Busy day ahead....

So....today is a very busy day.  I have to to babysit for an hour this morning, and after I drop my little charge off for her preschool program at the Arts Center, I have to head down to a nearby school.  I am meeting our school's guidance counselor, who is also the CSE chairperson, there to look at one of their programs.  Then we head on to another two schools to look at their programs--one being at Prospect, the school where he did preschool and still does aquatic PT.  We are all still up in the air about what will be the best setting for Josiah for next year, as this year has had so many ups and downs and all around.

After visiting three different schools and reviewing their programs, then I have an appointment with our family therapist (just me today), which will be good as life has been so busy that I have not had a chance to see her and update her as to what is going on in the family for a few weeks.  It will be good to also talk about a variety of things going on with our family, with myself, and with the boys.

After that, I have to head back home (an hour away), pick up Josiah and go back down to Prospect (an hour away) for his weekly Aquatic Physical Therapy time. 

So today is a lot of running, running running....I just hope it is productive and useful, as I could really sue a productive day.  The last couple of days, even though I have worked on the house in the evening, have been two steps forward, two steps back kind of days.  I had thought the plumbing was done and we just needed to hook in the fixtures--but alas, after relaying the bathroom floor with new adhesive (the self sticky tiles did not stick---go figure), I had hooked up the bathroom sink, which worked beautifully--until I shut the faucet off and for some reason the pipe in the wall decided to start leaking.  So I had to shut off that water to the sink and shower part of the bathroom (the other half is still not hooked up...).  Then I finally got a brand new faucet for the kitchen, as the other ones I had both had problems (used stuff can be great or can be a headache), I got that all installed (on my own like the bathroom sink), and after I turned it on, it also worked well.  But I woke up this morning to there being water all over the kitchen floors, seeping under the wall.  The sink faucet is not leaking, which means a pipe in the wall as sprung a leak....

So two steps forward, two steps back....

And I am feeling blue and lonely and a bunch of other things in addition to the crazy running around I have to do today, so that compounds the issues of the day.  I hate blah feeling days....

lllife iiiiiiiiiiiis buuuuuuuuuuuuuuusy

I have actually tried to write a few different posts, but either run out of time or out of emotional energy to write them....

Yes, blogging sometimes takes a lot of emotional energy, mainly because life takes a lot of emotional energy and transformation takes a lot of emotional energy, and my life right now just takes a lot energy in ALL areas...I have such a headache.

So, quick update on various areas:

The renovations on the house--ugh... yeah, I won't go into details...suffice to say that everyday we get a little closer and a little closer to the finish line...I hope to have more news later on---OH wait!  I do have some good news, instead of having to build kitchen cabinets and create a kitchen from scratch, about 2 weeks ago I was given a used kitchen--cabinets, counter tops, dishwasher, stove....  What a huge blessing it was.  So there was a reason why the kitchen had not yet been worked on.  We had to redesign the central part of the house, changing the layout of kitchen and dining room in order to be able to use this great kitchen.  And in the end I like this design better.  So the kitchen is almost plumbed (it would have been finished being plumbed today if I had not needed to take a break and give my dad a break, so that I could catch up on emails and phone calls that I have been neglecting for the past 3 weeks.  And so i could take a deep breath and just focus on other areas of my life that need tending for the day.  So I have taken my break today to be online and try to blog, before I have to go back to work at 2pm...

School for Josiah---ups and downs, still trying to figure out what is going on with him.  I don't remember if I have posted about our chemical imbalance thoughts and such, if not I'll do that at a later time.  Something is just not working for him there, and it does not seem to be working for them.  I am convinced it is a combination of factors.  But that still does not give me any more insight into the best course of action to take.  We have a little time, we will be looking at other programs with the CSE chair---I feel kinda lost on this whole education plan thing for him.  I thought Gonzo's issues were complicated and challenging.  in many ways, he was a piece of cake compared to Josiah because Gonzo's issues, as challenging as they are, are consistent and somewhat predictable.  Josiah is not...

There is more I want to say about other things, but I need to get ready to go back to work....starting next week, it will be full time, so no split shift, no more break in the middle of the day.  But that means a higher income too....
I'll blog again soon....

reflecting on comment....

So,  i received an interesting comment about my last post from someone who decided to be anonymous.  The poster who was too fearful to even write their name said that essentially that I hate school and have poisoned my children against it (which must be why we spend time every night finding the three things we like best about school, and what they are looking forward to at school tomorrow--yeah, I really am trying to poison my children against school...(rolls eyes...sigh...)).  Which I find interesting, given that most of the last post discussed the benefits of homeschooling against the benefits of public school education--and the reasons that I DID NOT want to pull my son out of public school.  Because of the BENEFITS that school offers.  Just because I believe that certain aspects of education are better fulfilled in other ways, and because certain aspects of the institution of school bother me, does not mean I hate school.  If I truly hated school and saw no beneficial reason for sending my children, they would have been home schooled long ago.  Which tells me that the person (unless they are just a troll trying to create discord and hurt in an already painful and difficult situation, in which case I stick my tongue out at you and pray that you get a life worth living) has not truly read my posts about Josiah's schooling, or understood the many many things I have said about my beliefs about school or what I want for my children.  As I do not hate school--there are things I hate ABOUT school, there are certain people associated with the school that I do NOT like, but as a whole, if the placement and supports are correct, then school can be a VERY positive and beneficial experience. 

As any of my readers know, there have been many posts about the challenges that my son is facing at school, and I have talked at length about my feelings about how the school handles some things well and how they do not.  I have talked at length about my feelings about the basic structure of the public school system as a whole and how it is not ideal for the complete well rounded development of children.  I have also stated many times why it is beneficial and an important part of the childhood experience in this culture.  I have talked about my feelings on home school, and why I feel it is important for my kids to BE IN SCHOOL.  Even the public school system know and requires only 2 hours of one-on-one instruction in lieu of a 6-7 hour school day, as the shorter, more individual education takes far less time to accomplish more academics.  That is because, part of a child's education at school has nothing at all to do with academics--it has much, much more to do with social and cultural molding.  And that is very important.  Most people who remove their children from public education do so because of they do not agree with the social and cultural molding their children are getting.  I am not a huge fan of it myself, as I believe it is an outdated motif, left from from an industrial, assembly line mentality era, when it was important to get children accustomed to the industrial life view and living model.  Our world has change to a post-industrial era, and creativity, individuality, and numerous other social and cultural traits are more valuable than industrial modality, but it is taking the school model longer to change than the culture as a whole. 

