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!

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:

Home School/New Special Ed School/Gratefulness

Last night was the first local LEAH meeting (Loving Education At Home), and it was nice to see everyone and get encouraged for the upcoming year.  I've been going through our curriculum, working to get the first few weeks planned out.  We use Math U See , All About Reading, All About Spelling, which are all multi-sensory programs that use concrete methods to teach abstract concepts. We also use My Father's World Exploring Countries and Cultures, and Explode the Code. Explode the Code follows the same sequence as All About Reading, but doesn't teach each step explicitly; so we use it to reinforce the concepts we've covered.   It also includes all the books we need.   I love My Father's World because it plans out everything for me and schedules when everything should be done. It gives spaces for Math, Spelling, and Reading, which are the subjects that need to be supplemented.  I tried in first grade working without a curriculum and just doing unit studies, but it really was a disaster.  So, now as we approach 4th grade, we're just sticking with what works.  We started out with a strict schedule, a uniform, a room decorated like a classroom, and a very structured environment.  I wanted to give DD a private education experience because I couldn't afford to give it to her, but I could give it to her myself.  It was a complete fiasco.  My daughter craves freedom, and over the years I've tailored our home school to suit her.  That's the beauty of home school.  When math comes easy, we speed through the mastery program.  When reading and writing are slow, we are pokey through those subjects and approach the other academic areas using oral methods so that the intellect is the same but the process is different.  We start a little later in the morning, or not until the afternoon, sometimes wear pajamas, sometimes get dressed, sometimes do school at home on the couch, in the dining room, in the kitchen, on the porch, or away from home in a park or someplace like Panera.  She can get up and walk around while she does her work.  She can attach her work to the fridge with magnets and work upside down.  Sometimes I put on music and sometimes it's quiet.  Whatever works is what we do.  We also belong to a co-op that offers art, music, and gym, which is great because those are my weak spots.  So, now that we're starting year 5, I'm confident with what will work, what not to worry about, and that I'm doing what I'm supposed to do.

DS is also starting a new school in September.  Last year was horrible, so I'm truly hoping that this year will be much better.  It's a tiny school with very small classes.  There is a regular gym and a sensory gym full fo swings and other stuff to stimulate the senses.  There's a brand new playground.  There are toys in the classrooms.  There is a dining area with  a stoves and sinks and a washer and dryer for activities of daily living.  The people there seem to be very nice.  It's a not for profit organization for kids with lots of needs.  DS will also be getting physical therapy, occupational therapy, speech therapy, feeding therapy, and behavioral therapy.  I'm just praying that he is where he is meant to be.  We all had a good feeling when we went to visit the school.  It's in God's hands.

So, today DS is feeling better, so we went out to the park to get some sunshine and fresh air.  I feel better, and the kids are happier.

Today's gratefulness challenge is to think of three things I'm grateful for that are hole, whole, and half.  Hmmmm.  I have to think about this one.  A hole...we have groundhog holes in the yard, wasp nest holes, and we have holes in the walls of our home from DS banging his head...I'm not really grateful for any of those...I have no idea.  I'm going to have to really think about this one...I'll get back.

4 am Bathroom Cleaning/Making a Plan

DS gets sick very often.  He doesn't make it to the toilet many times, and that results in me cleaning the bathroom and him in the middle of the night very often.  I am a horrible mother at 4 am.  I am impatient and unhappy about having to clean everything up and get my son changed and knowing that I am now up for the rest of the night/morning.  Either it's sprayed feces or urine depending on what doesn't make it into the toilet.  There always seems to be something new too.  As of today, my DS either turns around while getting on the toilet or doesn't direct the urine into the toilet when he is sitting...I don't know.  But at 4 am today, I stepped into a puddle on my way to take care of him and was not patient because he wanted me to take care of him, but I really need to clean the floor first so that he doesn't get messier than he already is.  I wish I were more patient.  I wish I could be fresh and sweet and not mind.  He can't help it.  I'm pretty good when it's not the middle of the night woken from a dead sleep, but the poor kid can't help it.  So, that's another prayer for me to be more patient.  Of course, praying for patience just gets you more things to have to be patient about.  This also interrupts any plans for the rest of the day that I may have because then DS is home from school.  In the summer, it doesn't matter as much, but during the year I hesitate to make any plans because I know that they can be cancelled at any moment.  I've even had to leave a funeral.

