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Sunday, December 25, 2011

Merry Christmas....

May you all be blessed this day with the amazing wonder of the first Christmas which brought the greatest energy of the most high God into human form, to walk among us, be vulnerable, and live with us as we are.  May you know this day that YOU are so important and wondrous that Christ came in human form to live with us, teach us, eat with us, laugh with us, cry with us, and just be with YOU in general.

May the joy of sharing gifts, sharing food, sharing time and laughter and tears be s gift that lifts your hearts, minds, and spirits high.

My pepperoni loving son was excited to see that Santa had put a huge pepperoni stick in his stocking "OH MY GOSH!!!  Santa gave me pepperoni!!"  That was Josiah.  Gonzo was so happy to open the only thing he asked for--a Bop It game, and has been having fun playing with it. We spent the night at A's house and Santa visited us there.  My Mom and step dad as well as my Dad and my brother all came over for Christmas Breakfast and to see the present opening.  Everyone is always amazing at how calm my kids are and how you have to keep encouraging them to open gifts,a s they have no problem stopping for long periods of time to play with what they have opened.  Later (if I can get the kids away from their other gifts) we are supposed to meet my sister Sharon and her kids at dynamite hill with their new sleds to go sledding.  Then we go over to her house for Christmas dinner.  We are bringing a turkey, which is roasting in the oven.  A will probably bring it directly to the house if I take the kids sledding because A is not fond of sledding.  So it works alright.

I hope everyone is having a wonderful and amazing Christmas day!!

Wednesday, December 21, 2011

Gingerbread men and Chirtmas fun.....

So, I know I have been on here quite a bit lately talking about the ups and the downs of raising children with special needs, or rather more accurately, dealing with a world still struggling to accept all people as they are, no matter what their abilities, behavioral/social challenges, or medical status.  So I have not posted much about our Christmas preparations  (Sorry for the lack of pictures, I have not emptied my camera as I can't find the cord to do so, but some pics will be coming soon)....

A couple of weeks ago we put up some outdoor lights and started our nightly advent calendar, which has a great piece of chocolate behind each door.  and one of the things that I greatly appreciate about my children is that they do not try to sneak another candy out of one of the other little windows, the thought never crossed their mind.  They love that nightly ritual of finding the right number, opening the little door, reading the words behind the door, and pulling out that morsel of chocolate to unwrap and enjoy. YUM!

Last weekend I tried a few different cookie recipes--mainly trying to find both a sugar cookie and a gingerbread cookie recipe that we like the flavor and that are easy to work with.  I found a wonderful tasting sugar cookie recipe, and if I do the ball and flatten method they are great--very easy and quick, but cutting them with cookie cutters was a bit more difficult, so a LOT of in and out of the fridge to firm up the dough.  BUT they did make great shapes, held their shape well, and were the best tasting sugar cookie I have had.  So I will make it again. 

Then I found the best light tasting gingerbread cookie recipe (while I like traditional gingerbread, with dark molasses, the kids are not fond of the flavor).  This recipe for gingerbread men is perfect!  It has a nice light ginger flavor, it forms a great dough ball and is very easy to roll out, cut with cookie cutters, and transfer.  I made a dozen and half cookies this weekend (which we all had a blast decorating), and they were all gone by Monday afternoon.

The icing I used for us to decorate with came out beautiful.  It was another recipe I found on and was shiny, beautiful icing that was easy to work with and dried shiny...and it worked great on both the sugar cookies and the gingerbread men.  Yesterday the kids and I made another 3 dozen gingerbread men cookies (both gingerbread man and snowman shapes), as today is a cookie workshop for grades Pre-K thru 2nd grade at Josiah's school.  So we signed up to send in a couple dozen cookies to decorate.  And at 10:00 I will take the little girl I babysit up to school to join the festivities of cookie decorating.

This weekend we also put up our tree!! Gonzo had a great time decorating.  Josiah however was not keen on it, he hung a couple of ornaments, but was not very interested in it really.  We also put up the tree at A's house.  Again Gonzo was excited to help, and Josiah was not really interested, but did put on a couple of ornaments. 

I have wrapped most of our Christmas gifts, which is a new record for me, usually i have at least half of the gifts still to wrap on Christmas eve, which means short night.  As we will be visiting A's family the 23rd and 24th, and making the 5 hour drive on on Christmas Eve, I did not want a lot of wrapping on top of tat, we need rest before the busy and long day that Christmas often is.  We will be at A's house for the overnight so the kids will wake up there Christmas morning.  While I love having Christmas morning at home, it is A's turn.  It will be fun.

I hope you all are having a wonderful Holiday season.  Happy Hanukkah to all those who have begun celebrating this wondrous 8-day holiday.  And Merry Christmas to all who are enjoying advent and preparing for the celebration of Christ's birth.  And Happy holidays to all others who are celebrating Kwanzaa, Yule, Solstice (TODAY), and all other holiday traditions surrounding this festive time of year!!

Tuesday, December 20, 2011

A Dentist!?!!? Elves make Toys!!....

Okay, so this has nothing to do with Rudolf or the elf that wants to be a dentist, but it does have to do with a dentist, so I had to have a more seasonal title..


I believe I have posted before about the saga we have had trying to find someone to work on Josiah's teeth (I looked back through and can't figure out what post it was in).  So, I will just do a quick summary.

One of the challenging things about damage to the brain which happens in CP is that for many people the teeth do not form correctly.  When Josiah's teeth came in there were holes in the enamel in various teeth on both sides, and all of the teeth on the left side were visibly thinner and smaller than the ones on the right side of his mouth.  We consulted our doctor and he was not concerned, and we also consulted a dentist.  There was only one dentist in the area where we were that both accepted medicaid AND took kids under 5 years old. Our thought was that sealing them would help they avoid decay as the holes where decay can get a foothold were already there.  BUT medicaid does not cover tooth sealing, and as we were barely surviving  financially so could not pay the high prices for tooth sealing.  We were fastidious about brushing his teeth and making sure that those holes in his teeth were kept clean. 

But even the best of brushing can not keep things clean entirely, and in the summer of 2010 I noticed a small spot of brown in one of the holes.  As we had moved up here, we found the only pediatric dentist who took medicaid and young children here.  .  I called them first and explained his medical history, as some dentists (and heck, some doctors) can be hesitant to work with a child with his medical history.  They said they see kinds with all sorts of special needs.  So we made an appointment.  Gonzo got his cleaning and check up done first.  And then Josiah's turn came, and they decided at the last minute that to even clean his teeth they needed clearance from a cardiologist and a pulmonary doctor.  As he had been cleared by cardiology as a baby before I even adopted him, I did not have a cardiologist, nor did I have or know where to get, the paperwork showing that he had been released from cardiology.  So began a six month saga of getting a referral to and an appointment with a pediatric cardiologist (with chest x-rays and an EKG done beforehand. Due to a snowstorm in late November 2010, they canceled his appointment and rescheduled him for January.  So finally in January we saw the cardiologist and he was pronounced to have a healthy heart that needed no followup or any special treatment for dental work. 

So we submitted this to the dentist the very same day.  Then we were told his pulmonary clearance was too old for them to be able to do a cleaning.  So I called this pulmonary doctor to get a new clearance letter, and was told it had been too long since his last appointment and we would have to come in again.  So they scheduled us for 3 weeks later.  On the 2 1/2 hour drive to see the pulmonary doctor, my car broke down on the side of the highway.  We missed the appointment, but thanks to a very helpful police man were able to get the car running well enough to limp it off the highway and get it to a shop where it was fixed.  OF course I had to rely on family to help as I did not have the funds necessary, so my Mom and step father put some money on my green dot card (handy little thing that is).  Josiah and I had a long lunch at subway that day while waiting for the car to be ready to drive back home (the car died completely about 2 1/2 weeks later).  So we scheduled another appointment, the earliest they had was in March.  About a week before the appointment the office called to say that his pulmonary doctor who had been following him since he first PICU emergency was leaving the practice and would I like to reschedule with one of the other doctors, which would be an appointment for late April.  So I declined and decided to find a closer one.  Josiah's pediatrician referred us to a great pulmonary group at a closer children's hospital (only 1 hr and 45 minutes way).  The appointment was for mid-April.  So come mid-April, we got in to see the new pulmonary doc, and he was great.  We got the specific clearances that the dentist needed to both do regular cleanings and sedated dental work.  We took those to the dentist office, and they had to check with the doctor before scheduling a cleaning/checkup.

but this time that little spot of brown had grown and three other teeth with holes had started to show brown spots, and in the areas of thin enamel there was some discoloration starting.  So finally in early June he had a cleaning and x-rays, and a check up, nearly a year after this saga began.  14 of his teeth are affected, with that first one I mentioned being the worst one (that one cracked and broke in early July, but as it did not seem to be causing him discomfort the doctor said it would be fine until surgery.  So we were put on the waiting list for dental surgery.  I got a call from the person that handles it and she said she needed more medical records from his doctor as the surgery center was not sure they could handle his medical issues.  So that was all sent in.  I told her to tell me now if they are not able to do it, as we had waited long ewnough and if they couldn't do it, I was willign to drive out to the dental school attached to a children's hospital 5 hours away as I knew that they could be comfortable with his medical history and current issues.  They got back to me in a few days and said the surgery center and anesthesiologist had reviewed his history and were comfortable doign the surgery.  So we were all set and just had to wait for a space to open up.

