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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....