So I'm whining again, and the whole purpose of today's post is supposed to be about making a plan about all the stuff we need to do.  So, I wrote down all the stuff we need to fix in the house, tried to form a budget of approximately how much each thing will cost, and then looking for information about how to do it.  My sister redid a whole bathroom on her own.  There are all sorts of women on television who tackle entire house flips on their own...so I should be able to do it too.  It looks awfully daunting to me, though.  I'm hoping DH will be able to take some time off to help, and than DS will actually be in school and not sick.

Other things I am doing are reading the Bible every day and praying all the time.  I'm trying very hard to trust in God's plan, His timing, His way of doing things.  I surrender to Him over and over, wanting Him to make me into who He wants me to be.  And then I fail over and over and over again.  I ate too much yesterday, I was impatient yesterday and already today, and it's only 5:53 am.  I'm not active enough.  My house is messy despite working at it every day.  I keep underestimating things that I need to budget and feel absolutely overwhelmed because no matter how well I try to budget, we keep getting all these wonderful surprise bills, car problems, stuff that happens in life to everyone, I guess.  I get tired of having all the neighborhood kids over all the time because I feel like I can't keep up with what I need to do myself, and then I have extra kids to watch and feed.  Of course, if God is sending them to me, then this must be a ministry, and I should be practicing hospitality.  The truth is, I often keep the shades down and avoid going outside to try to hide from them.  It's awful, I know.  Two of them are also ADD/Autistic on top of my own kid, and I feel like I'm giving their parents respite all the time and I don't get any myself.  There are days when I send them away, and then I feel guilty because I'm sure that's not what God wants me to do.  So, I'm still whining.

My husband and I are always so stressed and tired...we have no babysitter, we have no real time alone.  There is no door on the bathroom and our bedroom door is broken.  There is no privacy.  I'm sure people lived that way for eons, but I still wish I at least had a door I could lock for a little while.  DH is exhausted too, and feeling just as down as I am.  We were hoping for at least a restful vacation, and we didn't.

Also, my son is all over me all the time when he's home.  Constantly snuggling, which I know is a wonderful thing.  But I just want to not be touched all the time.  I want him to not touch my nose and ear, and flick my hair into my face over and over and over and over and over and over and over again...and lay on me, and drool on me all day... to dive onto me, to lay across me, to interrupt me constantly.  Even now I've been up and down getting this or that for him, and his elbow is dug deep into my upper arm.

Nobody wants to hear this, and I have it much better than many, many people, but this is just how I feel right now and pray that God will help me to readjust my attitude.  Where is my gratefulness?  Where is my worship?  This is not who He wants me to be.  This is not how I should be.

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.

Behavioral Therapy

We started behavioral therapy a couple of months ago. I wish we had been able to get behavioral therapy a lot sooner. I know that some behavioral therapy is done at school, but I sure could have used the help at home.

Disciplining a child with autism is extremely difficult for several reasons. First, it can be difficult to tell the difference between bad behavior and autism...what can't they help doing, and what can they help doing? Second, many autistic kids just don't understand many discipline methods. This is very frustrating.

We have always tried to expect good behavior from our son, and have always been consistent. I always give a tremendous amount of positive reinforcement, follow through on threats for punishments, and I always try to make sure that the punishment fits the crime. However, this doesn't always help because many times my son just doesn't seem to "get it".

Also, he can be aggressive toward himself and me. He bangs his head when he is angry, frustrated, or afraid. Trying to get him to do something else is extremely difficult. This is the second thing the therapist is trying to address.

Other things we're working on are sitting at the dinner table, potty training, and transitions.
The therapist uses something called ABA therapy. That stands for Applied Behavioral Analysis. We've actually been using many aspects of ABA without evening knowing it.

Basically, ABA breaks down tasks into minutia and the child receives a tremendous amount of positive reinforcement in order to get them to display desired behaviors. The hard part is knowing what tiny steps to break the activity into, and focusing only on positive reinforcement because these kids DON'T get traditional discipline. The negative reinforcement is withholding the positive reinforcement. This is extremely challenging and takes an immense amount of patience and energy. It's absolutely exhausting. By the end of the day I'm often feeling very burnt out, and this takes a lot of attention away from my daughter.