I have spent more energy (physical, emotional, & cognitive) dealing with school related issues in the past four years than i have in dealing with ALL of the other issues the boys have combined, which if you know anything at all about my boys and their special needs, you will have some understanding go how much time and energy goes into managing their needs aside from school and aside from them just being kids.  The main reason for that is that public school is not in any way designed to handle kids who do not fit into basic molds.  And we, as a society and a culture, have learned that people have value (did you know that anonymous commenter) and can contribute to society as a whole, as well as live fruitful lives from an individual perspective, if all people are treated like people and given the opportunity to have a family, to have an education, to have social interaction, to be out in public--unlike the 1950's idea that all people who do not fit the right molds need to be locked away, and neglected, and allowed to die or languish is some state akin to death, rather than given then chance to reach their potential.  Thar means that those who would have been locked away before, are now being included in life and society as they should be.  BUT it also means that people have to be flexible, and be able to learn and be able to adapt and change, and be open minded--they need to think outside the box, and be ready fro trial and error, be ready to have unexpected reactions, and be willing to lose the cookie cutter children idea.  It means that those with special needs, have special needs--needs that are different from the needs of the average person.  it means that something that worked well for me or you or joe schmo down the street, may or may not work well for them.  If their needs did not differ significantly from the average person--they WOULD NOT HAVE SPECIAL NEEDS!!!

It means that as a parent I have to be more flexible in my expectation, my desired for my own life, and my dreams for the future both for myself and my children.  It means that the doctors have to be willing to gain knowledge about their various medical issues which make treatment different for them in some areas.  it means that teachers need to be open to learning other styles of teaching and dealing with a child whose needs and abilities are different.  It means that people need to stop assuming they have it all figured out, and be flexible, wiling to change, and grow and learn--not just once but everyday.

So, dear troll, it also means that as a parent, I need to work as hard as I can to find what works and what does not for my child.  That in order for him to reach his fullest potential, have stability, develop appropriate social behaviors, and become a fully independent adult in another 15 years, I need to respond appropriately to his needs, and be his advocate to ensure that those environments and areas(medical, educational, psychosocial, developmental, and social) that are part of his life and vital to his growth and maturation, are appropriate and are helping rather than hurting his ability to become an independent adult.  My job is not to ensure that he is always happy or have everything that he wants, my job is not to make the lives of those who know him easier and to pity them for their having to work with a child with challenges, my job is not to make excuses fro his behavior or to ignore his needs and try to force him to be "normal" (we all can see how easy to is to say to the child "get up and walk like a real kid" and when he does not to blame him for his insolence, or blame his parent fro carrying him--forget the fact that he has cerebral palsy and can even stand with out support--if that is ridiculous, why would you think that other special needs are less debilitating or more deliberate?). 

My job and my passion to to help make the world a place where all people --ALL PEOPLE (even the comment trolls)--can be accepted for who they are, for the amazing things that they CAN do, for the unique ways that they can contribute to the growth and evolution of humanity, and for the blessing they can bring to all that they meet.  And I know that I will meet many people (have already) that do not understand.  People that can not see past their own personal experience to recognize that there are different kinds of people in the world and ALL have value.  There are people who do not understand how you can be upset about something going on with a particular situation without hating the whole situation.  People who do not get that just because something is less than ideal, that it is okay to express your thoughts about  that less ideal issue without having to write off the whole institution.  So, I hope that the commenter will have the courage and the respect to step forward and discuss their reflections openly and with thoughtful respect.  And will remember that all of us get frustrated sometimes, and there is nothing wrong with being frustrated.  God knows my son's teachers get frustrated, and struggle with how to be approach the situation, but sometimes it is overwhelming--and it is okay to feel overwhelmed, it is okay to need to walk away, it is okay to vent and to rant---and it is okay to then come full circle and be ready to step in again and try to work towards a solution.  God knows we all hit different parts of that circle at different times...even in the same day.

So i will continue to work with the school personnel, with the teachers, with the therapist, with the doctors, with my son and with myself regarding ongoing issues at school.  I will continue to vent when I need to, reflect on things when I need to ,work out my thoughts and feelings, work through new information, and be open to expressing all of it in a public forum--because I know that I am not alone in these challenges, I am not alone in these frustrations, I am not alone in these joys, I am not alone in these blessings---and even the trolls are there to remind me why I blog, why I think out loud (in writing even) and why i am NOT afraid to openly express my feelings in a public forum.  There are others out there who need to know they are not alone in their experiences.  There are those who like to hear how ideas and thought processes are moving so that they can use some of it for their situation.  And there are those like the anonymous commenter, who need to express their own frustration, and remind me that what we think someone is saying is not always what they are saying.  inference and implications may be completely different...and it is okay---each person lives their own life their own way.

Thinking...as Usual...

So, Josiah's return to school after break has not been so good.  Something is causing him great distress there, to the point that even talking about school gives him a stomach ache.  And he does not seem to be able to pinpoint exactly what it is that is just so problematic.  He shares with me that is is afraid at school.  The school does not seem to ever interpret his anger reaction as a shield against his fear--which tells me they do not know much about basic human dynamics.  Most of the people I know put a face on fear that does not look like fear.  For some people, fear shows up as depression.  For some people fear presents as mania, they run around like crazy being super busy and never stopping--but it is because of fear that drives them.  I have known many people who when they feel fear, the get defensive and angry.  And anger covers their fear, but the problem is not anger, it is fear, and if you help alleviate the fear, all of the symptomatic fronts, all of the behaviors that human being have to try to hide the fear, will dissipate.

