Monday, October 8, 2012

Lots to quickly catch up on..

There is tons to catch up on!

Where to start?

August prompted my search for a final diagnosis on what is going on with Colin.  It takes tons of patience for me to become frustrated with a situation, however, things have become progressively worse with Colins behavior and communication skills which made me seek help for him.  It's actually regressed vs. progressed.  For example, prior to 2 years he was completely articulate but would develop large word vocabulary from an early age.  Such as 16 months he could already point at an upper case A or lower case a and let you know exactly what it was..not only that he would tell you ever letter on the vocabulary list what was upper and lower case if you asked him or he'd prompt it himself.  He'd do this in books, license plates on cars, at the store if he could see it, everywhere.  It shocked me as he was very precise.  None of my kids were spot on at such a youthful age.  Braeten, my youngest right now, doesn't even say nearly what he did yet it's actually very little what he really has to say at 17 months.

The age around 3years came where he started to regress on his speech.  He started to stop articulation of letters with complete fluid sentences with out a hitch to starting to say lots of words with more of what I call a round sound to it.  For example, L's were W's and G's were D's where Logan was now called Woden, etc.  I think I even have some of these durations on video.  Near the age of 4 he started to progressively stutter which become worse as the months pass and even now.  He now not only stutters but 'checks out' during conversations.  He will mentally dissolve from one discussion, forget it entirely, and be in his own world talking about something else.  This isn't a normal toddler situation.  It happens even in the simplest ways that you wouldn't think it'd happen which it happens for everyone.  You can tell him that you have a brand new Thomas toy for him and if he didn't 'snap' out of this 'world' he wouldn't respond to you.  It's hard.  You have to repeat yourself over and over and over and louder, use touch, soft words.  You just never know when he'll *snap* out of it.  Mind you, it doesn't last like 10 minutes but it does at least potentially last a good 1-3 minute durations which wasn't there prior to.

Now to tie this altogether on catching up to previous situations.  The perfect example of this 'fading into a different world' was when he fell down and hit his head on the ground in the back yard a few weeks back in September.  It was a terrifying experience!  I put him on the back porch to play which he normally does once his brothers get home as he goes onto a hyperactive streak.  He usually goes out there to play with dirt where he can spend hours just pouring a little pinch of sand into one hole and just do that for hours.  Today, however, he had fallen down [which he's very clumsy as part of all this] to hit his head on a rock near a swing.  He was crying and blood was pouring out of his head like crazy when I heard him crying.  I was in the middle of making salads for the kids dinner but thankfully I stopped abruptly to see what was going on.  He turned around to have his face entirely covered in pouring blood, clothes soaked, the chair he was leaning over was entirely soaked in a pool of blood where you sit down on..it was just a terrifying bloody mess all around.

We called 911 promptly to stop the bleeding but also rush him to the ER due to his Stickler Syndrome.  With any bumping into walls or ground or any impact even as simple as jumping on a trampoline he can have his retinal detach or have it start to get holes on it.  When the paramedics arrived they asked me questions, asked him questions, evaluated him, cleaned him off, strapped him to a gurney and sent him off to the ER to get examined.  During them questioning him to figure out his response he wasn't responding promptly.  He was indeed out of it after the great loss of blood but he was even more out of it.

They were concerned and I expressed my concern.  I mentioned to them that his behavior has changed like this recently but right now it's worse.  They kept asking me the questions as if I didn't answer it as they wanted to know if he was worse right now and I said yes and explained the autistic side that he was also being screened for.  They were concerned with his behavior in not responding well verbally and frustrated, as was I with the situation and them asking me this questions over and over as they didn't get 'it' with the possible autistic side of things.  Bottom line, he wasn't acting normal.  No major brain problems was going on but he was far more 'out of it' than normal.  Very loopy.  This behavior has recently started but it's getting worse, what ever it is.  The paramedics being baffled also shows that he isn't responding 'normal' to people.  They were asking questions, he'd look at them in a fog and wouldn't answer.  Same that goes for anyone else.  Even his words with communication is getting fewer and fewer.  This evening he came up to me and said "line" with a piece of marble run toy.  I asked him what it was and what it was for.  He said "present!" Further asking him what for, he said "It has a spin thing on tha-tha-tha-tha thaaa endhh" What he was getting as is that he brought me a present in the shape of a line which was the end part that spins off of the Marble run.  He's 4 years old, and this is something you think he'd say at 2 years old not 4.  Not always does this happen, but prior to 4 years old this never happened.

Sensory problems are a big concern.  He has been officially diagnosed with Sensory Integration Disorder or also known as Sensory Processing Disorder.  It's where his skin feels like it's on fire and the 'volume' in his brain cranks up his sensory to be louder than they should.  This applies to light, sounds, sights, touch, feeling, taste, all of that.  Some days he wears shirts other days he doesn't do well with them and goes naked after trying 5 different shirts.  Some pants hurt him as they're 'owie, too tight' or scratchy.  Shirts with tags are the worst, or thermal long sleeved shirts feel like pins and needles all over him.  Food has been an issue since he was a baby.

Introducing foods was a joke.  I had many other first time mommies trying to tell me how to properly feed him [this isn't being sarcastically said, this is what happened] but that wasn't the case.  You could puree it until there was absolutely no texture.  If the taste or texture wasn't just so, he would spit it out and cry out of frustration and pain.  Now, he could eat chips on day and be fine.  On the days where his shirt is off, he'll be chocking on a chip screaming that it hurts and is owie and we'd have to go to something more simpler and softer like fruits or some veggies.  Same goes for meats, breads, anything with texture.  Resulting in his now gluten free diet.  He actually has had his first solid poop in his entirely life with a gluten free diet!  TMI, but it's a huge break through.  We're not talking constipated or over the top diarrhea that he has always had.  His sensory issues had gone down a little with communication actually getting a bit better.

We're going to stick to this diet but also the oat, barley free on.  I can't remember the name of that one.  If some one knows, feel free to post it in the comments below.  The Psychiatrist we have in Portland believes in holistic approaches which is exactly what I want and she completely agrees with this diet after 12 years of running her own Autism clinic.  She even says any means you can holistically help 'cure' some of these things the better off he'll be.  I couldn't agree more! His non stop nose running had actually started to taper off to.  He has had non stop issues with that since birth.

There's more I will elaborate further into but that is a little bit off of my mind to document for now.  I will write another blog shortly while I dual task a few things this evening.          

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