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 http://www.allrecipes.com/ 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!!

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.

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 www.time4learning.com.  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.

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....

Tired.....Searching......

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????

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....

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...

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.

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.

Summer Break...Finally

Well,  one of the interesting thing about raising children with special needs, is that sometimes they have extra things, like six weeks of summer school to keep them on track academically, behaviorally, and with their therapies.  Which means a much shorter summer break for them.  Friday was their last day of school, and on Sunday we headed out to visit A's family.  A's sister recently bought a cottage on the shores of Lake Ontario.  We did see it soon after they bought it, but they were in the process of giving it a lot of the TLC it needed, so it was in disarray and under construction projects to repair and rehab it.  Now it is mostly done (the bathroom is in rehab still, but functional) and we spend Sunday night out there.  I have never spent any time at the Great Lakes, but wow is it similar to the ocean in sound.  The cottage is on a rocky shore, so the waves lapping the rocks reminded me (in sound) to one of my all time favorite places in the world--Bass Rocks in Gloucester, MA. 

Though the waves are smaller, they were still impressive for a lake, a lake you can not see the other side of.  It was beautiful.  However it was a rainy weekend, and the storms from Sunday had the lake very choppy, so it was not really safe to take a swim at such a rocky shore, so the kids did not get to go with with their life jackets.  But we did go down the steps and put our feet in the water sitting on the rocks, we got splashed quite a bit too as the waves sent up a lot of spray.  The kids (and we) enjoyed the deck area overlooking the lake, and some of the waves were big enough to splash us even up there.  hat night, with the windows open, we could clearly listen to the waves, and it was wonderful.  As many similarities as there are to the ocean front, there are as many differences.  It smelled like a lake, and felt like a lake.  As absolutely beautiful as it is, it made me long for my great love--the North Atlantic. 

I found myself longing for the smell of the sea, the call of the gulls, and the "feel" of the ocean.  I miss the ocean, and have for the past 11 1/2 years, as I have only visited.  Even when I lived in Florida, it was the Gulf of Mexico, and though I loved snorkeling and swimming in that warm salty water, I loved even more the idea that the water I was in would eventually reach the North Atlantic, so I felt connected, even in that warm Gulf to the cold shores so many miles away.  I had hoped to take the kids camping this summer out on the North Shore, but alas it appears funds may be inadequate to do that.  Winter is approaching, and my primary source of income has ended.  Summer is winding down (and we are finally in a 3 week of vacation time), and so the window of opportunity is closing.  We have soem other daystuff planned, and may camp out on my Dad's property for a couple of days.  Had my IRS refund come in time, that little inexpensive vacation to Massachusettes would have been one of the things on the list that the refund would go to.  But with this darn audit review, only God know when they will release my refund.

The kids did have fun, and we got to see the baby's (both of A's niece's have little ones now).  We also got to celebrate some of the August birthdays as in addition to Josiah, A's niece S and her daughter M (who is celebrating her 1st birthday!!) are also in August.  So we did a combined birthday cook out at the cottage and had salt potatoes, corn on the cob, hot dogs and hamburgers, and of course cake.  Then Josiah opened a bunch of present from A's family, and we gave our gifts to the others. We finally got to actually meet A's other niece's little son, who is a couple of months old.  He is a beautiful baby.  A said it feels weird to have a new generation starting in the family. I imagine it does, but since A is nearer to my parents age than to mine, it makes sense that they would have the next generation coming up.  Overall it was a very nice visit.  I originally asked A to go without me, but a is nervous about the new job which is starting today, and so did not think that with that stress, could handle the boys alone all weekend in that trip.  So I went too.  It was good to see A's family, though they seem to be under the impression that we are still together, or at least just barely separated.  Perhaps most people think that, as I suppose we appear to be that way, it is hard to let go, and it is hard to find the balance that allow a friendship without being an enabler.  I think we are getting closer, and that it is finally understood between the two of us that friendship is our aim, not reconciliation.