Steps we're taking are using picture schedules as well as using lots of pictures for communication, giving stickers for taking medications, and giving positive reinforcement like saying good job or giving a high five every few seconds that my son is seated at the dinner table (and getting up dozens of times to put him back into his seat during dinner...right now we hate dinner time). Potty training involves getting to watch Chitty Chitty Bang Bang for 20 minutes if he spends as much as one second sitting on the potty, and we've limited the choices of what to do instead of bang his head down to just one thing that he can do...stomp his feet.

ABA combined with his new medication has been somewhat effective, but anything in autism takes a lot of time...often years. Some things never happen. However, we have to have high expectations in order for my son to achieve his highest potential. So, that's what we're doing.

Lastly, my nephews gave my son a drum set from the video game Rock Band. It's quiet, and my son loves it. We've tried all sorts of other drums or other things to get him to bang on because he needs to bang constantly. He ruined so much furniture and broke lamps and hit others constantly, and it drove us crazy. Now he has an appropriate outlet for his drumming, and everyone is happy.

Patience, time, consistency, repetition, reinforcement. ..difficult but worth it.

Where Has the Time Gone?

Playing horseshoes at the family picnic

Playing volleyball with the cousins at the family picnic

Rides at the community day fair

Nature hike at the harvest festival

Cool mushroom we found on our nature hike

Oh my! It's been a month since my last post. It's been a busy month with kindergarten starting for my son and all of us passing around a cold. It's my turn right now. Yuck. At least my son didn't get horrifically ill this time. Usually when he gets a cold, he winds up with asthma and on antibiotics for MONTHS. He still has a runny nose and coughs once in awhile, but that's it. At least we dodged one bullet. :)

Since my last post, we went to my girl friend's wedding, which was wonderful. They provided daycare at the reception, and so my husband and I were able to relax, eat, spend time together, and talk to all our friends at our table. It was wonderful. After the wedding, they had a bonfire and fireworks. My daughter said the fireworks were "cool". She's too much.

Then kindergarten started. I'm not fond of the bus driver. She's unfriendly and drives too fast. Other than that, my son is doing extremely well. He's talking more, he has told me twice about things he's done in school, and his teacher says he's doing very well in the class. We're still working on toilet training. We went through a lot of confusion with where to send my son's medical forms, immunization forms, and therapy prescriptions because he's going to a school outside of our district, so the district and the school both needed the forms...we eventually worked everything out.

We started behavioral therapy with my son. The therapist has given us a lot of great tools that have been very helpful. I'll have to write a separate post just about that.

Our babysitter is back from being home in NJ over the summer. We had another babysitter who was very good, but we just connected with her more. As a matter of fact, she stopped over yesterday with her boyfriend to drop off little pumpkins and apples for us and the kids. She's just a really nice girl, and we love her.

She still comes occasionally during the day to hang out with the kids so I can catch up on some cleaning, and she's coming over Wednesday nights so that my husband and I can attend a marriage workshop at our church. Although we're doing well, we want to keep it that way. :) Especially with how difficult it is to be parents of an autistic child and how easy it is to get so wrapped up in parenting and get so tired that you forget your relationship with one another.

We also love our church. That was a huge decision, and I suppose that's another post too. We had gone on a Tres Dias weekend, and since then, we've really had God as the center of our lives more than ever before, and it's made such a difference. That's another post too.

My son just started a new medication. It's similar to the one he's been on, but this one is extended release so it's not supposed to make him as tired. So far, it's only been two days, but he doesn't seem too tired and he seems a little more focused. Time will tell.

My husband's parents were up for a visit, and we got to see them a couple of times. We had the annual family picnic, which was a lot of fun, and then we spent another day over my sister in law's house just hanging out and eating way too much. My WONDERFUL nephews gave my son one of their drum sets from Rock Band, which my son has been using every single day...it's so nice to have something for him to drum on that's not the table, the lamps, my head...

I also got to go out to lunch again with my cousin, Carole to the CIA. That's another post too. We're going out again this week for lunch with my Mom and her Dad.

Sheesh, I have a lot of catching up to do.

