Amazon Shipping

Sunday, October 9, 2011

100th post!..Finally...

Okay, so....

Life has been a bit crazy lately.  And not having good access to a good computer  makes it difficult to post.  My good laptop is done with repairs and on its way back finally (it had to be sent back to the manufacturer).  By next week sometime it should be back with me, and I should be back to posting more often. 

So a quick post now and

well, I have to go quicker than I thought I will post more later if I can get this coputer to work again later....

Wednesday, September 21, 2011

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....

Wednesday, September 14, 2011

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 1st 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.


Friday, September 9, 2011

What a week!

Well, the first week of school has been interesting.  Gonzalo is doing very well so far.  I have noticed as the summer went on (both while he was in summer school and during our weeks at home afterwards) that he seems to have gained some maturity and is gaining an understanding of the fact that to make friends he has to treat his peers with more respect.  At school so far he has had a really good week.  He has also discovered reading for pleasure, which is something I have been trying to cultivate for him, as I know how great it can be to enjoy, learn from, and lose yourself in books, especially as a stress control method.  I am looking forward to him being in the same classroom with teachers who know him well, know his triggers, know the signs that he is heading for trouble, and know how to work with him to help him keep himself under control so that he can enjoy life, enjoy school, learn, and move forward.  His teachers care, and that is vital to him being able to be successful and grow in positive directions.

Josiah has had a rough start to Kindergarten, as I mentioned in my previous post.  I have had a rough week too, because I know knee-jerk reactions will not help anything, and keeping my head about me when I feel things are not being done in the best way for him.  He is my baby after all.  We had the same types of issues when Gonz went to kindergarten.  Children with special needs present issues in a variety of areas for a variety of reason, not just their primary area of development that dominates their special needs.  And even teachers with some experience with children with special needs have to take time to learn about and adjust to a new child, even if they have had similar children before.  As Kindergarten marks the year when a child goes from the child-centric, super supportive of the individual environment of a special needs preschool (like both Gonzo and Josiah had for their 3-5 year old ages), it is a shock to enter mainstream (or in G's case integrated) public school kindergarten, where it is class-centric, group focused, not focused on how to best educate and support each individual child.  So he needs time to learn how to be an individual that is the member of a group.  The great learned institutionalism that dominates our modern society.  It has its place, but it also alienates people who are amazing, intelligent people, who just do not conform well to the expected tacit rules.  Josiah will adjust, he has a personality that really does want to fit in.  I think it will get easier for him as he gets used to how things work, and I hope that the daily communication between the school and myself will make it easier for them to learn how to help him, and for him to learn how to help himself. 

Starting school each year, especially when the kids are changing schools or dealing with new people who have expectations that the kids need to adjust to, brings me back to my wondering how to help the kids find the balance between being part of a group (institutionalism) and staying true to who they are (individualism).  I have trouble striking the balance sometimes, though am normally successful at it.  My basic core values and the basic expectations of this culture have a lot of overlap, so it is not so difficult.  My father has trouble conforming and fitting in, not so much with the general culture, as he is shining, happy, and in his element when surrounded by college professors, graduate students, and other people of intellectual focus (like when he used to be in groups of my old friends or when he goes and visits my sister -- who is a college professor now).  He more has trouble with this small town, isolated, rural culture that does not have much int he way of intellectual stimulation or philosophical discussion.  So he is fairly reclusive, spending most of his time doing his own things, socially visiting with his few friends who ARE more intellectual in their focus, and reading.  I have been back for two years and have really not established any friends here.  For the same reasons, and for the additional reason of the fact that raising two kids with special needs makes it difficult to cultivate new relationships with people.    How do I help the kids stay secure in themselves, knowing how amazing they are and how incredible they are now and how incredible they can be as they grow and learn, AND help them to find ways to fit in, to look to their peers to learn how to behave in a way that is acceptable to the group mentality, to grow in ways that are respectful to others and seen as respectable as well?  Often, i go back to our ideas of starting our own school, that takes them child-centric focus of the preschools for special needs kids, and implements it in a K-12 school open to ALL children where the gifted and talented and the "regular kids" and the kids with special needs ALL get individual education plans, and can grow and learn together without the regimented institutional quality of the public school system....I need to find a philanthropic investor......

Wednesday, September 7, 2011

School Began...

Josiah's first day at scholl was, well, difficult.  Indian Lake does this great first day celebration thing for the first couple of hours.  Not so great for kids with special needs, but a great community buiiding, all school, VERY activity packed morning that parents and community can attend as well.  Poor Josiah was totaly exhausted and overwhelmed when I left at 10:30, which is when the classes enter a more normal kind of routine.  He had a couple of complete meltdowns in the afternoon--He was exhausted (mentally and physically) by all the comotion of the morning (he is used to a calmer, single room (they did everything, even meals, in their room at Prospect), more protected environment).  He was overwhelmed.  And I really should have arranged for him to start with a half day.  He did like school, but by the time he got home he had circles under his eyes--and he had gotten 11 hours of sleep the night before!  Today is a more normal routine, and should be more to his pace of life (though I am not sure, I sometimes forget how slowly we take life in a house with two children with extra needs--though I also perfer the slower pace of life where you can actually ENJOY and savor experiences, like father like daughter I suppose). 

