Cheers to 2013, and farewell to 2012!

It's amazing at where you can find the most inspiring, deep understanding in people by even a simple quote, or perhaps even a TV show.  For me, it would have to be the most recently catching up to Private Practice last night via On Demand.  There is a Psychiatrist whom was diagnosed with prostate cancer and as he was going under a scan to see if he might have a mass elsewhere when he ran into a lady in the waiting area who was terminally ill with cancer.  Prior to this, he reconnected with his ex wife to try to ask for her support besides just fun weekend hookups.  She said she couldn't handle it and walked away entirely.  Ironically, the same that he did to the terminally ill lady until his own Psychiatrist mentioned to him that as he had experienced with his ex wife that not everyone has the adversity and ability to adapt and deal with some of what life throws our way.  He took life at it's grips and asked the terminally ill lady out on a date.  Yes, it all sounds fictitiously cliche.  In reality, this is real.  Not everyone can handle all that life throws at us, and even though we never expect it to happen, some just can't handle it all and instead walk away.  This has no part in my principals, but not everyone shares the same insight.  No matter what happens, some one must still take care of things and get stuff done.  Life isn't a simple walking away from things, as it only makes things far harder within time.

With that said..I'm grateful for 2013 quickly approaching!  2012 has been a world wind of happiness, sadness, stress, craziness, and all those lovely memories with my kids in between it all.  Sure there has been tons of doctors appointments, some things that come and some things that go, but all in all it's about savoring those wonderful small moments in life that make you feel alive, and stay present in them when they do happen!

I've had a crazy past few years during this time of the year.  This is the first Christmas and New Years  Eves that has brought me amazing peace after years of healing from a traumatic one when I was pregnant with my oldest son.  Every year taught me something new to learn from, heal from, and keep moving forward with continued progress.  As they say what doesn't kill you only makes you stronger.  This really has helped contribute to helping me handle all that is going on with Colin's journey this year almost like it prepared me for all this. I'm very grateful to be alive and living each day even with the good and the bad that comes my way. 

 A week from today my college classes pick up once again.  There is 16 credits altogether with 4 classes of Photography, Intro to Drawing, Women in Art, and English.  I completed my last term through thick and thin with a 3.57 GPA struggling greatly with Biology but completed it with an inspiring teacher.  The last 3 weeks of class was another dark point in my life where I just 'let it go' and let it be what it would be while doing what I could.  Setting aside my stubborn type A personality!  The most amazing moment happened to me when I did this.  While handing in my final exam my teacher leaned forward and whispered to me that to not worry about the test I had missed or the lab homework as she gave me both 100% for free on those.  I was floored, and left all misty eyed.  It was so refreshing to know that some one could do such a thing knowing that I was working hard and yet struggling due to too much on my plate with my personal life that just seemed to keep piling up.  I will NEVER forget that moment, as she really touched me permanently.  I'm working so hard to keep things together, complete, up to date, and yet retain all this homework college throws at me while also trying to memorize all that is going on with my sons medical situations..appointments..and such.  It really was a pursuit of Happyness moment.  I am also extremely grateful for my mom being such a huge support like she's never been before.  She would call to encourage, wish me luck, and support me with just honestly genuine motherly love when I needed it the most.  Not to mention those amazing friends who have been there along the way to reach out, listen, send me such amazing kind and supportive words along the way.  I'm truly blessed and SO grateful.   

They say you're not handed more than you can handle.  I'd have to laugh at that at times but despite the insanity I wouldn't want my past to be any other way.  Adversity, Courage, Faith, and Adapting are my huge keys to moving forward.  I'm sure all those years of pushing through long distance running also helped me tremendously to keep fighting and loving through even the most hardest hours.  I just know there is more in store, and more to be completed, and more to be done.  I don't mean that in a pessimistic way but in a realistically optimistic approach.  When people ask me how I do it or going to do it, I just let them know I've been through worse.  It has made me who I am and that is precious to me as I am Cambryn..one of a kind not just with my name but who I am.     

With that said, I wish you all the best New Years of 2013 possible!  Our journey continues as does yours.  Live like today was your last and don't forget to enjoy the sunrise each morning along the way. 

With that said, I leave you with one of my favorite poems by Maya Angelou--who I've had the great pleasure of seeing in person! Enjoy:

Phenomenal Woman

Pretty women wonder where my secret lies.
I'm not cute or built to suit a fashion model's size
But when I start to tell them,
They think I'm telling lies.
I say,
It's in the reach of my arms
The span of my hips,
The stride of my step,
The curl of my lips.
I'm a woman
Phenomenally.
Phenomenal woman,
That's me.

I walk into a room
Just as cool as you please,
And to a man,
The fellows stand or
Fall down on their knees.
Then they swarm around me,
A hive of honey bees.
I say,
It's the fire in my eyes,
And the flash of my teeth,
The swing in my waist,
And the joy in my feet.
I'm a woman
Phenomenally.
Phenomenal woman,
That's me.

Men themselves have wondered
What they see in me.
They try so much
But they can't touch
My inner mystery.
When I try to show them
They say they still can't see.
I say,
It's in the arch of my back,
The sun of my smile,
The ride of my breasts,
The grace of my style.
I'm a woman

Phenomenally.
Phenomenal woman,
That's me.

Now you understand
Just why my head's not bowed.
I don't shout or jump about
Or have to talk real loud.
When you see me passing
It ought to make you proud.
I say,
It's in the click of my heels,
The bend of my hair,
the palm of my hand,
The need of my care,
'Cause I'm a woman
Phenomenally.
Phenomenal woman,
That's me.

Maya Angelou

Cheers and much love,
Cambryn Courson (aka: Conner, Logan, Colin, and Breatens Mom!)

2012 appointments with 2013 more to come

This year has been quite an adventurous one from 52 appointments within the past 11 months.  There is plenty more that needs to be scheduled for just Colin alone.  Not even including screening the other two boys [not my oldest is needed].  It's no wonder parents with special needs children aren't able to juggle a huge load in addition to all the rest that comes with life.  However, I'd like to be that exception when it comes to life and take each moment carpe diem in order to live a full life.  As they say, live life out loud.