A started the new job today.  I am an optimistic person, but with so many job losses over the past couple of years, it is hard to think that maybe, just maybe, this job will be here to stay and A can get an apartment, move out of my father's house, and actually begin to be self-supporting, have time alone with the kids without me arranging it, and be able to rebuild a life.  We can all hope and pray.  Especially since I am seriously considering moving in with my father as finding a source of income (i.e. a job that works with my children's special needs or enough income generating from writing, blogging, and online clicks/sales) is proving to take a great deal longer than I expected or can really plan for.  The economy is making this harder than expected.  So the possibility of moving in with my father (who has a 5 bedroom house and heats with wood, and only he and my brother live there usually, so there are extra rooms) is a distinct possibility--as long as A moves out (the old "I'll only be there for a month, two tops" thing A said back in January is a little crazy given that it is nearly 8 months...).  But that is just where we are...things to think about...

life in Transition for sure

Okay, so I have not written much in the past week.  It has been an interesting one.  I had a dr's appointment on Friday to go over blood work that I had done over a week before that.  And the results nearly knocked me on the floor.

My A1c results (the test that gives an average of your blood sugar levels over the past three months by measuring the percentage of glycalation of your hemoglobin (how much glucose is attached to the hemoglobin)) were extremely high.  11.2% to be exact.  Normal is around 5-6%, typical for someone with diabetes is around 7%, high is 8-9%.  That correlates to a blood sugar reading of around 310 on average over the last 3 months, and my fasting sugar that day was 279 (normal is fasting is below 100, normal random throughout the day is below 140, diabetics should aim for below 180).  overly high blood sugar is over 240, and levels over 300 are considered very dangerous.  So I have been walking around with my blood sugar levels in the extremely high and dangerous range for a while, and I did not even know it.  The last time I had an A1c and other blood work, my A1c was 7.1% and everything else was fine other than slightly elevated triglycerides.  that was in February 2010.

Since that time my marriage had fallen apart, I walked away from a great opportunity in Rhode Island due to the afore mentioned collapse of the family, I have moved into an apartment and taken a job that I drive over 100 every day 5 days a week (for over a year, though only 3 weeks left until it is over with), I have gone through the custody process in the courts and have physical custody of my kids (with shared legal custody), I have allowed A (even though we are separated) back into our lives on a daily basis, and have been rebuilding a friendship (though not without a lot of difficulty and baggage), and I have been trying to make plans for the future with a lot of uncertainty.  So some parts of my life are less stressful (my marriage was extremely stressful and the ending of that brought different stresses, but overall less stress) and some parts are more stressful (the fact that my primary source of income ends in a couple of weeks and the fact that I do not know where my relationship with A is going at this point in time--in the past week it has been a lot of ups and downs and trying to figure out if we can or even should try to put the family together again).  I have been trying to get enough money incoming through freelance writing and through ads for things that I recommend on both my blog and my website, but I am not a sales person and don't want to be, so I post links to things I like and hope that others will click those links and bring in a few pennies for me.  Literally, I have made $0.02 total through the ads that I share for things that I think my readers would like.  So, as I have no desire to try to push people to look at things that they are not inclined to look at on their own, I don't think I will supplement my income much by my website or blog.  Which is fine, I will still post links to cool things and books that I like and think others are interested in, but I know that I can not depend on it for any supplementing of my income. I have applied for a number of jobs, but they have not panned out so far.  And taking a low paying job is not a viable option as I would have to pay out more in childcare costs than I could bring in, even if I broke even it would not change the situation.  Having two children with moderate to severe special needs, means that I can not hire the high school kid down the street or even most adults to watch them.  As it is, even family struggles to watch both of them together for short periods of time.  Heck, even A struggles to have both of them alone for more than a couple of hours at a time.  Because their needs are so different and both are intensive (I forget sometimes because I am just used to them), and because the sibling rivalry between them adds whole other layer of intensity, the best solutions would be to hire two different sitters, one trained to meet each other this needs, and possibly have one cared for at home and the other cared for at the sitters home.  As J is an insurance liability (which I learned the last time I tried to work full time and put him in a day care center) finding care for him is very hard, and G has massive behavioural issues with peers which make it difficult for him to be in a group setting (hence the fact that he is in an 8:1:2 self-contained classroom and still needs a 1:1 aide just to go to school (8 kids, one teacher, two aides 8:1:2) and free time (unstructured without clear instructions for what he should do--like recess and lunch) are his hardest times of all.  It makes me miss Becky, our favorite babysitter from when we lived in our house.  She was a Masters student a the college, studying special ed--focusing a lot on autism and she herself had cerebral palsy--so she understood and knew how to handle both boys very well.  But alas she graduated and is a great teacher in an autism classroom now about 2 1/2 hours away (from here and from our old house), and we left our old house to renters (who paid one month rent and then lived rent free for over 6 months before I was able to evict them, and they trashed the house in the process, knowing that if they did not pays rent we could not pay the mortgage, and by trashing it, made it impossible to rent to someone else was we did not have the funds to repair the extent of damage they did--so it is in foreclosure proceedings sadly). 