 In August I get a call that he is scheduled for September 14th.  So we start preparing for that, hada heck of a tiem scheduling his pre-op, but got it all set up.  And then two days before the surgery he developed a fever and stuffy/runny nose and a cough.  So he could not go under anesthtesia.  So he was again put on the waiting list.  I got a call in mid-November that he could come in either december 8th or 22nd for the surgery as they had openings on both days.  So, as his concert was the 8th and he was so excited about the concert, we chose the 22nd as his surgery day.  We had his pre-op done, got everythign all arranged, and even notified the school.  He had his intake phone call with the nurse on Friday, and everythign was all set for this coming Thursday.  A and I both took the day off, and were ready to roll.  Josiah had been complainign of tooth pain since Saturday, so we have been rinsing with salt water a few times a day, and I was looking forward to him finally getting these teeth fixed.

Then on Monday morning I get a phone call that the anestesiologist changed their mind at the last minute and now is not comfortable working with josiah's medical issues.  So they can not do the surgery.  18 months of jumping through hoops, getting clearances, being told that they can do it, and THIS last minute decision NOT to do it.  At least they are calling in a prescription for amoxicillin to deal with the infection that appears to be developing in Josiah's tooth.  But that does not solve the problem.  Now we have to start over.  Now Josiah has to wait even longer with his teeth getting continually worse.  Even with good brushing and trying to make sure he rinses with water after eating sweets or crackers that stick to his teeth, his teeth are still slowly deteriorating.  For a kids with a great smile and such a normally happy disposition (except at school for soem reason...) it is horrible to make him wiat any longer.  So, I am a bit frustrated....well much, MUCH more than a bit.....

I just have to breathe and roll with it, and doctors, dentists and teachers are definitely not all cut from the soem cloth.  Some are in those positions becasue they want to help all people, and others only want ot work with the easy ones, and shove the rest of the children aside.  Good old Nazi ideals at work, elimiate all that do not fit the mold.  Lately, I feel like we are dealing with more than our fair share of inflexible and intolerant professionals when it comes to Josiah.....

Well, maybe with the anitbiotics and not the surgery, Josiah will have a better Christmas.  He always has a hard time for a few days after anestesia....So Merry Christmas....

Monday, December 19, 2011

Josiah's First STEPS!!!!

This weekend my beloved little Josiah took his first independent steps at age 5 years, 4 months, and 8 days!!  He was stading next to the couch (when I say standing with Josiah I always mean leaning on, as he does not stand independently yet), singing a song he made up a out humpty dumpty (his self-made songs always include a few "sentance enhancers" like booger, fart, or his newest favorite butt-crack :o ).  As he was singing he was dancing, and without realizing it he dance 2-3 steps AWAY from the couch before losing his balance.  But he realized he had doneit, he had taken independent steps for the first time!!!

So for about 30 minutes after that he kept practicing.  I actually brough thte practice to a close--for two reason, one was hat it was past bedtime, and the other was that his legs were tiring a lot and he said his knees where hurting from all the landings.  He was not happy that I said it was time to wrap it up and we could practice the next day, but I did not want him to injure himself and be afraid to try again.  He did practice more both weekend days.  He got up to four steps quite a number of times before losing his balance.

This is more exciting then when gonzo learned how to hop when he was five. 

One of the most amazing things about having children with special needs is that when they reach milestones, it has been such a long journey and they have worked so hard to reach that milestone that it is always a cause for celebration.

Thursday, December 15, 2011

Quick weight update

Okay, so I know this blog started off to track my weight loss journey with the unreasonable goal of losing 80 pounds in 80 day way back in March.  While I have realized through this process that weight is not JUST about food and exercise, but rather includes the baggage we carry from our past, the stresses of the present, and how we habitually handle our frustrations and other emotions, I also realize the to get healthy in all areas, I need to put some effort and thought into my food choice.  I recently put a ticker up on the top of the blog.  It starts at my original weight when I started this blog.  I updated it with a weigh in this morning.

So what I have I been doing to assist with  the weight loss over the past few week?

well, first I have been making sure that I eat at least 7 servings of fruits and vegetables a day.

Secondly, I have been eating soup (60 calories) or broth (10 calories) as a snack instead of something more calorie dense, and the warmth of soup really makes you feel full and satisfied.

Thirdly I have been trying to drink at least 3 liters of water a day (one through the morning, one through the after noon and one through the evening.

In the last 2 weeks I have lost 4 pounds.  Which given the holiday foods and the munching that I have been doing is pretty good....I will try to get better about doing a weekly weight tracker.

Wednesday, December 14, 2011

When a day goes well.... is a good reprieve from the stress and frustration of other days. 
Today was a calm day all around, which has been a much needed thing.  I only babysat this morning, so the day was pretty clear.  I focused on refiguring and repricing the materials that I need to do the renovations now that I finally have the building permit.  My mother stopped by and took me out to lunch, which was a wonderful treat.  It is good to talk with my mom without kids distracting us.  After that I went back to working on finding the best price I can for materials.

I was trying  not to stress out too much about some things that happened at school yesterday that the principal had called about yesterday.  he was going to look into it more today, and so I was wondering what that would amount to.  In the early afternoon I got the call from the school, and was able to talk for a while with the CSE chair about the issue, which thankfully they perceived to be the same as I had, and did not turn out to be as big as what I perceived the principal had made it seem yesterday.  So that brought some stress relief.

Josiah had a good day at school, which is always a good thing.  his frog chart (behavior chart with a frog on it) had 12 out of 12 happy faces.  So he got a star student star.  Gonzo also had a good day at school.  The boys were both calm and happy this afternoon.  A got out of work early today (was here by 5:00), and as planned, took the boys over there for dinner and to hang out until about 7:30.  The boys really enjoy being there, and though Josiah wanted to spend the night there, he only resisted coming home a little bit.  I was willing to let him stay even though it is a school night, but A was not up for it.  And normally I wouldn't have been either, as we have agreed the kids should have a consistent school night routine and sleep at home with me on school nights.  Hopefully they will get to spend one of the weekend nights with A.  While they have only spent a couple of nights with A, they have enjoyed it.  And A has been sober for 3 weeks now, and things are calmer all around.  A has also been more consistent with the kids, which has been good.  They enjoy  having both of their parents.

I had a low key evening while the kids were with A.  I enjoyed soup for dinner, watch a couple of episodes of Star Trek:Enterprise, and checked some things out online. The kids came home, took showers and got ready for bed.  We did the advent calendar, which provided their snack (as it is a chocolate advent calendar with a little piece of chocolate behind each day).  The kids took their evening meds and then brushed their teeth without complaining or arguing.  Then I read them books until they drifted off to sleep.

 I have learned through experience that the best way to ward off depression is to do things that bring you peace, AND appreciate the time and ability to do those things.  So today was a good day for bring stress levels down and finding an internal peace....

Recognizing my shortcoming.....

Actually, I think I should have entitled this "Getting whacked across the head and slapped in the face by my own shortcomings....."

I woke up Monday morning about 20 minutes before i had to get up.  I did NOT relish the idea of crawling out of bed, letting the dog out, getting the kids clothes for school together and waking them up...I did not relish the thought of having to vacuum and wash last nights dishes before the kids I take care of arrive....I did not relish the thought of another day of worrying about how Josiah's day was going....I did not relish the thought of dealing with the building permit process AGAIN (yes, I am still working on just GETTING the permit)....relish, relish relish--maybe I need to add some mustard to my thoughts....

So after a few minutes of dreading the day, a day that had not even started yet, a day fresh and new, a day that Who Knows what is going to happen, I realize I had already judged a day that had not even begun...

I have been doing that too much lately. A dear family member of mine is going through a deep depression.  I can empathize with her and give her advice and a listening ear because I have been there.  I spent many years struggling with clinical depression, which eventually neared the debilitating level.  I finally got serious about fixing some old problems that I never dealt with by going into some intensive therapy.  It was not an overnight fix, it was a few years of developing a rapport with a new therapist, working through various trauma's on a variety of different levels, and learning to trust myself, and to know how to separate the emotions tied into the past from the actual emotions of the present.  Sure I worked full time, had a good social life, and an overall successful and good life while I was doing that.  The internal changes that came about gave me the ability to really appreciate and enjoy those external successes.  It was amazing, for the first time in my life I knew how to embrace life without have a constant cloud subduing and dampening everything. 