I really do think that if he can get use to the pace, he will flourish. He will enjoy being able to go to various specials outside of the room, but the school is not handicap accessible (weird in this day and age, I know) and has stairs everywhere, so he is having a lot of challenges (which is good in many ways, but tiring), but can not use his wheel chair if he gets tired because there are no ramps or elevators. He is doing great with his walker, and is working on using stairs, though I wish he were a little further along with that, but you take life as it comes, he will master stairs with assistance soon, and maybe move on to stairs unassisted at some point in the future. As much as I would like him to be able to take adavantage of the wonderful small class size (7 kids in a public mainstream Kindergarten with his academic focus), and the fact that this school truly values each student as an individual and I have seen how much they try to do all they can for each child to help them and thier class as a whole be successful, I am beginning to doubt my decision about not moving to a more handicap accessible school district. 

I am going to give it a couple of months and see how things work out for him, as I really do think that, oddly, Indian Lake can offer him the best chance to be embraced by a community of his peers, challenge him to rise above his disabilties, really help him gain confidence (not that he really lacks it now) and support his academic, social, and cognitive development.   Hopefully he will be able to adjust to the environment, and just as importantly, they to him.  Some people still try to make round pegs out of kids, and to do so, you lose over 40 % of the non round peg kids--the ones who can't be forcibly jammed into the round holes. MAybe he can change the round pegs a biut and give them more freedom. It is great for the other kids to be able to gain the knowledge now that people are people, regardless of abilities, skin tone, or background.  So many studies have shown that typical kids who are educated with non-typical peers, are more compassionate, more understanding, more tolerant, and more successful in their adult careers, as it broadens their minds to have friends who are different than they are.

On another note, aside from a slight miscommunication in the timing of Gonzo's bus pickup, Gonzo seemed to have had a fine first day of school.  I am hoping tha having him have teh same classmates, teachers, room, and routine that the had last year, will really help him keep his behavior more well contained, and will encourage him to progress more academically and find great pleasure in his acheivements.  That is my hope for Gonz for this year.

Saturday, September 3, 2011

The fair, school shopping, and tax returns

Wow!  It has been over a week since I last posted.  I think this is the longest I have gone since starting this blog.  Okay so, the fair was GREAT!!  I had the most fun at the fair that I have had in years.  The kids were interested in so many things, which was great, and my sister and her two kids were with us for most of the rides so that G could go on some rides that J was too small for, and my sister's daughter and J could go on some smaller rides.  The kids also really enjoyed the shows (jugglers, magic, and puppet) for the first time, really paying attention to them.  And as always the animals were great.  This year J even reached out to pet some of the goats and sheep (previously he was too scared of them to touch them), and they asked all sorts of good questions, especially Jos.  It is amazing how much the difference between age 4 and age 5 is in that regard, he really has developed such a wonderful and genuine curiosity about the world and what he encounters, and is not shy at all about asking questions.  I actually budgeted correctly for the fair, brought a jug of coolade for the kids and prefilled water bottles for me, so that we did not spend stupid money on beverages which are horrible overpriced.  We had fun eating some traditional fair food, and had a set budget for games (and I carefully led them to games that they win a nice prize every time for about half of the ones they played).  And they are getting big enough to ride some of the rides I used to love as a kid, which was great to watch them enjoy them.  So, the fair was GREAT even with a drenching downpour we got caught in that required a full change of clothes and the purchase of some disposable rain ponchos (so that we did not have to do another clothes change as it was rainy much of the day).

Then this week we have been getting ready for school which starts next week.  We finished off the Dr. appointments with a trip for J to the Pulmonary doc and then the next day a trip to the dentist.  Both kids have freshly cleaned and polished teeth to start school.  AND Jos FINALLY has a date for his dental surgery (a project we have been working on...long story...since last July).  So September 22nd he will go in for dental restoration surgery and finally get his teeth fixed!!  I am glad it is finally getting done, I am NOT however, looking forward to anesthesia.  But, he will be okay, just his lung issue make me very nervous with the anesthesia.  But anyway aside from a couple of harder to find items (like new socks for under Jo's AFO braces), we are all set for the start of school on Tuesday.  Gonz will be in the same self contained classroom out of district this year as he was last year, he is technically in third grade, and does grade level or above work for most subjects, but need the extreme structure to contain him so that he can focus and be successful.  He is in a classroom that covers grade 2-5.  And he will have most of the same teachers and assistants as last year (most of the same kids too).  His only change will be a different one to one.  So I am looking forward to a better school year fro him this year as they already know him--his strengths and weaknesses, his cues for when he is nearing a loss of self control, and they know what works to help him maintain composure and also how to handle things in a positive and firm way when he dos push over the limits.    His big change will be that he will be riding a bus or van down instead of having me drive him.  But he will be the only one who goes at that time, so the peer-peer problems on the bus will not be an issue.  Jos is starting main stream Kindergarten, which will be good for him but will be quite a change.

On one more note, a huge weight has been lifted from my shoulders, after months of waiting and dealing with an IRS audit, I have finally gotten my income tax return and just in the nick of time.  Now I can pay rent a head a couple of months, get my heat paid ahead, and be ready for winter.  So if my freelance writing income is not quite up to par yet, I have a bit of a time cushion to continue finding some more sources of income to make ends meet.