Anyway, back to my lab results.  Stress is one of the primary causes leading to high blood sugar.  Being overweight puts a great deal of stress on the body, and them adding emotional and financial stress, pushed the body beyond what it can handle.  So as the past few years have been fraught with high, high levels of stress, and the past year in particular has been stressful.  Coupled with being overweight since my teens and not watching what I eat or exercising enough when things get stressful (being a stress eater--the more stressed I am the more I eat...) well, it has not boded well for my health.  So I as mentioned before, I watched that movie "Fat Sick and Nearly Dead" recently and felt inspired to get more fresh vegetable food into my diet, and have started drinking green smoothies.  As a diabetic I can not do the juicing.  Maybe once my blood sugar levels are normal, then I plan on doing a juice fast as portrayed, but until them, I can still do the smoothies and add lots of nutritious vegetables to my body in a drinkable way.  But when I saw it originally, I could identify with the FAT part of the title, but the sick and nearly dead parts of the title I just wasn't feeling.  However when I got my blood test results:
A1c 11.2%
Cholesterol 218 (a little high, but as I have NEVER had cholesterol issues it is shocking to me)
LDL-144 (too high)
HDL-40 (too low)
Triglycerides 184 (too high)
and 2 of my liver enzymes were just slightly past the top of the high range.
My blood pressure, heart rate, and all my kidney and other tests were fine.

When I saw the results, I suddenly identified with the WHOLE title of that Movie.  Thought, Oh my gosh, now I know what it feels like to feel "Fat, Sick, and Nearly Dead" (well okay that one is an exaggeration, but I could actually see the path leading to that, which is as far as I want to go).

So, I was more than willing to go on pharmaceuticals in addition to making some immediate changes in my lifestyle and eating.  So on Saturday I started on Metformin 500mg 2x daily, and enapril once a day (to protect the kidneys as with that much sugar running through them can cause a lot of damage).  I began tracking my foods in Spark People again.  And am taking my blood sugar readings twice a day.  The big thing is getting it below 300 and keeping it below 300 (that is step one, getting it below 240 is step two, and then getting it below 200 is step three, after that pushing it down to normal ranges is the ultimate goal, but transitions--quick transitions as this is what I consider an emergency situation). I was told not to check my fasting sugar as we already know it is really high.  What I need to do it to check my sugar 1-2 hours after a meal and keep track of what pushes my sugar up and what brings it down, as each person is different, and your body reacts differently at different time of day, so over the next three months, I need to closely record my food intake, glucose levels, and activities to determine what food I can have when and what ones I need to avoid and when. I have my basic dietary guidelines from the diabetes educator, and my doctor told me to try eating a healthy cereal with milk in the morning rather than my typical sausage eggs and cheese sandwich.  I forgot to check my levels Saturday. 

Sunday I had a bowl of Special K cereal with milk.  Two hours later I checked my sugar and it was 380!!!!.  For lunch I had a turkey sandwich on WW bread.  For a snack I had a green smoothie. For dinner we had a hamburger cooked on the grill (with a WW bun), some vegetarian baked beans, a couple of chips (I know I should not have), and a hot dog (no bun).  I went for a nearly two hour hike around my Dad's property, with my Dad, A, Gonz, and Jos (mainly carried Jos either on my shoulders or just a front carry (he can't do a side carry on the hip as his hips do not open far enough).  We were looking for a place for me to build a lean-to, which the building guy at the town clerks office said I did not need a permit for and told me the zoning distances I needed to stay within.  I want a nice camping place for me and the kids that we can tailor to Josiah's physical needs and to Gonzo's need for clear boundaries.  As much as we loved going down to Garnet Lake and tent camping, there were some things (like massive hills and very uneven rocky paths to get to the camp site, not to mention a road between the campsite and the lake) that made it difficult for us.  So we got quite a bit of exercise that day.