It does not matter if it is fear of physical harm, fear of not being good enough, fear of making mistakes, fear of failure, fear of not fitting in, fear of being seen as wrong, fear of not having needs met, fear of being emotionally injured, fear of not being able to succeed...all fear is fear, whether rational or not, whether well founded by someone from the outside or not, whether anyone else understands it or not....FEAR IS WHAT IT IS.  And fear does not discriminate by gender, height, abilities, age, skin color, or any other of the artificial divisions we make between human beings.  Fear is fear is fear, and whether you are an adult or a child, fat or thin, black or white, tall or short, male or female...fear is fear, and we all have different ways that we retaliate against fear.  Some people laugh hysterically, so people cry hysterically, some people flutter around like a hummingbird on red bull, some people sit and stare out the window, some people sleep, some people are insomniacs, some people eat (and eat and eat), other people can barely keep water down, some people becoming bossy control freaks, some people become weepy incompetents, some people being red hot angry....

Until you calm the fear, until you help a person feel safe, until they know that they can be held, contained, protected, and know what to expect...until the fear is calmed...you can not control the behaviors, and the more you try to the greater the fear increases, and the behaviors start going in all different directions.  When you try to stomp an an already full water balloon trying to make it smaller, it will pop.  When you try to stomp on an already distressed human being, trying to stop the filling without stopping the flow, they will burst.

Calm the fears, give clear boundaries and safe, logical, compassionate consequences, give support and encouragement to move beyond fear, give a sense of belonging and safety...those go a long way to alleviating fear.  Once a fear pattern and model has been in place for a long time, it is going to take a LOT more than a pat on the head and simple empty reassurance to reduce the fear that started months before and grew in response to inappropriate responses to need and/or fear expression. 

So I am thinking it may be time to bring Josiah home, to finish the Kindergarten year at home, just as we did with Gonzo.  Give him some time to learn and focus on schooling where he feels safe, and can then again start to equate learning with a safe activity.  Then we can try again in first grade, to integrate him in the social industrial model of public education, hopefully with a better sense of himself, and more internal capacity to regulate his own fears and insecurities, and be better able to understand the oddities and social structure of public education.  I DO believe that homeschooling done correctly is FAR, FAR superior to industrial institutional education, HOWEVER, I also believe that having the social training that a larger school population provides, and the greater range of experience with a variety of different adults and children, each bringing their own family culture and experience into the lives of the public school children is very important in helping children develop a stronger, broader sense of the world.  If it were only about academic achievement, public school should be obliterated and replaced with conscientious homeschooling, as each academic plan/curriculum is based on each child's needs and interests.  But school is a social experiment, and helps even out the family quirks, and introduce kids the the fact that everyone is different, believes different things, has different experiences, and THAT IT IS OKAY.

wow, a ten day break from blogging!

This is the longest break I think I have taken from blogging since I started this blog nearly a year ago.

So, I have been working a lot of the house, renovations seems to go so slowly.  But we had the framing inspector come and he approved what has been done so far.  So that is a good thing.  I am still hopeful that somehow we will be able to be done by March 13th so we can be moved in by March 15th, which is when I have to be out of my apartment.  It is coming along...I have faith that we will make it by the deadline.

Josiah showed some improvement during the remainder of that last week of school before the winter break.  We have been working on reducing any potential bad behavior influence in case that is exacerbating the problem.  Like I wrote last time, we have eliminated SpongeBob for the time being as so many of the rude things he was saying was coming from there.  A and I evaluated video games and we discovered that the Hulk game they got for Christmas has a lot of "I'm gonna make you die" and "I'll break your neck sucker."  and similar phases, we have decided to remove all superhero video games (and any superhero shows) for a while until the kids are able to understand that you just can NOT say those kinds of things outside of a video game.  So essentially the kids 2 dimensional entertainment has been truncated to much more wholesome shows of their choosing--mainly Veggie Tales, Go Diego Go, Thomas the Train, Up, Curious George, etc.... and video games mainly racing games like Mario Cart, and WII play, MonkeyBall, and Sonic.  the do have other games (Nemo, Dora, Madagascar, etc...) that they can play too.

In addition we have been working together on self-control techniques, reducing "freak out" behavior, super praising positive and wanted behavior and actions.  The kids are being more responsible in cleaning up after themselves, which has been great, as Gonzo had been doing well with it, but Josiah had just been refusing to do it.  And now they have both been helping, and HAPPY about it.  Josiah, with verbal persuasion, actually wore his glasses for HOURS today, without complaining after the first 10 minutes.  As he is supposed to wear them 6 plus hours a day, it is great to finally have some compliance in this area.  I am hoping that as he returns to school next week, his good behavior and compliant behavior (I have been using a combination of collaborative problem solving, where he and I talk about a problem and decide together on a solution), and basic "I'm the mom and I love you so you need to do this.  It is good for you because XYZ".  Gonzo, as usual, is more problematic for me at home than he is a school, and so using the collaborative problem solving has been somewhat effective, but as soon as another person is in the mix, he becomes Mr. defiant and nastily rude to me about some things.  Overall there has been some improvement in this area, but Mr. bossy and I still butt heads from time to time, which usually includes a lot of melodrama on his part.  Overall though, this vacation has seen the kids working and playing well together, and having some good family moments.

I have been working on a few things in myself these past couple of weeks as well.  To reduce stress I have been trying to do a guided mediation a few times a week, and it has been helpful, as well as some other centering exercises.  I have also been trying to move my body more.  I had mentioned previously that I am connecting socially with people in a neat virtual world called Second Life.  They have an extremely wide variety of different sim worlds there, and so I pick and choose.  I have found a couple of DJ music clubs and you can dance animate your avatar (the representation of yourself in the virtual world).  So some nights I have decided to imitate my avatar with the dance moves.  It has been fun!  Though of course I close the shades, as I really don't think anyone wants to see me dancing around my living room.  But it is a good workout, with great music and a lot of fun.

