Wednesday, June 13, 2018

Mobile Home Park Life

Growing up, I imagined being a successful person, with a good job, a big house, a nice car, and travels that would take me all over the world.  I studied hard in school, got degrees, and then had a child with multiple disabilities.  My priorities changed, my financial situation changed, and we became a one income household, with my husband working hard so I could stay home and be available at all times for anything our children might need.  With help, we were able to move into a mobile home.  I struggled with feelings of failure and envy of others who had large houses, took expensive vacations, had all the latest gadgets for their kids, and what seemed to be a much easier life.  As time has gone on, I have reconnected to Jesus and trusted that He has me where I belong, doing what I'm supposed to do... that my vision of my life was not His vision for my life, and that this change was not failure, but just change.
Recently in church, the pastor spoke about how different the world of today is for children.  How children don't play outside, how they only have friends on the internet and have no personal relationships, how both parents often work and often leave children to raise themselves as latchkey kids.  It was then that I truly appreciated where we are.  Our houses are pretty close together...not as close as houses are in Queens where I grew up, but close enough for children to be able to arrange play organically by calling for one another.  We have a playground across the street.  We live with a dead end at the terminus of the park where the children love to play and can do so safely.  We are up against state land with fields, woods, and a creek.  This provides for plenty of exploration opportunities, more safe places to play, and interaction with all sorts of wildlife and nature.  Most houses have front porches where people sit and talk, and where the children play.  Most mothers are home, so when the children are home and playing, there is always someone with an eye on them.  In some ways, I suppose we're in a bit of a lost world where time has stood still.  People wave to one another while they drive by, stop to talk as they walk by, and parents know one another and one another's children.  I'm really grateful to be where we are, and am so glad that God knew exactly where we should be...where our children could thrive...where they could be children.

Watching a solar eclipse, playing in the pool, pretending to use a leaf blower, discovering a blue bird nest

Monday, September 4, 2017

Late Weigh In, Update

I am still on track for my one pound a week weight loss, which may sound pathetic, but I'm thrilled.  So I only have 109 lbs. to lose!  I just don't know how on earth we'd manage if I had to recover from weight loss surgery...DS takes so much time and attention.  So, for now, I'm doing it the old fashioned way.  My Fitness Pal and a Fit Bit.  Well, I guess that's not so old fashioned when you consider they both use technology!  It's still a matter of portion control, making healthy choices, and staying active.  
My 12 year old DS has been sick on and off for the past couple of weeks with GI issues that involve a lot of cleaning and changing all through the night.  So, I've been sort of tired, but it's all part of our life.  He's so excited to go to his new school.  He starts Wednesday.  I made up a story board with pictures of the things he did this summer.  They all are captioned with things he would say if he could.  So, he read it and approved it.  Then I showed him the note I wrote to his teacher with all the things he likes, and he approved that too with a couple of additions.  His nickname is Boo, and he likes to dress up as Fire Chief Boo, Dr. Boo, and Captain Boo Beard.  He added, "Arrrrrrrrrrr".  So I wrote that in.  He also wanted me to mention that he had a good time getting a hair cut with Daddy and that he sat nicely all by himself for the first time.  He can type and use an iPad for communication.  He uses a program called Proloquo2go, which along with the iPad was gifted to him by my mother and sister.  We are so grateful.  :)  We are pretty good at understanding his speech, although it is extremely difficult.  So, the iPad, Proloquo2go, and typing are a God send.

We went for his annual physical last week, and he failed his hearing screening, so he has to have a full audiological evaluation.  I'm excited about that, but I hope they don't find another problem we have to mitigate...the kid has enough problems already.  It will be fun so show DS and DD what I used to do when I was working.  
DS has not been sleeping either.  At least he hasn't been having tantrums, but he isn't exactly quiet.  He has trouble walking, so he stomps his way around.  He drops toys all over the place and drags toys into my bed.  He drags his Sodor Steamworks around, which is very loud.  He grabs our noses.  He dives on us.  He's very cute but very naughty.  Autism is famous for sleep disorders.  I'm hoping once he starts school he'll start sleeping again.  We're not really keeping a tight schedule. 
Well, it's late, so I really should try to get him quieted down.  Goodnight all!