Future appointments shall be made with these specialists and needs: 

• ERG with Casey Eye Institute to follow up on possible progression of Achromatopsia or even Cone-Rod cell dystrophy in addition to Achromat. There is signs that he's likely completely color blind with possibly just seeing colors very minor.  It's no wonder he hasn't caught onto learning his colors like he has other things! This will be overseen by an eye geneticist and neuro ophthalmologist.
• Every 3 months we have a maintenance visit with Casey Eye to make sure no further damage is done with his potential Retina rips or coming unattached. Due to Sticklers Syndrome.
• Occupational and Physical Therapists due to preventing Juvenile arthritis with muscle stability which is highly common with Stickler Syndrome, as well as helping with his Sensory Processing Disorder management.
• Neuro Psychiatrist to determine if he does indeed have CDD or just Aspergers with some regression in general.  As he's gone from being highly articulate to now more one words or stuttering that he's never done before.
• Continue to see the Psychiatrist to manage behavior, and a behavior specialist is likely needed as well in particulate once he attends school.
• Contact the school for the blind in order to manage and receive help for his Achromatopsia as he goes 'completely blind' in bright settings such as indoor or outdoor lighting. If he see's, it's in a high contrast of black and white.
• Eye Dr's to get the most accurate and correct tinting of his special glasses needed for Achromatopsia such as shades of amber to yellow to potentially just full on deep red.  He'll need around 2-4 pairs, I've been told.
• Shriners, there is currently about 5 different specialists we also see there on a regular basis and will continue to keep seeing to manage symptoms, preventive measures, and such.
• Geneticist to hopefully get final test complete on what genetic mutation of Stickler Syndrome he has, Achromatopsia, Aklyosing Spondylitis, as well as a few other potential genetic mutations that might surface from 2nd cousins on Mikes side. I believe there is about 7 different genetic tests that are still pending via the insurance for months now. 
• Retest him in Gluten intolerance, dreadfully again.  The last one was false as the last week I had tapered off from his Gluten diet due to his inability to sleep at night. He became full of sensory, stemming, and had massive meltdowns that would leave him to falling asleep at times 2 am if not sleeping at all during the night but instead fussing and crying all night flopping around not being able to get comfortable.  Not exactly the most exciting situation when you're attending college full time and need sleep in addition to juggling this!  Melatonin on a regular daily basis has put him to sleep far better with out much of these hitches as well as returning to a Gluten, Dairy free, and Cassen free diet.
• Keep log of all that he eats.  He will likely still see a Pediatric gastric/bowel specialist as well.  He has never but rarely had solid BM since birth.  He also complains about a painful stomach ache and eating gives him anxiety at times.  Tracking his diet will help determine what exactly is making him set off with these anxieties, and potentially help lessen them from being aware.  Yay, another thing to keep track of.  Why not?

My hopes has been to have him in Preschool already.  However, due to college it's been hard to settle down those details and make sure to get him in quickly.  My hopes is to get him into a pre-k this next return to Winter season and that everything will go well with him adapting into a social environment.  It will be a great test to determine how he'll adjust to Kindergarten starting this fall.  That will be nice to have 3 kids in school this fall! *phew*

More to come in 2013, and it's very likely I've left a few things out.  I've had to take a few weeks off during finals and stressful intense situations this month from many of these appointments which has set us back a little.  However, I hope to return and get most of these once again out of the way that way I can focus on other projects and life better.  After all, I have to still pay attention to my other 3 boys in the juggle of it all.  It's not hard, but it's also not easy.  I'm just ready to clear my schedule a bit more from all that still needs to be accomplished!  

Color blind? Completely, perhaps?

Lately there has been some comparing going on with notes to other parents with Achromat kids who are full Achromatopsia which means they're entirely cone/rod deficient or to the point that they're so low on these cells that they no longer can't see any colors at all.  This has been in my thought for a long time considering he catches on amazingly well to numbers, counting things with out pointing or using fingers, ABC's, basic shapes to even octagons and more.  Yet, he has always typically struggled with colors.   Why is this?

Lately he has not been able to tell me what colors are what.  A huge thing other parents said to what I was asking about is that he says black is red, or red is black, and yellow is white and virtually no yellow colors have any color to him as he immediately says white unless it's more of an orange or darker yellow.  I think it's because of the shade.  The other parents with full Achromat kids have told me that their kids say the same as well until they were old enough to point at a color scale.  Think about it, if you have no base line of what colors are at all how would you have anything to go off of?  You'd memorize different shade colors as people point to them in order to try to memorize them.  That is what other parents have mentioned to me as well.  It all really does make sense.  After all, the ERG taken during summer resulted with her expressing how low the cells really were to the point where if he does see color it's very minor.

Can you imagine not seeing these magnificent colors?  Ever.

I had this epiphany driving in the car this week with my 2 youngest sons.  I don't recall exactly where we were headed.  It was more of a detour since part of the highway out of where we live was closed due to construction.  I decided to take a back road and drive to the general area that I knew the other entrance to the highway was.  During our back track it offered me time to soak in the color of all the fall leaves transforming into warm reds, oranges, and yellows with almost little to no green leaves as the sign the season was in transition.  It was a very euphoric feeling just meditating in that quick moment of my detour.  Enjoying the view I quickly informed Colin to try to take a look outside and let me know what he sees on the tree's.  That is when it really actually soaked in with me.  What if he can't see this vibrant colors of the earth?  Just as much as he can't even go outside let alone have the window blinds open when it's a beautiful sunny day outside that he can't even enjoy since all he sees is completely white or black and white contours of things around him as he tries to navigate around it all.  Often times he goes completely blind from the sun.  No blues, clouds, etc.  Thank God for modern technology as I've been able to show him what the sky actually looks like from a view that he will never experience it with.  

Only more ERG's as well as genetic testing will confirm where he is at within the vision spectrum of color.  Or if it's progressively going to get worse within time to the point that he'll go completely blind from either that or a detached retina. 

As they say, "just take one day at a time"  

That is all we really can do. 

Carpe Diem and let him see the sights that will be engraved in his mind for years to come!   

 

What if your annual visual reference for fall would be in a grey monochromatic scale?

Gluten intollerance blood work today

Gluten intolerance test is today. This time has allowed me to do a really great vaccuming of the house with out hearing him scream for it to be turned off due to his Aspergers and SPD. Which I typically need to vacuum 2-3 times daily just to stay on top of the crumbs and mess the kids bring and this always sets it back further.  Yesterday, I took Colin out to eat with Braeten and I for a rare [about to be non existent for Colin!] morning breakfast yesterday of his absolute favorite french toast.  He eats such a large portion that he typically is ordered the adults size vs. the kids plate.  Braeten had eggs, bacon, and hashbrowns.  I decided on some steak, shrimp, and salad.  Running around and doing all what I do I need as much energy constantly to stay on top of it all. As no one truely knows what it's like to have a special needs child unless they have one of their own.  It's horrible when you hear those making fun and saying how annoying how special needs people are, for example the guy with Asperger and turrets from American idol who ended up being one of the finale guys on the show but had these 'weird' mannerisms that he couldn't control.  Seriously people, don't make fun of things you don't understand.  Don't judge.  Also, don't judge the parents of a special needs child.  It's not the parenting, it's a neurological and beyond peoples parenting abilities.

Colin yesterday hugged 5 poles before entering Fred Meyers as he always does and if there isn't that repetition as well as soothing to him.  Most people wouldn't have patience or scowl at allowing the child at having such extreme eccentric behaviors, however, with a special needs child you just adapt to loving them and allowing them to continue it so that you can prevent meltdowns and uplift his behavior and mindset.  It really does make a difference.  Yelling, defeats the purpose and makes more damage and lack of trust towards you which trust is vital with a special needs child between caregiver or parent to child.