That was before I met A, before I adopted my children, before all hell broke lose in our lives 3 years ago....And I weathered the ups and downs, ins and outs of these past three years well.  Even with the many challenges, the losses, the stress....All of it I have been able to role with.  My battle with clinical depression appeared to be over...if I could make it through all of what I made it through the past few years and still have my emotions and attitude in check, well I figured I had truly overcome depression (real depression, not hte normal blues and blahs that everyone gets).

But lately I have found my attitude being in totally the wrong place, sometimes, Like Monday, bad from before I even get out of bed.  Today should have been a great day--I went with Josiah's class on a field trip in the morning.  We had fun, and it was great to be part of that adventure.  It was only a 1/2 day trip, so the kids still had school to finish when we got back.  I knew Josiah was tired, but his wonderful aid was going to have him take a rest on his mat.  I figured he would fall asleep, so I left to run errands before my little charge was to be dropped off at 2:00.  I went to my dad's and fed and watered the chickens.  Then I got my mail, and my parents gifts had come in.  Christmas shopping is almost done.  Then I went home and checked messages, I got a call from the town, and my building permit was done!!  Yippee!!!  So I ran down there and paid the fee and got my permit, NOW i can begin renovating my new space and turning it from a laundromat into a house equipped to do daycare.    I was back easily in time to be there when the little one I babysit came.  So I should have had a good day, right...?

Well, after Jos got home, the phone rang and it was the school principal telling me that Josiah had exhibited a very disturbing behavior and asked if his aid had said anything.  She had not said much, just that he did not nap and had a rough period int he afternoon, but that he had come around and finished the day okay.  But the principal was very concerned, and was going to look into the incident more closely.

And I had an emotional meltdown.  THAT is what is zapping my strength, that is my shortcoming...I don't understand what is going on with Josiah.  He has always been my little charmer, my ALWAYS happy boy.  He has always been strong willed but ever since he was a baby, he has been pleasant and self-motivates, and more than willing to push through obstacles.  But ever since starting school KINDERGARTEN he has been exhibiting SO many behaviors, so much frustration, so many inappropriate responses and actions--I am literally beside myself trying to figure out what is going on with him.  The weird thing is that if this were Gonz, I would be upset or annoyed with it, but not dumbfounded, because Gonz HAS a  lot of social and emotional issues that stem from so many places.  With Gonz, I almost expect poor behavior and work very hard to support, encourage, and wrangle him into a secure position to keep behaviors and anxiety in check.  BUT JOSIAH!?!!?? 

My shortcomings that have been running into me lately--I have not been eating right--yes, I do the whole grains, eats beans, lean meats, and try to get enough veggies--but lately my evening have wrought with hunger that is not based in nutritional need but rather in emotional need, so I have been over eating very often.  I have not had the energy to keep a neat or tidy house, so every morning when I get up, I run around for the first half hour doing dishes from the day before, cleaning up the living room, doing all the things that I could have and should have done the night before.  I have multiple baskets filled with clean unfolded clothes, that need to be folded and put away, but I have a motivational or action block that I just donw' understand.  And the longer these behavior issues with Josiah go on, the more I feel like i must be doing something wrong as a parent.  I have tried so many different "expert" parenting techniques (and some old school ones too).  I don't know how to help him understand that his behavior is making his life uncomfortable.  I don't know how to understand what is wrong that makes him have to act out in such drastic ways.  I don't know how to help him. Everyday I put on a strong, confident face, I talk to the teachers and others who work with him and try to remain personable, professional, and share what I know and what I have read about.  I try to be a good parent and a good team member.  And still I feel like Josiah is slipping through the cracks.  The boy who ALWAYS had a smile spends a lot of time crying and being angry now.  My son who was just a ball of joy and amazement is just clouded and fearful that what he is doing is wrong.  I don't know what is happening with him, for him, I just know that I don't know what to do to help him, and no one seems to have any answers.

 And I feel powerless......I just keep praying for something, anything to help this situation.  I-don't-know-what-to-do-for-him or for myself........And slowly but steadily I feel that dark cloud of depression growing, and I am pulling out everything in my arsenal to not go back to that state, but until I can figure out what is going on with Josiah and help him find himself again, I don't see how I can escape the slow dulling of my world.  That is my biggest shortcoming of all......

Saturday, December 10, 2011

A letter to school personnel...

I began writing the following as a letter to some of the school personnel that work with Josiah.  he has been struggling with his adjustment to public school as I have mentioned before.  After I had written this, I realized it was far too long and not concise enough.  It also repeated much of what I have already said in our various meetings.  The school is truly trying to learn how to work with my amazing and sometimes challenging little man, and for that I am very grateful.  Thankfully Gonzo's school situation has been wonderful this year.  he is in a high support classroom, the second year now for him in this setting with these teachers, and things are going very well.  So my focus now is Josiah and how he and public school education are getting along.  So this is what we have been working with.  As I put a lot of thought into this letter, I wanted to share it as others who are struggling with a child like Josiah or in a similar situation might find it helpful:

So here is the original letter, which I later shortened considerably for the actual sending:

I want to thank you for all of the efforts you are making in getting to know Josiah and learning how best to meet his educational needs. A and I have reviewed the video from late November that was sent home, and we have shared it with Josiah.  The frustration and helplessness that the adults are feeling is as palatable as the frustration and helplessness that Josiah is expressing.  So my heart does go out to you.  As a former preschool teacher, I DO understand how challenging and exhausting it is to have a child that is different in the classroom, and how hard it can be to find a way to deal with troublesome and disruptive behavior in a way that is edifying and educational to both the other students and the student who is struggling.  The actual tantrum behavior is something I have seen in smaller ways before at home, but the aftermath that he exhibits at school is brand new to both A and I.  As we do not see it at home and it was not seen at Prospect, it is my understanding that it is something that he has developed as a way of dealing with his current situation at school.  It is the sign that something is wrong.  He may not even know what it is, for him something is wrong and so he reacts.  Everything I have learned about child development both from my time as a preschool teacher and in my studies as an adoptive parent says that Behavior ("good" & "bad") is ALWAYS a form of communication--figuring out what he is communicating and how to respond correctly is the challenge.  This behavior is very problematic and distressing for everyone involved--the teachers, the other students, his parents and he himself.    It is not as simple as 1-2-3, it is not going to be something that makes complete sense, if it was, then we would all have been able to determine what the behavior is saying and respond in an appropriate manner by now. 

A simple example of behavior as communication comes from the first few months with Gonzo.  He did not know how to read his body signals.  He would start running around like a crazy man, throwing things on the floor, biting furniture or people, and laughing hysterically for no apparent reason (one of the reason he went through 5 different foster homes before the age of 3).  He was communicating distress to us, he KNEW something was wrong he just didn't know what it was so he had no way to tell us.  Through trial and error, we discovered that he would do this intense acting out when he was thirsty.  So when he would start this communication, we would get him a drink and say "Gonzo I see that you are feeling uncomfortable.  You must be thirsty."--every single time that a drink stopped the behavior we reiterated that he was "thirsty"  and a drink would fix it.  Over time he learned that what he was feeling was called thirst and to fix it and feel better you get a drink.  Many foster parents and potential adoptive parents wrote him off as a "wild animal" and impossible child all because they did not delve into understanding WHAT he was trying to communicate. (Literally half of Gonzo's problematic behavior stopped once he learned to identify thirst and hunger--such a simple basic need, so easy to meet).  Some may have perceived that to give him a cup of juice when he was acting like a maniac was "rewarding bad behavior", when in reality it is an attempt to treat a distressed human being with respect and help find out what need is not being met, and to meet that need.  Did it happen with just one or two rounds of offering him a drink and helping him name and understand his distress? NO, of course not, it took a couple months of consistently doing so with a slow decrease in behaviors to get to the point that he could read "thirst" signals in his body and ask for a drink BEFORE acting out. 

Josiah is trying to communicate something, and it is something that he himself does not understand, or else he would have told us as he has a great vocabulary and a good sense of his body and himself.  As I have seen some of his tantrum behavior before and concur with the social workers, psychologist and his pediatrician that the temper tantrums are a direct result of him being developmentally delayed in a number of areas, the tantrums themselves, while problematic and needing to be turned into a more appropriate expression of frustration, are actually not out of the ordinary for a child with his issues and development. Some of it stem from frustration about not being able to do what most other children his age are doing.  Perhaps the reason they are so much more intense is that prior to this year, he has always been around more children with a range of development and special needs as well as typically developing kids, and here he is beginning to see that he is different AND is perceiving that as a bad thing.  He talks about being different a lot lately.  He is beginning to talk negatively about himself as well, which is brand new as he has always had a strong sense of pride and a strong positive self esteem.  You all have been doing great work in trying to understand how to appropriately handle a child whose emotional and social development is significantly lower than his peers, and have made good accommodations to help manage his needs at his social emotional level.  I know that for many of you this has been a challenge, as you are unaccustomed to working with children with as many varied special needs as he has, and the wide range of development that they can exhibit, both above and below their chronological age.  In some ways Josiah is on target (like his ability to learn the sight words, and pre-reading skills), in some ways he is above what is expected (like his sense of humor and his ability to read people's emotions even when they are trying hard to hide them), and many ways behind (like his frustration tolerance, his expression of emotions, and his ability in self-care tasks).  It is inappropriate to treat him at only one developmental level because he has many strengths and many weaknesses, in a wide range of developmental levels. 