Thank you God for providing exactly when I need it.

Wednesday, August 24, 2011

A quick hello...Going to the FAIR

Just a quick hello, as I have not posted in a week or so, which is odd for me.  But the kids are not in school right now, which is a major change from our normal routine.  Summer school ended August 12th so we have been cramming in a bunch of doctor appointments between summer school and the start of the regular school year on September 6th.  Tomorrow, though, is one of my favorite days of the entire year, and has been even since I was a little kids.  Tomorrow is FAIR DAY!!!  Since before I was born, our family has gone to the Washington County Fair on Thursday which is Children's day.  We still meet up with my cousins and their kids, and we experience all the joys of the agricultural fair.  Though I do not live in Washington County but it is still the fair we have always gone to.  I did miss probably 7 out of my 37 years (I went as a baby before I was 1 and as I will be 37 in October, that makes 37 years of fair going counting tomorrow).  It is not always easy when I was living out of state or if my college classes started prior to the fair date.  But the past few years I have been able to take the kids to the fair and enjoy watching them share in this family tradition.  Maybe someday we will have chickens or rabbits or sheep that we can actually show at the fair, when we get tot he point that we have a farm of our own. 

So, I feel a bit like a kid again as I am getting ready for the fair tomorrow. I have figured out a way to carry J's walker on his stroller so that can switch back and forth between the two easily.  This will be the first year we take his walker as previously he has not been very adept at using it, but now he truly walks with it, so it should be fun for him. I will have to take pics to post them.  Cows, chickens, rabbits, sheep, goats, piggies, turkeys, geese, ducks, chickens, chickens, chickens (not much has changed my favorite building at the fair is the poultry and rabbit house, where they have the most amazing display of rabbits, geese, turkeys, ducks and....you guessed it...CHICKENS!!!!  I love chickens.  I have actually been working on repairing the old coop at my dad's house and getting a little brooder ready.  I may not be able to have chickens at home (as I rent an apartment) but I CAN have them at my dad's house.  So I have the stuff ready and am going to see if anyone is selling chicks at the fair.  If not I will mail order some with my next check.  Anyway, I am so excited about chickens, AND I am packing ear plugs for the kids as both of them have sensory issues with sound and the poultry house is LOUD, as well as the loud midway....The Fair....we're going to the fair....:)

Thursday, August 18, 2011

Blood draws, X-rays, and brethalyzers...oh my!

So today was Gonzo's appointment with the endocrinologist.  I had forewarned him that he may have to have blood taken for testing.  his response was "all of it?!?!  How will I stand up!?!" to which I assured him that they only take a little bit and that his body will be able to make more.  So he was a little freaked out going into the appointment.  The endocrinologist was very personable, and if we end up needing to continue with her, I think it will be a good match.  Having doctors that you feel comfortable is imperative to proper health care.  I am hoping all of the tests come out fine and we don't have any more treatment needed, but at least it is good to know that you like the specialist.  So after the appointment, the doctor felt that testing was warranted, so Gonz DID have to have his blood drawn and she wanted an bone age density test done, which is an x-ray.  So as usually, anything having to do with needles is difficult for Gonz, so it was myself plus two nurses who needed to hang on to him and get the blood draw.  Poor little guy was just in such a panic.  But he is a trooper and came out okay.  He was still asking if his body will make more blood, and I reassured him that it was already making more to replace the little bit they took to test. 

After the blood draw, we went down to the radiology department, and had a quick x-ray of his hand.  He was still so upset from the blood testing that he could not remember his birthday when asked, and he asked me for help with it.  I love this boy so much, and my heart just goes out to him when he gets himself in such a high anxiety state.  It was an uneventful x-ray and we headed out to pick up Jos and go home (Jos was at my sister's house being watched by my two nieces with his other two cousins).  We were going to stop for lunch right away, but Gonz was so overwhelmed that by the time we got out of the hospital parking lot and on the right road, he was fast asleep. 

So I hopped on the highway and we stopped about an hour later when we were closer to home and had lunch at Friendly's--his favorite spot.  After lunch we drove the next 45 minutes and picked up Jos.  We did hang out for a bit with the cousins, but needed to get home to make dinner. Jos appeared to have fun with his cousins, though he did through one of his fits and scratched them when it was time to stop doing something he did not want to stop doing--when do they outgrow this tantrum phase?!?

Anyway, we got home, I put chicken in the oven, Jos took a short nap, and Gonz and I played and chatted for a bit.  I ran a couple of loads of laundry through, and packed up my broken computer to send to my friend who lives near the place that can repair it.  Then A came over after getting back from work.  And A had a ticket for no seat belt.  A proceeded to tell me it could have been a lot worse, as the cop asked "have you been drinking?" and asked about open containers (as in open alcohol containers).  A says it was because there was a bag of empty beer can on the passenger side floor that needed to be returned, but I am not buying it.  A's inspection is also way out of date and A has a tail light out.  So, yes it could have been worse (depending how you look at it).  A said the cop did do a breathalyzer test, which A passed.  And the cop only issues a ticket for lack of seat belt.  But my question is multi fold--why are there multiple containers (empty beer cans) enough to fill up three bags on the passenger seat and floor?  Why would the cop question A about drinking unless A's breath smelled like alcohol? and why would the cop run a breathalyzer if all the empties were at least 2 weeks old (when A claims to have stopped drinking).  Of course I did not voice all of this, as I am trying so hard to be supportive of A's new start to life.

