AUGUST 27, 2013or14?

I often feel as if I'm moving in slow motion. But there is so much to get done in a full day. For me, one day ends up feeling like three separate days. Gone are the days when I filled my entire day with things "To Do." Moving smoothly from one thing to the next. Now they are filled with alarm clocks that wake me from a sleep, resting, or a distraction. -ring- feed and dress children, take them to school. -ring- take JJ to the bus. -ring- chores. -ring- Meet JJ at the bus. -ring- go pick up boys from school. homework. chores. -ring- go make dinner -ring- evening meds and bedtime routine.-RING :) - Talk to Leif while he drives home from work.

JULY 17, 2013

The lady we sold our nanny agency to over eight years ago contacted me through Facebook yesterday. She asked if we could talk and she gave me her phone number. If you know me very well, you know that I don't love to talk on the phone much these days. Between my three boys gravitating to me any moment I am on the phone and my spontaneous brain fog and twisted tongue episodes I very much prefer communicating through the internet or through text messages. But that isn't really the point I want to discuss when I bring up this subject. My point is actually LIFE and TIME. Everyone has such a different perspective of life and the time that passes within it.

DECEMBER 11, 2013 Life As We Know It...

I've had a few close friends write me lately and ask me how I'm doing. I've been quiet online lately. If you know me well, you know that's a surefire sign of me being down. Either that, or life is just incredibly busy. And right now, both would fit.

There is Much to be grateful for and I am truly not without Gratitude for those blessings. But since I've been asked what is keeping me more quiet lately then I guess I'll try to put some of it into words without trying to sugar coat it.

My struggles are nothing new. My well being can fluctuate from fabulous to bedridden in a matter of one day to the next. The unpredictability and  lack of rhyme or reason is wearisome to say the least. Two nights ago I went to bed feeling as if I was surrounded by a dark cloud. No matter how hard I tried to cheer up I could not find it within my soul. It is a terrible feeling! And then without warning or known reason, when I woke up with one of the kids fussing at 2 AM that morning I realized I felt more light within my soul then I had felt in days. I felt strength and cheer. Vigor and motivation. I spent the next hour trying to wrestle between planning a sledding trip with Leif and the kids and going back to sleep. I spent a wonderful day with my family. It felt as if everything was well in the world. This feeling started to subside toward the evening. But it never completely left me. I have still felt alright for the few days after that one great day. But never like I was feeling. It seems after I have those high moments they gradually (or all at once) will just fade away and I'm back to battling for my sanity. For a clear mind and a strong body.

I've been asked about my MRI results for the Pituitary tumors that were found last year. I just had another MRI done last month. Well, apparently there were no signs of problems that were found on the MRI. Lovely! So the same symptoms are there (and worse) but the "reason" has gone missing again. When we read the results of that MRI, Leif and I had just gone through a stack of unpleasant medical bills. All for appointments that had led us NO WHERE. At that moment we both concluded that we're taking a break from doctors for a while. It's just way too expensive to spend money for no answers!

We're finding some answers for our kids though. Not necessarily pleasant ones...

You know, it's easy to talk about my kids when their triumphs and trials are fairly typical of the everyday ordinary child. But it gets more like walking on egg shells when things get more complicated. Sometimes I wonder and worry about what people will think. But mostly, I just want to respect their privacy. They will grow up and read this someday. And if not them, maybe someone else. But it's impossible for me to find time to write a private blog as well as continue this private blog. And a record needs to be kept. I rely on our blog as a reference and a documentary of our life.  And our life is what it is.  And the diagnoisis' given today will very likely change later on down the journey. So I just have to continue on writing how I have always written. Openly. Unless, I feel prompted otherwise.

Right now, Caleb has required our most urgent attention when it comes to getting medical help. We knew that all of our boys struggle with Sensory Processing Disorder. And for Caleb this has always been a very real struggle. But shortly before we moved to Missouri, if not just after, Caleb started showing signs of more struggles then just the SPD. He became more aggressive and disagreeable. Often times if he didn't get his way and Immediately, then he would go into a rage that if not turned off could become dangerous. Gradually he started becoming alarmingly defiant. I came up with a new "look" that he would give us as he intentionally disobeyed us. Not just little things, but big things. This was surprising to us and alarming. Then he started sneaking around and hiding the fact that he was naughty, and "stealing" became a topic of behavior. All of this is "normal" in childhood. But it all happened quickly and noticeably enough that we became concerned and then his teachers became concerned.

This is a really long story. But for the last handful of months we've been working with teachers, doctors, and specialists to observe and evaluate Caleb for everything from Seizure disorders to Autism Spectrum Disorders.  We finally got the diagnosis from the Pediatric Neuro Psychologist:. The diagnosis' as of today is: Sensory Integration Disorder (that's another name for Sensory Processing Disorder) and Oppositional Defiant Disorder. We agree 100% with the SPD diagnosis and gratefully, if he does in fact have the ODD we caught it early and there is a lot of hope that we will be able to help him (and us) create healthy life skills."