I did not get around to checking my blood sugar again until late evening and it was still at 345.  So I had two hard boiled eggs as a snack (high protein no carbs) and started to look for ways to quickly lower blood sugar, and did some of the water drinking and breathing exercises (breathing helps relax your body which reduces stress and thus allows blood sugar to function more normally).  Before I went to bed 45 minutes later, my sugar was down to 295--yeah breathing and water.  So Monday, having learned that too many carbs for breakfast was a BAD thing for my body, I ate sausage, egg , and cheese but only used the thin half of an english muffin, and had coffee with just cream, no sugar or sweetener, and just water.  Then I went for my 45 minute walk around the pond.  When I got to the library, I checked my blood sugar (1.5 hours after finishing breakfast) and it was 193!!!  A HUGE drop.  Protein works for me in the morning.  I had sliced turkey for lunch (no bread) and a grapefruit. For snack after school I had bought a coconut as Josiah has been wanting a coconut for some reason, so we had a coconut for snack.  IT was from a discount food place, and old, and not as tasty as I remember fresh coconut being.  So not a good intro for him to fresh coconut that we had to break the shell to get.  But that was my snack.  Dinner was a stir fry with broccoli, cabbage, yellow squash, carrots, celery, onion, garlic, and black beans with spices and vinegar.  Then I did a boo-boo, I ate a piece of Digorno's pizza that A had picked up for the kids.  I really should not have as it pushed my carbs over what they were supposed to be for the day.  When I took my sugar after dinner though it was 262, so not great but under the 300 mark that I am aiming for this week.

Last night was an interesting night with A, which I will not go into on here, but it definitely added a lot for me to think about, that of course adds stress.  A part of me would love for our family to be together again, and I really would love to try and have a biological baby and go through pregnancy and care for a baby right from conception.  I love my kids, and always planned on having three kids total.  So it was always part of the plan, it was just that adoption ended up being the first path we took, as there are so many kids waiting for families.  But I still want to have one child from my own body.  Which with the fact that I am almost 37, am still very overweight (thus greatly increasing chance of miscarriage), and now with my sugar issues--makes that possibility even lower.  Add in the broken family and the idea that A and I might NOT be able to reform a family, well, it is a hard thing to let go of.  I know that our relationship has not been healthy, and that A is not that much different now than 3 years ago, which is when A had picked up the bottle again, and has not put it down.  I actually had a couple of drinks with A for the first time over the past week--Mike' Hard Lemonade.  That was nice, but weird.  As I don't drink often, but every once in a while will have a glass of while or a margarita, or a Mike's Lemonade (seems popular in my family these days), I have never had a drink with A.  A was in recovery when we met, and one of the things we did was no alcohol in the house.  I had no problem with that as a six pack of my favorite beer (I am very picky, as gross beer is just, well, gross) would take me a year to drink.  I know that from a time before A when my best friend had brought me a six pack of my favorite beer (which I had trouble finding when I moved from that area) and it was nearly a year later when I had the last one with my brother in law.  So, yeah, having a drink with A was weird, as for so long A tried to hide (unsuccessfully) the relapse in 2008, and then after my mother in law died, just crawled back into the bottle in 2009, and then after detox, and when I thought we were moving forward went back into the lying and hiding mode of drinking in 2010, which was when I decided I couldn't live that way any longer (lots more went on of course, but that is a bit of a nutshell pertinent to todays post, see a much earlier post for more explanation (from mid-March)). Lately A has been more moderate in drinking, a few beers a day or so.  And behaving mostly.  So when offered a Mike's I said Okay.  but that actually, after typing it all out, really is a side bar that does not have much to do with what I was talking about, so I suppose I did not need to include it.  I'll leave it anyway.

