Monday, February 28, 2011

Changes in a Schedule

I really hate a change in schedule not because of the change but because I know what is going to be coming with my son when there is an unexpected change.

Today was a good example of a bad schedule change:

Monday nights are riding lessons (horseback).

The usual schedule:

Pick up grandkids from school, pick up son from school, go home and verbally remind my son that he goes horsebacking riding.

I then give him his afternoon pills.

Husband/dad gets home and then daughter arrives to pickup her children.

We hed to the car as husband/dad heads off to school.

Should be simple but it wasn't today:

husband/dad worked late, daughter called and was gonig to be late.

That was all it took - those two simple changes made for a horrible 30 minutes.

No one was where they were supposed to be.

So he sayd: Im' not going

Mom: yes you are going.

Son: no I'm not it is s free country

Mom - drops it for a little while to see if there is any calming. Did it help? no!

It has been up a notch. Yelling has entered picure and a cuss word here and there but then came the meltdown! He slammed his door so hard he knocked a picture of the wall that hit the piano.

I don't know if he had seen me so upset before. It was like a slap in the face - he was okay after he had picked up and then that was over. He got dressed was talking a teasing and ready to go.

I know it is going to be okay in the end it is the middle that I hate.

From my world to your....

Mary

Wednesday, February 23, 2011

Milestones

Miletsones come in many different shapes and forms and are so very exciting when they occur and my son had one Monday evening.

This milestone occurred at his horseback riding lesson.

In order for it to make more sense let me give you some back ground information.

Routine is very important for an autistic child. No changes and no surprises. If there is a change or a surprise they will want to get out of the situation as quickly as possible.

When my son first started his riding lessons it was the trainer, an assistant and my son. Later another assistant was added. This addition took about 7 months months before the other assistant came along. When she first came my son made sure the lesson was cut short.

With these things in mind let me tell you what happened Monday.

We arrived and noticed there was an extra car there. Yes, he notices small changes like that.

As we walked through the barn there was young girl getting ready to have a lesson and her father was there.

The trainer told my son he would be working with the assistants. He didn't back away or turn around and leave. Rather he went to his horse, mounted, and followed the assistants out into the field.

Even when the lesson was over he stayed on his horse and walked him around some.

One assistant had brought 2 dogs that she had rescued and my son is an animal lover. He volunteered to help her get the dogs out of the stall. I took his service dog out to the car.

He helped her with the dogs. Then the other student came over to look. My son did turn around and walked away. The young girl said something to him. Even though is back was to her she answered as he walked away.

Yes, these were two major milestones. He didn't turn around and and leave when he noticed two new people there and he actually answered the young girl.

The are simple tasks and go without saying for us but for someone with autism it is difficult. A year working with the horse helped get to this miletsone.

Something so simple is a great leap and I'm so thankful for that and grateful that I was there to see it with my own eyes.

From my world to yours.....

Mary

Monday, February 21, 2011

It's in the eyes.

There is a certain look that you begin to recognize and it is not a look that I like to see.

There is just something in his eyes that says: "I don't want to go to school so I'm going to look like I am sick."

How he does it I'm not sure how he does it or when he actually starts but it was there this morning.

I turned around and saw it and I immediatly said: You are going to school!

Pretty soon he was rubbing his eye, then asking if his eye was red (Of course you've been rubbing it), then all the way to: I have pink eye and I can't go to school today.

No you don't but just in case I have some medicine for pink eye.

But he didn't have pink eye and I realized that in something that he said.

Me: I don't have money to take you to the doctor for pink eye.

Son: You don't go to the doctor for pink eye.

There it was - he didn't have pink eye.

He continued to say that his head and eye hurt.

So I gave him tylenol.

After that he started the old trick: You don't love me.

Son: You don't love me.

Me: If I didn't love you I would let you do whatever you wanted.

Son: You don't love me or you would believe me.

Me: I know that you don't want to go school and that you probably do hurt, but you have got to go to school.

Now he is a negotiator and it went something like this:

Son: I'll go to school if you pick me up after first hour.

Me: No comment.

Son: I won't go unless you tell me that you will answer your phone.

Me: No comment.

Son: I'm just going for first hour.

Me: again no comment.

Finally we got down to some of the nitty gritty. I told him he had to go because he had to pass art and he wasn't going to if he didn't attend and o his work and turn it in.

And to be honest not only did he have a meltdown but I had one too.