 On another note, I'm very thankful for what my parents have been doing for all of us.  My mom has  been purchasing vitamins for a few years now with far more expensive ones now to help with the brain, vision, stomach, etc. as well as dropping off some major gluten free groceries from time to time has been a huge support. 

There is plenty more going on.  This is just the iceberg of frustrations.

All of Colins conditions at this time and educational videos related to them

Melatonin is awesome!

Melatonin is awesome!  We've heard from many other parents about this natural method of effectively putting your child to a peaceful nightly rest with out needing some nasty drug with major side effects in order for him to get a good nights rest.  We chose to pick up one that is all natural, containing no animal products, and completely vegetable based and not artificially [which is the worst kind to use!] created.

I consulted other parents, doctors, nurses, and more to hear other feedback on this method of getting Colin to a peaceful nights rest during this gluten intolerance time in order for proper testing.  With everything going on and such little quality support we have, it was time to try an alternative holistic proven method.  Wow, does it work!  I was skeptical at first.  I gave him it broken up into a reeses peanut butter cup at 6pm letting him know they're chocolate chips and that they're part of the reeses when he asked. After all he has an OCD phobia about sleep and even small honesty would set him off to absolutely despise this supplement.  It wasn't any further than 7:59 with him all dressed up after shoving his mouth full of food all evening [he becomes this way when he's on gluten diet as his stomach hurts, constant runs, cramping tummy all the time thinking he's hungry, his stomach becomes huge out of bloating from gluten problems, etc].  He crawled into 'the thinking chair' and immediately not even a minute later was snoring hard solid logs!  2 nights in a role and not even a minute later than that exact 60 minutes, I'm no longer a skeptic!  It's like clockwork for him.

Here is an image of him passed out cold after his first dose of melatonin:

Halloween as a family

 Images from Boo bash near where we live which is an awesome community event we attend every year.

Colin as Mario from Super Mario bros. while Braeten is wearing the traditional chicken costume that I made for each of the boys to wear at the same age.  4 times this costume has been worn now for each of my boys!

Conner was 'black' from Pokeon

Logan a cowboy for boo bash but wolverine for Halloween night.

 Proud mama dressed up as zombie Katy Perry with the most adorable chicken ever, Braeten!

 Proof that Colin has 'day blindness' where he can't see or his field of vision is extremely narrow to the point of being completely blind during bright sunlight.  Hence, why his eyes are wide open and won't flinch while you swipe your hands in front of his eyes.  Achromatopsia is a genetic condition which commonly comes from incest.  Which is why the geneticist as well as his Pediatric optomotrist believes the Reichert 'royalty' might be involved in this rare genetic mutation.  As royalty in the Reichert side heavily encouraged incest amount 'royal' family.  There is also color blindness on a 2nd cousins side of the Reicherts with additionally having hearing problems which might potentially explain Sticklers..possibly.  This could come from more than 1 side of family as told from geneticist. 

 Colin loves his Thomas candy bucket all dressed up at Mario.  He has started to make less eye contact now, smaller word answers, and severe regression within speech.  However, he has potty training but they've told us to watch that over the next 1-3 years to see if there might be any regression that would let us know if CDD is going on. 

One of Colins many obsessions.  At Fred Meyers he has to hug each pole before we enter the store or exit the store.  At times he's okay at least touching it.  However, he will know if we missed one or skipped one in which a meltdown occurs due to his OCD like behavior.  These meltdowns you can't just 'snap' an autistic child out of.  No real redirecting either.  You must feed the OCD behaviors to what it wants in order to be satisfied as it's calming to him.  Just like his spinning and hand flapping he does all the time is a form of stemming.

Gluten intolerance with Autism is exhasting!

Today is really an attempt to rest, recover, and recoup lack of sleep that didn't happen last night as Colin was screaming, fussing, constantly inconsolable like he was around 2-3 years of age.  He'd have these massive night terrors but now I'm starting to think there's something more to it.  He flops around from side to side trying to get comfortable but still gets upset, starts screaming, crying, and it's like he's in physical pain but he can't explain it to me.

We've had to put him back onto a gluten based diet to determine if as well as how severe this diet is on his body.  It's honestly night and day as just as we started to see our boy come a little out of his world he's forced even harder back into it, if not further into this realm.  He has started to use 1 word questions, answers, concerns, responses.  Meltdowns are greater from 15-30 minutes to typically off/on within a few minute breaks in between of hour long non stop meltdowns.  Trust me, it's easier to read about it and this isn't being blown out of proportion.  NOTE: If anyone ever wants to say that we're "blowing these medical conditions out of proportions," they have their head far underground in the sand!

What is really hard is to see him using fewer and fewer words.  Yesterday was a peak of frustration for him where I asked him if it was hard to say words he wants to say and he shook his head yes.  He has been using only 1 word for everything right now for which I have to remind him with patience "use your words" where he'll become angry and start pointing at everyone angrily with out the words to say something about it.  This is not how he's been and even many new medical professionals we have over seeing him now don't have this history with him which frustrates me greatly to have them have that first hand recognition of what all he's gone through and dealing with.

I think at this rate it's time to ask the Doctor to speed up this blood work testing and get that done sooner rather than dragging this one.  Otherwise, it's like giving your son crack and expecting him to be a normal functioning child.  It just doesn't work!  It's exhausting between everything else we have to juggle limiting us to not going out or doing much because it's that much harder to juggle.  Forget having 4 kids, we've got that figured out in public.  It's juggling Colin running off playing in puddles or filling holes with dirt 30 yards away from us because he's more into that than walking and staying with us.  Halloween for example, he was no longer interested in Halloween trick or treating once he saw the stream of rain water run off...that was that!  He was done with candy, Halloween, trick or treating, and was all about the rain water run off on the road.

Not much more to say.  I have loads of homework to complete this weekend before another College week.  I don't want to do anything last minute so it's time to start it all now.  Colins super fussy and Mikes out working which means it's up to me to juggle it all at home.  Colin typically doesn't pass out until midnight with these sensory problems and if he even sleeps at night at all--and yes, he's 4 years old.  Thank God I've raised him in an attachment parenting as touch helps Autism and cosleeping still helps him calm down.  He'll even snuggle Braeten or Braeten will try to wake him up to play.  It's super cute, and I'll enjoy it while it lasts as this is never permanent and life passes away too quickly!

-----------------
On a side note, I've edited my blog in the past to attempt to please some people who are never satisfied and always complaining about anything I do.  I WILL NOT be editing this blog.  What says, goes.  It won't be edited as nothing I do makes them happy and really I'm in this to look out for my family.  Thus, enjoy the blog if you are once again reading this blog.  This is mine, not yours to edit as same goes for my life. 