Point is, no matter how stressful life is, I need to make changes NOW to ensure a better future.  More than ever before, I know I need to make some major changes, one of which has got to be in my eating/exercise habits.  The other biggie has got to be in my levels of stress.  Perhaps, after really realizing last night that while I love A, A is the other parent of my children, I am not IN LOVE with A, at all.  I have said it for a while, but a part of me always just thought that I was still in love, that that spark was still there somewhere, that it was something that maybe could be rekindled and we could overcome all of the crap that has happened over the past few years.  But the spark has gone out, and that actually makes me quite sad.  And it's not like A's behavior and daily living has altered in a away that makes me want to try to light a new spark.  There has been little transformation on that end, and I want a partner not another child, but with A I feel like I have another child rather than an equal adult partner in my life.  And that has not changed.  Most of the things that I did not like about A are still there, and only a few of the things that I fell in love with in the first place have survived the events of the past few years.  Sure, maybe someday A will turn around, maybe someday the person I met will return, or a transformed person will emerge.  But maybe not.  It took my mother over 10 years to really recover from the death of her mother (and her daughter, grandmother and father--all in a 5 year period).  And as my father says, when you lose a parent or a child, or anyone you love, you don't get over it.  It leaves a hole in your heart.  You just have to learn how to live with that hole.  It is what I have called finding a new normal.  Anytime there is a major life event (birth/adoption, death, loss of job, new job, moving, etc...) it takes time to find a new normal.  I almost had found a new normal last fall before A returned.  Now I feel like we are floundering around again.  Part of it is the uncertainty of the future, most poignantly the uncertainty of income.  They boys disability subsidies will still come each month to help offset the inherent issues in raising children with special needs (like the inability to work full time), but it is not really enough to live on unless I move back into the trailer, which needs SO much work (even though we already put a lot of work into it), or to move in with my Dad, which has its own set of issues, not the least of which is the fact that A lives there and I am not really ready to live with A again.

So anyway, my life of transformation seems to have a lot of areas that need to be transformed....

Part 3...Thinking....

Sorry for the delay.  The last couple of days have been busy.  Lets see, where was I in the story...

Oh, we had heard back from some of the case workers about children we had inquired about.  One was a little boy in Texas who was just over 2 years old with a number of developmental issues.  We almost made it to the final three pool.  Many agencies and foster care systems select the three most likely families for a final in depth evaluation in order to choose the best family.  So making it to the final three is a really great step.  Around the same time, we were in the final running for a child through Spence-Chapin, an infant with FAS.  She was a beautiful little girl, and we were excited about the possibility of adopting her.  But we were not the family selected for her, which was about a month later.  Soon after that we were called about an infant boy through Adoption Star who had holoproloencephaly, but he would need to be picked up the week, and we did not have the funds available for the placement fee at that time, as the fees for his adoption were higher than we were prepared for (around $6000, about twice what we were prepared for).  With infant adoption, even special needs, even with reduced fees some adoptions are more costly for a variety of reasons. 

Soon after that the case worker from the Texas foster care system contacted us again.  She said that the chosen family had turned down the little boy after getting his full disclosure information packet, and  they were again selecting potential families and wanted to know if we were still interested in being considered for him.  We said yes of course, however a couple weeks later we learned we were not chosen again.  Around that time, we had heard about a baby boy in Louisiana whose issues I can not recall now.  We sent in our home study and had some conversations with the case worker, and she with our social worker.  We did end up in the final running for him, but were not the family chosen.  Hurricane Katrina hit about a week after that.  I remember praying that the chosen family had been able to get there, so that he was with his family during that stressful time. 