If you are not understanding why his frustration tolerance is so low, I ask you to look inside yourself and actually DO the following:  stand up, lock your left arm to your body so you can only use it at about 30% function, fold your left thumb into the palm of your hand so it has almost useless, turn your hips so that your knees point towards each other, bend your knees slightly and point your toes in and your heels out.  Now walk across the room like that--try to use the bathroom like that, try to carry your lunch, or get something off the table, or sit down and write a letter.....try to deal with the basic frustration that he has just in moving through the environment (without cheating), just try it for 15 minutes.  And if you are really trying it (and if you truly want to have a better understanding of him, I really suggest that you try this in earnest), you will find that it takes a great deal of energy, focus, and frustration tolerance just to BE.  Now add demands on yourself, add the fact that everyone around you thinks nothing for getting up and using the bathroom, add in that everyone else is writing their name, and you are struggling to get your body in the right position to be able to even scribble on paper.  Imagine that you are expected to be like everyone else, when there is no possible way to be like everyone else.  Your peers can all put their coat on without expending a lot of physical and emotionally energy, they can change their clothes with minimal assistance, they can put the pattern blocks on the paper in the pattern where they want it to be without having to position and reposition central trunk muscles just to pick up a block and place it and hope that it actually gets to where they are trying to put it.    If you can not understand his frustration tolerance, then you have not tried at all.   I do this about once a month, and have since Josiah was a baby so that I can figure out HOW to do what I am asking him to do--it is a LOT more difficult than you think.  He can not do normal, everyday tasks in the way that other people do--AND he has always been self motivated to find a way that works for him.

I know, you are saying "But Heather, do you think we are dumb?  of course we understand his physical limitations and how much he struggles, it is obvious!  We are concerned about BEHAVIOR, not his physical abilities,  We already accommodate those very well!"  Before you get defensive, please understand that I know that you can see it, you are doing a great job in meeting his physical needs and accommodating for those needs.  I also know that you are trying hard to understand it.  I think some of you are struggling to understand how his physical limitations and the delays that stem from them correlate to him throwing a temper tantrum because the car picked him up instead of the the bus or because his name was not picked from the bag to be morning helper or why he throws a fit when a "simple" task (like pattern blocks) are brought out (he can not always get his body to do what his mind sees).  He feels powerless in an environment where it appears to him that everyone else has the power to choose.  He feels that he has no control over his life.  His temper tantrum are the direct result of him feeling so powerless, so different, and so unable to be seen as the amazing person that he is. 

He deals with more frustration every moment than all of the other kids in the class combined, and that is even before anyone does any work or makes any demands on him.  BUT it is his lot, he HAS to learn HOW to deal with greater frustration because these limitations that he has are not going to get better over night.  He needs to find ways to recognise where he is differently abled, and not focus on being disabled.  He needs to understand his strengths and be guided to use those strengths to compensate for his weaknesses. He needs to learn that he does not have to be like all the other kids to be liked by the other kids. He needs to learn to be okay with not being able to write his name right now, he needs to stop comparing himself to other children, and to see that he does belong. He needs time to be himself with other children and form friendships so that he can see that being different is okay. When other kids get their paper up the wall because they colored in  the lines, and he can barely color in the right area, he feels like he does not belong.  When the board only reflects "perfection" as perceived by the teacher, at something that is physically impossible for him to do, it tells him that he does not belong.  It would be like a teacher giving every student in the class an award for something that they do perfectly, but not finding any award to give him because he can not reach that teachers perception of perfect in any area.  That tears a lasting hole in a child's heart, a pain which is remembered into adulthood.  Linda mentioned that Josiah likes to see his name up.  Some may think he is "spoiled rotten" or just "seeking attention"--so quick to think about the problem child--but it is a child that has a problem.  Seeing his name helps him feel like he does belong.  seeing that even though he is different, that he is supposed to be there and be included solves some of the problem that the child is having.  So thank you Linda, for seeing his need for a visual reminder of his acceptance and belonging, and doing something simple to help meet that need. Things like that help build up his confidence and thus reduce the feelings of powerlessness, which in turn lead to him being more flexible about the way he wants things to be and thus reduce the chance of a trigger that will lead to a tantrum.  It is a multi step process to reduce the tantrum behavior.

Now---the aftermath of the tantrum (the swearing, the name calling to adults, the calm exterior with the angry, "wanna be a bad boy" attitude), that is the behavior that has intensified since starting Kindergarten, and I have not worked a lot with it, at least not at the level and duration that he exhibits there.  At home if he gets angry and pulls an attitude, we first use humor to diffuse the situation--which works about 70% of the time.  We often  talk about the fact that its okay to be angry, everyone gets angry,  but it is not okay to be mean or be a bully, and discuss other ways to handle anger.  We talk about how he would feel if someone was saying those things to him, or if he would want someone to scratch or bite or hurt him, and how it makes the other person feel.  Usually he is upset that he has hurt or scared the other person, and says that he does not like to feel that way OR to make anyone else feel that way.  Sometimes he will persist in saying that he IS going to be mean and  is going to be a bully.  Usually we diffuse this with a silly wrestling tussle, pretending to each be the bully, which is probably not appropriate at school, but a quick tickle might be a good substitute.  There have been a couple of occasions where humor, talking, silly wrestling/tickling has not gotten him out of his funk.  So then I just give him space and let him work through it in his head, which is sometimes what he needs to do.  We all need space sometimes after we get upset.

In general, the tantrum are about need--communicating something that he is lacking or a need that he does not know how to verbally express.  The aftermath of the tantrum speaks to him trying to reconcile his own behavior with what he is feeling.  In many ways I am more concerned about the aftermath of the tantrum than the tantrum itself.  Given his social/emotional developmental level, and his level of frustration, the tantrum make sense.  And a way reduce the tantrum is by figuring out what the underlying cause is (not the direct cause necessarily, but the underlying need) such as: 

1) reducing some of the things that he perceives as frustrating (perhaps an adaptive technology evaluation would be a REALLY good idea to reduce the frustration he has surrounding his lack of fine motor ability--I can submit a formal request if you would like. (also like all people--children and adults--if he is hungry, thirsty, or tired he has a much lower threshold for frustration)),

2) helping him to have more self esteem and confidence that he does belong (like putting his name on the board and giving him a fixed job that he can do that will help the class and increase his sense of belonging),

3) giving him a better sense of control in his life (giving him choices rather than commands, acknowledging his efforts at things like pattern block, which he may see how to do but have trouble getting his body to put where he is trying to).

I am sure there are other needs that he has that he may, at this developmental level, express inappropriately by tantruming.  But those three needs --reducing unnecessary frustration/building up frustration tolerance; helping him find his place in the school; and giving him a sense of appropriate control--can be worked with to reduce the number of episodes.  Without the tantrum, there would be none (or very little) of the behavior that he exhibits following the tantrum.  As you find things that work, DON'T try to go back to old ways, stick with what works.  Pushing his buttons to see if they are still there is counter productive.  Perhaps we should discuss an official modified curriculum if you feel the curriculum itself is a problem or the way the curriculum is presented.  He may do well with a good computer based curriculum (supplemented with worksheets and other lessons with the general class), such as he one we used when we pulled Gonzo out of a Kindergarten situation that was not appropriate for him.  We used  Something similar may be a potential modified curriculum as it could be accessed both at home and at school, if it would help to keep him on a successful academic track while supporting and managing his emotional/behavioral needs, and helping him build up the social/emotional strengths he will need as he progresses.

Wednesday, December 7, 2011

Supporting Reece's Rainbow

I actually started another post about education, which I hope to finish later and get it up here.  But first i wanted to give a quick head ups about a great organization that I have talked about before--Recce's Rainbow.  During the Christmas season, they do a huge fundraiser where you can sponsor kids who are waiting for their forever families, or you can sponsor adoptive families who are trying to raise the funds to bring home a child who needs a family.  The Merry Christmas Angel Tree banner in the upper right hand corner of this blog will take you to see the beautiful faces of many amazing children with Down's Syndrome, who are the Angels of Reece's Rainbow.  The amazing thing about Reece's Rainbow is that they started out with the focus of helping find homes for children who have little chance of being adopted--children with Down's Syndrome.  They have also become advocated for children with many different special needs--Like autism, Cerebral Palsy, Spina Bifida, HIV/AIDS, blind, deaf, arthrogopomorphism, hydrocephalus, FAS/FAE,  Apert Syndrome, cleft palate, etc, etc......  Please take a moment to look at the amazing children who are in need of special families, and, if you can, sponsor one of the children....