The next couple of weeks will be full of working on the house, packing the apartment, and praying that everything comes together in time....

changes I am making

Okay, so I know earlier today I had my little rant about things about school.  It is just that it is such a difficult situation, and the school and I both have high hopes for my son, but we also have different ideas of what that means.  I want Josiah to be the best Josiah that he can be--to love who he is, the embrace his strengths and his weaknesses, to find what makes him who he is, and to find the best way that he can contribute to and make an impact in the world.  I want him to be happy with who he is, happy with the choices that he makes, and be a person that others can respect and cherish for who he is and how he chooses to live.  That is what I want for my son. 

The school also wants him to strive to reach his highest potential.  they want him to come to school ready to follow the schedule that all of the other kids follow.  They want him to move through the day in the same way other kids do.  They want him to not question their authority, and just calmly and kindly associate with his peers and his teachers in a way that is respectful and acceptable in our society.  They want him to conform to the needs and routines of the institution.  They recognise that due to his physical and developmental challenges, he needs help and some accommodation to do this, and expect him to just accept their help and accommodations just as they expect him to follow the rules.  They want him to be successful in the arena that they are setting forth for him.

Both of these goals for Josiah are good.  Both have the right focus--wanting to help Josiah to succeed and find his niche in the world, and to do so with self confidence, self-discipline, and self awareness, as well as a more local and global awareness of how he and his actions impact others. 

But what does Josiah want?

obviously we are all missing something here--as he is NOT reaching those goals.  What is his focus, what lens is he viewing the world through?  What is the motivation that he has for his behaviors and the words that he says?  When he gets angry and frustrated, he shouts out things and says he wants to hurt people, but I have watched him and know that he actually does not want to hurt or upset others, but when he is so upset, I think he puts that "bully" cloak on because it hides his fear.  He talks to me about being afraid, when I ask him to tell me about what was going on.  At school he says he is angry, at home he tells me he was scared.  But at school he can not identify why he was angry and at home he rarely can identify verbally why he was scared. 

I have spent quite a bit of time this evening going over his daily reports.  January was an amazing month of him, almost every day was a "star student" day (meaning that he did very well, and even if he had a mishap, that he worked to correct it and overcome it).  Then suddenly, with very little lead up time, he was having horrible days at school again.  he refuses to go to music, which is the class he loves the most (which started before the big meltdowns) and is telling me that he is scared to go there because he got in trouble, though no one has mentioned trouble in music class.  Other things I was looking at was the phrases he is saying when he is angry.  At first they made no sense to me, as they are not ones we use often (if at all) in our house--"You Suck" "I hate people" "Piece of garbage" etc....  And as read through them a few times, suddenly I could hear them in my head being said by a specific voice--the voice of Squidward on Sponge bob square pant.  Almost every single rude and mean thing Josiah has been saying has come from Squidward!!

So I started really thinking about this...In many wise and religious texts it talks about how what we focus on is important to our lives and/or becomes a part of us.  Phillipians 4:8 says "Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things." (NIV)  This idea is well supported by the Law of Attraction teachings, "What you focus on expands..." "What you think about you bring about..." and a number of other references to this in the movie/book The Secret, as well as many other books.    I'd go more into this but it is late and anyone who really wants to know can find many more sources than I just by using google.

Anyway, with this in mind, A and I talked about it, and we decided that we will see what happens if we eliminate Sponge Bob Square pants from the kids viewing. At this point I am willing to try anything (including getting rid of TV, video games and all other 2 dimensional substitutes for life--though that is a bit drastic).  I am toying with the idea of limiting viewing to educational shows only, but for now I think we will go wit eliminating Sponge Bob as that seems to be Josiah's focus and his internalization of some of the attitudes and phrases from there.  I am also further reducing video gaming time (which I had started already, as Josiah has been having extreme reactions to losing--it doesn't help that his brother can not stop himself from rubbing it it very nonchalantly anytime Josiah does not get a perfect score). 

I am really hoping it will help.  i am not sure what else to change....

Life is sstill good...but....

Have you ever noticed that when a child is exhibiting challenging behavior, the school is quick to blame the parents.  But then when the child's behavior improves, the school pats themselves on the back about what a great job they are doing, with no credit given to the parents for the good behavior.  And then if that same child has a challenging week after a period of good, come then call that they need to talk about what is going on at home, because of course if it is bad behavior it must be because the parents SUCK.  I am sure they don't consciously think that, but that is essentially what happens, and the message it conveys:

Good child=Good Teacher, Bad Child= Bad Parent

Forget the fact that he did not exhibit these behaviors until he started school with them.
Forget that nothing significant has changed at home recently to prompt behaviorally negative reactions.

Forget that when his behavior improved there was never a call home that said "He is doing great!  What has changed at home to bring about such positive behavior changes?  lets meet to discuss what can we do to understand why he is doing well, so that we can keep it going."

But give him a few days of poor behavior and we get the call about needing a meeting.  Because obviously if he is having a bad week, it must be something the parent is doing wrong.  A child is not allowed to just have a bad week.

I just am at a loss.  I have no idea why he had a bad week last week, or had a rough start to yesterday.  He has been sleeping fine.  Last week I though tit was because he had a bad bout of constipation, but we resolved that and he is "going" fine again.  He has been eating fine, sleeping fine, a little clingy maybe, definitely a little more on edge, but I am not sure why.  Perhaps his body is fighting off a cold, but he has no cold symptoms.  Perhaps he is frustrated with something.  Perhaps he is just human, and we all have weeks that we just are  more grumpy than other weeks, without really knowing why.  I am just so tired of not only dealing with trying to help Josiah over whatever hump it is, but having to deal with the additional stress of school personnel who seem to think that something I am doing is the cause.  I am tired of the whole school sh*t.  He is not a child that institutionalizes well, which actually bodes very well for his adult life and his ability to someday be able to think for himself, to be creative and become someone amazing--As long as they don't beat that out of him by trying to jam him into a round peg hole when he does not conform like a little drone. "yes, teacher" "no, teacher" "flowers are always red teacher, I understand" "leaves are always green teacher".  A big part of the problem Josiah is having this year is that he sees all of the colors of the rainbow, all of the colors of the rising sun, all of the colors of the flowers.... 