The next step

The next step in the process for Colin's visits will be Occupational Therapy as well as Physical Therapy.  Occupational Therapy will help his Sensory Processing Disorder, Physical Therapy will help with his muscle tone in order to prevent joint damage even Rheumatoid arthritis as Stickler Syndrome is a degenerative disorder the Physical therapy prevents the hyper mobility of his joints furthering into injuries or more body damages.  Combined together, I hope he'll start to use his fork and spoon again.  He has gotten to the point of completely rejecting them altogether which leads to him needing to be fed assisted otherwise he has a complete meltdown with horrible anxiety as it frustrates him greatly.  It's not just something you can have a child with these problems 'snap out of it and just do it!'

Also, today is his third day back on Gluten foods as he has a blood test in 2 weeks.  During this time his anxiety, as well as hysterical behavior, stomach diarrhea with no regular stools, and lack of 'listening' has severely night/day increased.  I can't even explain how exhausting this behavioral change is!  It makes all of your senses entirely exhausted and completely out of energy not even at certain portions of the day.  When he's been on a strict diet his behavior has improved, communication has opened up, less fits and fussing, more eye contact, more focus in communication, and less sensory problems even meltdowns.  Not to mention less complaints about tummy issues and a whole another list full.

On another note, we're going to also get Logan screened for Autism as well as Sensory Processing Disorder as he has always had these similar complaints the previous pediatrician had turned us down on..like everything else he always turned us down on.  However, we have to still get some major Colin issues out of the way before we can even start to tackle Logan's again.  At least we're in good hands with a great medical 'support' system. 

I have to run to my health & fitness class for this evening.  2 midterm exams yesterday has extremely burned me out mentally and physically.   However, there isn't such thing as rest when it comes to being a parent of 4 kids--1 with special needs in particular!  Everyone have a wonderful evening.

On a side note, is it already Halloween tomorrow?!!! WHOLLY GUINNESS!!!

 

IEP results today

Today was the IEP review with Colin's Psychiatrist.  She is in the process of setting up another full clinic once again to gauge more activities and help for her clients.  We all feel very comfortable with her care and will continue on seeing her in conjunction with the Neuro Psychiatrist that I was able to not only get the insurance to approve with the help of the Psychiatrist but also the one we could get normally doesn't accept our insurance at all but he approved this one due to Colin's rare CDD possibility.  Such a huge relief after fighting the Pediatricians office yet mostly the insurance declining it for the past 2 weeks over as they "didn't see it necessary" for his care.  I've had enough of the Dr's saying no to me, and no will not be part of their vocabulary when it comes to something so important!

Moving on, the diagnosis is pretty much as discussed with her over the phone.  As mentioned she says he is within the Aspergers criteria thus diagnosing him with that.  I can't recall what the name of the 'scales' of 'criteria' from the questionnaire was. However, he did rate 139/150 [75 being the entry for the Aspergers criteria requirement which shows how high on that he lists] for one and 24/30 with 12 being the minimum requirement for diagnosis [?12? I think..].  She believes he might just have mild Aspergers and wants to observe him in a school setting to see how he social response and academically responds to the environment.  If it doesn't, or further regresses that would indeed start to show that he just has the average but very high functioning healthy socialization with his Aspergers or he might have CDD as things could further socially decay.  He has a diagnosis now, however, he is due to have a change in his Diagnosis within time.  As they say, only time will tell.  It's so hard waiting it out and at this time I find myself just enjoying those small things that used to occasionally bother me and even the repetitive discussions he rambles forever about just to carpe diem as who knows what the future might hold.  Enjoy it now, as no one is guaranteed tomorrow or to be guaranteed it to be the same as their yesterday. 

He also has Sensory Processing Disorder which obviously our next step we've been putting off is Occupational therapy and Physical Therapy.  We've completed most major diagnosis so now we're working towards the daily maintenance within our schedule since our schedule is less intense with appointments as it's been.  I would love one week with out 1-2 appointments or the need to speak with a medical professional.  My phone is always off the hook now!  Even while I was in NYC I was reciving inbound phone calls from school about my son Logan sticking his tongue at the bus driver to insurance declined the Neuro Psychiatrist.  My job is never done. 

She further discussed that he is looking to have signs of not only anxiety due to his Aspergers, vision problems, and Sensory Processing Disorder..but also he's showing signs of parent attachment disorder.  The Psychiatrist acknowledged my healthy attachment with Colin [well, cosleeping, long term breastfeeding, and attachment parenting has been a huge involvement with Colin in every aspect since birth, and taking time off from not working has been a blessing towards giving my son this deep base to life. Because of this, he responds to touch well as soothing which is rare to have within Aspergers children or even adults.  Thank God for all that time to 'attach' with my child!  I will have plenty of time to return back to working once this important basis in my kids lives is established. College or now!].  She as briefed on the situation between Mike and his parents and how they're towards me.  She is going to see both Colin and Mike to work upon attachment parenting and reconnecting and hard-wiring those connections of parent to child before further damage or the same path laid before Mike continues on between Mike and the boys. 

Fathers relationships between children is so important.  It's even more important for a father to be a positive mature example to their kids and know the detailed in's and out's of how to approach their kids in many aspects.  What more of a challenge than a special needs child with Aspergers plus all the rest going on with him?  Our family needs any healthy aspects as possible, not destructive or history to repeat itself again. Attachment Parenting Disorder If you think your family might have a problem with this as well, it's important to seek help and have your child be reassured.  The Psychiatrist even informed me that no matter how deep of a bond or attachment I have with my child, it won't make up for the detached other parent half.  Mike is open about this and excited to get started in reconnecting with his son.  He has been slaving away at college to score many 4.0's or make income that his relationships with his kids have slipped.  The more outside lack of support the further his presence with them has decayed.  I'm happy to see this possibility for that to be restored after all we've all been through.  If you think your family has something like this, get it checked out the sooner the better.  Healthy connected attachment parenting is so rewarding and will end with positively confident children not insecure false confident children. 

On other news, I have a 4 chapter midterm test on Monday along with 6 other pages of homework that I'm 4 pages into at this time.  I need to cram more information back into my brain and hope it sticks until I take my test on Monday!  I'm returning back to work on my Business Degree that I took a break off.  The last time I attempted to return to college was the same day I found out that I had placenta previa with Colin.  I was about 13 weeks along in his pregnancy, just laid off of work a few weeks prior to becoming pregnant with him, sitting down to discuss with a college advisor about transfers from previous college I've been attending and the degree of choice to attend classes.  I was receiving unemployment so my attempt was to score the free college tuition while on Unemployment.  That option fell through once I left the advising appointment I had bleeding for the evening and off/on for the next week that placed me on bed rest for about a month.  It was scary, but things turned out safely as my placenta 'migrated' out of the danger zone and bleeding stopping.  It was traumatic enough that I've took that time off from returning back into college. 