Monday, August 28, 2017


I changed my weigh-in day from Monday to Saturday.  The very good thing about that is that if I go to a party over the weekend, I have a whole week to make up for any indulgences.  Yesterday I went to a lovely party where I found out that my nephew is having a baby girl and he proposed and is now engaged to his girl friend.  So, I'm very happy for them.  My niece made a delicious cake, and I had a piece.  I was bound and determined not to extend the celebration beyond the celebration, and I haven't.  I logged everything I ate at the party, and have been keeping pretty active.  I do need to go back to the gym.  I've been so bad about going.  My knees and hips hurt so badly.  My physical therapist husband is going to put together a rehab program for me so I can get them back.  Losing weight will most definitely help as well.  It's slow, slow, slow, but I'm still on track for losing a pound a week.  When I get my program, I'll post it here and I will do it.  My tracker from My Fitness Pal is so cute.  I've lost 16 lbs., so now I only have 110.4 pounds to lose.  Ugh, that's a big number. Well, it was 126.4.

Philippians 4:13 I can do all things through Christ who strengthens me.

Saturday, August 26, 2017

Contemplating Marie Ponsot and Teaching Writing Again

Marie Ponsot, just as I remember her, quiet and gentle. She is 96 now.

When I was in college, I taught writing.  I was supposed to be a team teacher with a professor, but both of her parents tragically passed away, so I taught the entire semester on my own.  I loved it.  The professor in charge of the team teachers was Marie Ponsot.  She was a wonderful teacher.  She was a teacher, a writer, and a poet.  I read her teacher's handbook and used the text.  It was a great way to teach writing because it gave the students the freedom to write without fear of failure.  By the time it was time to hand in an essay to be graded, they had already worked and reworked it in class, and really learned how to write an essay, so they did very well.
My daughter is in a home school co-op, and I'm going to be teaching some writing classes there.  I repurchased those books from a used book store since I couldn't find my own.  It's been so nice to revisit Professor Ponsot's writing again.  I've been going through the exercises myself as well to be sure I remember how to do everything.  Then I have to modify the program from a college level course to a middle school/high school level.  I'm also going to be working with the younger kids on creative writing.  I think what I'll do is have them compose the story with each child taking turns for each sentence.  I'll write them all down and have the children illustrate their sentences and then make it into a book that they wrote themselves.  For the middle schoolers, we'll work on a few different types of poetry so they have some structure to follow and then see that they can all write a poem.  We can go through an exercise to describe in word pictures where they are right then...what they see, feel, hear, and maybe I'll bring in something so they can describe a scent too.  If the weather is nice, we will do this outside.  The older kids will learn how to write and compose an essay.  I think I'll teach them how to write a sonnet as well since they will be able to understand rhythm and rhyme schemes.
I'd love to give them some passion for writing and the confidence that they can do it.

Marie Ponsot's "The Green Dark" contains a poem about a place where she just sat and noticed what was around her like I do with my daughter when sketching/writing.  It is a place that was meaningful for me while growing up in Queens.  "Jamaica Wild Life Center, Queens, NY" is where I went for many walks with my father and grandmother and later took my nephews...I still have yet to take my children there.  The other poems are wonderful too...raw and honest describing her experience at her mother's grave, the truth that God's plan of sex is tender, nothing like the distorted view presented in pornography, and in fact, common speech, and experiencing strained relationships between parents and children. She chose some of these poems, purposely I think, to present to her college level poetry class, to have us reevaluate ideas presented to us in the present age and in the arena of a liberal college.  What a joy it was to be taught poetry by its author, and someone so honest and good.

Jamaica Wild Life Center, Queens, NY
Marie Ponsot 

On a south wind the sea air off
the flats and inlets of Jamaica Bay
mirrors as they do,
almost wavelessly, space recast as
flatness, long
diminishings of blue
borne lightly in toward earth colors, steel-lit ochres,
rose-mucky brown, greens.

I am a window that takes this in
like a door, or mouth.
I spit nothing out. 
I wait --like the egrets, 
egrets spread on distant trees
like a wash of table-linen
for the sun to dry.