He is frustrated...AND THEY DON'T GET THAT!!

Last week I said that maybe he is just having a period of time where he is frustrated by his limitations, and no one can do anything to reduce those limitations.  So sometimes it comes out in various ways, he is not always going to intellectualize it and say, "boy I am feeling frustrated this week about my physical limitations."

He just knows he is tired of not being able to do what he sees other people doing.  To me, that would sometime rear its head and give me an underlying grumpiness, even if I did not consciously acknowledge it.  but they said "no, no he has not expressed that at all"  completely missing the point of what I was saying.

God i am glad I had teachers when I was a child who, for the most part, could see the person in the child (aside from my third grade teacher who was just a monster).  But anyway, I am done with my rant.  I am hoping that things improve very soon.

Has it really been a whole week!...

Wow!! Has it really been a whole week since I last posted!!

Life has been gloriously busy--The renovations are moving forward at about the pace they have been.  The framing is almost completed, the plumbing is coming together, and the electric will be tackled soon.  Then the three preliminary inspections can be approved, and we can finish her.  That is something I am looking forward to with great relief and appreciation.

I have also completed the Health and Safety Training course required for the day care licensing procedure.  I still have my basic routine, developmentally appropriate teaching, and discipline plans still to complete and send in.  I have some issues with brevity, and am trying to figure out how to respond to the inquiries in the application packet that both satisfies what I want to say AND fits in the small space they provide for the answers.  Aside from that and getting their medical forms to my doctor and the kids doctor to sign off, I just have the floor plan layout and evacuation route plan, which I hesitate to finish until after the framing inspection in case we need to alter anything.  So it is mostly just paperwork left.  I do need to update my First Aid and CPR certification, but that is a one day course.  So there is still a bunch to do, but the end of the tunnel is in sight.

The kids are doing well.  Gonzo is going to be Student of the Month in his class (the teacher emailed me yesterday), as he has been having an outstanding month, many Outstanding Day Orange ratings for the month.  Josiah has been doing great with school lately.  He still has some outbursts but, they seems to be less intense, less frequent, and the teachers have been able to help him turn the corner and come back into a better frame of mind.  He also has been doing more academic work, and they have been scribing more for him, which makes a difference.

Josiah also had another dentist appointment yesterday, and he did great!!  We have one final appointment to fix the last of the issues, and the hardest ones.  So next Thursday will be the last treatment in a long nearly 2 year saga of getting his dental work done.  Dr. Baim has been incredible with him.  I am very pleased with how comfortable she makes him feel.

I also have been doing some cleaning at the apartment, since my lease is technically up on February 15th.  I deep cleaned the bathroom the other day, replaced the toilet seat, which I have been meaning to do for a while now, and scrubbed behind and under everything, I even washed the walls and door.  So, one room down.  I also have been sorting and packing the boys clothes so that the only thing we have to move at the last minute are the sets of clothes they wear to school.  If I can get a bunch of packing and sorting done now, then the move in 3 weeks will go much better, especially if we have not gotten the certificate of occupancy by then and the boys have to live with A for a couple of weeks while we finish the house.

Speaking of A, we had a great visit this weekend with A's sister who came for an overnight visit.  It was great to see her, and the boys love her dearly.  A has been doing okay.  One client has left the area though, and so A's caseload dropped, and is a bit worried about making ends meet.  Hopefully a couple of people will be added soon, so that that A will not have to worry.  A has also been great about taking the kids, though not without some guilt-tripping, it has been a good thing to know the kids are safe and having fun while I am spending many evenings working on the new place for them. 

So that is a basic recap of what I have been rolling with over the past week.  I am looking forward to a highly productive week/weekend to get as much done as possible on the house.  If we can get the preliminary inspections next week, the walls and finishing should come together pretty quickly.  I hope to post more than once a week, so hopefully I'll have a short update for you all over the weekend.

When a day goes well....

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

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

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

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

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

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.

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????

life is BUSY.....

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

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

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

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

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

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

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

Anyway, signing off for now....

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.

Exhaustion, confusion, and just trying to find a path....

SOOOO......................

It has been one of those weeks, where I try to stay positive, and try to look forward to a better tomorrow, and just keep putting one foot in front of the other, but it is hard to stay on that narrow way this week.

I am tired--physically, emotionally, spiritually, mentally--just...tired. 

This month has not gone at ALL the way I had anticipated when the month began....

I was so excited about Josiah starting Kindergarten and being in with mainstream peers...and it has been a nightmare--not that he is not trying but that the expectations of him to be able to just jump right into the mainstream classroom knowing exactly what to do and how to behave, in with kids who spent all of last yer together in that school in pre-k, preparing for this year when he was in a different school, different setting, and not preparing specifically for this classroom all last year, well, lets just say I believe a teacher has not grown nearly as much as she thinks she has over the past 20 years.  It is still the need to have children who fit only into the round holes that match the pre-set curriculum, and all other children just do not belong.  Not that she has said that, but even in a meeting today, as nice and open minded as she was trying to be (and I DO believe she IS trying) it is obvious that she just struggles greatly with any child who does not quickly fall into the little round hole so that the class can go as she wants it. Up until today I was leaning more towards the idea that it is old crap (which I mentioned in an earlier post though did not go into specifics) that had made me nervous for him to be in this particular classroom.  But after today, it is becoming clearer that it's not all me.  On the whole the school personnel are working VERY hard to try to understand Josiah and the web of his issues (there was yet another comment about how she understand his physical issues completely--which to me shows how much of an uphill battle this is going to be as he is a whole person and his physical issues directly and indirectly impact his behavioral issues, so if you can't open your mind enough to see that the two are related, then NO you do NOT understand his physical issues completely!)