Monday, December 5, 2011


Today I feel tired, not that physical tiredness that comes from a day full of work, chores, and activities.  But a mental, emotional, spiritual tiredness that comes from searching and seeking answers, a path, the right way to go on so many different topics and levels...the search that has given no clear answers. 

I am so tired of watching the public school system struggle with how to teach children in a way that honors them--their creativity, their individuality, their validity as fully formed human beings......And it is NOT just this small school system.  When we lived in a much larger area with access to many more resources and the choice of multiple Kindergartens )two of which were integrated rooms with both a regular education and special education teacher co-teaching team--even in what SOUNDED like the right environment, it was all wrong.  So it is not just the small school environment.  It is the whole institutional idea that all children need to be the same, all behaviors need to conform to the ideal so f the teacher, all thoughts, beliefs, and performance must be identical--it strips the humanity from the children, it attempts to turn them into drones that fit like cogs in a machine.  Perfect--not even real perfection, but rather the school or teachers idea of what is perfection, is emotionally and verbally shamed and verbally shoved into them.  Any child who understands their sense of themselves, any child who IS an individual, is forced to conform to someone else's idea of who and what they should be, rather than being allowed to be and learn and live and grow, and actually be the best THEM that they can be.  We have reduced human potential down to a limited range of scores on a test and a limited way of socially interacting that is far more artificial than it is real.

And moving is not going to change that.  I would home school as I did with Gonzo when it became apparent how damaging the Kindergarten room he was in (with teachers pushing him down, and calling him stupid (and a principle who backed the teacher instead of listening to our complaint, which came to us through a substitute teacher who witnessed this)). But I can not afford the necessary PT, OT, and counseling that the school provide for Josiah, AND I do believe the social interaction with peers and with other people outside the family is very important for a person to be well rounded.If I had the funds I would love to create a school for ALL kids, with and without "special needs" where they could come and learn in a child directed way, with supporting and encouraging teachers in a supportive and encouraging environment.  Each child being met where they are, and assisted in their education by compassionate, and passionate adults who love to instill a love of learning, growth, and knowledge in children.  I have thought about this for many years, ever since Gonzo entered the hell called USA public school.  The need for REAL education, education that honors and assists children in their learning, and that meets kids where they are and helps them nurture their innate abilities to reaching their highest potential.  Rustam's Ranch Child Directed Education Center---that name was discussed many  years ago.  While all hell broke loose in my world, I have NOT let go of my dream of building such a place, of being able to bring that gift to children, and of finding a way to provide it for free......

Any philanthropists out there who want to fund the start up and ongoing tuition scholarship of such a school????

Saturday, December 3, 2011

Just a quick post....

It has been a crazy week!

After a wonderful Thanksgiving feast and celebration at my sister's house, we were supposed to go out to A's family to celebrate Thanksgiving over the weekend, leaving Saturday morning.  However on Friday afternoon, A was over at my house and we were talking about what time we were leaving, as well as discussing Christmas plans and Christmas gifts.  All of a sudden A say to me "Can you get me the number for St. Pete's, I want to go to detox."  It came seemingly out of the blue, but I gave A the number and A called.  St. Peter's Hospital had beds open and if A was ready to get sober, there was room and to come on down.  So after A going back and forth about going down right then or waiting until after we got back from the weekend visit with family, A decided to go to detox, and get the withdrawal from alcohol done.

As it was so last minute, I could not find anyone to watch the kids so the boys came with us, which meant that after driving nearly 3 hours, we waited with A in the ER waiting room until they called A back for intake and tests prior to admitting.  When they called A back, the kids and I started the long drive home.  To many, you may be cheering and not understand my lack of enthusiasm.  It is a wonderful thing for A to take steps to being sober.  And I pray and hope that the commitment and motivation for that path is here now.  But I also have learned that as A has been through both detox and rehab multiple times (to the point that they don't ever refer to rehab anymore as A could teach rehab so there is nothing more to be learned from it), that sometimes it is short lived. 

So we did not go out of town for the weekend.  We did end up doing a lot of running around, visiting Grandpa and our chickens, and then going to Grandma's house for coffee.  We went to church on Sunday, but Josiah was so out of sorts because A was in the hospital (things like that really upset him), that he just could not keep it together for children's church, so we sat in the little lobby area and waited for Gonzo to be done.  He just was very upset and could not control his behavior.  I have to find a way to help him manage his emotions.  Some of it is development as socially/emotionally/behaviorally he is in the 24-30 month developmental range.  So he still reacts to stress and other things as a toddler would--including temper tantrums and very large expressions of emotion without words.  So I have been trying to figure out how to get him to start practicing other ways of expressing himself.  Some of his reactions. actions and behaviors I think are actually habitual more than lack of development, so I have to find ways to help him break into better habits in his behavior.  Overall though, it was a relaxed weekend though, and then the kids started back to school Monday.  Monday A called with the news of being released at 11am.  I said I could not run all the way down and back until the kids got home and even then it was going to be really hard on the kids to be in the car for 5-6 hours on a school night if I could not find someone to watch them. 

then A did something that A has never done before...A suggested that taking a bus up to glens falls (only one hour away) would doable...A suggested this, something that might make it EASIER for me and the KIDS.  Something not entirely confortable for A (but extremely reasonable for the rest of the world), and A suggested it....I feel a bit of change in the air....  So A took a bus up, and then after having lunch at a little bistro, hung out in the library where I used to spend my days while the kids were in school last year.  A few hours later, around 4:45, the kids and I arrived.  It was amazing to see A not complaining about the bus or the wait.  We all went out to dinner at the 99 Restaurant and then did a little Christmas shopping at Target, mainly just to get ideas as the boys can not think of anything they want for Christmas (did I ever mention tthat my kids are a little odd that way--maybe it is because they are not exposed to TV commercials or other forms of advertising...).  So we walked through the toy area and took note of what the kids reacted to the most.  So now I have some better ideas. 

So far so good on the recovery.  A went to an AA meeting on Thursday and had been going to work and is actually eating food again.  I also have not had A calling all the time or being at my house all the time, stopping over to visit yes, but not staying for long periods.  It feel like A is starting to built a life, a sober, more stable life.  It is these little babysteps that allow me to have a slight glimmer of hope that maybe, just maybe A is serious about re-entering recovery.  It has been a week, and so far so good.  A made it longer this time then the last time.  Celebrate the baby steps...

Aside from that, this has been a crazy week, we have had to go 45 minutes to an hour away each day. Monday was picking up A. Tuesday after school, Josiah had his pre-op for dental surgery and his pediatrician decided to do his annual physical at the same time AFTER we got there, so our 15 minute appointment turned int o an hour long appointment with a few shots, which he was not happy about.  Wednesday Josiah had an 8:45 appointment with his orthopedic surgeon at the ortho clinic.  Then we had to get his x-rays done for his hips, which we not planned (I should have though as he gets them somewhat frequently to keep an eye on his hips).  So he missed school Wednesday as it was nearly the end of the school day by the time we got back home.  Thursday is Josiah's normal aquatic PT day, which is of course an hour away.  Then Friday both Josiah and I were sick.  I still babysat, but Josiah did not go to school.  Between the shots and all the running this week, his body was just pooped.  He had a cough and a fever, and was miserable on and off throughout the day.  For me is has been a wretched sore throat, the kind that is extremely painful every time I swallow...Josiah seems better today, but my throat is still very painful.  Combined with a stuffy/runny nose and a cough, it is not fun.

Today though Santa is coming to the fire hall, and the Christmas Kids shop is there too.  I have to sign off, get the kids dressed, and get up there before noon, which is when Santa leaves.  As it is 11 now, I better get a move on....

Thursday, November 24, 2011

Happy Thanksgiving to all!

I'll get back to josiah's beginnings very soon, but I just wanted to take this time to wish everyone a Happy Thanksgiving.  I have learned over the years, both through a  lot of reading on the subject and with observations from my own life, that life is better when you focus on the things you are grateful for.  I need to get back to doing specific gratitude lists, and putting them on my other blog ("Gratitude" within the Powerful Consciousness website--which sorely needs updating).

Even when life is not going the way that we planned it, I know that there are many, many things to be grateful for, and when I find a way to express my thankfulness, I find more and more things that I am thankful for in my life.  Intentionally expressing and focusing on those things that make my life easier, bring me joy, touch my heart, and so on, I find more and more things, and my heart finds more and more peace.  Gratitude is truly a portal to a different way of thinking and feeling, even when life is rough.

So today I will post a gratitude list both here and on my gratitude blog.