I guess my meltdown was bigger than his meltdown because he told me he would try and stay all do long.

So now he is at school and I have informed all his teachers what is going on.

From my world to yours....

Mary

Sunday, February 20, 2011

Food

Food can be such an interesting topic. Some people eat to live and some live to eat. Where does autism fall in all this?

Cycles. Food cycles to be exact. I always thought my son was the only one to eat one food for days, weeks, and sometimes months. Then he would switch foods.

I thought that until his doctor said she didn't know how parents worked with this type of eating.

What? I'm not alone? No and neither are you.

Here are some of his foods that he cycles:

Pizza. Not just any pizza mind you it has to be pepperoni pizza. And can it be from anywhere? No that would be too easy.

He would ask for a pizza for lunch, dinner and breakfast.

It would get to the point of buying 2 pizzas on Saturday so we would have enough on Sunday.

Now people might says - just don't give him anything else and he'll eat what you are serving.

It doens't work that way. I have seen him go 2 days without eating!

I don't know what it is but they have to have what they want to eat.

We have just left the pizza phase and that has been going for months.

I'd take pizza to school for lunch. We would buy a pizza on the way to a doctor's appointment. Buy one on the way home from school. Pizza was everywhere.

Now we are on McDonald's saugsage biscuits and Butterfinger Blasts from Sonic.

While he is in his early morning gospel class I run to McDonald's and buy 8 sausage biscuits. He will eat 4 at a time. I'll buy 8 so then he'll have 4 to eat before he goes to bed. He doens't eat them after school because that is when he has to have his Sonic Blast.

When he was younger it was fish sticks with 3 times as much ketchup as there were fish sticks.

Scrambled eggs are another cycle. Not just scrambled but scrambled eggs that are cooked all the way until they are dry. Then they have to be covered in pepper! Every little piece of egg has to have pepper on it.

Once it was chili and cheese. Not just a little cheese either. Cheese had to be melted into the chili and then there had to be melted cheese on top. Let me tell you - that was quite a trick sometimes.

Nachos. You got it. Doritoes covered in cheese. I sometimes thought I should just put a bunch of cheese on a plate and melt it and hand him a fork.

You may be thinking how in the world do you pay for this? That is a good question. I save every dime and I'll buy him food before I will eat out. Extreme? Maybe?

But this is my normal.

From my world to yours.....

Mary

Friday, February 18, 2011

Will I Jinx It and Driver's Ed

Everytime I have said: "We've had a couple of pretty good days" it seems to go down hill in the very next moment.

So I hestitantly say: "We've had a couple of pretty good days!"

He has gone to school without argument and actually stayed in school all day yesterday and today.

He has not argued with me and we've had some good laughs together.

With that being said I sure hope tomorrow will not go to pieces.

I received an email today about ABA - Applied Behavior Analysis.

It was forwarded through a couple of support groups until it reached our support group.

She has recently graduated and has her own business. She will come into your home and help you with a behavior plan and will also consult with your school.

I did contact her and I will send her more information on my son. She only takes military insurance but has a reduced rate for private pay.

I've worked with with a person who specialized in ABA and they are wonderful and work perfectly with the school system but that time it was with a nonprofit agency.

To be honest - it would turn me into a nervous wreck for her to come into our home because I know that I have a lot of improvement on my part.

I would love for her to consult with the school.

I don't know if this is just in my state or every state but we applied tot eh State Department of Rehabilitation.

They not only help with finding work but they help with Driver's Ed and school.

We did the intake Wednesday and we should have the paper work to sign next week. Once I send that back in then the instuctor will interview my son and decide if he thinks he is ready for the driver's ed training. If he thinks he is ready then they will help him not only to drive but study for the written exam.

I do hope they say he is ready. I don't want to get his license right now but his driving permit.

From my world to yours...

Mary

Wednesday, February 16, 2011

I should have known.....

Or should I have known?

Yesterday morning my son was not very excited about going to school. I was giving him his time line as to when we would be leaving when...

In kind of a "poor me" voice he said:

"Mom, I'm going to go feed the cows."

He never tells me when he is going to feed the cows and I usually have to remind him. Should a danger signal gone off in my head? I still haven't come to an answer on that question.

To continue,

A few minutes later he was outside my door crying:

"Mom, hurry."

Never the words I want to hear.

I stepped out of my bathroom to see, what on his forehead, but blood. He said he tripped and hit his head when he was feeding the cows and now there was no way he was going to go to school looking like that.