Maybe it was a mistake to stay here.  Maybe it was a mistake to try to mainstream Josiah in Kindergarten--academically he is totally getting the work they are doing--reading sight words, understanding basic concepts, knowing his letters and numbers and the sounds the letters make.  But they have focused so much on writing, and he can NOT write anywhere near to the degree that the other kids can--and it is NOT for lack of trying.  He tries so hard at home to write, and we do hand over hand, and he WANTS to write, but his CP and the very delayed gross and fine motor development that is required for writing creates a huge obstacle for him.  I have spent so much time over the past three weeks analyzing, studying and trying to figure out how best to help Josiah and to give suggestions on what they can do to help him adjust that I feel like my brain is going to explode, if my heart does not first.  Yes his behavior is way over the top, much worse than I ever expected--so either I totally was not paying attention to what Prospect told me (though they were completely confident that he would shine in a mainstream environment if he had a 1:1 aide to support him (both for physical and behavioral stuff), so I don't think I missed anything), or Prospect completely downplayed or did not consider his behaviors to be so over the top, aside from the three that are addressed in the IEP.  OR, that the classroom spent so much time focusing only on his physical issues, that they completely neglected to consider his behavioral issues and how to deal with them at a level that he is able to comprehend and manage.  Square peg----round hole-----square peg-----round hole

"behavior is not my strong point..."  said by the Spec Ed teacher whom I love and who has always been good with the people that I love that are behaviorally challenged--she worked well with my brother, my nephew, and my older son Gonzo.  And yet for some reason Josiah...who has always been far easier to deal with than any of the other three boys I mentioned, has challenged her.  I just do not understand what is going on with him, what a night mare this is turning into....

I have also been trying to find a larger place to live, preferable a single family house, and there is just SOOOO little around here for rent.  With the refund check I finally got, I thought it would be such a great thing to pay off some bills and then set myself up with living expenses paid for a few months while I build up either my babysitting or my writing into an income that can take over when the refund cushion is depleted.  But I am just running into walls.  The couple of places I have found that  would allow the kids to have separate bedrooms (more on another day on why that is becoming a necessity more than a want) do not want me to be doing childcare, even when I assured them that I would be buying renters insurance and a liability insurance that covers childcare providers.  Then I have to wonder, if they don ot want me to be caring for 3-4 children during the day, why would they rent to someone who has two kids of their own.  It's not like there are going to be 20 kids there or anything.  So I have one more feeler out there about a house that is technically for sale, but has been empty and on the market for over 2 years, and maybe they will be interested in renting it to me.  So it is kind of a cold call, but we will see.

However if things do not start turning around for Josiah soon, if he does not get a handle on how he expresses his frustration and get some self control and start following the rules more, I am thinking we may not be living here all that much longer anyway.  I won't move Gonzo from his school program at this point though, so unless I can be assured that he would be able to stay in the program he is in, I do not know how we could move even if they move Josiah to a different program.  But it does not make sense to stay if neither of my children can attend the local school.  I may be jumping the gun, but frankly, I was blindsided by all these problems, and they are so reminiscent of Gonzo's steps into Kindergarten, where in the end we got a call from someone we knew who was subbing there who witness him being mistreated, and later confirmed that from other people who worked there, but NO ONE would come forward against that teacher when we asked if we could put their name a the source of the information.  So we had to file a lame report with the school about what we were told, and took G out to home school him the rest of Kindergarten.  I do NOT want Josiah going through anything like Gonzo did, and while I know we are in a totally different setting, totally different region, and totally different set of circumstances, I still feel a bit gun shy.  I am beginning to hate kindergarten for kids with special needs.  Even the second time around, it is still such a shock to go from a preschool where the child is cherished and their education was more individual in nature to the grand demon of public school where the individual is not cherished or upheld, and everyone has to be crammed into very specific parameters.  Not all teachers are like that, I have met and am friends with many who are not like that, but alas none of them live anywhere close to here.  And given how Josiah has been acting, I doubt they would find him much of a  picnic in their classrooms. 

Honestly, underneath all of this other stuff that I write about, I feel helpless. To the point that my insomnia is making a comeback and I find myself close to tears way more often that I ever let anyone know. I hate feeling helpless--and it comes out as anger and incredulity, frustration and God knows what else, but deep down, the real problem for me is that I see my child struggling, in a sea of strangers who he does not know or trust and who do not know or like him, and there is nothing that I can really do about it.  I can talk until i am blue in the face, give suggestions and pointers and try to understand what they are going through and try to help them understand what he might be going through....but in the end all I feel is helpless, unable to give my son the great and wonderful experience that Kindergarten is supposed to be.  I don't know what to do...I don't know what the right thing to do is....I don't know what path I am on, what path I have set my children on, and I feel so incredibly alone....

School (old fear dies hard), work and possibly moving to another rental?!?

So I have not really written in a few days.  There are a couple of reasons for that:  First of all my (MY) computer (the wonderful laptop I got for Christmas from K (my best friend for the past 19 years)) is back at HP for some repairs, still under warranty luckily.  So I have been using A's computer, as A is not using it, as there is neither Internet, nor a phone, at my father's house and A is still living there (though I went with A yesterday to see A put down a deposit plus rent on an apartment which will be ready in mid-October or November at the latest--yippee, more stability for my kids as we can get them on a consistent schedule with specific times and space where they can spend with A, and more chance to relax my tension for me).  So that laptop was here as A is here much of the time.  But A's computer is ailing, over the past year and a half there are vertical lines that have slowly been moving up the screen.  You can still see everything fine, but the color is subdued.  So for writing and such it is fine (thought watching netflix on it is not so good).  However, lately the cord has been iffy--it only connects some of the time, and about 5 days ago, stopped working all together.  So I have been using my ancient desktop, which is slower than death, has about 17 quarantined viruses on it, and that I use mainly for the kids educational and fun computer games.  It is a lesson in patience, and practice in grace to use the Internet with this computer.  As it can take 5 minutes or longer to open a web page, or to switch from one email to the next.  So I have not had the time to write much lately.  So my freelance writing this month is likely to be a big fat $0, as I can't do the work fast enough to ensure that I will get the research done and the articles written within the deadlines, so I have not been able to accept any assignments, which is annoying. 