But I am going out of my skull with A.  Both last night and tonight, we were talking along, and A said something that annoyed me, so I responded in an annoyed way.  And A launched into an all out bitch fest about how I am always implying that I am smarter or better, and that A is an idiot.  About how mean and rude I am and how A was in a good mood until coming to my house.  (which I have to say both evenings I was in a very good mood before A arrived as well).  And the tirade continued and continued.  Last night I got sucked into it and we argued for a while about NOTHING.  I apologised both evenings for hurting A's feelings and tried to explain that I was in no way saying that A was an idiot, I just did not agree with what A said.  Tonight I apologised for hurting A's feelings and tried for a few moments to explain why I was exasperated, but it was no use.  Once A gets mad, there is no turning it around.  Even if I accept the full blame and accept what A is saying about me and how what I said brought out bad feelings, A still won't stop.  A kept going on and on about how "for 7 years you have talked down to me and treated me like an idiot" and how "I am not going to take it anymore, what you say is abusive, just abusive".  Especially when I ask A to consider how much I have bent over backwards to be supportive and helpful and how much of an enabler I have turned out to be.  To which of course A starts in about how I have to rub that in, about how me and my family "came to the rescue" and how we "have had to help poor A"  and how horrible we are for it.  I am sick of it.

The way it started tonight was this:  A asked how a friend of mine was doing that is going through the end of a 15 year marriage.  And I had said that all in all my friend was doing okay, moving forward, and putting life back together.  A's response was "how can she be OKAY in just 6 weeks after 15 years of marriage?!?!" in a really snotty voice.  So I responded in my own snotty and exasperated voice "What the heck to  think okay means A?!?  She is doing okay for the circumstances!"  To which A replied "I am not even going to respond to that again, that put down.  You are NOT calling me stupid again tonight.  I am not going to respond."  and then for the next 45 minutes continued to harangue me about how I am always saying mean things and ruining a perfectly good evening, and all sorts of other crap.  (I know, I am whining and repeating myself--but that is how my last two evenings have gone.)  Tonight I tried to talk it through and accept blame and apologise if what I said and how I said it were upsetting.  But on and on it came, and that's when I mentioned that I have been trying to be supportive and helpful which did not jive with what A was saying, but that just made things worse.  I asked A to leave if it was so hard, and A refused.  So I ddisengaged myself from the insanity and started doing the dishes.  I told A that I was not going to discuss things like this in front of the kids.  IT upsets them as  much as it upsets us.  We were not yelling at each other or anything, or even talking in raised voices, but you can feel the tension in the air and kids are bright and know that we are not happy with each other. And we were obviously not saying "nice" things to each other.

Finally A decided that by ignoring or barely entering the "conversation" that this was being abusive as well, and finally A left, after giving the kids a hug and kiss and telling them that it was my fault and on me that this argument started.  I sat down with the kids and apologized again for their parents arguing, and not treating each other with respect.  I made THEM the promise that I would try harder to not say things that might upset or accidentally hurt A's feelings.  We chilled out snuggled in the chair together watching the iron man cartoon, and they relaxed and started being chatty again after about 10 minutes.  Then we got ready for bed, and they had some trouble falling asleep, but in the end it was alright.  I need A out of my house.  I need A to find an apartment, move out of my father's home, and stop "living" at my house (A sleeps at my father's but does everything else here --showers, leaves dirty clothes int eh hamper for stupid me to wash and fold, eats meals here, uses the phone here, checks email and other computer stuff here, is here whether I am or not, is here whether the kids are or not--essentially lives here).   I am to the point of feeling like if I never saw A's face again, it would be too soon.  I am praying for a miracle, praying for relief, praying that God will do something with this situation.  Short of calling the police when A refuses to leave or calling the courts and telling them that A is still drinking and has no place to take the kids when it is visitation time and so is ALWAYS at my house, I am not sure what to do. I am afraid of how going back to court would impact the kids, as it can be so stressful. I am blatantly honest about how I feel about a lot of things, which A then says is abusive.  I am not beating around the bush.  And I am such a push around that I would rather do things like wash clothes and deal with A's crap then be told I am a horrible person.  But this situation is making me BECOME a horrible person.  I don't even know myself anymore, and to think, this time last year I was finally getting to know myself again.  I wish A had never moved back up here in January.  Those 7 months without A (even though I met half way with the boys every other weekend (when A could take them, so not as often) and talked to A on the phone almost every night when A called to say hi to the boys), I was able to breathe.  I want to be able to breathe again..

The entrapment of alcoholism does not just enslave the alcoholic, it ensnares everyone who cares about the alcoholic and holds them prisoner, until, like the alcoholic, they can find a way to let go and walk away from those tangled vines.  I feel like I am still in the thick of the vines, and to get out maybe I have to do the one thing that will take the last part of the gentle, kind person I used to be away.  Maybe I need to hack the vines off, hurting the plant from which they spring.  But would I still be me if I did that?  Why is it that the idea of hurting A by pulling the plug and not helping makes me feel like I would lose the last shred of the me I used to be--the me that was gentle and kind, loving and compassionate, the good person that A fell in love with.  I feel like taking that last step to destroy the tangle of vines around me would not only destroy the one from which they emanate but would also destroy the last part of me worth saving?  What good would I be to my children if I no longer had that last bit of core kindness and gentleness towards their other parent?  What kind of example would that be setting for them?  And what kind of example am I setting for them now?  In some ways I am angry at God right now for NOT having that cop today give A a ticket for drinking while driving--not the intoxication ticket as obviously A passed the breathalyzer, but the open container, and such, something to give A the kick in the pants needed to take REAL steps towards recovery.  But it is never that easy is it....