I really should update the blog a lot more often. It's so nice to go back and read about things. It's like a journal. There are even services where they'll print out your blog as a book.

Well, I'll post more later, but at least that's a little bit of what we've been up to. :)

Dutchess County Fair

Well, it is sad, but this is my first entry about someplace we actually went this summer. It's been a quiet summer focused on school, therapy, taking care of my son, and church.

I was really hoping that the fair this year would be more fun than last, and it was. My son is still fixated on very few things. He spent almost the entire day playing in a little bin of dried soybeans and small toys. We had to wrestle him out to see the old-time machines which he likes because they spin. We had to force him to sit through a high diving act, and he wasn't even very interested in the construction vehicles they had out for the kids to climb on. My daughter was interested in more things, so my husband and I split up. My daughter and I went to the little zoo, the little museum, and to see the animals and the butterflies. Mostly we stayed by that bin. I truly hope my son's interests will expand a bit and the tantrums let up so that we can have more fun.

I think I'm ready for summer to be over. I usually like summer, but this year has been a bust. It's been the hottest summer ever, my son's been sick the entire time so we couldn't go in the pool or much of anywhere else, my husband works long hours most days of the week so I don't see him very often, and there's just no time or money to go anywhere.

Still, we're grateful for what we have. We have our health (for the most part), a comfortable home, two cars, plenty to eat, clothes to wear, and good friends and family. What more do we need, really?

General Updates

We started working with a behavioral therapist who has provided us with picture schedules that we've been using, and this has been very helpful with transitions. My son likes to know what's going on during the day. My daughter likes them too. We have a strip on the wall by his bed where I put the pictures, and I also have flip cards so that I can bring the pictures along wherever we go so that I can prepare him for transitions while we're out too.

The therapist has also been working on getting my son to sit through a meal, and he's doing very well. He still gets up, but the length of time that he's sitting is getting longer and longer.

We're also working on getting my son to keep his seatbelt on, and he's been doing well with this too.

The head banging continues, despite all efforts to curtail it. Sigh.

Our new neighbors moved in, and they seem nice. They're also a family of four with a son and daughter who are 14 and 11...same age difference as mine. The mother is an aid in the local school system, and she works with an autistic boy. My husband's coworker calls this a "God-incidence". I like that term.

Kindergarten starts on September 8th. I like the program my son is in, and we've been to visit the outside of the school. There's a big playset that looks like a fire engine on the playground, and this was a big hit with my son. The school is a regular public school in a nearby school district, but my son will be in a self-contained class with other autistic children. There will be seven students, a teacher, two assistant teachers, and a speech therapist in the room. The program is very similar to the preschool program he just finished, and I think he will do well.

He still has diarrhea, and the doctors still can't seem to figure out why.

My daughter is talking up a storm, and her pronunciation is getting clearer. She's just too darned cute.

I'm sure I'll have more time to write when my son goes back to school. He takes up a lot of time...but it's a blessing that I have so much time to spend with my kids.

When My Son Doesn't Get His Way...

When my son doesn't get his way, he bangs his head. Unlike normal kids, autistic kids will bang their heads until they hurt themselves. Despite this, he still doesn't get his way. I'm hoping that he'll eventually learn that banging his head does not serve any purpose. Unfortunately, we're on hole number two in the wall from the head banging.

We have been very blessed to have very understanding downstairs neighbors, and very kind maintenance workers who are willing to come and fix the holes and who understand that autistic children do these things and are not surprised or judgemental.

Thank you God.