An Aside:  That is one of the problems with the adoption journey.  You invest a little piece of your heart in each child, even the ones you don't inquire on.  But you rarely, if ever, have a chance to learn what happened to them.  Some kids in the foster care system that I have watched for a long time are still there, their pictures and descriptions being updated periodically, growing older and older without a family to call their own.  Hopefully they have not been moved too many times.  Multiple changes in family is NOT good for children.  So I just continue to pray for them and hope that they are well and that a family match will be made for them soon.  Often it is not that there are no families willing to accept them.  More often, it is the case of overloaded case loads, or case workers that have decide that only a particular family will do, and so they bar matching based on a prejudice (family needs to make a certain income, family needs to be the same race, family needs a stay at home mom, family must have no other kids, family must be experienced, must be a two parent family, must be a particular religious denomination, must be a certain age, must be in a certain locale, etc...), without giving the child a chance to know the love and stability of family.  While there are laws in place to protect children from the preconceived notions of caseworkers, it is hard to get them enforced.  So some kids sit in foster care while literally hundreds of families have expressed an interest.  On the adoption boards, it is heart breaking when you see a child that so many have expressed a desire to adopt, but they are rejected by the caseworker for no real reason.  And for years the child loses out on having a good family.  While I believe that the foster care system is far better than some alternatives (like institutionalization, which is not as bad in this country as it is in others), there is just so much bad practice, poor oversight, caseworkers and such that like the power and have forgotten about helping the kids, and so much bureaucracy that paperwork trumps the needs of the child very often.  But it is a necessary function to keep kids safe. There are GREAT caseworkers out there, great supervisors, great, caring compassionate people in all levels that DO care for the kids and have to fight with the system they work for to ensure what is best for the kids.  I have been honored to meet and work with quite a few of them.  It is a system worth fixing.  Okay, off my soap box now.

So, anyway, where was I, oh yes, after we were not chosen for little Lucas, we continued, as we had been, sending out our inquiry forms to any child's caseworker we thought we were a potential match for.  We were in contact with The Cradle out in IL about a beautiful baby girl with Apert Syndrome.  During the process, one of the people I talked to was surprised I had not seen her picture, so she told me the link to go to.  She did not, however, tell me that it was a private link, as most of the agencies I had been working with had a handful of public photos with the child intros.  She was such a beautiful baby, that I shared her picture on an email list as I child I was hoping to adopt.  But when the agency found out, there was a lot of backlash, and we were taken out of the running because of it.  I never thought to ask, as I had not run into many private pictures before that from the agencies I had been working with.  And the few times we were given private photos, it was stated right up front that they were private and not to be shared.    So that miscommunication ended that exchange. 

During that time we were contacted again by the Texas case worker.  For a third time, (once before we were in the loop and now twice since) the family who was selected for this little boy backed out once they got his full disclosure packet.  There were doing another family selection and wanted to know if we were still interested, and to make sure that we understood what global developmental delays, product of a consanguios relationship, prenatal exposure to drugs and alcohol, and a benign cyst in his head meant.  She was tired of people saying they were ready to parent him and then when they go the reports and such, realized he had more issues than they realized.  So I said yes, we understand what that set of issues could mean for his present and future, and yes we were still interested.  We moved on to the next level of selection and went to the three family committee (or rather our social worker got all of the information together and went to the meeting as out representative as is usually the case).  A few days later we got a phone call.  Our family had been selected for little G, who was now 2 years and 7 months old.  The information packet with pictures and his full disclosure was being sent to our social worker for our review.  (and we were told it was private info not to be shared until we signed an intent to adopt and the process was fully underway).

So about a week later we got a call from out social worker and went to her office, expecting a thick folder with his disclosure, after all he was only 2years 7 months old, how much of a folder could he have.  When we arrived, she told us to sit down, and had an odd look on her face.  First she handed us a stack of pictures and a letter that had come with it which was summary of his issues essentially.  He was quite cute.  Then she walked into her office and brought out a huge stack of papers, over 1500 pages.  THIS was his full disclosure.  half of the bulk of it was redacted reports of the early CPS visits, the allegations, the court findings, etc...  Both from before he was removed from his home and after.  There were the reports from the foster home she had been in and why after only a few weeks the foster parents requested that he be moved.  This little guy, at not even three years old, had gone through so much.  First his conception was not a consensual one, and was a very traumatic even for his 14 year old birth mother.  As she had no way out, she turned to drugs (primarily any pills that a 14 yr old can get her hands on and alcohol) to deal with the painful and trapping situation she was in.  He was actually fairly healthy when he was  born, and was sent home with his young mom to home that was really not a safe place for either of them. My heart continues to go out for his birth mom, even today.  She has walked a hard and rough road so young. The initial CPS call had been before he was born, but the findings were unfounded.  During the first year of his life there were over 5 visits to the home.  By the time he was 13 months old (when he and his mother and her sisters were removed from the home) he was emaciated, did not crawl, or walk, or talk, and had only two reactions when he came into foster care--if offered a bottle he would suck it down as fast as he could, and if someone raised their voice or their hand, he would visibly flinch (something he still does to this day).  He did not play with toys, did not interact with other people, and as one foster parent described him "was like a wild animal". 