FEBRUARY 18, 2014 Caleb Baron ASD Criteria

Caleb Baron Age 5 Years and 10 Months

SOCIAL: 

A.      Persistent difficulties in the social use of verbal and nonverbal communication as manifested by all of the following:

1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people

Socially, Caleb often emanates a light about him. Because of this, sometimes it takes more time and observation of Caleb to see the good, bad, and ugly temperaments that he is filled with. Sometimes the light is replaced with a combination of frustration, fear, anger, anxiety, and moodiness. And the negatives are increasing in frequency. 

With Adults: Because of Caleb's natural sweet nature he is almost always embraced and quickly liked by adults. And most of the time he feels safe with adults. If he is in a "good place" meaning he isn't overly distracted or frustrated by anything, he will verbally communicate with adults through the introduction process. Caleb and his brothers have been taught the steps of polite communication from a very young age. This is most likely why he is able to follow through with the introduction process which for him would most likely be something like "My name is Caleb!" they chuckle at his forward approach. They'll ask his age. He'll tell them "I'm 5!" and this is where he might turn off and not be able to follow the conversation for various reasons. He is usually not able to carry on a detailed conversation about things he is asked to recall, such as "what did you do in school today?"  "What did you eat for breakfast and lunch?"  "What was the letter or word of the day?" If he is able to recall, the answer will most likely be very vague and he might struggle to find the right words for what he is trying to say. So he will get frustrated and change the subject, shy away, or throw a quick fit.  However, there are times when Caleb becomes a chatter box. He can go on and on with stories about his favorite subjects. Mostly what is happening at the moment (ie "we're going to the park!") his computer games, brothers, or imaginary strategy games that he and his brother play. But those times are becoming less frequent.

With Children: Again, if Caleb is in a "good place," he will follow the traditional social steps of the introduction process with other children. But the ability to create a steady friendship has been impossible for Caleb. The struggle comes because he is often overly physical and/or affectionate and can be very overwhelming physically as well as verbally loud and babble like. Physically, he has a lack of boundaries and verbally he talks and acts out things that are usually of no interest to children his age (weapons, military strategy, documentaries, or just babble chaos)  Caleb is often afraid of the "normal" shows and activities the other children play. He was and might still be terrified of Nick Jr's Backyardigans. He is afraid of all of the imaginary fears from Winnie the Pooh. Monster's Inc was pure anxiety to watch for him. Sometimes we can stop the shows at this point in life and walk through them with him and prove the imagination and reality of the fear in them. But most of the time he has to run in and out of the rooms back and forth if the shows are on that cause him fear or anxiety. And 90% of the time these shows are supposed to be directed toward children his age. Show him the History, NOVA, or Discovery Channel, and he'll sit on the couch calmly through the whole show.  So, with this interest division Caleb has little to relate to with the typical child so this compounds his struggle to make friends. Also to compound this problem even more Caleb lacks the ability to empathize with the needs and interests of people around him. He may recognize their lack of interest in his games, their distress, or that they are board, but he is unable to regulate his needs, instincts, and desires to meet the other persons needs. It is a classic egocentricity to the extreme. 

One of the concerns we have with Caleb socially is his lack of acceptance or recognition of "Stranger Danger."  This has been a huge fear of ours as his parents. He has an overabundance of fear in him. But often it is not related toward people. So if he wants to go to a certain place (to the GoCart Arena behind our house for example) no matter how exhaustive we have been in trying to explain the dangers of going by himself, he will sneak out and go. We have had to restrain him at times to ensure that he will not leave our house or location without us.

Caleb struggles with playing with children who won't play exactly how he wants them to play. If they won't play his way he whines, fits, and fusses constantly. 

SPEECH - MOTOR - SENSORY:

1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).

2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).

3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

Each of our sons have a family nicname. Jakob is Radar, JJ is Play by Play, and Caleb is Navigator. We named Caleb our Navigator because he pays close attention to the routines and patterns that we follow while traveling but also in every day life. If we drive the same route a couple of times and then switch our path he will let us know and if he is out of sync, it could cause a fit. At the least, he will powder us with questions over and over and over about where we are going, if we are there yet, and what landmarks he can look for to help him gauge the time-frame of our trips ending. In daily life Caleb has an extremely hard time with transitions and change of plans. It is routine to explain the plan ahead at almost every transition (ie "we will gather the eggs, read your book, and then you can play the computer until the timer rings and dinner is ready to eat." And almost without fail, Caleb will still squeal and argue at the time of transition. And if the plan suddenly changes in the middle we can count on a major tantrum that could lead to extreme behaviors like destruction of whatever is around him to the worst being throwing dangerous objects across the room such as canned food and even scissors. These out of control tantrums started around Caleb's 5th birthday. He was prescribed Clonidine to help keep these tantrums from getting so out of control. I would say it has helped enough for us to continue giving the medication but we still question whether it is the right medication or not for him.