Kindergarten Placement Update

Well, after much prayer and being a pain in the neck, we finally have my son placed in a kindergarten class for September that I'm happy with!
The coordinator of special education is filing a variance to open up a 7th spot JUST FOR MY SON in one of the classes for autistic children in a district school So, the ratio will be seven students, one teacher, two teacher's aides, and a speech therapist. That's a smaller ratio than he has now, as he's in a similar situation but with 8 children. I visited the class, and the children are similar to my son in level of functioning. The class is similar to the class he is in now, but with academics that closely follow the regular academics of the school. The class is in a local grammar school, so there will be plenty of interaction with "typically developing" (that's the PC term) children. There will also be lots of opportunities for mainstreaming. AND he will be eligible for any after school activities offered including instrument lessons, chorus, sports, or whatever he may be interested in. He will also have the opportunity to be mainstreamed into academic classes as well, should he excel in a particular area. So, I'm very happy. Also, the school is only 20 minutes away, which I'm more comfortable with. It's in a nice, quiet little area, and the playground has a big monster truck for the kids to climb on. My son is very excited about this.
Today was his last day of school, and I was happy to be able to let his teacher know where he'll be going.
We still have to work on potty training, which has been difficult because he's had diarrhea for six weeks now, and none of the doctors or specialists seem to be able to figure out why. This is bad for toilet training because he doesn't make a lot of urine because most of his fluids come out in the bowel movements. This means there aren't a lot of opportunities for him to succeed in making pee pee on the potty, and this means he doesn't have success to motivate him. This is not a good thing, but I explained the situation to the special ed coordinator, and this is not going to break the deal for my son being in a district class. So, we'll just keep trying. He has a medical condition, and he can't help it, so I'm glad they wont' hold it against him. If they did, I would have insisted they get an aide for him. I guess I've been enough of a pain in the neck for them. :)

Kindergarten Placement

Well, we're in the midst of looking for the best placement for my son in kindergarten. He was initially placed in a program within an institution that treats the most severe cases, with many violent children with a ratio of 6:3. I didn't feel it was appropriate for him.
Then we looked into a district school with a class specifically for autistic children also with a ratio of 6:3, but there were no spaces.
I told the district that they'd have to find some other options for my son, and if they don't have any openings, then I want him to be placed into a higher ratio class with an aide.
Then we looked into another institution that is for multiply handicapped children with a ratio of 12:5. He fit in a bit better here, I wouldn't have to worry about him being injured, but the school is 45 minutes away. Also, the children are much more severely handicapped than my son. So, I'm not completely thrilled with this placement.
Then today, I got a phone call saying that they were willing to create an opening for my son in a district school in one of the classes for autistic children. I THINK that this would be ideal, as he would be in a regular school, close to home, with more opportunities to integrate with normal, ah, er, typically developing children. It would then be easier to move on to mainstreaming and inclusion.
So, we'll see.

A Book to Share at School

I made a book for my son to bring to school that told of his experience. He had me read it about a hundred times this morning while we were waiting for the bus, and by then he had it memorized and he was reciting it while looking at the pictures while he sat on the bus. He is talking MUCH, MUCH more, but he is still hard to understand, and his vocabulary is still limited. So, sending in a book is a good way for him to share what happened to him, and he likes seeing his experience in a book too.



DS Met Too Many Yellow Jackets



DS was playing by a pine tree.



All of a sudden, DS felt a poke. It was a yellow jacket.



Yellow jackets are not like bees. They make nests in the ground and get very angry if someone comes near. A bee can only sting once, but a yellow jacket is a wasp that can sting many times. That is what happened to DS.



Soon, many more yellow jackets were stinging DS. Daddy came and brushed them all off. He got angry right back at those wasps.



DS got a lot of boo boos. They hurt a lot. Mommy called 9-1-1. Three trucks came just for DS-an ambulance, a police monster truck, and a fire truck.



DS got a shot. He didn't like it, but it made him feel much better. Mommy snuggled with DS, he slept a lot, and by the next day, his boo boos didn't hurt anymore.



An exterminator came and got rid of that wasp nest. Now DS can play by the pine tree again.



The End.

Behavioral Techniques

In addition to medication, we are using a number of behavioral techniques to help my son adjust to changes in his environment.

My son is a very visual learner, so we have pictures taped up all over our apartment. We use pictures for the calendar, we use pictures for schedules, we use pictures for communication, and we use pictures to help my son express and handle his emotions. These techniques are somewhat effective and can help to relieve my son's stress, which helps to alleviate everyone's stress.

Since my son's speech still sounds like babbling, he can be very difficult to understand. We use pictures for communication so that he can point to a picture to help explain what he's trying to say. He also uses some sign language, and is also smart enough to sing, or make pantomime to show us what he's trying to tell us.

Picture schedules help him to anticipate what is coming next so that he is more relaxed when his environment changes. Unfortunately, last minute changes to the schedule or complete abandonment of the schedule due to something like my daughter teething or my son having a difficult day full of tantrums still cause difficulty.