G had bounced through five foster homes before his parental rights were terminated.  He learned to crawl around 22 months old, and walk at 2 years 2 months old.  He started to say words around that time.  An MRI revealed an anacroid cyst in his head (left side), and genetic testing ruled out a number of possible disorders.  He was diagnosed with PDD-NOS when he was 2, as well as his global developmental delays, hypotonia (very low muscle tone), weaker right side, and potential minor genetic issues not screened for due to his beginning.  We read every page (1500 pages...) of his full disclosure packet.  We could understand why he had been turned down by four families prior to us (one was a former foster family before they started family selection), his paperwork was daunting.  But we talked about it and decided that we felt we could handle his issues.  So a week  after we first got his information (it took a few days to read it all), we sat with our social worker and discussed his issues, and then we signed the intent to adopt and set it back to Texas.  That was in early October.  A couple of weeks later we had a conference call with both social workers, his foster mom, his speech therapist, his occupational therapist, and his physical therapist.  We asked a lot of questions and got more concrete information about him as a person, not just a report on paper.  We even got to hear him on the phone for the first time.  He was only saying one or two words at a time, but he had a cute voice.  His echolalia was evident, as he would repeat what his foster mother said.

 We arranged to go down to meet him in person and spend time with him a couple of weeks later.  So November 2nd we flew to Texas, and spent 10 days with him, mostly at his foster home.  His foster mom was great.  She was the one who had gotten him into early intervention and worked hard with him on his developmental growth.  We learned of his incredible fear of water, his love of pushing buttons, and his sweet smile.  We even got permission to have him a couple of nights at our hotel, and took him to the zoo.  He was very overwhelmed by the zoo at first (and by the fact that he really had only known us a week), but after we sat quietly by the duck pond and fed the ducks with the quarter machine duck food, he started to relax and was able to enjoy himself.  We took him to a couple of playgrounds, which he had never been too, and he loved it.  It was a great "get to know you time".  I wish we could have taken him home then.  But alas the process is long.  We had to wait on paperwork and such.  We also got to meet with his doctor while we were there, and got information to take back to the doctor we had chosen at home.

When we left, we had high hopes that he would be home for Christmas.  Late in November, while all of our paperwork was in process (interstate adoption can actually be harder than inter country adoption, as I heard from someone in Belgium and someone in Canada, it was easier for them to adopt a child from the US than it is for someone from a different state to adopt a child within the US--something is wrong with that picture).  We got a call from the international agency we had been working with.  Our dear, dear Rustam was available again.  Upon further medical testing, the family decided NOT to adopt him.  So he was available.  So of course we filled them in on the in process adoptive placement, and as both parties were agreeable, we made the snap decision to get our dossier translated and sent to the region in an effort to try to bring our boy home.  The next day, we went over the new reports, some dated earlier than the ones we had previously, but with different information on them.  We felt jerked around by that point with the whole international adoption issues, and since we had G firmly in process and he was coming home soon, we did not want to jeopardize his adoption by chasing a ghost.  So we went above the agency's head to their parent agency, told our story and our concerns, asking for clarification of the information we were given and the discrepancies.  We still wanted to move forward, we just wanted to make sure it was real.  We got a reasonable explanation back from the parent agency, and were satisfied with their response.  however, the subsidiary agency got very upset with us for asking our questions above their heads (questions that they had been asked but could not provide satisfactory answers to).  They terminated our contract, and thus we lost Rustam again.  In hind sight we could have fought the hard fight and tried to get accepted through the parent agency to try to bring him home, but as it was, our funds for adoption were low, and though we could get a second mortgage on the house to do it, we really had to focus on G in Texas, as he was a sure thing, and Rustam was not.