Were I a room I'd be stuffed
by what windows admit
I transfigure
to the bite-sized images
intelligence eats & eats

Splotches of white
contract, lift
into springing figures; bird.
One by one, one is a leader, up
off the green dark
they go into sun.
They are coming this way 
to lunch in the shallows.
I too am good at hunger;
it never deserts me.
I admit as I am able
frank delight
in the deaths and decisions 
of visible appetite.
Deep delight;
it is for--not of--myslelf,
it is for you
I write
of the storage and freshness
of keepers
of the lfe
of appetite. 

Copyrite 1988 by Marie Ponsot

Thursday, August 24, 2017

Great American Eclipse 2017

The Great American Eclipse of 2017 was a great science lesson, but we weren't going to be in the path of totality, and we couldn't get to a place that was, so we were excited but reserved.  We were invited to a party, but yet again, we couldn't go someplace because DS was sick...with an oozing infection that knocked him out.  Anyway, DD and I made some eclipse viewers, which was fun.  We watched the news coverage to see what it looked like in areas where there was totality.  We got to see the corona and learned about the sun.  We marveled out how beautiful it was, and how awesome it is that God created a moon that was 400 times closer than the sun and 400 times smaller than the sun.  Cool.  So, it was a beautiful day, and we had fun looking through the eclipse viewer, but it didn't seem to work well...I don't know why.  We followed the directions.  Anyway, DH called to tell us that someone from his job had brought in eclipse glasses, so we quickly went over there...too quickly.  Half way there, my daughter said, "Mommy, I'm hungry."  That was no surprise because her lunch was still in the oven at home.  So, we made a U-turn, I ran into the house, took her lunch out of the oven, put it onto a plate, turned off the oven, ran back out, and off we went again.  We arrived, my daughter no longer hungry, and by then we were really excited to get a good look after our failure at home.  We all got a turn to look through the glasses, and it was just beautiful.  It was so much more beautiful than I anticipated...even without the full coverage.
So, the next total solar eclipse is going to be in April 2024, and I hope we can get to the path of totality should be pretty easy, since we'll only have to travel 5 or 6 hours instead of a day.

Wednesday, August 23, 2017

The Great American Eclipse of August 21, 2017...Well, No, Actually Just a Great Big Tangent About This Difficult Past Year