Caleb is fixated with the computer and video games. If there is a computer near by or a Kindle, or anything that has games on it,  he will beg to play or sneak away to play even when told clearly not to. This is a source of constant temptation and anxiety for Caleb and for us. I believe it is possible that Caleb is thinking about or processing something from the games almost continually. And the anxiety stems from the restriction that we have to give to help him find a balance. 

Caleb struggled with Speech Delay as a toddler. He was in speech therapy through the years of 2012 through 2013. The Speech Therapy helped him a lot. He is now able to speak and speak clearly. However, he still struggles with certain things. He speaks in a nasal tone. It can become high pitched and even more whiny sounding as he gets tired or stressed. At home we have started something where I help him find a lower tone to speak in and he has to ask his questions and converse in the lower tone that we've found in order for me to respond to his requests. 

It is not uncommon to see Caleb flapping, fidgeting, flopping, one thing or another, hands, arms, body, tongue, fingers, legs, eyes...  etc.

Caleb is "clumsy" and lacks age appropriate motor skills. Falling is just part of walking for him. Throwing himself back, forward, or side to side, without a concept of what he might hit is a normal frustration for us as his parents. Caleb is just now able to try to work with shirt buttons (he is almost 6.) He still struggles to dress himself and won't dress himself alone without Serious Motivation. Backwards, inside out clothing or pants tucked in to socks are not noticed by Caleb unless we point it out to him. 

SENSORY: Caleb's Sensory Processing issues became pronounced by around age 2 or 3 and became a serious issue by 4 years old.  He struggles with all forms of Sensory Processing Disorder with the most common sensory need being Seeking stimulation. His SPD has ebbed and flowed over the years with issues coming and going. One issue that has never changed is his struggle with certain types of clothing. He will only wear certain shirts, socks, and shoes. And nothing will change his mind. He has to have his pants on before his shirt so the shirt doesn't touch his legs as he gets dressed. His shoes have to feel Just Right as do the socks or he won't wear them. There have been times when we have dressed him in clothes that he didn't feel good in and he is completely undressed by the time we arrive to our traveled destination. Coats and jackets are a similar issue. And colors can become an issue as well. Sometimes certain colors will stimulate fear for him (this is very interesting...)  Caleb is very touchy-feely. He seeks grounding by touching his feet to the closest person or thing to him. Tackle hugs are his normal. Caleb chews on everything. He could chew a hole through a shirt if we don't catch it in time. He chews on anything...

Caleb is "clumsy" and lacks age appropriate motor skills. Falling is just part of walking for him. Throwing himself back, forward, or side to side, without a concept of what he might hit is a normal frustration for us as his parents. Caleb is just now able to try to work with shirt buttons (he is almost 6.) He still struggles to dress himself and won't dress himself alone without Serious Motivation. Backwards, inside out clothing or pants tucked in to socks are common and not noticed by Caleb unless we point it out to him.

Caleb is sensitive to sounds and lights. He varies between hyper and hypo sensitive. Sometimes the more the better. Sometimes anything flashy or loud is scary.

Smells can be very upsetting for Caleb and they can also be soothing and comforting. An upsetting smell can cause a melt down and nausea if not eliminated or redirected.

Unbalanced temperatures can cause a total melt down with very little warning. Especially when entering a vehicle or while driving. Cold or hot, it takes breaking down the steps necessary to get settled and calmed while a frantic effort to balance the temps are happening behind the scene. It goes something like this, Caleb: "It's COOOOLLLLD!"(Flapping, wreathing, screaming, while standing in front of his car seat as he is directed to buckle up.) Parent: "Caleb, the first step is to move.... Take off your coat.... You know you need your coat off while you drive or you will get too hot.... Climb in the seat.... Find the straps.... Buckle them.... Your body will warm the seat.... As soon as you're buckled you can wrap your coat back around you.... Buckle up....  We need to go so the heater will warm up...") 

SLEEP: Sleep is a struggle for Caleb. At age 3 we started using Meletonin for Caleb to help him "turn off" enough to fall asleep at night. If Meletonin isn't used to help him sleep Caleb is able and inclined to stay up for hours past his bedtime. When prepping for an EEG he was required to stay up until midnight and then only sleep 4 hours and then to sleep through the procedure. Caleb stayed up until midnight with no problem whatsoever. And was not able to fall asleep during the EEG test. Through a regular night sleep with the Meletonin it is not unusual for Caleb to wake up one or two times in the night coming in to parents' room or from an upsetting dream.