I clean up his face and told him he looked fine now lets go.

If you're wondering "did he make through the day?" No he didn't. Just half of the day.

This is not the end though.

I came home last night after teaching my class at church just to hear:

Son: Mom remember my long sleeved shirt?

Me: Yes, why are you asking?

Son: It was torn to shreads when I was feeding the cows. I leaned in to pour the feed and caught my shirt on the barbed wire and now my shirt is gone.

My first response was: You are going to school tomorrow so go find another shirt.

That was no easy task since he only wears two different shirts and he hasn't worn his other long sleeved shirt in two weeks so he didn't know where it was.

Is he abnormal of hurting oneself to get out of school a normal in my world? I think it is.

From my world to yours...

Mary

Monday, February 14, 2011

Transitions

I don't know the official definition of "transition" but for us it is moving from one activity to another and it isn't easy.

It seems like it should be. We do it all the time every day. We take kids to school, go home, go to work, go shoppping, make phone calls and the list conitnues. For us it is a realitively simple thing to do. You finish one activity and start the next but for our kids it is not so simple.

My son does not transition well at all even if it is something he wants to do and enjoys.

I have many examples but here is one off the top of my head:

He has therapy horseback riding on Monday evenings. He loves it and I love watching him. The first time he galloped he had the biggest smile on his face. It was a moment to cherish.

So it should be easy and I wish it was but after school he is usually getting rid of tension by working with wood, stacking wood anything that is active. Then if I don't prepare him when it is time to leave he will put up the biggest fit you have seen. Why - because he can't just leave one acitivity to go to another. I wish I knew why or understood a little bit better but because I don't I've learned to prepare.

You may be wondering how I do that - let me tell you. For horseback riding I start on Sunday reminding him that he goes riding on Monday and I tell him he is going to go and he tells me yes he is going to to.

Again on Monday morning I tell him he has riding and he is going to go. I also remind him that we need to leave by 5:30 and he is going to go. He again tells me that yes, he is going to go riding.

I pick him up from school and tell him yet again that he has riding. As the time draws closer I give him increments of time. We are leaving in 30 minutes, 15 minutes now we have to leave.

During that period when I am infoming him of how much time we have before we leave he is telling me that he doesn't want to go and I can't make him.

He doesn't want to do this any more can't he stay home. And continues until we are in the car, that sometimes is a miracle in itself, and are half way there. Now he is relaxing and thinking about riding.

Once we arrive he is ready.

What is the new normal here? I don't just remind but I have to prepare my son days in advance.

This difficulty in transitioning really was made clear last year in school - changing class rooms every hour. Boy those were hourly challenges for the teachers and if they didn't understand then it was more than a challange.

When the bell would ring he would not leave the current classroom to go to the next class. He could think up any reason to stay. He needed to sharpen his pencil, stop and talk to the teacher about history (one of his favorites) or just stand around.

Some teachers would walk him to the next class and that helped out tremendously. Several teachers would just tell him it is time to go, so get.

It must be a living nightmare for kids with Asperger's Syndrome or any form of autism to transition 7-8 times a day.

Sometimes I even start reminding him that Sunday is coming up and we are going to church.

Preperation is one of the keys. How to prepare is often discovered during prayer to our Heavenly Father.

I have another thought to post so until then

From my world to yours......

Mary

Sunday, February 13, 2011

The BB gun and the oven

Interesting topic isn't it? And what a story, but first these thoughts...

He is in his teens so he should be able to stay at home by himself, right? Well, you would think he could.

I was pondering this all day yesterday. We had a meeting last night at church. Do we both go or and leave him at home or does one of us go to the meeting and the other stay at home?

Our decision was based on looking to the past and that brings us to the BB gun and the oven.

One of our other sons had come over and worked with his brother and was going to take him out to eat lunch and show him his office.

My older son called me and said that his brother did not want to go eat with him and wanted to know if he could leave him at home alone.

Of course, what could happen in an hour and I was only 5 minutes away.

When I started home I received a phone call from my son:

Son: (crying hysterically) I didn't mean it.

Me: You didn't mean what?

Son: I didn't mean to do it.

Me: Is the house on fire?

Son: No.

Me: Are you okay?

Son: Yes.

Me: Okay then we'll handle whatever is it that happened.

When I walked in the hosue he was by the oven and the glass to the front part of the oven was all over the floor.