I have written a little bit about the kids schools and my concerns, especially about Josiah (Gonzo seems to be doing very well so far).  He is trying so hard to find his place, and it is really stressing him out.  He is exhausted by all the walking that he is doing, going from room to room and doing stairs, and is so confused by the many, many differences in rules, expectations, and basic interactions that he encounters in the public school Kindergarten as compared to the protected, much safer feeling he got from the more lenient and accepting private special needs preschool that he used to go to.  I see him visibly relax once he has been home about 15 minutes, and feels more at peace.  It is GOOD for him to be learning a more age appropriate level of group interaction, but it is not easy for him.  The exhaustion on top of that from so much more physical activity adds to the stress, but is also very good for him.   His braces seem to be putting a LOT of pressure right above his ankles though, the new hinges (same custom bracing just new hinges, that were put on and ready just before school started don't seem to fit like they used to.  I think I will give Glen (his orthopedist) a call and get Jos down to Saratoga to ensure that they are oriented right.  Overall though, even with as much walking and such that we did this summer, he is walking more on a daily basis at school than ever before.  HE is doing great with it though.  I got an email from his PE teacher earlier today.  I hope she will not mind if I copy it here:

"I wanted to let you know that Josiah is doing a nice job in PE class. We have been working on various gross motor skills (galloping, skipping, hopping, jumping etc) as well as doing some movement education. Josiah has a very positive attitude and is able to participate in all activities. He is even trying to hop while using his walker. Other students (K and 1^st have PE together) are glad to be his partner when we pair up for activities. I appreciate Josiah’s effort and his personality. I find it comical that he refers to me as “The Announcer.”  "

This email really made my day, as he has been having a rough time of it in the classroom.  They have a red, yellow, green light motif for helping kids (and their parents) gauge their behaviour.  His first two days, he had a red light, the 3rd day it was yellow, and last Friday it was green--yippee!!  This week, Monday was a red light (he even hit and swore at the Sp Ed teacher, who is one of the kindest people I have ever met).  Then Tuesday was a green light, nearly PERFECT day.  Then today was a red light.  Today he was not feeling well.  He woke up with a cough and a stuffy nose, and while he seemed tired, he seemed otherwise okay, so I sent him to school.  But his assistant said that he was really irritable all day and wanted to be held (which usually means he is not feeling well).  He seemed to get worse as the evening wore on, so he is coming down with something, and I noticed he is having difficulty swallowing, so I think his throat is sore.  Even now I can hear him coughing.  I have checked on him a few times since putting him to bed and he is sleeping restlessly. So he is definitely coming down with something.  I will be keeping him home tomorrow so that he can rest, which means no aquatic PT either as that is now on Thursday evening.  He is supposed to have dental surgery next week (this nemesis of a surgery I have been working towards sine July 2010), but if he has a cold or even the hint of a cold, the pulmonary doctor said not to chance the anesthesia (which I totally agree with given his lung issues).  So unless he makes a spectacular overnight recovery, I believe we will be canceling next week's surgery, which means another 4-6 month wait, as that is how far out they schedule dental surgery for that office.  In some ways that may not be too bad, as he has to go under general anesthesia (GA) in October for a 3 hour MRI of his brain, as the neurosurgeon wants to evaluate how the fluid is moving through his brain as there is the possibility that his hydrocephalus may not be as stable as we thought.  So that will give more time between going under GA, which might be safer for him. 

I have something to admit, something I am a bit ashamed of--I have to fight myself hard everyday over old preconceived notions about his teacher and assistant, based on experiences from nearly 20 years ago.  I pride myself on having an open mind, being patient and kind, and on giving people the benefit of the doubt, and on the desire to forgive people for the mistakes they have made that have hurt me (either directly or through hurting the people I love).  I have found that I have a box of old memories, crap that happened 16-20 years ago in regards to these two individuals that are now such an intregal part of my sons life (the old issues are not related so two separate issues with two separate people).  I have found that I have to keep checking myself to not let my hurt and fear from those long past experiences cloud my vision and my interactions with them today, in the here and now.  I am ashamed to admit that I have held on to old crap, and am seeking a way to forgive pain that is two decades old so that I can see clearly now and be able to give them the benefit of the doubt as they work daily and intensely with one of the most important people in my life, my beloved Josiah.  So please take my fears about Kindergarten for my son with a grain of salt and know that I am struggling with separating old from new.  And say a prayer for me that this will be a growing experience for me and my spirit as I learn to let go and forgive old grievances....

 Overall though, the kindergarten teacher and his assistant (as well as the other people he works with) have been trying very hard.  They are definitely not used to a child with his special needs --both physical and behavioral.  And many of his behaviors stem from three sources--1) according to the tests done last spring, he is functioning (emotional, social, behavioral) on average at a 24 month level but with some ares much higher (good old standardized tests--make NO sense for a child with brain damage, they only give truly useful information about neurotypical children)--which I had missed when talking with the social worker who did the assessment, as they told me he is doing fine and should do well in Kindergarten with a 1:1 (I just reviewed his IEP again last week); 2) his physical impairment has left him unable to do some of the things the other kids are able to do (write independently, color in the lines, drawn simple shapes, etc...) so he is Very frustrated and I think embarrassed (given the way he hides his face when he is asked about it) that he can't do it, which leads to acting out, trying to be the class clown, or being outright defiant and contrary (I used to call Gonzo my contrary canary, but that can go to Josiah now); and 3) He has Gonzo as his primary kid role model, and he imitates Gonzo's behavior to a "t", something I have tried to talk with him about, and to ask him to watch the other kids and try to do what they do, as it is a great group of kids he is with in Kindergarten, and I think he can find good peer role models there, whereas his brother is NOT a person he should be imitating or learning habits from.  