So we again grieved for Rustam.  But we had to focus on preparing for G to come home.  We had a travel date of December 22nd to bring him home.  So our plan was to fly down on the 22nd, get all the papers signed, stay in Texas, with him with his foster mom, for Christmas (rather than rush him to unfamiliar territory right before Christmas, and then come home after that with him.  We were awaiting final confirmation of the travel plans, when on December 19th we got a call that said that a judge blocked the adoption because he did not think the child should be placed out of state (enter the joys of ridiculous financial incentives given to the state for placing children in state even when the agency has gone to extreme measures to place him in state without success, and thus turned to out of state to find a proper home). 

So began the most ridiculous and expensive part of our adoption journey.  There was no way that this boy, whom had been given up on by so many people, and had spent the past two months with daily phone calls, videos, photo albums, and his foster mom preparing him to move to our home, there was no way we were going to allow some short sighted stuck up judge to deny him the family he had been being prepared for.  So we fought, we called our adoption lawyer in NY, who could only advise as he had no jurisdiction in Texas.  Then we called every lawyer we could find in the greater Houston area.  Well, A did most of that work, I was focusing on my job a lot during that period as we were very busy at work, focusing on my job kept me sane, and it was our primary income to support our hopefully growing family.  most of the ones we talked to said they felt our pain, yes it was unjust, and not right, but they would not take the case.  The Texas agency had been told not to talk to us--though not all listened, because they hated the injustice, and they explained to us that it was a good ole boys club, and if they stepped on a judges toes, they would be "punished" by the judge ruling against them in the next few case brought to court, thus messing up foster care placements and adoptive placement just out of vindictiveness (of course they said this off the record, and I respect their need for privacy and the protection of their positions). 

We finally found a lawyers ballsy enough to take the case, and who charged an exorbitant fee.  A's niece was a new lawyer fresh out of law school and got us some information that we passed on tot he lawyer in TX.  Then on the adoption lists, I got some information about the Child Placement Act of 1994, which states that you can NOT be denied placement merely because of geography (out of county, out of state, etc...).  So the judge's ruling was illegal.  We passed this paragraph of a huge, multi page bill (so easy to miss), on to our lawyer in TX.  She was able to get the judge to recuse himself from the case (which saves face for him and fixed the problem for us as it went to another judge who was aware of the fight).  The legal costs topped $9,000--so yes we did take out that second mortgage on the home.  We were told that most of the time people just give up when they are denied.  And if we had not already "lost" so many kids we had been preparing for through the international adoption process, we might have been more likely to give up.  But it just was ridiculous NOT to fight against a prejudice and self-seeking judge.  He later claimed, for the record (trust me we heard about some things he said off the record (primarily about our family make up) that make me realize he is NOT a good man), that he had not realized so many attempts had been made to place in the state, which was not true as he was told that at the hearing in December when he denied the placement. 

That new judge said that he trusted the agency to make the right placement for the child.  So they contacted us and within 10 days, I was on a plane to Texas.  i spent a week with G so that he could get to know me again, and so I could try to explain snow to him as it was February and he had never seen snow like what we get up here--Texas was balmy to me in February (A had to stay home and work as we did not have the funds for both of us to be out of work and both fly down).  To make sure everything was by the book, the state requires an overnight visit in the prospective home prior to final placement.  That is usually waived for longer distance adoptions, but with all the issues the agency decided to make sure it was done.  So a caseworker flew back to our state with us, inspected the home as required, G spent the night while the caseworker enjoyed the bed and breakfast that was down the street.  She came over in the morning and we signed all of the final papers for his placement.  We got the normal six month post placement, pre-adoptive time shorted to five months, and were able to finalize his adoption in our own state.  July 31st was his finalization day.

So that is how Gonzo came to be our son.

I know this series of posts is entitled thinking, and you can think a lot more thoughts in a short period of time, but it take days to try to write it out. I will continue this story, as it is pertinent to what I am thinking about.   But right now I need to spend some times with my boys.  They are playing Monkey Ball on the game cube right now.