous to my to do list) .........anywho, I'm doing that middle of the night rambling thing.  I think I covered Sawyer a bit..........Connor hasn't had too much going on though he's finally taking meds completely by mouth (YAY!!) so hopefully he can finally rid himself of that g tube.  Also, Connor now has to have the g tube taped up so he doesn't pull it out or scoot on furniture and rip it out.......Tristan is ok with me ranting about him with some things, but not others, so I'm respecting his wishes by not saying too much about him.  He's a pain in the butt.  He's also so loved.  He's a teenager getting ready to graduate and find himself.  Mikey and I are doing well as always.  Ups, Downs, Life.  My medicine had to change....I was on 20mg of Celexa that I had to double up on from time to time.  It had me gaining weight and just feeling tired constantly so I've changed to Wellbutrin XL 300mg.  I've only used this for just over a week but apparently, my energy should come back.  The first week it had me buzzing and not sleeping well at night, which I was warned about.  I've been told to stick with it and I should begin feeling the effects in about 3 weeks.  ...........also, if you haven't read facebook posts, I'm starting my journey to become a bonafide nurse.  I have to start from the beginning and my prior credits from college do not apply since they were not courses taken within the past 2 years...bummer.  I'll be starting the first step for a CNA (certified nurse assistant) in a few weeks.
..........ok....long post......here's some pics from the past two months.


Been a cold, cold winter.  Not tons of snow but enough that we haven't seen much of our yard.


Cutie.


Connor likes to help out in the kitchen.


Light viewing during Christmas.


The train obsessed Sawyer barely noticed he had other gifts...and was a tad upset if you took him from this train.


A very good Christmas.


Connor had to get his eyes dilated to check for pressure build up.  He looked great!


Connor's first regular dental appointment went really well.


Sawyer sort of shocked us by being just fine at the dentist' office.  He sort of ran around the halls but they did have train scenes everywhere....it's a pediatric office that is perfectly ok with that.


Love that face.


Sawyer has a thing for going under tables.  He's even gotten out of bed at night, freaked us out and we found him under a covered decorative table.  We now have bolts on all doors because he gets up in the middle of the night and occasionally, wanders outside of his room.


Sawyer would play games all day if you let him, and Connor has become the ultimate ham.  :D


A typical before bed scene.  These guys eat dinner, play around, do the bathroom and change clothes routine, then get to watch a bit of a movie before they are read to and laid down for bed.  The one change I've made for myself is their bath nights alternate and they can have a shared bath on the weekend.  These guys splash and have a blast together.  Totally cute and cool but I end up soaked, along with the bathroom, and neither get too terribly clean.  ......this one little change has relaxed all of us a bit more.  The guys even seem perfectly fine with this change though the one not taking a bath occasionally feels the need to throw their hands in the bath water to splash for a minute.  :D


Hilarious.  Tristan had fallen asleep.  These guys were offering part of their snack and talking/whispering for him to get up.  .......Tristan slept through it all.


Some light reading.  We've come down hard with tv and gaming time.  Sawyer can watch in the morning while Connor and Mikey are still asleep but then it's off for the day.  On occasion, I'll play a Thomas the Train or Sesame Street episode if Sawyer hasn't napped or it's just one of those days.


One of the presents Sawyer got on his birthday.  We spaced out his gift giving a bit since Christmas proved that he was not the tear open every package kind of guy.


I'm not sure what he was thinking but he loooooved the Thomas the train cake/cupcakes.  He turned 3 and had a great party with some of our friends.  The kids ran around and he loved all of his gifts.  It was also nice that he had some helpers unwrap gifts.  Very successful birthday party.


Most hilarious scene of the Super Bowl was Connor's constant feeding tiny, tiny amounts of food to Lucky dog.  And for the record, we were rooting for Seattle, though I really started feeling sorry for the Broncos...and then sort of wondering if the Broncos realized this was the Super Bowl.


I love crafty gifts and especially love appreciate the time people put into these type gifts.  Sawyer got this really cool ninja turtle (Raphael) and even Connor got one.


Sawyer's first day of preschool.  He cried a bit and according to the teacher, stayed under a table for awhile and then came out to join the class.  ...when I came to pick him up one of the teacher's was with Sawyer trying to get him to join the group to get their book bags and coats.  I'm not too worried yet, I'd imagine it'll take some time to see improvements.  He did seem to have had a good time.


Elmo/Connor.....oh this one likes his smile...and so do we!


just a nice shot of the Christmas tree....I sure love twinkly lights.

Ok, that's it.  I'm done making any unkempt promises on this blog.  I'll be back when the mood strikes.  :D




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