Tuesday, August 16, 2011

Summer Break...Finally

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

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

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

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

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

Tuesday, August 9, 2011

Interesting thinking and planning

Josiah was so excited about his birthday.  He is such an amazing little guy.  He is happy to be five years old, he is a big boy now! 

It has been an interesting couple of days aside from his birthday.  A was over (nothing new there, I really hope this job works out and A gets an apartment, and I can have my life back a little more).  A talked to the "first love" from high school.  That first love, who broke A's heart 30 years ago, talked with A about some of the issues that she dealt with back then.  And A finally gets why I say that when I drinks, i makes me fearful.  Finally someone else confirmed to A that A DOES throw things in my direction when angry (which I have told A many times and A has denied doing).  A finally is accepting that aggression, anger, and then depression are trademarks of what happens when A drinks.  A's first love is recently in recovery and was encouraging A to get into recovery.  A is down to 4 beers a day in an effort to quit drinking before the new job starts next week, which is a good idea.  The joys of detox are not fun, so I have a feeling A will be grumpy (and shaky) the next few days.  This is the third day of only 4 beers, and A was not shaking last night.  Now to drop down to 2-3 beers a day for a couple of days, and so on.  So hopefully A will be successful in moving forward.  A is excited about this prospect and so am I.  I know that A can do it, and can make choices that will lead to a good, healthy life.  A just needs to believe it, and to have the self worth to accept it.

Speaking of healthy lives, I have been doing what I do best--studying and researching (yes with some documentaries like "Fat Head" and books and research papers) a wide array of ideas and perspectives on health (implementing knowledge is my problem, I have a great deal of ability to amass knowledge, its the actual using of that knowledge that I seem to be slow on).  Anyway,  I have been compiling a list of things that I would like to implement for MY life to increase my overall health, most of which I have been working on transiting to, though keeping specific activities up for a long enough period to truly replace bad habits with good has been a challenge, as it is so easy to slip back into bad, long standing habits.  But I have been returning again and again to new habits, and each day, it is a little easier, and I know that each time I make a good choice rather than a bad choice, my life is moving in a good direction, a positive direction.

So these are my goals (rules) to live by for a healthier, better life (assumes 4 meals/day B, L, D, S=28m/w):
-Eat 2000 calories a day or less
-Eat 120 grams of carbohydrate or less per day (as per diabetes educator rec), at least 1/4 of which from fresh veggies
-Eat 35 grams of fiber or more a day
-Eat 150 grams of protein or more per day (at least 1/4 from vegetable protein)
-Eat 90 grams of fat or more per day (at least 10g of saturated veg fat (yes saturated, yes from plants))
-Eat at least 3 grams of Spirulina per day (max 20 grams)
-Eat at least 2 servings of Leafy Greens per day (can be in a smoothie)
-Eat Legumes at least 5 meals a week
-Eat Fish at least 3 meals a week
-Eat Oatmeal at least 5 meals a week
-Eat Eggs at least 3 meals a week
-Reduce sugar intake to less than 30 grams/day (incl. table sugar, candy, and sugars IN foods)
-Reduce ALL commercially processed foods to less than 3 meals a week (incl. RTE cereal, box food, sausage and other processed meats, etc...)
-Walk at least 1 mile per day at least 5 days per week
-Add in Strength or tension training for muscles 3 times a week
-Meditate and/or pray for 20 or more minutes a day (can be broken down into 5 min segments)
-6 "Free Pass" days a year where anything, any food, any calories, anything goes...

Sunday, August 7, 2011

My baby is 5 tomorrow--8/8

Today we had a family birthday party for Josiah at my mom's house, with my most of my family.  Josiah was in his glory, he loves birthdays and he loves to be the center of attention, so for him it was like heaven.  He wanted a fish cake, so I did my best to make a cake shaped like a fish.  It came out alright, not great, but it was definitely a fish, and he was happy.  My mom has pics on her camera and I will post them when she emails them to me. 

I was not there the day he was born, and his arrival was not heralded with fanfare and joy.  His birth was very early and traumatic, and was to an overwhelmed young mother who already had 5 boys at the age of 25, who had sought to abort him just two short weeks before only to be told she was too far along.  He had so many issues with his early birth, and so few supports and so few people looking out for him. He was born at 28 weeks, 12 weeks too early and had many, many complications.  My sister had twins at 30 weeks, who had a large family there to love and support them, visit them, pray for them, hold them, love them....Josiah had no one but the hospital staff.  His mother signed him over to the adoption agency right away, and the social worker visited him once when the papers were signed, and entrusted his care to the hospital.  I just think about how difficult life was for the twins during that early time, when life and earth were so close to each other in such a young little body, and how they had the energy of love and family as well as the support of the hospital to help them through.  And they had many fewer issues than Josiah did (they are 13years old now and both amazing kids, with no complications (aside from my niece's eye problem with one eye that has done what Josiah's eye is doing). 

