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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.

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