Once I had him I knew it wasn't time to return back to work yet as there was something 'special' about his learning abilities as he'd suck information in super quickly.  For example, by the time he was 16 months he'd say large words like umbrella and be able to tell you and point out what is upper case or lower case A-Z letters as well as sounds! Now with college, it's very refreshing to be back to work towards the ultimate life changing..and challenging goal!  This time with no pregnancies, but just kids medical problems to juggle now.  I just hope to find, afford, and juggle colin attending Pre-k now prior to Kindergarten to determine how everything will work out for him in Kindergarten.  

I'm off to study now.  Everyone have a wonderful evening and adventure filled Halloween week!  I know we will here.  We just visited our local pumpkin patch today.     





   

Bloodwork, and more tests!

Colin had an appointment today with his regular Pediatrician to go over what all needs to be outlined regarding his stomach issues he's had since birth.  To sum it down, he has had continual GI issues with diarrhea since birth and never a solid poop unless he's overly constipated due to not drinking enough.  As the Pediatrician had discussed, this is extremely common with kids on the Autism spectrum to have tons of stomach related issues in terms of Diarrhea or having a 'cramping stomach' all the time.

We covered his 60 questionnaire to determine what might be the sources or what tests might need to be further completed.

What was determined is that he needs to be tested for Gluten Intolerance which means he needs to go back onto a gluten filled diet over the next 2 weeks in order to be tested for antibodies that would show up.  He has been off of it within the past 1-2 months so he fears the antibodies wouldn't be as present as they'd like or need them to be.  It's really frustrating to hear but we're having to put him back onto a regular diet in order to get a conclusive test for this.  It does make it a bit easier on cookie for the next 2 weeks but to think of his stomach issues, sensory problems increasing once again, and attitude and crankiness increasing once more is SO frustrating to think about again.  Being on this diet has not only decreased gluten issues but has also his behavior.  A huge results was his first solid normal poops ever.  Normally he always has loose extremely explosive ones which isn't fun during diapering years.  All in all, it's a step in the right direction even though it's a huge leap bag for his autism diet making us 'start the progress all over again' as they say.

Additionally, they'll check for any possible infections, anemia, vitamin imbalance, etc.  After all that if nothing comes up they'd send him out to another specialist which is a Pediatric GI specialist.  They might need to 'look' inside with a colonoscopy [spelling?] only within the worst case situation.    

Thankfully this doctor seeks progress even mentioning he researched some info prior to us coming in related to Autism and stomach related issues.  He wasn't aware of his Psychiatrist diagnosing him as she's been trying to reach him he hasn't connected back with her yet which is frustrating to hear.  I politely asked him to connect up with her to quickly review notes and help offer her info that might help with his diagnosis. 

Next step as most of these diagnosis and major appointments are out of the way is to start scheduling regular basis appointments with an Occupational Therapist, Physical Therapist to manage Sticklers Syndrome and prevent further joint/bone problems by building up muscle strength and tone, and I believe they also have a speech therapist who can help integrate that into the equation.  Monday, I also follow up with the Neuro Psychiatrist to determine when I can get into Providence as the Dr approved him as well as the insurance [phew!!!!] on a rare case due to CDD possibility.  They informed me the way to have the first appointment with them might be clear out in February since this place is in high demand within the Northwest as well as Nation.  We will continue to see the lady who diagnosed him as well as wrote up the IEP for further management of daily behaviors and such.  I highly recommend Elizabeth Fisher at Healthybonds.net as she has been a huge help with all this.

What also will be scheduled is his next ERG which is due next month to happen, and December his next regular check up with Casey Eye to keep observing his vision to prevent any possible tears, holes, detachments, vision decreasing, etc. We have been reassured that the school for the blind is local in Vancouver if anything is to happen.  That is refreshing to hear that really outstanding source of help in that department is that local to us.  This is what makes it hard for me to consider about relocating unless we can find resources like this within that similar area again.

Off to homework land and test studying as well as online test taking for me.  I have midterms next week as well as tons of homework assignments that need to be completed ASAP before they become too last minute which I don't like to do!  I was wishing to visit my parents this weekend and pick up Pumpkins they grew in their garden but homework has hindered that.  Now we can try to visit a patch local to us over the weekend if the time opens up.  I hope everyone has a wonderful weekend!

Insurance approvals?

This past week there has been plenty to juggle.  I returned from a much needed and first major vacation in my life thus far, from visiting NYC for Commicon which was amazing!  I met Sea Astin [spelling? From Goonies, Lord of the Rings, a few others..], 3 rows in the front for Christopher Lloyd Q&A, met and received Carrie Fishers autograph, and tons more.  I was even on the Good Morning America TV show outside one of the mornings where one of the cocky guys from the reality show Jersey shore winked at me..and I don't even watch their show, and ran into as well as visited with 2 good old friends on different occasions.  Some major tourist spots were visited such as Statue of Liberty, Coney island, Madison Square Garden, and so more I don't even remember now.  I went with some old coworkers from Sam Goody days years ago and it was well worth it!  It helped keep costs down as things are obviously super tight for me right now, while still having an amazing time.

I took 2 days off of college to go which makes me really hope that the next 5 weeks left of college I will accomplish with zero illness and zero further tardies. 

On another note, insurance approvals are extremely frustrating.  I won't go into politics of insurance or even what insurance we currently have.  I will say that Autism isn't really accepted in terms of insurance approvals. Hence, we've had to do tons of out of pocket costs for Colins screening.  He has seen 2 different people now with 7 different visits costing us around $800 out of pocket.  Thankfully we don't pay on car loans at this time which helps and some times money falls in place when you least expect it.  But what is extremely frustrating is begging the pediatrician to send over the paperwork and determine how they sent it over on the file to determine if they filed it the right way for approval or not.  This has been going on.  I finally found this lady who has dealed with special needs [autism in particular] for years and now that she finally made a diagnosis Colins pediatrics office calls back with an insurance approval for Autism screening for him!  "great news, he has been approved for screening with the Psychiatrist that the insurance previously declined him for" which turns out, since we had a diagnosis out of pocket then insurance was willing to pay for screening.  Why do I need screening after all that?  We have a new lady who is amazing, and don't want to switch to some cookie cutter method.  Besides, she believes in a holistic approach vs. medicating ever little problem which is huge to me as his parent.