The newest thing we're doing is using picture boards to help decrease my son's head banging. This has been the least effective, but we still keep trying since learning disabled kids can take a very long time to learn a new skill. The pictures are supposed to help him to identify why he is hitting his head and provide him with an alternative behavior.

So, these are just some of the behavioral techniques we use with my son. We're all learning together. My son responds extremely well to positive reinforcement and loves receiving as well as giving affection, so that makes everything better.

"I Know Exactly What You're Going Through"

Rosie, one of Thomas the Tank Engine's friends
People are always telling me that they know exactly what I'm going through, and I think, they have no idea. Unless they have a disabled kid or an autistic kid, they have no idea.

Yesterday afternoon was really rough. What got me through is that I had some decompression time beforehand. Also, I now know that my son will not always be so difficult whereas he had been difficult all the time to the point where I was completely burnt out before we started the meds.

Yesterday I totally forgot about my son's neurologist appointment even though it was on my computer desktop. Somehow, I hit snooze and it didn't come back up, and I just totally forgot about it. My son came home from school, and I took off his shoes and jacket and he put his favorite toy, Rosie, one of Thomas the Tank Engine's friends, down in a location unknown to me.

Then I looked at the computer and saw that he had to be at the neurologist in a half hour. Doh!

So, I had to get his shoes and jacket back on, which he was not prepared for since he was in stay home mode. That means, he kept running away from me, slamming his head into the wall, collapsing on the floor, screaming, thrashing around, and doing everything he could to make sure that it was impossible for me to get his arm through even one sleeve. Having lots of experience with this, I was able to wrangle on his jacket. I swear sometimes I should be dressed in chaps and boots for this task. Then the shoes. He kept throwing his shoes and kicking. It took a very long time for me to get his shoes on. During all this, I also have to be aware of what my 19 month old daughter is up to as well so that she doesn't get into trouble while I'm distracted or get hit with a shoe.

Then we couldn't find Rosie. I didn't know where my son had put her. Later we found her on the kitchen counter, but I didn't think to look there. So, I had to try to get him out of the house without Rosie. He was screaming and crying pathetically for "Woe dee" and worked himself up into hysterics. But we had to go, and I tried to calm him the best I could with a quiet voice and tried to get him to take another toy, but to no avail. He was fixated, and I couldn't redirect him.

Then I had to get him down the stairs. Because he was upset, his sister was upset too. They both started flopping and screaming and crying and it was like trying to lead two large strands of spaghetti down three flights of stairs. But, I did it.

Then I had to get them into the car. My son was constantly pulling to run back inside to find Rosie, so I had to hold both of their hands in one hand so that I could use the key to unlock the car door because they both wanted to get away from me. Then I had to keep my daughter trapped between my legs inside the car door while I got my son into his booster seat, making sure that he didn't kick her with his flailing feet as he was still devastated at the absence of Rosie. He kept trying to pull the seat belt off while I was trying to get it on, and my daughter was trying to wiggle away. But I did it.

Then I got my daughter into her seat and we drove to the neurologist's office with the two of them screaming inconsolably. Then we got to the office and I had to get them out of the car and into the building. My daughter had calmed down by this point, but not my son. His tantrums can go on for hours.

I had to carry my five year old son and my daughter to get them inside and to the elevator. My son didn't want to go on the elevator, so I had to try to keep him in a semi-upright position as he tried to fling himself away from me. The elevator finally came, after what seemed like forever, and we went up to the third floor. We got off the elevator, and my son collapsed on the floor kicking and screaming because he's afraid of the height. The building is designed in such a way that there is a central atrium, and the offices are around the perimeter with glass railings so that you can see down into the atrium. He wouldn't move and tried to kick me away every time I got near. I was finally able to get him to walk to the office, screaming and pulling. We got into the office, and he was still upset and asking for Rosie.

Thankfully, we got called in almost right away, and then we had to deal with screaming, kicking, and collapsing because they wanted him to stand on the scale and use a stethoscope on him. In the meantime, he was trying to pull apart the blinds, play with the computer, pull all the wires on the computer, and play with everything on and around the desk. I dealt with this while still having to watch my 19 month old as well.

