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!

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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.