This glorious Thanksgiving day I am grateful for:
......the beautiful snow that coats the ground
......the fun that the boys and I had yesterday building a snowman in the front yard
......the large yard and wonderful heat efficiency of this little apartment
I am thankful for....Gonzo's great smile
.......The fact that my beautiful little Tex Mex boy FINALLY enjoys playing in the snow
.......The joy that he finds in small pleasures, like throwing snowballs at trees
.......The enjoyment and satisfaction he get at studying the weather (my little meteorologist, who can always tell you what the wind speeds will be for the day and who LOVES the weather channel and

 I am thankful for..........My little Josiah's motivation to do what everyone else does even though some things are extremely difficult for his little body to do.
........The way that Josiah's laugh can penetrate even the roughest of days and make people smile
........The fact that he IS learning much of the material presented to him at school, even if he is making life challenging for his teachers. HE is a teacher of flexibility and thinking outside the box, which is good for people even if they do not appreciate the lessons he is teaching them and the growth he is providing.
........His excitement about the snow and his insistence on playing in the snow even though he is not feeling well.
......His love and his enjoyment of life, though damped by this transition to public school, are still a powerful force and gift for him and those of us lucky enough to be around him.

I am also thankful for 
........My father, whose brilliance, love of learning and reading, and adaptability have been a marvel to me, and whose ideas of personal freedom and living life without needing the approval of others is an inspiration
........My mother, who is always willing to help in whatever way she can, and whose dreams have never died, even though they have gotten side tracked before, and whose talent she is sharing with the world through her music (check out her CD)
........My step-father Jim, who loves my mother and supports her in pursuing her dreams, and his, and is always ready to lend a helping hand.
........My sister Christine and her husband Patrick and their children Thomas and Sam, who though far away are never far from my thoughts.  I am grateful for her perseverance and her ability to rise above the challenges we faced as children.  I am grateful for the successful and fulfilling lives that they lead and for the fact that they are happy.
.......My sister Sharon and her husband Rich, and their kids Jessi, Ty, Montana, and Savanna, who have overcome great obstacles and have found an amazing blessings in Ambit Energy, which through Rich's hard work and Sharon unwavering support have catapulted them into a life they never dreamed possible.
.......My sister Alecia and her children Garion and Alex, whose ability to survive is amazing.  She has a strength and an inner motivation that has overcome many extremely difficult situations, and though right now she can not see it, her ability to survive through it all is a great blessing.  I am grateful for all the good things that are entering her life as she comes through this new hard period.  May she be blessed with joy, peace, and understanding.
......My brother Nate, who has as many great ideas as our father and is an amazingly hard worker.  I am thankful that he can move forward with a variety of projects and that he is always willing to get up at 3am or 4 am to go to work.  I am thankful for his ability and motivation to work hard, and to help our father and his desire to help family and friends.
.......My best friend Kay, whose loyalty and love have never wavered over the nearly 20 years we have known each other.  And for whose creativity and insane work ethic have always amazed me.
........My ex-spouse A and A's family, for even though we are no longer together, we both parent the same children, and A is working on getting more stable.  A's family has been wonderful and supportive, and even when they have not agreed with my decisions, they are still there for me and the boys, and embrace me as a continuing member of their family just as my family still embraces A as a member of ours.
........My extended family is filled with talented and amazing people.  My cousin Paul, whose photography blesses me with its beauty.  My cousin Jennifer who is a survivor and has overcome many challenges in her life, and who is someone I think about nearly every day.  My other cousins whose lives helped shape my childhood, even though we have grown apart in adulthood.
.........My friends old and new, the  many blessed friends I have from childhood who still are close to my heart, my friends from college, many of whom are still significant blessings in my life now, my friends from various jobs and places I have lived...I have been blessed by friends from so many walks of life, so many different perspective and outlooks, so many different beliefs and creeds---I am blessed by the amazing variety of people who have loved me and called me friend.  For this variety and for each of those amazing people I am truly and completely grateful.
......I am thankful for my blog and website readers, through whom I can spread my stories, my theories, my ideas, and the knowledge I have gained, so that maybe others can use it in a way that enhanced their life positively.
......I am thankful for the amazing ways we have to keep in touch with old friends and family--facebook, email, websites, telephone, snail mail, and even face to face.  So many ways to keep in touch with the people that have been and are parts of our lives.
.......I am thankful for my relationship with the Ever Living God, that Powerful Consciousness that links all of us together, that Source of all Energy from which we all emanate and exist.
......I am thankful for a hopeful future filled with blessings.

Monday, November 21, 2011

Updated**The story from June--"Thinking" part five...

So back in June I had been writing the story of how my boys joined our family and a bunch of the events, emotions, and changes that came with adding first Gonzo and then Josiah to our family.  However, I left off with the initial arrival of Josiah, but have yet to go into the largest life changing period I have ever experienced.  Josiah's first few months with us were the most profoundly life changing, devastating, exhilarating, exhausting, joyous, sorrowful, and all around insane and yet vision clearing of all.  He was a bomb that exploded everything--including our relationship to each other as spouses, our values system, our finances, relationship with the rest of the outside world, our careers, our future plans, our sense of what it means to be a family, my understanding of what love is, my understanding of how much I can handle, my understanding of the sibling relationship between my children, my understanding of life dynamics,  my understanding of what it means to be a parent, and my beliefs in and understanding of God and my relationship to God.  To say that sounds like over kill would be incorrect--this bomb of an experience truly is only under-stated by words.  To read the beginning start with the post  from June "Thinking always a dangerous thing to do..."

So back to the story.. So we brought Josiah home from the hospital in late October 2006.  He had a multitude of issues, but the hospital felt he was stable.  The first thing we did was get his apnea monitor, and make sure we knew how to use it, which was not that hard.  It did go off fairly often, but the doctor reassured us that it was most likely due to movement or poor placement of the sensors, as the doctor though he was just fine and that we were over reacting.  One of the biggest challenges was feeding.  Josiah had terrible reflux and was on medication for it, but it was not the puke all over the place type of reflux, it was the up and down and up and down  kind, where little comes out but it just keeps kicking up (acid and formula together) into his esophagus and air way and the going back down only to come back up. So after taking a bottle he had to be upright for an hour after every feeding. He also had a very poor/weak suck, and tired extremely easily.  So he was on a high calorie infant formula for preemies and it took him about 45-1 hour to finish one once, which would tire him out, so he would need a break and then another feed in an hour.  So if you do the math, we were feeding him for approximately one hour and keeping him upright for 45 minute to an hour and feeding at least every hour and a half to 2 hours.  We got very little sleep....More so than even if with a regular newborn. But we made it work.   Luckily he was not a crier (I don't think he had the strength or energy to be a fussy baby). 

We had Josiah about 10 days, when he had his first major episode.  I had taken him to the eye doctor at the big hospital about 45 minutes from home.  He did not wear his apnea monitor when we were out and about as we had been told it was only necessary when he was sleeping in his bassinet or crib (which had been elevated to a 45 degree angle to the reflux).  I was holding him in the waiting room and he was more limp than usual.  His color did not look right, and to me he did not seem to be breathing correctly.  But I figured I was just being paranoid like our doctor had said, and since the eye doctor did not seem concerned as we went though the tests, I was only a little worried.  In the car driving back though, his color really was not good, and he seemed excessively limp and unresponsive, much more than usual.  So I went straight to the pediatricians office before going home.  He was more responsive there and his color had gotten back to normal, and the doctor told me that I was being too nervous.  he said I had had him dressed to warmly and that is why he was more limp, and if I noticed him acting that way again to cool him down.  I had mentioned to him that the night before his apnea monitor went off many times, and again he said it was set wrong and I should call the DME company to come and change the settings.

So I took Josiah home.  But he still was not acting like himself (yes I know he was a tiny baby who we had only had for about 10 days, but that is more than enough time to learn to read a helpless infant whom you are responsible for and love).  So I tried to rust the doctor--after all he is a doctor and I was not, so he MUST be right, right?!?  The apnea monitor kept going off, and Josiah looked wrong.  He was limp and his color was getting grayer by the minute.  I undressed him as the doctor had advised that I was causing it making him too hot.  But that made it worse, as he suddenly stopped breathing all together and his lips turned blue.  I did a few rescue breaths and called 911 and went back to rescue breaths.  The ambulance got there in a matter of minutes, by which time I had gotten him breathing but he was still in obvious distress.  So he was quickly wrapped in a blanket and he and I jumped int eh ambulance.  At the hospital his temperature was reading 93 degrees (so much for the doctor saying I was keeping him too warm) and he had multiple episodes of apnea (not breathing) and bradycardia (where the heart slows down too much).  The little hospital was not equipped to handle him so they call for an emergency transport to the PICU at the hospital 45 minutes away (where I had been earlier that day). 

