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.