I look at this amazing little boy, and realize how absolutely blessed I am to have become his parent.  He is my joy, my heart beat, my purpose....I sometimes feel like I was entrusted with one of the greatest gifts that God has ever put on this earth when I look at this child, and God trusted ME enough to take responsibility for protecting him, teaching him, raising him....Does everyone feel that way about their child?  This old soul in a broken body with a tremendous spirit was entrusted to me, and he has become my purpose for being.  So many days I feel like God created me specifically for this--to bring this gift up into adulthood, to guard and protect him, to love and cherish him, and to help him find his way.  There are many other things I had done in my life and many things I will do after Josiah is grown, but I fell in my heart of hearts, that this boy is one of my primary purposes for existing. 

I haven't shared that with many people, mainly because I think some would come running with the white coats and calling for padded rooms.  Other would think I was just plain nuts (rather  than of the padded room variety nuts), and still others may think I am over dramatic, or putting too much emphasis on my son, or thinking too much of myself, or whatever.  So normally I keep these thoughts to myself, but today, I decided to share them, and share them publicly no less.  Because I am so proud that my son is 5 years old tomorrow.  In a few months we will celebrate the first time I met him as a tiny baby ready to be released from the hospital after 2 1/2 months, then I will remember the absolute hell and terror those first few months with him, and all of the amazing people that showed their love and support, including my dear friend and Reverend Jacquie, who drove an hour and a half to the hospital to baptize him in the middle of the night when we were not sure he would make it through the night (about 10 days after he came home), and my mother and Jim, and A's mother and sister who all came that same night each driving over 3 hours through the middle of the night to be there with us.

But little man is going to be five tomorrow, and what an amazing boy he is....
(my niece Savanna took this pic of him tonight at my mom's house.  It is a silly picture and I love his one eyebrow raised looked...)

Saturday, August 6, 2011

Asking again for prayers for two special kids...



I am reposting an old post from March or April about both Micheal and Haven, as I am still praying for them and ask you to join me. 
I have been assigned as their Prayer Warrior through Reece's Rainbow.  So I am committed to praying for them until they have a committed family.  Please join in in sending your prayers and your good will out to them and to potential families who may be a good match for them.  And if you know anyone contemplating adoption, especially adoption of a child with special needs, please share Reeces Rainbow with them.  Even if they do not adopt a child listed there, the information, community, and connections with other parents adopting kids with special needs is incredible and a great Gift from God.
Here is Michael D.:

He is in Russia and he looks very well taken care of at the orphanage.  Please pray that he is adopted before he is transferred to an institution as he is 5 years old, where in Russia he will then be unadoptable.  If he has a committed family before (or very near) his 5th birthday, they can keep him at the orphanage while the necessary process is underway.  He is running out of time...
Info from RR: Michael D.
Date of Birth: June 2006
Gender: Male
Eyes: Gray
Hair: brown
Character: calm
And this is Haven, and her info from RR: 
"Girl, Born March 2006
Poor Haven……sweet little girl.   Such a pretty girl burdened with such medical and cognitive difficulties….and no mama to love her through them.
From her medical records:  celiac disease, CP, toxic Hepatitis, hypotrophy of III stage
From our team who visited there: Haven is afraid of strangers and would not interact with us :( "

I am not sure which country she is in, though most EE countries transfer to institutions at the age of 5.  It appears she is NOT in Russia, so even if she is transferred, it might still be possible for her to be adopted.  However, medical care at the institutions tend to be very poor, and often over 50% of kids transferred do not survive their first year.  With her medical issues, an institutional life will be a short one.  So pray that a family steps forward for her soon.


For those of you who do not know, Reece's Rainbow is an absolutely amazing organization that helps connect people seeking children with waiting children who have special needs.  It also helps raise funds for adoption for both waiting children and for families.  Additionally (this is the greatest of all) they are working in various countries to help establish supports and groups for people who WANT to keep their children.  It is truly an inspired and amazing group that is addressing the issues from multiple fronts. I have been following the founder since the very beginning of Reece's Rainbow back in 2005--before there was even a website.  Many children with special needs in foreign countries are institutionalized at a very young age for even minor special needs, and given no education, no chance to become active, functioning members of society.  Like the US used to do 30-40 years ago, until it was finally realized that people with special needs, given the right supports from early on, can often go on to live full, functional lives--have jobs, friends, and even families of their own.  By institutionalizing them, it takes away not only the life they could have, but also puts a high burden on the government to care for people, many of whom could care for themselves if they were taught to during their early years.  Or if they have families, the families and friends can and do help with care that is needed if the person can not care for themselves.   There is very little need for institutions, as even residence facilities provide a better quality of care and provide more opportunity for people with disabilities to experience life and contribute to the community by being part of it.  So, I advocate for the adoption of children with special needs (hence the two amazing little boogers I have (who in a foreign country would be institutionalized (well J with his medical issues would probably not have survived his first six months)).  And I advocate for as much inclusion as is possible for both children and adults with special needs (and I do mean possible, as my dear G is not able to function well in a mainstream inclusive classroom, and thus has less inclusion than I like, but only as it is necessary for his success and the success of those around him).  When my mother started working at the residences, she would always invite one of two of the residents to join us for BBQ's, holiday meals, etc...  They are people too, and can contribute to life (maybe in a different way than most are used to) and deserve to be treated with respect. 