While we were waiting for that transport, I got ahold of A and A had picked up Gonzo from preschool.  I filled them in on what was going on, and our friend Sean came to watch Gonz while A and I followed the ambulance to the PICU.  He had a few more episodes of stopping breathing during the ambulance ride, and was admitted right to the PICU.  He was in a heated oxygen tent in the PICU and they were running tests.  The doctor that was there was wonderful and very familiar with the unpredictability of preemies.    His prognosis was unclear, so we called family to let them know what was going on, and I called my dear friend Jacquie (who was also my former pastor) and she came up int he middle of the night (around 2am) and baptised him in the hospital.  By the time she got there A's sister and mother had arrived and my mother and stepfather had arrived.  So he was baptised with extended family, some of whom had not yet met him.  Within a couple of days (hellatious days they were), he had stabilized and was able to move to the step down unit.  We had been sleeping at the hospital (they had a sleeping lounge for PICU family members as well as a shower, toiletries, etc....) and once he stepped down to the less intensive PICU unit, we started taking turns with who stayed and who went home, as we needed to keep Gonzo's life as stress free and normal as possible.  So we switched off daily.  Thank God I was on leave from work.  For over 10 days we were int he hospital before the determined that he was ready to be released. He had an eval by the neurosurgeon who felt his hydrocephalus was stable and not causing the problem, an eval by his neurodevelopmental (as we were going to see her that week anyway so she just came to his hospital room when she was doing rounds), and a few other doctors who felt he had no ongoing issues. He came home with essentially the same meds and such as before with minor changes.  he was to wear his apnea monitor at all times now, AND we switched pediatricians, as the former one was obviously an idiot who had not listened to parents--the people who know a child best and are most vested in his survival. 

A little over a week later we were back in the ambulance, he had stopped breathing again.  This time they ran other tests, and for a week we were there.  We spent our first Thanksgiving as a family in the hospital and at Ronald McDonald house....

I will finish this story later, as I have to get to my father's house and feed my chickens before the kids I babysit come back...

Wednesday, November 16, 2011

life is BUSY.....

So, life is busy....So I have not taken the time to blog, though  it is cathartic.  Lately I have been going non-stop. 

The renovations of what will become our new house/family child care center have been painfully slow, mainly becasue we have not been abel to start them yet.  The permit process, which I had talked with the building code guy prior to signign the lease papers did not tell me what I neede to know (which is a common problem with him from what I hear, a man who likes to toy with his authority in ways that just make life harder for those tryign to do a project.  damn nepotism in a small town makes it difficult to have him removed, I have heard that there have been multiple attempts with signed petitions, but alas, he is who I have to deal with).  So, anyway, I am not well versed in NYS residential code, so I have no choice but to deal with a rude and intentionally difficult man.  And slowly but surely I am getting closer and closer to getting the darn building permit. then the real fun begins....As it stands, I believe that I will not be finishing until late January at this rate, which is okay, it just means paying for two places for a month longer than I had planned.

I did get the main furnace working finally, and then  had the town turn the water on, only to get sprayed with water as the pressure came up to full and revealed a couple of cracked pipes, so the water is off at the main valve coming into the house until those can be done.  I am not familiar with doing plumbing and was trying to have my father talk me through it, but he said it is best just to let him do it when he has a chance to get in there.  As the work can't start in earnest until the building permit is in (repairs can be done without it), my dad feels it is fine to wait on fixing the water.  I'd like to have the water on though so we have the bathroom if we need it while we are working.  So it is just slow going at the moment.

The process far the day care is also going slow, as the application required a floor plan and an outdoor area diagram, and until I know what those are definitely going to be, i can't submit the application.  I will be taking my First Aid and CPR certification course in a couple of weeks, and then the 16 hours of training required for the licensing in Mid-December.  So that is moving forward slowly.

As I have my computer back, I am trying to get back into my freelance writing work.  I was able do a couple of articles today which if approved will be over $40, which will be nice.  If I could make that each day in addition to the babysitting, I might feel more financially stable.  It is just a matter of hit or miss with assignments, so I never know when I will be able to get them.  And the higher paying ones are scrutinized more thoroughly, so there is a great chance of having to redo them or having them be rejected.  But it is something at least, which is good.

School has been improving for Josiah.  We modified the way his teacher tracks his behavior, and it has made a world of difference.  Before she used the green light, yellow light red light system, which may work fine for children who are typical and on track developmentally.  But for Josiah (and in my opinion for any child) is was not appropriate as there was no way to recover from poor behavior.  So if Josiah got upset and had a tantrum at 8:30am, he was on a red light for the rest of the day, a message telling him that he was bad and there was no way to fix it.  Which just kept him upset for the whole day, made him feel ashamed and self conscious (as it is posted on the wall for all the kids to comment on).  He now has a Frog Chart with 12 faces on it, and as he goes throughout the day he gets a happy face for appropriate behavior and meeting expectations and a sad face for inappropriate acting out/rule breaking.  He has made a complete 180, as he is now able to bring himself back around, and know that one bad moment does not mean he has to feel punished and ashamed all day.  He has had almost all great days since the second day after this change took place.  Yes he still has rough moments once in a while, but his aide says that he is working hard at self soothing, breathing, and getting himself back on track.  He is even doing his actual work there.  I think a big part of the difficulty is that they have never worked with any child with real special needs.  So it has taken a lot of adjustment on every one's part to understand how to work with a child with multiple challenges--physical and the developmental delays in social, emotional, and behavioral aspects that come with that. So overall, there has been dramatic improvement in his school experience, and he seems much more content.  Last week we also started him on alternative PE as they are getting into many things that are impossible for him  (like skipping, hopping, jumping rope, tumbling)  so he is having 1-on-1 PE with the PE teacher and he is loving it.  She is able to tailor his PE to his needs and to working on skills like catching and throwing, kicking (which is extremely difficult for him), right now he is maneuvering his wheelchair to kick down bowling pins, which is great for both improved use and control of his legs, AND for him becoming more independent in his wheelchair use.

Well, it is now 11:40pm and as my alarm goes off at 6:15am (and I seem to never get to bed before midnight) I had best end this post so I can get a few things done before I go to bed.  I have been working hard at keeping the house less cluttered, as it makes life more peaceful, so i have something I want to do before I turn in for the night so we can wake up to a neater and tidier house (not really neat and tidy but better than the perpetual chaos it seemed before--it helps that A's stuff is finally out of here and in A's apartment).

Anyway, signing off for now....

Sunday, November 6, 2011

Where to begin...

Well, for starters, my ex-spouse and now friend A has finally moved into an apartment and out of my father's house.  A is renting a nice 2 bedroom in town and my brother and his friend helped move (well moved not just helped) all of A's furniture out of my father's house and out of the old trailer (where it has been stored with a bunch of my stuff too) and got it into the new apartment.   So while unpacking and setting things up needs to happen, A is officially self-supporting.  A also, thankfully, was given more hours at work and so should be able to afford to keep this apartment.  It is beautiful, a big kitchen dining room combo, a medium sized living room, a nice sized bedroom for A, and a little bedroom for the boys for when they spend the night.  I have taken the boys over every evening since Tuesday to help A feel settled in (the couch from the landlord was already there and I took the boys TV out of their bedroom and took it over as A's place comes with everything included--heat, electric, hot water, cable, and wifi.  I am hoping that the boys will enjoy being able to has 1-on-1 time with their other parent.  Hopefully we can nail down a consistent schedule so the boys always know that they can count on having specific time with their Bubba. 

I have also signed a rental deal with the owners of the old laundromat, and will be converting it to a single family residence and running a family daycare from there.  It is a big building with a good, level yard.  I am nervous about it, as it is quite an investment.  If all goes well, after 3 years they will hold the mortgage and I will buy the property.  I will fill in details about this as time goes on.  Suffice to say that between doing all the trainings and paperwork for the child care licensing, and now getting all the permits and doing the renovations for the house/day care, I am going to be one busy lady.  it is good though.  I am ready for a project that challenges in me different way than I am challenged by raising children with special needs.

I'll update some on how Josiah's struggles with Kindergarten are going. I will also be updating on how I am expanding my use of the Nurtured Heart Approach in trying to help both of my boys have more security and self control so that they can function better and enjoy life more.  If you look into it, I have read the book multiple times as I have been trying to prepare myself to use this approach to parenting.  I did not want to do it halfway.  I am at step five, the credit system.  We started using it today, and we had a day wonderfully free of major arguments, fights between the boys, bad language, and tantrums.  Josiah only had one episode of "freaking out" as he calls it, and it was short and resolved quickly. Gonzo only had one round of insane, incessant whining and arguing and it was not at me or his brother, at the video game he had chosen to spend his credits to play. The extreme positive affirmation aspect is something we have been building up to, and using a clear, unemotional consequence for broken rules seems like it is going to work.  I have a bit of tweaking to do to the system, as it is very flexible and can be used by anyone in any situation, I just have to find the right balance that works for us.  But so far, it appears by the calm and happy evening I had with the boys, that once we adjust to this system, life may be a whole lot more peaceful, and our relationships with each other and hopefully with extended family, school, and community will drastically improve in quality.  It is a challenge to essentially toss out traditional (and not so traditional) parenting models and advice, but those have not had much effect on the family dynamic with intense and difficult children who have gone through intense and difficult times over the past few years.  It was time to try a drastically different approach (which has elements of other models and ideas that we have worked with in the past, but applied more intensely), and if the first day was any indication, if I do this right and consistently my children will feel more empowered, more in control of themselves, and have more respect for others, while building them up rather than tearing them down, which most parenting models essentially do (though I had not really realized that before I started exploring this method).  Keep your fingers crossed and say a prayer for us that by fully embracing the Nurtured Heart Approach to parenting difficult children, that like, for all of us will improve.  It is amazing how hard it is to train yourself to give positive affirmation rather than negative feedback when it comes to behavior.  Like most of our culture, I had been programed to try to give attention and specific examples to behavior that was not correct more intensely than giving praise and affirmation and specific recongition to behavior that was correct.