We're also still waiting on the Stickler Syndrome insurance approval that was sent back in March.  They were quick to decline screening his brothers to determine if they have the gene.  Now we also have to wait for genetic testing approval from insurance to determine if he has the gene code for Anklyosing Spondelitis, as well as which Achromatopsia genetic code he has.  The Pediatricians office keeps on fighting me on a Neurologist for screening this CDD further.  I will go to another Dr is we need to but Colin will be seen.  That will tell us now if it's most likely a yes or no on that.  I won't take no for an answer on something as serious as that.  If you found out you might just have potentially 6 more years to enjoy your son ever speaking again and behaving some what independent..wouldn't you want to know ASAP to spend those last few years as much as possible focusing on your child?  I know I do.  Even now.  Even if he just has Aspergers, he could still lose his vision so I want him to 'see' all that he can as much as possible now.  Explore!  Go hither.  His life won't be over after these facts, but I'm all about focusing on what time you have vs. not even trying.

Right now we're waiting on SSI to be approved to help with all these medical needs that aren't being met.  Any money you might donate to us directly on that program [see the top right hand side of this page] will go towards any services needed for Colin.  And there is lots!  We're also working on saving up for a video camera to record him, as well as an electric piano to help his Autistic musician genius that is ready to come out and play!  He sings the most detailed little tunes between playing, eating, playing on the ipad, playing with his brothers, doesn't matter--there's always a song like you'd hear on a TV show.  Either it's super happy, sad, contemplative, or loveable.  He reflects his feelings through his certain tunes.  Even his Psychiatrist he see's now thought that was quite the skill he has and was impressed by how detailed to it he was.

On another note, we are also needing to schedule an ERG for next month.  I hope they have an opening as typically they're 2 months out.  They're observing his low ratio of Cone and Rod cells to determine if it's progressive or not.  Every 3 months they're going to get another rating.  I am hoping that this time we can better approach the IV situation once needed and local anesthesia that he doesn't respond well to due to sensory problems as well as his autistic side.        

Always adapting to the ever changing lifestyle..

Nothing is ever set in stone yet it's always rapidly changing which requires creative adapting from.  That has always been my understanding in my pretty crazy life lived prior to even having kids.  Kids just taught me to kick it up in gear and let it flow naturally and not stress over so many fine details we don't always have control over. 

However, I must say from an admittedly strong stance I've had in life leading up to this [perhaps prior situations were to warm me up for what is happening now?] was always hard and always a struggle.  Yet now, I've admittedly faced my toughest challenge.  Something for years I was extremely thankful and very blessed to consider not having--is a special needs child.  I've seen family struggle for generations with them, friends struggle with raising them, and the more kids I have had the more I took a deep breath each time they seemed 'healthy' and stable.  As they say, don't always count your chickens before they hatched.  But also, listen to those mothers intuitions!  I put a foot in my mouth now as I humbly speak out loud saying I do indeed have a special needs child. 

This child absolutely an individual name and identity.  Colin.  Who this person isn't is the medical names of all these medical ailments.  I get it, those are totally separate.  I've had only a few reminding me that politely or passively.  Let me reassure you all. That is the joy of this mother.  You do your hard work researching the medical information but when it comes to that bread and butter of a loving bonding time with him all that gets left at the door.  Colin is absolutely the most sweetest, kind, loving, and happy boy despite all of the conditions he's had to gleefully face in his little life thus far.  This doesn't mean I won't express his conditions, findings, frustrations, exhaustion's, and do a glimpse of educating to my friends in person or Facebook.  That doesn't mean my outlook on my son is "poor him! SOB story SOB story.." Merely, while I educate others I reassure myself.  To build that support system is those who are able to hear the situation and reciprocate compassion, and empathy.  I'm open to constructive criticism as well as feedback but it doesn't mean I will always agree.  A few simple caring words and support verbalized here and there goes miles.

What isn't support, in my mind, is having Mikes father lay him off right on the verge of almost being done with college on his end and me just beginning.  Not to mention all the out of pocket expenses with Colin and extra gas we've been paying out for lately.  As many might know, we've had a long term estranged relationship for which I won't go into detail unless you'd like to come to me personally and discuss.  What matters if that the focus is put onto my 4 boys at this time and hopefully they can work past their issues.    

We have decided to have a quiet respectful Holiday season low key of any extra stress, drama, or harassment.  If any extended family members would like to reach us they can do so directly on here, email, phone, etc.  We won't be speaking with Mikes parents or his half sister Marci, at all during this Holiday season and we won't speak with extended family through them.  Please come to us directly.  After all the diagnosis with Colin, we want to spend time with Colin and not have extra stress or chaos in our lives.  We want to focus on the 4 boys and give them the best Holiday season they all deserve.  Also, if Colin does indeed have this extremely rare CDD Autistic condition we want to make sure to invest into a video camera and capture all these precious moments with him now.

Thanks and much love to those who have continued to show their love and support,
Carpe Diem!

  

Autism? or Autism?

As most of you know we've been on a question to determine what all is going on with Colin in terms of possibly Autism.  Certain signs were starting to surface, as new ones have developed, all pointing me in the direction of my intuition once again screaming inside me to say "GET HIM CHECKED OUT, DON'T TAKE NOW FOR AN ANSWER!!" Quite a few others expressed concern in his behavior but also behavioral changes.

The first lady I brought him to saw him for three sessions for which we had to pay out of pocket for since insurance didn't cover for him to get screened for Autism.  They rejected the insurance claim no matter how we tried to send it with what ever lingo.  We could only see insurance approved locations which was very basic services nothing in terms of diagnosing that we needed specially a specialized Psychiatrist that could diagnose him.  Also, IEP wasn't covered in our school district for Pre-k aged kids only Kindergarden since they don't even cater specialized services even to special needs kids.

We live in one of the top districts and honestly this part just floors me after the type of funding this school receives.  It's devastating to me really.  If he didn't have these conditions he could get in with out a problem.  Many Pre-k have actually declined his ability to attend because "he's too big of a liability" this little guy?  He's the most sweetest, happiest child you might know.  He's brilliant, just needs the special touch of a really good teacher or two with the proper patience and technique to help him excel.

On back to the original Psychiatrist we were seeing.  She ended up being a frustration.  We initially saw her to help with his anxiety due to Achromatopsia [day blindness due to low cone/rod cells in the retina makes him see nothing and go completely blind or see white/black, plus he can't figure out all of his colors well.]  It was founded that he doesn't have anxiety from that.  She is seeing another girl who has this same condition around the similar age who has extreme anxiety thinking her mom has abandoned her.  He will keep on walking like there is nothing wrong and perhaps that's just because this light condition is the norm for him.  However, it goes back to being a baby.  He never had separation anxiety vs. my other boys.  Very easy going, hardly cried, very easy to take care of, and loved to cuddle [touch soothes him much].

She didn't want to diagnose him with Autism.  She also questioned it because he showed signs but didn't want to diagnose him until he showed more true signs like by the age of 6-7.  I didn't buy it as many kids at the age of 18 months can even get diagnosed.  I pushed on for answer and needing a diagnosis.  She parted ways offering me to call the Legacy hospital in Oregon.  However, our insurance won't approve it nor will they even see us for at least 6 months with private pay since they're that backed up!  Her reasoning for him spinning in circles is that many girls at the park do it all the time.  I normally don't like to speak negatively of what others say, but this is a serious situation and his spinning isn't just something 'cute' he does, nor is he a girl with a dress.  I was a girl with a dress and know this isn't the same.  Looking on..