Oh, and a note on why an International Downs Syndrome (and other special needs) Adoption group?  Why not focus on the USA?  Well, both of my kids ARE from the US, and I do pray for kids who are waiting in the US, as there is a high need EVERYWHERE for children without families to be adopted.  So I choose to advocate for both--I am not nationalistic in my desire to care for the orphans of the world, all people, no matter where they were born, deserve to know the love of a family (even when that family is not perfect (as long as it is not abusive), it is still better than not having one).  The first goal should be to keep familes together whenever possible (employing supports rather than punishments to fascilitate that), and when not possible, to get the child into a permanent family as soon a possible.  I have qualms about both the insititutional model of raising kids who for whatever reason are no longer with their familes, and I have issues with the way foster care and adoption are run in  our own country.  But I understand the necessity of both, and until other solutions are in place, they are the systems that we all must work with to ensure that families and children can find the safest and most potential supporting way to live.

Wednesday, August 3, 2011

Updated my other blog

Hi all,

I just wanted you to know I update my gratitude blog (the one on my website) today.  Both the website and the blog have been a bit neglected this summer, but as I posted there instead of here today, I thought I would let you all know.  That blog is specifically about the topic of gratitude, which is a big part of the Transformation journey.  So while this blog is more robust and covers all sort of things--both interesting and mundane, on a wide range of topics and thoughts that cross my mind, and is sometimes too personal (I know I probably need to filter a little better)--that blog focuses on the topic of daily gratitude (and I am moving towards making it a daily posting, but right now it is still posted to erratically).  I will be spending some time in the next month dealing with some glitches and trying to update my website to make it more useful and user friendly.  So it is a work in progress.

If you want to check out the Gratitude blog, click here: http://powerfulconsciousness.weebly.com/gratitude.html

If you just want to check out the website (which you can access from the blog too), click here:
http://powerfulconsciousness.weebly.com/

Tuesday, August 2, 2011

Forming habits....breaking habits

Well, so....

My son says that all the time "well, so...."  and I think I have mentioned this before, but I had wondered for a long time where he got it from.  Then one day I caught myself saying it and realized that I say it ALL THE TIME without even realizing it.  I have also realized that I type it often without realizing it.  I am not even sure I think about it in terms of context or anything else.  It is just something that I say unconsciously.  Funny the way the mind works....

Anyway, SO....Habits!

Habits are so much a part of life that we tend to not even think about them until we are trying about to change something in our lives.  Nearly everything we do in our basic, daily living routine is done by habit.  That nice repetitive way we make our choices and structure our day.  Even our interactions with our family, friends, and co-workers are based on habitual behavior and thought patterns.  From what we eat or drink to what time we leave for work (are you always running late too?--its habit), to what clothes we wear, when we call our mother, and what we think about the weather.

According to the ARDictionary.com HABIT is "Definition: The usual condition or state of a person or thing, either natural or acquired, regarded as something had, possessed, and firmly retained; as, a religious habit; his habit is morose; elms have a spreading habit; esp., physical temperament or constitution; as, a full habit of body. "

According to the World English Dictionary Habitat is "the environment in which an animal or plant lives or grows; and the place in which a person, group, class, etc... is normally found."


Habits, the unconscious patterns that give each of us our individual habitat....Because it is by our habits that we end up where we are usually found.

So, why all this talk about habits--well, as we all know losing weight (or any other major transformation) required we make changes in the way we do things--the way we eat, the way we use our body, the patterns of our sleeping, etc...  And for that change to truly be a lasting change and thus a transformation, it has to be a change in the habits of our thought patterns as well as our actions.  If you only change the actions but the underlying thought patterns have not changed, it will not last.  For example, if you want to lose weight and you go on, say the Atkins diet, doing low carb everything, follow the plan exactly as written and get down to your ideal weight, even if it takes many months.  Well that is a great accomplishment.  But if your underlying conscious and subconscious thought habits still think about food in the same way you did prior to starting the Atkins, you are going to eventually move back into your old eating patterns (say you still believe, even after Atkins, that you need a particular amount of grains in your regular diet as depicted by the food pyramid) then you will move back into eating a more habitual, grain heavy diet and slowly build back into the same situation you were in, or find yourself battling against the return of the weight instead of enjoying your new, healthier body with new habits and new habitual ways of thinking.  It is why "dieting" is only marginally successful.  You see it all the time, people lose the weight on this diet or that diet, only to gain it back a few months or years later.  I think the major reason for this is NOT that the person had no will power or what have you, but rather that the basic underlying habits in thought did not change while the conscious actions of the body were changing.

I find this in myself as I am trying to create new habits.  They say it takes 21 days to create a new habit, others say it takes doing something around 21 times over a 40 day period to create a habitual change in action.  I believe that it is possible that both of these are true.  There is something about that three week mark when doing something diffrent that it starts to really click and become part of you.  I remember a sermon at chapel in college once that talked about praying the same prayer (a 3-6 word, succinct prayer) every day for 30 days, and how you could literally see the steps that were making that prayer come true unfold before you.  It is the consistency of thought and focus that brings God's power and your awareness together so that you can open your eyes and see it.  It is the change in the habit of your thoughts and spirit that facilitate that.  The teaching in the Law of Attraction ideas are based on the observation that the more you focus on it, the more it comes into being for you.

