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 work...so 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:

Monday Weigh In

Well, I was hoping to lose more weight in the first week, but I lost 2 lbs.  So, now I only have 113.4 lbs more to lose.  At least I didn't stay the same and I didn't gain, so I'm grateful for that.  I have not eaten processed sugar for 7 days now.
Today's weather is much like that of Tuesday two weeks ago when I was camping...rainy and a high only in the 60's.
My main goal is not to feel discouraged.  This is going to be a long, slow process.  The truth is, this whole past year has been discouraging.  A little over a year ago, my husband left his job and got another job that paid much less and had terrible benefits.  So, for that whole year, we really didn't have enough money to pay the bills.  We had no more savings, and the medical bills keep coming because the medical insurance was dismal.  The furnace doesn't work, our shades are broken and need to be replaced, the hall bathroom is gutted with no plan of repair right now, the porch needs to be repaired and painted, the side stairs need to be repaired, wasps moved into the sandbox in the yard, our kitchen is not finished, our walls are full of holes from my son putting his head through them, all the doors inside our house are broken and need to be replaced, we have what was gutted from the bathroom lying in the side yard because we have no bulk pickup and no way to get the stuff to the dump, and we still have an autistic kid who has meltdowns often, who has been sick for months at at time over the past year, and we are just so very tired.  My husband did finally get a better job...his old job with a raise, but to catch up on everything from the past year is seeming impossible.  I finally saved some money, but we needed nearly $3,000 worth of work on our cars, so there went all that money.  Our tax returns went to one weekend away at at B&B for Jeff and me to try to keep our relationship strong, and then to paying for bills we'd been sitting on, buying stuff for the kids that they'd needed, and I don't remember what else...some to the cars.  I send lunch in for Jeff and Jeffrey every day.  We have Tracfones and one step above basic cable.  We are on budget payments for oil blend, propane, and electricity.  We go camping once a year for $144 for the week.  I shop at Aldi's and have a very limited food budget and meal plans.  I'm just not sure where to shave anything else off.  We've got pretty much everything at a bare minimum and still can't seem to keep our heads above water...right now I'd settle for just our nostrils or at least a snorkel.
I am trying not to think about how unfair things seem and how it seems like everyone else has it easier, because everyone has their own set of problems.  To covet is a sin.  I am trying to be grateful for all we do have, and not to worry, because God knows what we need, and he promises to provide us with what we need.  He says do not be discouraged, do not be afraid.  So, I"m going to just trust him and keep plodding along.

Camping

This is the fourth year we've gone camping.  There's always something difficult...the first year, which was very new to my DS who has autism, was the most difficult.  That year he banged his head so hard into my car that he broke a headlight.  He also hit me in the head repeatedly so that I started to vomit.  The second year, DS urinated all over the inside of the tent including everything in the tent, so I had to spend one whole day at the laundromat.  The third year we were completely broke that I didn't bring many new activities for the kids to do, and we couldn't go and do things around the area.  The kids got bored, and we left a day early.  This year, it poured for four of the five days we were there.  On the fourth day, DS got his finger stuck in the car door, so we went home early again.  The day we packed was the nicest day all week.  We wound up missing the urgent care hours anyway, and by the next day his finger looked okay, so we left early for nothing.  We were tired from being wet and cold all week.  In fact, on Tuesday, the high only got up to 63, so we were wearing fleece on July 25.  But, we had some nice family time, and it was nice to be out in nature.  Also, they built a new playground at the campground, and that was the biggest hit.  In between rainstorms, we had some campfires and some snuggles.  DD's hippo Harry went everywhere with us.  Soon we are planning to visit his brother William at the Metropolitan Museum of Art.
DS loves camping now, and is generally very relaxed the whole time, which in itself is a major blessing.  I hope next year is better.  It's a cheap vacation, and just about all that's in our budget for now.