After the appointment, we had to get out of the office, and he kept hooking his feet on the door frame so I couldn't get him out. I eventually did and had to carry him to the elevator thrashing around again.

So, is this REALLY what folks with normal kids go through? Do you REALLY know what it's like to do that all day long every day? Really?

So, things have been much better since my son is on meds. This used to be my life every day with my son head banging my face and my daughter. Now it's only sometimes, and he never hits me or my daughter. It's still exhausting. I pray for strength and patience every single day.

So if I'm ever late, or I ever look like I just went through a war, now you know why.

Melatonin!

I don't know what took me so long to try melatonin for my son. Everyone I've spoken to with an autistic child swears on it for helping to get their kids to sleep.

Usually our evenings are consumed with going into my son's bedroom dozens of times over the course of several hours to see why he's frustrated and banging his head and trying to calm him down...even involving a trip to the emergency room. Usually he doesn't fall asleep until 11 or 12. Tonight he was asleep before 9. No tantrums. No head banging. Last night he fell asleep around 9:30. He woke up without any grogginess. In fact, he was happier this morning than I've seen him in ages. It was even relatively easy to get his jacket on this morning, which is usually a huge fight.

I'm always leery about using over the counter meds, but my son is closely followed by many specialists, so everyone will be looking out for any possible negative side effects. The most common ones are hormonal fluctuations, but his hormones are constantly monitored, so we'll be keeping an eye on that.

All of the scholarly articles I've read about treating children on the autism spectrum who suffer from sleep difficulties with melatonin report nothing but positive outcomes. In fact, beyond just the children falling asleep earlier, sleeping better, and sleeping longer, studies have noted a decrease in obsessive compulsive behaviors and happier parents. :) They report that negative side effects are commonly associated with very high doses and that the doses recommended (under 10 mg) appear benign.

So, after feeling so bad about medicating our son, he's doing pretty well. He can control himself better, he's happier, he's getting more sleep, my daughter is no longer in danger, I'm not covered in bruises, and we can enjoy our son again.

Never Enough Patience

I pray continually for more patience, but it doesn't always come. I have a very bad trait in that I get very grumpy and impatient when I'm tired. Very often my son won't fall asleep until after midnight, and sometimes I'm up until 2 because I don't start housework until after he goes to sleep because I have to constantly go into his room because he bangs his head. Or, I get stressed out from all the tantrums, and I can't fall asleep. So, I've been getting about four hours of sleep per night over the last few nights. Tonight I vowed to go to bed early, but I hate to go to sleep before my son in case he needs me.

Also, I'm feeling horribly guilty. He always seems to want a toy I can't find, and until I find it (or my husband does), he will scream and smash his head into the wall. I got angry because I couldn't find the toy he wanted, and told him he just had to go to sleep. It was nearly 10 pm, and I was tired and just needed the day to end. Both kids have basically stopped napping, I haven't been sleeping, and I yelled at my poor son for doing something he can't help, and that of course got him more upset. My wonderful husband found the toy my son wanted, and my son quieted down. I felt horrible.

I went into his room and held him and rocked him and cried feeling like a horrible mother and thinking in my head that I was so sorry he didn't get a better Mommy. I told him how sorry I was that I lost my patience and I tucked him in and rubbed him.

My son being the sweetheart that he is forgave me without a moment's hesitation and just enjoyed being rocked and rubbed.

Why can't I just be more patient? Why is it so hard?

If you've ever watched 19 Kids and Counting, the mother, Michelle Duggar, had a baby at 25 weeks gestation, and has been at the hospital with the baby ever since. She didn't sleep for weeks when things were touch and go, and still with all the stress and lack of sleep, she remained cheerful. She never yells. I don't know how she does it.

Guess What? I Love You!

My son surprised me today. I never know exactly how much information he understands or retains. Today, I observed some evidence that some of what I say is definitely understood. This, I think, should give hope to anyone who is waiting for their child to speak.

I must tell my kids a thousand times a day how much I love them. I have lots of different ways I like to do it. One way is I start out with, "Guess what?" Then I say, "I love you!" Today I said, "Guess what?" And my son answered, "I love you!"

I can't tell you how happy this made me. I even got a kiss. There's nothing like hearing your child say, "I love you"...especially when they've been essentially non-verbal for five years.