He tried to tell me what happened (this is one of the times that you don't believe) and I just said, yes hmmm.

We cleaned it up.

Later that night we learned that he wanted to try shooting the BB gun in the house and just wondered what would happen if he hit the oven. Surprise - you break the glass.

I thought for sure our oven was toast (no pun inteneded). I thought that thick glass kept the heat in the oven and didn't let it out.

Nope that isn't what it is for - the heat stays in the oven even without that glass.

I did find out what the glass does. It keeps the oven door open! I found that out the hard way when I was removing a dish from the oven. I opened the door and reached in for the dish. What did the hot oven door do? It burned me as it was trying to close!

If you're wondering if we replaced the oven door let me tell you. No we didn't. It stands as a reminder and the fact that it is too expensive to replace.

I thought back also to the time when I ran up to church for a women's meeting, just 5 mintues away, and left him home.

I gave him strict instructions: do not turn on the oven, do not use the stove, do not use the microwave, do not cook on the stove, and you can sit and watch your television show.

I received a phone call from him. He was so proud of himself. He didn't cook on the stove, no he didn't. He lit the grill and cooked scrambled eggs on a frying pan on the grill. Actually he did a good job of it too.

But none the less we decided that one of us should stay home and the other attend the meeting.

What is normal for other familes is to leave the children at home when they reach a responsible age. That would be abnormal for us - to leave him home even though he is a teen ager.

Is there a new normal here? I think so - the new normal is to work towards being able to leave him home for awhile when he is 17?

From my world to yours....

Mary

Saturday, February 12, 2011

To Believe or not?

That is the question. Do I believe what my son says or not. You're wondering why I am asking this.

A couple of years ago it seemed like everything he was telling me was a lie. It was really bothering me.

So at the next appointment with his therapist I ask her if he was a habitual liar. To my relief she said no.

She explained that their reality is totally different from our reality and they will do/say anything to keep from being yelled or or getting in trouble.

So how do you tell the difference? That was the question I forgot to ask and that is what causes me trouble now.

I don't know when he is telling me that is coming from his reality or if it is in the "real" reality.

One example is school work. He will do anything so he doesn't have to write and sometimes he just doesn't want to do any work.

Yesterday one of his teachers told me she was giving him some make-up work to do and what to look for when he got home.

He got in the car, I asked him about the work, and he told me that he had turned it all in.

Do I believe or not believe?

As soon as I got in the house I emailed his teacher but I guess she had already left because I didn't receive an answer.

I then wen to his notebook and found the book but no papers to work on. So did he really turn the papers in or throw them away? I just don't know.

So what is the "new normal" for these situations?

Partly, I think the "new normal' is try to check everything he says and another key is in how I ask the question.

Instead of asking: "did you feed the cows?" I need to ask: "What time did you feed the cow?"

Totatlly avoiding a Yes/No answer.

The new normal could be: when do you believe and when do you continue to check on what he says.

From my world to yours.....

Mary

Thursday, February 10, 2011

Taking medications

I give my son a pill and he swallows it. Easy isn't? No it isn't.

My son never takes one pill he takes 6 in the morning, 2 in the afternoon and 6 or 7 in the evening before bed.

He swallows all his pills at one time - which just always amazes me. But what is even more amazing is that he can hold the pills under his tongue, drink water and never swallow the pills.

I learned this the hard way.

One evening I gave him his pills while his back was towards me. I gave him his pill in his little cup and he put them in his mouth. Then I handed him a cup of water and he drank it. All seemed good.

He can't sleep without taking one of these medications. Literally, he would go and go and go - worse than the EverReady Bunny (don't know if I got the spelling correct or not.)

The medicine that helps him to sleep also tells his stomach that he is starving. Thirty minutes went by, one hour went by and still he wasn't hungry nor did he look sleepy.

After a couple of hours it hit me. He didn't swallow the pills! How in the world do he put them in his mouth, drink water and then spit them out! I may never know how he didn't this.

My new normal?

He must face me when I hand him his pills, stay facing me when he swallows the pills, and then he has to lift his tongue so I can look in his mouth and under his tongue.

From my world to your world....

Mary

Wednesday, February 9, 2011

I should have remembered!

Yes, I should have remembered the clothes!

The other night I asked him to put his clothes in the washer. He told me they were clean.

He attends an early morning church class for high school students in the mornings before school - after that we go back home and have an hour or so before school - works out great.