So....I have found that after over 10 days of a vegetable, fruit, and algae smoothie a day (which I loved), I had a couple of days where I got up late and did not have time to make it, and low and behold I have dropped right back into my old habit which does not include a morning smoothie.  Even though I LOVED the smoothie and have on occasion made one in the afternoon, that habit I had started building of getting up early and making a fresh green smoothie to take on the road with me has not become a habit.  So I need to get into the commitment and motivate myself to overcome the habitual patterns that make me NOT get up and make a smoothie in the morning.  This transition time is a time which requires persistence, motivation, and the brute force effort of will power to overcome those ingrained habits and replace them with habits that I WANT for my life...both externally and internally.

The smoothies is just one example, but my other eating habit changes are definitely still in a great deal of flux and I find it easy to slip back into old patterns rather than push forward in forging new ones. So it is time to redouble my efforts.  What I really realize though is how much our HABITS dictate what our eventual HABITAT becomes. 

So often I have heard people say "i don't know how my life got to where it is today."  Sometimes they have a great life and are looking at it in awe going "how'd I get here?!"  and it is a sense of wondering and joy.  More often though, a person is looking at crap in their lives and where they have ended up and is wondering the same question "how'd I get here?!?" 

Baring major natural disasters (earthquakes, floods, volcanic eruptions, government screw ups...) or sudden traumatic personal/familial events (war, sudden death, fast developing medical conditions, arrival of a child with special needs, major accident with serious injury, house fire, running out of checks....), most people, if we are really honest with ourselves, can look at what our habits are and see how they led us to the habitat we find ourselves in.  Whether we meant to end up there or not and whether or not we were aware of how our own actions and ideas brought about subtle changes in our lives which led to where we are today, very often we find ourselves where we are because of unconscious habits of thought and action.  For example, if I am always thinking about how a particular person is going to impact my life, and keep expecting that this is what is going to happen when I see this person, stressing about it and focusing on it, that is what will happen, in part because I react to that person as though it has already happened. This perpetuates a reaction from them that validates my original thinking, which makes me react in a predictable manner, which in turn brings more of what i did NOT want, but because I focused on it and reacted to life in a way that would make it real, it then became real. 

I am in debt far higher than I can pay right now.  And you could say that it happened because of J's medical issues and the issues with his insurance during the first few months he was with us, and that would, in part be true.  There were a LOT of medical bills that we were not prepared for and there was a major paperwork snafu which lead to him not getting the secondary insurance he should have had from the get go, that he didn't get until 5 months later.  Thus leaving a lot of unpaid medical bills in the meantime.  And the fact that his issues and needs really required one of us to be home with him full time (after we tried a handful of other options, so it was a good 7 months after he arrived before I resigned from my job).  So the loss of income combined with the medical bills could fall under the acceptable "out of my hands/control" situation.  Except for the fact that a good deal of the debt I am dealing with was incurred prior to his arrival.  Yes it was incurred at a time when we had the income level that could make the payments and everything, but it was that whole "living the American dream" on credit as so many of us do.  So when disaster DID strike in the form of Josiah (whom is a bomb I would welcome at any time and place and do all over again even though the next year and a half were a blurry hell filled with pockets of intense joy and light.  He is my bomb that became a balm.) it landed on a lot of ammunition creating a bigger impact.

It was not Josiah's medical and paperwork issues that created the primary debt problem I am still dealing with.  It was not even leaving my job that created it.  It was the fact that we had been living on the economic edge prior to his surprising arrival in our lives, with our credit near the max and
 having depleted our savings and resources on two adoptions (Rustam who never came home, and Gonzo's whose legal battle gave us the second mortgage on the house), we were unable to handle such an impact on our lives.  BUT we were unaware of that at the time, and continued in our habits.  If things had gone just a little different, the impact would have been different.  If J's paperwork had been in order, he would have had secondary insurance from the get go and those first three months of emergency room runs, major brain surgery, and long stays in the ICU would have been covered.  If A had not resigned two weeks into J's hospital stays (without discussing it with me), our income might have been more stable some issues might not have  occurred.  If we had found a nanny capable of handling J and G's issues (like a nurse or something) things might have been different.  IF......if.......if.......

But it was our habitual thought patterns--X has to happen, Y is the way things should be, Z is how you  handle ABC, and if you need more money, just borrow it, we can always pay it back later when things calm down.......(famous last thoughts.....)

My life is the way it is in so many areas because of the way that my habits and my conscious and subconscious thought patterns and beliefs have been.  Yes, things happen in life we have no or very little control over, but we DO have control over how we react, and if we are not working very hard on changing our lives to be better, we react out of habit, and keep bringing ourselves into the same habitat.  It is where we expect to be, and where others expect to find us.  our habits create our habitat.  To truly change our lives, to transform my life, to get into a new habitat, i need to change my habits at their core, that the subconscious and conscious levels of thought in addition to action....

It's a long road.....but a road none the less, and if I run out of road I can bushwhack a trail if I need to.  Transformation appears to be a slow process....