Added to his issues is the fact that the kindergarten teacher is not known for her empathy towards kids with behavioral issues (told to me from other soucres more current than my own memories), and I really try hard to give her the benefit of the doubt that she has grown and matured as an educator from the time that I knew her when she was just starting out and my youngest siblings had her for a teacher (I am 9 and 12 years older than my two youngest siblings, so I was nearly an adult when she was my brother's Kindergarten teacher).   I also have a bit of a knee jerk reaction from the experiences we had with Gonzo in Kindergarten (totally different school district over 3 hours from here), which resulted in my pulling him out and homeschooling the second part of Kindergarten (back in our old town). I do not want to homeschool either of the kids, as I really believe that peer and social interaction is vital to their development, and learning to trust and rely on other adults is beneficial to their ability to reach outside themselves and their family for new experiences and growth.  However in Gonzo's case he was actually being both emotionally and physically mistreated (we heard from multiple witnesses, none of whom were wiling to speak out publically on that tyrant of a teacher or cross her as those who had suffered greatly I am told).  So to protect Gonzo we home schooled him for that second half of Kindergarten, and he did great.  This is a different teacher, but I remember clearly some of the things that occurred with my brother and my sister, who at the time were small, young, scared children dealing with the breakup of their parents (something that Josiah and Gonzo are still going through as A and I are still getting settled into our new roles--it takes a few years for life to be stable again after a break up of a family), and the instability that brings.  And she had no understanding or compassion for what the kids may be going through emotionally or any understanding that some acting out is because the kids already have stress they are dealing with and when they are trying to conform, but not doing it fast enough or well enough for a particular teacher, the stress becomes more than such a young child can bear.  SO while I am sure this teacher has grown and matured in many ways as an educator, I am beginning to wonder if she has learned to have compassion for kids who have struggles that are bigger than trying to figure out how to spell.  Josiah has SO much on his plate before he even walks through the door--his physical limitations, his newness to this strict of an environment, his struggles with a very challenging brother at home, his struggles with the shifts his family has had over the past year and a half with the separation of his parents, AND facing a Kindergarten curriculum which for some reason appears to be difficult to adapt to his physical limitations.   I know they are trying--trying to meet him where he is, trying to help him find his place in this new world of Kindergarten, trying to figure out how to bring him into the fold and help him find more positive ways to express himself--I DO know they are trying.  It is glaringly obvious thought that they are very unaccustomed to working with children who have special needs, as they do not have the patience that is learned from working with children who take longer to do everything.  They want him to adjust as quickly as a typical child adjusts, and that is just not possible, life is slower for him, his brain is damaged, it needs to create new pathways as the inate pathways were destroyed during and soon after birth for so many things, not just his motor development.  Laying new neurological pathwyas takes time, compassion, and repetition. 

Hopefully THEY will allow HIM to teach them a few of the life lessons that he has taught so many people.  Hopefully they will have hearts and minds that are open enough to receive the gifts that he can bring to them as they work with him.  Hopefully they will find the patience (also called long-suffering, which I understand now) that can be shared and beneficial to all of their future students.  Hopefully they will see the diamond in the rough, and be able to nurture and teach him and his classmates.  I would love to say that week two has been great, and while I definitely feel better about it than week 1, there is a learning curve--both for him and for them--that is undetermined at this time.  I will keep praying, keep communicating, and keep working with him (and them) to help there be more consistency between home and school, so that he can learn faster.  He is a resilient little boy, and I want him to grow and shine.  I do not want to see his spirit broken like my sister's and my brother's were at such a young age.  His spirit can shine, and I have to both protect him AND give these teachers the benefit of the doubt, that 20 years CAN make a difference, and that they now know how to build children up into the students they want to see, rather than tear them down so they submit to what they are told.  Good old Harry Chapin's song, which has the following two lines (in different parts of the song) ..."Flowers are Red, green leaves are green, there's no need to see flowers any other way than the way they always have been seen....{story here}....There are so many colors in the rainbow, so many colors in the rising sun, so many colors in the flowers, and I see every one....".  I just keep praying that these teachers see the rainbow and teach the children to see the rainbow, rather than insisting on red flowers in neat rows....

Well, enough about fears, both new and based on really old crap that I did not even realize was hanging out in my subconscious memory...on to a more pleasant note.  I have found a steady source of income that allows me to be there when I need to for my kids and has some flexibility built in.  I am doing child care again.  As per NYS law, I can only have 2 kids (other than my own) in my home with the legally exempt approval I have.  To take more children I will have to go through the process of becoming a registered daycare provider.  This is something I have thought of doing for a long time now, especially since I WAS a daycare worker and nursery school teacher in CT for 5 years in the 1990's.  So I DO know what it i is like to care for multiple small children, and I actually do love it (thought it is exhausting).  So I called the Childcare network today and am getting the ball rolling (takes 2-6 months to get licenced).  My apartment is really rather small, and with my two and the two I am watching now, it is rather crowded.  I did talk to my landlord today about it, and he has some concerns but is quite willing to work with me on it.  He and I are both concerned about the neighbors who rents the other half of the duplex, an elderly couple who may not like having multiple kids around.  Which would be a problem.  I did tell the landlord that I am also considering finding a larger place, a single family home, which would allow me to set up and provide a better space for a daycare.  He does not have anything available and thanked me for letting him know that I may be moving.  Overall, he was very supportive either way, which is good.  With the two I have now, I have the 2 year old 27 hours a week and the 6 year old after school for a total of 10 hours a week.  I make about $100 (I know, it is really low, but around here, people really can NOT afford more).  So I figure that if I have 4 children over 25 hours a week, I can bring in about $300 a week, which will be enough to live on.  If I have time I can continue with the freelance writing (or just go back to free writing), and do little jobs on the side to have additional income.  That would be my best bet.  I have called on a 4 bedroom house that is for rent, and am waiting to hear back from the owner as to whether they would allow me to run a family home daycare in their rental (I would pay the liability and daycare insurance of course).  If they are willing and accept me as a tenant, then I will be able to get the business up and running faster, which would be good. 

So if anyone wants to send up some prayers, please do so, for Josiah's kindergarten to work out well all around, for Gonzo to continue to do well in his schoool setting, for me to be able to let go, for provision for my family (I would be grateful if you can donate even a quarter or a dollar to my family's basic needs if you wish by clicking on the box at the top of the right hand column), prayers for finding the right space for us to live and run this daycare center, and prayers that everything falls into place as it should.