There was a few recommendations.  Many phone calls made.  Tons of online research.  It all lead me to a requirement that they had to have experience either first hand or both working with kids who have Autism.  There was a lady in Portland I found who has had like 12 years of running her own Autism clinic, has a special needs child herself, and has seen and interacted with kids with Autism for years.  She was very informative over the phone right away, prompting many questions as I juggled Colin with his outburst over the phone towards Braeten [he doesn't want him to touch the iPad, ever.], understanding and showed honest empathy towards my situation.  I could tell there was far more depth to what she does and decided to pursue her as his new Psychiatrist to get answers.  Things had been changing and answers needed to happen.

She saw Colin for 1/2 hour play during the first session while asking me questions during the beginning of the session.  She gave me a questionnaire to fill out at the end that was only 2 pages but told me we'd complete the rest over the phone for a 1 hour consultation.  That way we don't have to physically come back and can just complete it over the phone.  After 5 hours of Biology at school, I arrived home for food only to spend that full hour speaking with her over the phone about his quirky ways and changes, returning back to school to complete 2 1/2 hours of english in the evening.  Not to mention eye exams at Casey Eye Institute in the morning for Colin and Braeten.  That day was intense!  That all was followed up by the final session she had with him on this recent Saturday to make sure of certain things from him.

When we showed up for this session she handed me more paper work to complete which was around a 2-4 page questionnaire with some new questions.  During this time she went to the main room to 'play' with Colin.  Since he's never had separation anxiety he left with out a problem not even asking where I went and rather excited to play with this fun lady again.  She read him a few stories with 2 being logical and 2 other being more in an emotional story form.  She said like clock work he clung to her during the logical stories but emotional stories he went off playing 'tuning out' the story and checking out the toys and rambling off about their name, info about them, etc. she kept on reading but he didn't engage in the story at all vs. the logical story.  She said he seems to be aware of his emotions which is why she puts him as a mild aspergers right now.

When she was completed with him during this testing play time she called me back.  She started into telling me this situation has rather perplexed her.  Wow, does this sound familiar with Casey Eye on his mystery 'day blindness' that even our original pediatrician thought I was nuts for saying[seriously, that's why he's no longer their Dr!]!! He is showing signs of Aspergers but there is a few degrees that aren't typically characteristics of Aspergers but that's not to say that he doesn't have it she says he does but not as extreme.  She even said what ever I've been doing with him emotionally, verbally, and otherwise to keep doing it because he's the most high functioning Aspergers child she's seen.

However.  There is some questions she has about his diagnosis in terms of if he has Aspergers or possibly this extremely rare [1:100,000 kids] form of Autism called Childhood Disintergrative Disorder.  Where in the period of their first 10 years of life they actually regress and go into what they refer to as Classic Autism.  Where they have no bowel controls, speech is gone, etc.  They literally are sucked into that 'world' of Autism due to brain damage.  She said there is certain key things we need to be aware of that she'd cover in our need final IEP overview from her final diagnosis.  When or if these signs show up that we'd need to see a Neurologist to determine if that is really going on.  However, the more I've thought about it the more I just want to skip to the Neurologist now and see if insurance will approve it.  Do I really want to wait these precious years of his childhood trying to determine if he's going to go into this complete fog for the rest of his life with no more giggles, words, jumping for joy of happiness, smiles, oh my god..I want answers!  Now.  I already have to wait on pins and needles about other problems that happen with Stickler Syndrome now to think about 'waiting it out' to see if he shows up signs of this CDD to?  No, I want to know if he has it now.  If he does, I want to enjoy this time with him to the fullest.  I want him to enjoy it to the fullest.  He deserves it.

It is really hard to see his speech get worse.  This is one of the signs she has mentioned as to why she thinks he has it.  He spoke fluent and highly articulate even more so than his brothers.  However, around 3 years his speech dropped off to bad pronunciation of vowels and other letters.  For example his brothers name Logan was pronounced Woden.  At the age of 4 years he now stutters really bad and will go in and out of a conversation with out maintaining it like he used to.  He never used to stutter or speak this way.  You can work with him on correcting it and it doesn't work.  Not only that, it wasn't until his Gluten free diet did he not have a solid poop ever.  After 2 weeks on a gluten free diet he did.  It was a shock.  He still complains about his stomach hurting in the evenings or being hungry and hurting or even really thirsty.  They're going to check food allergies but the Pediatrician wants to rule that out to determine if there is anything else going on instead.  He has looked at peoples eyes less now.

Here is some information on it: http://en.wikipedia.org/wiki/Childhood_disintegrative_disorder       



  

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.          

Another and new diagnosis.

Today was began with collecting all the final bits, pieces, and distractions for the kids as we all had to haul all 4 kids with us to an initial screening to Colins Psychiatrist.  The older two were unable to get into a local play area which means they were instead distracted by the good old virtual baby sitter for an hour called Nintendo DSi.  They hung out in the waiting room area while we were back in the actual room for this lady the pediatrician recommended.

Colin was initially greeted by her with a warm welcoming "Hi, Colin!" that he quickly looked down with out greeting her back to ran away from singing one of his many random on the whim songs he creates in different changes of situations.  Settling with her unique pile of toys within the room.  He started to self entertain as her initial screening of us parents began.  She started from how the pregnancy went towards how he behaved during baby years, toddler years, up until his current age of 4 years.

A brief overview of what was mentioned is that he has never had separation anxiety.  Never.  I could leave for movies, with childcare, random strangers..and never would he ever be upset about this.  This is a strange sign within babies and infants that has always set a red flag off within me internally.  I mentioned it to previous pediatricians but it was always discuss as perhaps it was just related to his unexplained vision problems that he couldn't see me or hear me which means he never became upset at my dismissal.  The thought I always had towards this perspective is that..how come he never fussed ever after he noticed I was removed from the same room setting and he was in with complete strangers even casual sitters?  After having 4 kids..something isn't right about that.  He was always a low key casual laid back little guy.  Very well mannered but also limited because of his vision problems.

Another situation is his extreme intelligence.  This isn't a problem.  But it can some times be a sign related to Aspergers or certain Autistic levels.  For example, Braeten at the age of close to 16 months is hardly speaking to the level that Colin had.  Given I focused on a consistent daily basis pointing out letters, numbers, uppercase vs. lowercase, and other educational information such as shapes..he caught on immediately.  At 16 months of age we went camping where he was trying to walk around with my guidance.  Leaning up against some ones vehicle he started to repeat the letters on a license plate I pointed to.  I don't remember exact letters but I just recall him him telling me X..upper case X say "Xsss" in a habit form.  He continued to tell me the additional letters in the same way.  "Lower case W..says "Wah" and such.  This was impressive!  He is also reading 3 letters words within the age of 3 years in additional to being able to properly count items at this early age up to 20.