Thursday, November 3, 2011

My Computer is BACK!!!!

So, I finally have my computer back as of today!!  It is a wonderful feeling.  Got my car back on Sunday with most things fixed after 3 weeks with no car,a nd got  my car back today more than 3 months after it stopped working (and over a month after I finally sent it off for repairs).

So hopefully starting tomorrow I will actually sstart blogging on a nearly daily basis again.  So much has been going on lately (seems to be the norm for the past few years), so I have a lot to update on,  but it has been one jam-packed day and I am ready to relax and hit the hay.  So an update will have to wait until tomorrow.  It is good to be back online with a computer that actually works!!

Wednesday, October 26, 2011

A quick hello

Sorry for the long delays and lack of posts lately, I am still waiting for my good computer to return, and it should be here any day now.  Things have been busy.  I have negotiated an interesting deal about the house, which will hopefully lead to both a good place to live and a great place to do child care.  I have started the paperwork to become a registered day care provider, so that ball is rolling.  Hopefully by mid-January that process should be done and I should be approved.  I have also decided with the bigger space that I will pursue another avenue I have been wanting to do for a long tie but the timing was just not right.  I have put in an inquiry on become a foster parent.  So we will see where that leads.  I know that from inquiry to placement is often a year or two, so starting the process now puts us well into having everything else solid by the time any placements would occur.

My car is still in the shop.  The total estimate was over two thousands dollars, so I talked to my step father and he can do a couple of the things that are needed --one of which the garage estimated would be nearly $1000 parts and labor, parts being more than half.  But looking online I can find the parts for less than a 1/4 of what he quoted, so my step father is going to do that one.  So the garage is doing the struts, wheel bearing and new tires.  It should be ready tomorrow afternoon!!

My chickens are doing well, getting feathers and liking being in the big coop.  I am worried that they will get too cold over the next couple of days.  I still have the box with a light in it that they sleep in to keep warm.  But unlike the past few days with temps in the 40's and 50's, the lows are heading into the low twenties (my two button does not work on this computer so I have to write out all numbers that contain a two).  The forecast is an 80% chance of snow tomorrow, and not just flurries but accumulations of up to 6 inches!!!  What a way to have first snowfall of the year!  sheesh!!!

Tuesday, October 11, 2011

A quick update ....

HI All,

As it has been so long since I made a full post, and I am still on an ailing computer, I wanted to try again to make a quick update of a variety of my life areas.

The kids:

School for Gonzalo is going very well this year.  His behavior has been much better than in previous years and he is learning well.  School for Josiah is still up and down, he has his good days and he has his bad days, some REALLY good and some REALLY bad!).  I believe his teacher is trying and I also believe that she truly is a teacher that ca not think outside the box, so this is a struggle for her as much as it is for him.  Luckily his assistant (surprisingly) CAN think outside the box, as does the spec ed teacher, principle, and CSE chair.  So while still a struggle, he is moving in a positive direction.  By November I think we will be on an even keel.

The other big thinks going on for Josiah have just been with his medical/physical special needs.  He did not get his dental surgery last month because he had a nasty cold and could not go under anesthesia.  And since they book months in advance who knows when he will get in again.  His hydrocephalus has been on our minds, as his CT scan last year raised some eyebrows with his neurosurgeon, but as he is not presenting any symptoms, it has just been a process of getting a second opinion from a doctor who is more familiar with pediatric hydrocephalus, and that took a while.  We saw him in June (or was it May or even April!)  and he wanted to do an MRI to see how the fluid was moving through the brain to see if it is coming in faster than it is going out, which would cause it to build up slowly over time.  As it was 60-90 minute MRI he had to be sedated.  Luckily he has not had a cold lately and we had the sedated MRI scan yesterday.  The doctor should get the results later this week and we will hopefully know something within the next couple of weeks.  Hopefully fluid is coming and going at the same rate and he will not need another brain surgery or a shunt.  The ventricolostomy will hopefully continue to work as it had done early on.

Other issues with Josiah lately--his hips are rotating in too much and his neurodevelopmental doc thinks that he should have hip surgery.  We are scheduling an appointment for him to see his orthopedic surgeon to see if he agrees or if her thinks it is not necessary.  There is the visit with the eye doctor which we missed because I wrote it down wrong on the calendar and did not check phone messages for a couple of days (which I do let go way too often, I really need to start checking phone messages daily).  So I missed the reminder call which said the 3rd and my calendar said the 6th.  So we have to reschedule that one.  Overall though even with some potential problems beginning to show, Josiah has been pretty healthy this school year, and seems to be weathering the change of schools well health wise.

The income/housing issues:

I am working on the LONG process of getting registered as a NYS childcare provider to do family home day care (up to six kids).  As I am doing this I continue to babysit the two year old and her brother after school.  I also have another family that has asked me to babysit occasionally for their 3 year old and 9 month old.  I told them that I had to work it so that I only had a maximum of two kids at any one time until I am licensed (state law--as an unregistered provider I can only watch two kids at a time on a regular basis in addition to my own).  So it is a bit of schedule juggling but should be a good start. 

However I have noticed that my neighbors, who are retired and older, are not so happy with all the kids running around, as we share the porch and yard in our duplex.  So I have been looking into other housing for a while now.  It is slim pickings up here.  But I have been talking to a woman whose son is in Josiah's class and who I grew up with (she was a couple years ahead of me in school so we did not know each other well).  She has been trying to sell a large building that used to be her family's laundromat.  It has been on the market for quite a while and has not sold.  She is willing to do a rent to own and allow me to convert it to a residential home with the intent to do daycare.  So that is in the works.  I need to make sure that my investment and hard work of converting it from commercial into residential (which will not be a problem, I have already talked to the zoning/building code man from the town-I'll just need building permits and such to renovate it), the contract needs to protect my investment and be written in a way that does not screw either of us in this endeavour.  Thank God (literally) that A's niece is a lawyer and her husband a contract lawyer.  Even though A and I are separated, the family still is open to helping.  So, if the contract goes through well, I will begin renovating the inside and maybe even have it done by Christmas (as long as I have enough tie to work on it on a regular basis).

Health wise:

For me, weight loss is still a struggle.  I do well for a few days with being careful about what I eat, watching my blood sugar (ice cream is VERY bad for blood sugar, so is boxes cereal).  But then life gets stressful or busy or something else is going on and I turn my attention to that and fall back to my bad eating habits for a few days.  Then I push forward again on developing new habits, and well it is  a cycle.  I think overall, that cycle is moving towards better and better eating patterns when I look at the overall picture, but I really need a solid month of really focusing on changing my eating habits themselves, so that I fall back on good habit and not on the ones that are so ingrained that there is a rut there.  Two steps forward, one step back is still forward motion as a whole.

Other stuff:

My car is ailing and need work (tires, brakes, steering, etc...) AND i have the money right now to get it all done--so YIPPEE!!  I take the car to the shop tomorrow and hopefully he will be able to get the parts in and have the time to fix her within the next week.  I am guessing it will cost nearly a grand, but as I bought the car for $400 last February and she was worth so much more, it is worth putting that much money into her.

My chick are growing big.  They were hatched on September twenty seventh (my two button does not work) and have been growing well since they arrived by ail at a day or two old.  They are nearly two weeks old and have gotten their wing feathers.  they are still in a big b ox here at the apartment, but will soon be moving over to my father's property.  I have to build a new chicken coop as his is not is great repair.  So i think that will be a project fro the4 coming weekend as they are getting to be a bit too big for the box.  In a couple of months the extra roosters will become dinner (not something I look forward to, it is hard for me to eat animals I love, but I can not keep them, they will fight each other to death as they get older and territorial, only one or two will be kept with the hens.  Then in 4-6 months I should have a bunch of fresh eggs daily.  It will be wonderful.  I have wanted to have chickens for so long.  As a kid, my chore was caring for our chickens, and they were my friends.  I loved having chickens and caring for them.  I have always wanted to have a flock of chickens, and now I have them.  Maybe when I move into the new house I can bring the chicken coop over there, which would be great.

Well, I should end now.  I will write more soon, and when I get my computer back should be able to do short posts daily again rather than these intermittent postings.

Hope you are all well and enjoying autumn--my favorite and most productive time of the year.