For all those people who have told me that I'd be sorry when my kids started talking because they'd never shut up, I am so happy to hear every word, and I hope they never stop.

CPSE-CSE Meeting

CPSE stands for the Committee for Preschool Special Education, and CSE stands for the Committee for Special Education, which encompasses the next 12-16 years of school. These meetings are held annually to discuss student progress, and next steps. They can be intimidating and emotional.

The meeting was headed by the assistant director of pupil personnel services. She was joined by a special education teacher from the school district, a regular education teacher from the school district, my son's teacher, me, a school psychologist, and another person from the preschool, whose position I can not remember.

There were three parts to the meeting. The first part was the annual CPSE meeting, which would discuss whether or not my son would be eligible for the Summer Program. The second part was the preschool summary meeting, which would evaluate how much progress my son has made during his two years in preschool. The third part was the CSE meeting, which would discuss my son's classification, and where he would be placed now that he was entering the public school system.

The CPSE meeting reviewed my son's progress over the past year, and that he has started to eat some fruit, drink from a straw, take off his coat, and talk, although most of his speech still sounds like babbling. Because of his severe delays and his tendency to regress when he's absent from school, it was decided that he was indeed eligible for the Summer program. That was good.

Then part two of the meeting evaluated how he had progressed throughout his preschool "career". It was a little like the Newlywed Game. The teacher and I had to pick a number from 1-7 to describe how well my son was able to do something, 1 being not at all, 3 being an emerging skill, and 7 being a mastered skill. Then the meeting leader would tell us what my son's score was during his initial evaluation before beginning preschool. All of the scores remained exactly the same except for self help, since he can finally tell me if he's hungry and request a bottle, some water, or some fruit. This was the only area where there was improvement, where my son went from a 1 to a 4. This was disconcerting, upsetting, and sad. Then it was on to part three.

The third part of the meeting was the CSE meeting. The first order of business was to discuss how my son would be classified. Because he is on the autism spectrum, and also has dyspraxia, growth hormone deficiency, and other muscular and neurological issues, as well as very little ability for self-care, he has been classified as a child with multiple disabilities. Because he is so very delayed and needs so much assistance to do absolutely anything, he can not go to a regular school, not even a special education class in a regular school. The best ratio in a school is 15:1, and this is not good enough for my son. So, it was suggested that he be placed in a BOCES (Board of Continuing Education Services) school program for children on the autism spectrum. The ratio there is 6:1:2...six students, one teacher, and 2 assistants. He will be able to continue to receive speech therapy, feeding therapy, occupational therapy, and physical therapy in addition to behavioral and psychological services. His case will continue to be reviewed annually, and depending upon his progress he will either be moved to a regular school, or he may remain in this program until he graduates high school, which he has until he is 21 to do. Should he remain in this program, he will not be required to take state exams or regents, and will graduate with an IEP diploma. IEP is Individualized Education Plan, and is a course of action used to evaluate the requirements and progress of special education students. An IEP diploma is not the same as a regular diploma or even a GED. It's basically a certificate of completion only. The program does provide counselling and job training and placement, however, so that he would be able to work in whatever capacity he was able.

He will be in a school with other children like himself, and will have every opportunity to succeed at the best of his capabilities.

The school is 1/2 hour away, and he would be on a special bus with a matron, and would receive door to door service. Because he's little, he will also be getting a car seat. These are also very good things.

It was upsetting and gratifying at the same time. I know what his issues and problems are. I couldn't imagine him going to a regular school and riding the bus with all the other "normal" kids who could be very mean, and without a bus matron to supervise him. I couldn't imagine him going to a regular public school, even with a special education class, and then mixed in with other classes. I didn't know about the BOCES school, and I was so happy to hear of a place that I think would be just perfect for him...a place where he would be with other kids just like himself, getting all the services, help, and supervision he needs. I was also a little sad, because it's always difficult to have to focus on your child's problems, and to have a qualitative record of his lack of progress. There's always a bit of a period for me when I mourn my son's struggles, and imagine the future, and think how are we going to get through all this?

Then I see his smiling face, and remember to take everything one day at a time, one hug at a time, and know that love and faith will get us all through.