Well, we had been invited to an eclipse pool party, but DS got sick yet again.  He had a nasty staph infection in his knee that was draining all over the place and it made him terribly tired.  Saturday we went to the doctor to have it cultured to make sure he didn't have MRSA since this was his second abscess in two months.  He was prescribed a sulfa antibiotic and an antibiotic ointment.  The antibiotic had to be taken with 12 oz. of water, which I couldn't get him to drink.  Sometimes it's important to exactly follow the directions, and sometimes it's not.  However, sulfa can cause kidney failure and other lovely fatal side effects, so I decided to just use the ointment since the wound was draining anyway.  We had another doctor's appointment yesterday, so I figured if it wasn't clearing up by then, I'd just ask for another antibiotic.  However, the ointment worked great.  Yesterday was DS annual physical.  He really hasn't grown or gained weight all year.  I'm not surprised.  Last year, the poor kid aged into middle school through BOCES special education program, so he was going to middle school as a perpetual four year old.  I tried to dress him like a middle schooler and Grandma bought him a really nice backpack from LL Bean in his favorite color, red.  However, he really didn't fit in.  He was put into a class with kids with multiple disabilities instead of autism.  He is classified as a student with multiple disabilities since he has developed cerebral palsy like symptoms from the medications we give him to keep him from banging his head so hard that he kills himself or becomes so aggressive he kills someone else.  It's a horrible choice, but a clear one.  So, my son, who is Mr. Social was in a class with non-verbal kids who kept very much to themselves.  He regressed so far by December, meetings were being called by his teacher.  I had been getting good notes home, so I didn't know that he was having so much trouble until they told me in December that they wanted to call a meeting to decrease his goals.  I was very upset because I wondered if he just wasn't doing the work or if he truly regressed.  He had gone from writing in script, working on reading comprehension exercises, parts of speech, multiplication, and fractions to either refusing or being unable to do anything.  So, I used my daughters math manipulatives at home to see if he could still perform multiplication equations or not, and he could.  So, he just wasn't doing the now the question was why?  So we had our meeting, and I refused to allow them to decrease his goals.  I thought the problem was that they had taken him out of the program he had been in that was specifically for students with autism.  He had been in that program with the same kids for six years.  There was no space in that class, but they agreed to put him back in for a short time in the afternoon to be with his friends again.  At this time I also found out that they had been sending him home a half hour early.  They told me that the bus had to come early to get him because they had to go to another school afterward to pick up more kids.  I called the bus company, furious.  They told me that the school had requested that they come at that time, and that my son was the only student on that bus...there were no other students being picked up at another school.  So now I knew the school was lying to me.  Then my son, who had always loved to go to school started having anxiety attacks and meltdowns because he didn't want to go to school anymore.  He would try to get sick so he didn't have to go.  If he did go to school, he would make himself vomit in order to be sent home.  I knew it was behavioral because as soon as he knew I was coming, he was absolutely fine.  But he was having these episodes constantly.  Then when winter came, he got strep throat and the flu at the same time.  He was very sick.  By the time we finally cleared up the strep and the flu had passed, he came down with strep throat again.  All this time he'd had no appetite and was losing weight.  After his second round of antibiotics, he developed thrush.  Despite treatment, he could not eat or drink anymore.  His body was so weak at this point, I was afraid he was going to die.  He was 47 pounds (at 12 years old), and couldn't even drink water.  He would wind up gulping so hard the water just came out of his nose and mouth.  He had a choking episode at school that resulted in his being rushed by ambulance to the hospital, but they wouldn't admit him.  I had been trying to get the GI doctor to admit him, but she wouldn't.  Finally the pediatrician helped us to get him admitted to Maria Ferreri Children's Hospital.  He was there for ten days.  He started to gain some weight back, but as soon as he returned to school, the vomiting began again and he developed diarrhea as well.  I had been trying to find out what was going on by talking to his teacher, his aide, and his psychologist, but nobody could tell me that anything was wrong except that he wouldn't do his work.  We had more meetings, and I was trying so hard to get him out of his class and into the class where he had been and where he had done so well. There was still no room this year or next, and the teacher told me that anyway, he wasn't socializing with the kids in the class...the kids with whom he was friends for the past six years.  That made no sense, and I said so.  So they asked, "How do you know he was socializing with these children before?"  Well, because I used to go to the class often for class parties and open houses and I WITNESSED it!  I guess they thought I was just making it up.  In April, the teacher sent home a list of field trips that the kids would be going on.  I thought that would be great for him.  They said that the only way he could go is if I went with him, because nobody else at school felt that they would be able to help him enough.  So, I signed the permission slips and sent them in, and agreed to go on all the field trips.  Then I got a phone call that he had a major meltdown in shop class.  They removed all the other kids, but they couldn't touch him to remove  him from a room full of tools.  Then they told me that because of this bad behavior, he couldn't go on the first field trip.  I was furious again because they left him in this dangerous situation, and then they were punishing him for autistic behavior, and calling it bad behavior.   I tried to fight it, but I lost.  Then the next field trip came, and I went.  My son behaved beautifully.  My daughter was also there since I home school her.  I hoped that they would see that it could be done with just some gentleness and patience.  However, I did see how the teachers treated the other kids.  Every little thing they did seemed like a big deal and was met with reprimands and removals.  It really bothered me.  But, we had a good time.  Then we went on the next field trip.  We had fallen so far behind in home school because my son was home so often, so I told them I would send my son to school, meet the bus at the field trip location, and then my son would go back to school on the bus and then on to his after school program so I could continue lessons with my daughter.  Nobody really interacted with my son during the trip, and when it was time to go on the bus, the teacher of the class I had been trying to get him into came and told me that she couldn't allow him on the bus because he was a safety hazard.  He had been kicking and hitting during the bus ride.  Usually my son is great on the bus, so I don't know what prompted him to behave that way.  Also, If he's on a school bus, buckled in, with an adult or nobody sitting next to him, how could he be a safety hazard?  Anyway, they wouldn't let him back on the bus and told me that I had to take him home myself.  The teacher spoke in such a cold way about my son, and his usual teacher just stood there not defending him in the least.  Then I understood.  They didn't like him, and they didn't want him there.  No wonder he had been acting the way he was all year.  When I told him I understood, his face lit up.  We immediately started looking for another program, and I had the psychiatrist write a letter to have him withdrawn from school early.  He was so happy when I told him he would never, ever have to go back to that school again.  We eventually got him admitted into a program in a very small, not for profit school where he will be in a class where the teacher to student ratio is nearly 1:1.  There will be six children, one teacher, and three assistant teachers.  They will be using the TEACCH method, which is the same one that he had done so well with before.  The school is very familiar with physical disabilities, so his issues are no issue for them.  They have feeding specialists, since he never regained all of his chewing and swallowing skills after he got sick...he even lost the ability to drink through a straw.  They also have behavioral specialists there, and his own behavioral therapist will be making 20 visits during the year as well.  They have a sensory gym full of swings and all sorts of other stuff.  The classrooms have play areas, quiet areas, and toys.  There is a brand new playground that was just built over this summer.  When we went to visit, everyone was so kind, and when my son found out that would be his new school, he jumped, and laughed, and danced, and sang.  I wonder why God allowed him to go through such a miserable year, but maybe it was because there had to be no question that it was time to make a huge change.  He's so happy that now he can use his emergency vehicle backpack again.  So, we're very grateful and looking forward to a much better year.  This is a picture of the sensory gym:

Sunday, August 20, 2017

Vacation Bible School

Well, I missed four days!  My intention was to write every day...oh well!  :)  Moving on...I also missed last Monday's weigh-in.  I now have only 111 pounds to lose.  So, I am keeping up with my 1 pound a week weight loss.  Painfully slow, but that's the right way to do it...and not to give up, which is easy to do.
This past week my kids were in vacation Bible school (VBS), and I stayed with my son the whole time so that he was able to participate.  We all had so much fun.  The music was great, the lessons were great, and my son really enjoyed being in the kindergarten class.  It was perfect for him.  He even fit his body into one of their little driving toy cars...he couldn't get his legs in, so his lanky legs were out the side door, and he kicked himself along that way.
The church was raising money for special needs kids in Africa, so they had the three of us get up and answer questions about my son, his challenges, and how we handle them.  We were able to share about how kids should not be afraid to ask special needs kids and their parents questions so they can get to know them...that it's so much better to do that than to avoid them and be afraid.  The kids in the kindergarten class asked lots of questions...why does he look dead, why can't he talk, why can't he use crayons, why can't he keep his balance, why does he act like a little kid when he's so big... So I answered, hoping they would be able to understand...that when they want to say something, their brain sends a message to their mouth, and the words come out...Jeffrey's mouth doesn't do what his brain tells it to do.  When they want to walk, run, or pick something up, their body does what they want it to do.  Jeffrey's doesn't.  We're not exactly sure why.  Then I pointed out things the kids had in common, and after a couple of days, he was just part of the group.
We also got to share how because we love God, he will use all things for good...even the hard stuff, even the sad stuff.  Finally, we talked about my experiences with special needs kids while I was growing up and how I was just nice to them...and that people remembered that many years later.  So, just be kind.
My daughter, who is introverted and painfully shy participated in the dancing and singing on stage and even got up to tell a joke to everyone using a microphone.  She participated in a "secret mission" where she had to talk into the microphone in front of everyone too.  I am so proud of her.  Now she's letting people see how awesome and wonderful she is.
Best of all, God used this time to bring a good friend back to the church.  My son's nurse of six years has been recovering from an injury for the past year, and she's been looking for a church.  I was able to invite her to see my son ,with whom she worked all those years, dance and sing. I was also able to introduce her to all the nice folks at the church, including my aunt and uncle.  So, I hope she felt welcome and that she goes back again.  It was a lovely day.
After all that, my aunt and uncle treated us all to a delicious lunch that we ate outside with the beautiful sunshine, breeze, and a few obnoxious wasps.  :)  What a blessed week we had!

These are the songs my kids sang and danced to at the show on Friday for the last day of VBS.
God is Over the Moon

Sin Messed Everything Up