This isn't something that even his 6yr old brother was doing well in school with, let along my oldest when he was starting out in Kindergarden.  He has been catching onto basic 1+1= discussions between his older 2 brothers as he greatly wants to keep up.  He can also tell you since the age of 2 what each dinosaurs name is very rapidly as well as their technical background.  Same goes for Thomas now. He can tell you all about the characters and is completely obsessed with Thomas on the iPad.  If a show ends, he has a complete meltdown [this has always happened for years with any favorite shows he has to watch obsessively such as Dino Dan].  I even recorded a few videos over the toddler years of his extraordinary gift he's had after being blown away.  He can even typically tell you what they eat, and what time period they're from.  If you try to confuse him with joke he gets extremely provoked into a frenzy that is hard to get him out of.

These are just a few things he has had.  Sensory has been a huge problem but researching it independently given Aspergers [High functioning Autism, only about 2 years ago was it finally placed within Autism spectrum because based upon certain mannerisms they share.] runs within my family and one known case upon Mikes 2nd cousins, it's highly likely what might additionally be going on with him.  Asking others who have diagnosed kids with different spectrums of Autism really gave me a final "yes, this need to be screened..immediately.  I want a yes or no."  The earlier you find it the better the outcome as everyone has said.  My own brother has Aspergers which there was plenty of similar mannerisms, habits, obsessions, sensory concerns, and more that really put up the red flag for me.  I've worried about Logan in this regard as well.  Perhaps he has it to a lesser degree or not at all.  But I might have him screened just to make sure.

This is an image of Colin and my brother Brady camping last year near Fort Stevens Oregon. My brother has been diagnosed with Aspergers which is what they're screening Colin for.  Ironically, Colin has his favorite Dinosaur book on hand. He loved all the detailed info you'd read to him from each page and memorized it almost instantaneous. 

Phew...already a long blog post..but which blog post isn't long when it comes to something diagnosed or determined or to be determined?  It helps me track it in addition to Colins spiral notebook I've started to track everything within.

Aspergers.  What is it? [Note: we don't know for sure YET if this is what he has, yet.]

Wikipedia states:

"Asperger syndrome (AS), also known as Asperger's syndrome or Asperger disorder, is an autism spectrum disorder (ASD) that is characterized by significant difficulties in social interaction, alongside restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development. Although not required for diagnosis, physical clumsiness and atypical use of language are frequently reported.^[1][2]

The syndrome is named after the Austrian pediatrician Hans Asperger who, in 1944, studied and described children in his practice who lacked nonverbal communication skills, demonstrated limited empathy with their peers, and were physically clumsy.^[3] The modern conception of Asperger syndrome came into existence in 1981^[4] and went through a period of popularization,^[5][6] becoming standardized as a diagnosis in the early 1990s. Many questions remain about aspects of the disorder.^[7] For example, there is doubt about whether it is distinct from high-functioning autism (HFA);^[8] partly because of this, its prevalence is not firmly established.^[1] It has been proposed that the diagnosis of Asperger's be eliminated, to be replaced by a diagnosis of autism spectrum disorder on a severity scale.^[9]

The exact cause is unknown. Although research suggests the likelihood of a genetic basis,^[1] there is no known genetic etiology^[10][11] and brain imaging techniques have not identified a clear common pathology.^[1] There is no single treatment, and the effectiveness of particular interventions is supported by only limited data.^[1] Intervention is aimed at improving symptoms and function. The mainstay of management is behavioral therapy, focusing on specific deficits to address poor communication skills, obsessive or repetitive routines, and physical clumsiness.^[12] Most children improve as they mature to adulthood, but social and communication difficulties may persist.^[7] Some researchers and people with Asperger's have advocated a shift in attitudes toward the view that it is a difference, rather than a disability that must be treated or cured.^[13][14]"       
-----------------------------------------------------------------------------------------------------------------------

During this screening she pointed out but also asking if he ever comes up to me to get my attention by asking "mama?" or with his words.  She pointed out that it appears he gets our attentions mostly by physical contact.  During this appointment he ironically did his infamous upside down on his head laying towards the back of the couch he's done for years. She said this is most likely soothing to him but he's probably also trying to get my attention to ask something or just trying to self sooth.  As he also did during this screening his additional spinning in circles at least 3 times with his head to the side arms out all the way for long durations with out getting dizzy.  He has never really tried to get my attention in a verbal way like the others do.  I've never noticed that!  She was completely right.  He does this with his brothers as well by tackling/tacking out of their hands with them to get his way vs. expressing it no matter the follow through on my end.

Next Wednesday is his appointment to meet with him only.  She asked if he'd be ok with this.  I told her most likely as he's never had that separation anxiety.  This was a huge consideration for screening with Autism as this lady see's another client that the Dr recommended solely because the other girl has anxiety from Achromatopsia and see's her to deal with this anxiety it creates.  For example, if they leave a store it becomes extremely white/bright that she can't see a thing [like Colin] but she panics thinking her mom left her all alone.  Colin doesn't have this.  Instead he keeps on trekking on forwards with no emotional concerns about this change in his environment.  Perhaps it's because he's become used to it?  I've always thought it was quite interesting.    She also said she see's no need in him having the anxiety that this other girls has with Achromatopsia with the 'day blindness'.  Of course if there is ever the need she will express it or I will to her.  He just has this determined way of carrying on with no problems but does complain of the eye pain in bright settings.

This leads me to another interesting path.  
What Preschool will accept him..now?  How much will it cost to even try to get him into one that will accept him?  How will be accommodate his behaviors, Stickler Syndrome with bonking into things for possible Retinal detachments [I'm a pretty laid back mom, so this extreme fear is not something fun to hold onto! Something I'm working on as I don't want to leave in complete fear of everything and put my poor child in a bubble!], light sensitivity problems..combine those altogether..what type of class will be end up being in when it comes to actual Kindergarden years and after?  I don't want him to just get shoved into Special education if he doesn't need to be.  I don't want that to hold him back if their studies is not as intense as he'd need to stay interested in his studies.  Perhaps that's just ignorance by saying that..but it's a complete concern of mine.  I'm not about to have him stuck backwards because of certain learning curves and naturally want the best for him.  He has such amazing potential that needs to be cultivated upon with the right teachers!  I really do think amazing things are in store him for him despite all these challenges in front of him.  All this combined..can he even get into any preschools as he has an extreme problem with depth perception that makes him fear sitting on the toilet so potty training has been nothing but a constant struggle for 2 years now. He just isn't interested in it either no matter the rewards.  It becomes a struggle to which I have to pick my battles upon.

That is all for now..I have to attend to him as he's not sleepy yet!