Well... we got home from that class and I noticed him laying on the couch covered with his blanket.

It was like I heard a warning bell going off in my head.

I asked: Do you have your clothe on?

Son: No they are dirty.

Me: running the clothes to the washer to get them started.

They weren't dry in time for him to get dressed for school and he said he wasn't going to go - but I found another pair of jeans and told him to get dressed.

If you're wondering why would I be worried about his clothes let me tell you.

He wears the same thing every day. Same shirt and jeans so they have to be washed often.

Hopefully I'll remember next time he tells me his clothes are clean!

From my world to yours......

Mary

Monday, February 7, 2011

Alarm Clocks

Alarm clocks are simple things aren't they. We set the time we want to get up and then when the alarms goes off we moan and groan and then get out of bed. Right? Well you would think.

Nope, there is a new normal for an alarm clock!

My son was up at 2 a.m. this morning. Not because he couldn't sleep but because he set his alarm clock for 2 a.m. Why you ask? If he gets up at 2 a.m. then he will be too tired to go to school!

If you're wondering I did get him to school. And told him to stay!

My new normal now? Check his alarm clock to make sure it is not set after he has fallen asleep!

From my world to yours....

Mary

Sunday, February 6, 2011

Doctors and Nose Bleeds

I told you in my last post I would share the story about the doctor and the nose bleed.

He has several doctor appointments every month sometimes up to 3 in one week.

You might be wondering what is so important about the appointments other than just being a doctor appointment. Let me tell you....

The appointemnts have to be times "just so." He hates going to school and getting him back to school after an appointment can be and is challenging. Hence the times are important.

With this doctor we were trying it on his lunch time. I bought a pizza, picked him up from school, and off to the doctor. I was speaking with the doctor when he poked his head in the door. I knew he had been blowing his nose - actually - everyone knows when he is blowing his nose, it is not a quiet blow.

The doctor mentioned that it looked like he had a nose bleed. I'm thinking in my mind when she says that, "please don't say that you don't know what can happen."

He left and I told her that he can cause his nose to bleed and not just a little bit either. She shook her head acknowledging my statement. Okay don't believe me.

We left her office with his prescriptions and we went into the waiting room because she wanted to talk to him. He wasn't there. We looked around and then I noticed the bathroom door closed.

I called to him through the door and asked if he was in there. Yes, he was. This is what transpired:

Me: Open the door.

Son: I can't.

Me: Why?

Son: I have blood on my hands.

Me: What is happening?

Son: I have a nose bleed.

Me: Okay reach over and unlock the door.

Son: I can't.

Now during this conversation with my son the doctor is standing there and the receptionist is trying to figure out how we can unlock the door. There is no key!

Me: Get a couple of paper towels and open the door.

Son: Okay

Door opens.

Oh my, if it had not been my son in there I think I would have been sick at my stomach! There was blood everywhere and I mean everywhere in that bathroom.

He was bent over the toilet, the water red with blood, blood on his hands, all over his face, on the mirror, on the floor, on the door, on the toilet paper and a couple of places that I didn't see immediately.

I got him basically cleaned up and then started on the bathroom. Fortunately the doctor was a good sport about it and was helping me. I threw away the toilet paper, cleaned up the toilet the doctor was working on the sink and the mirror. Then we were both working on the floor and the door.

I then told the doctor - Nothing like first hand experience!

Well, of course he didn't go back to school, blood was on his clothes and the doctor said maybe he had better stay home!

New normal? Don't tell him it looks like his nose is bleeding or it soon will be!

From my world to yours...

Mary

Saturday, February 5, 2011

Clothes

Clothes seem like a simple thing don't they? You wear clothes according to what you are going to do for the day or you change clothes a couple of times a day. Simple right?

Oh but they can be used or not used for so many more things.

One day I finally got him to school and we were talking to the counselor and asked him if he could make it the rest of the day. I know you're dying to hear his answer, ready? He said, "I can't go to class, I don't have a shirt on."

What did I learn from this? My normal now is to make sure he is wearing a shirt under his coat!

What can they be used for? He has been ready to get his hair cut and of course we forgot to take him, but there is still time for him to get his this evening.

I came in the front door and said to my husband - you've got to take him to get his hair cut.

Simpe enough right? Wrong. As husband ran an errand he put all his clothes in the washer and then took a shower. How can you go anywhere if all your clothes are wet?

But we changed the normal - go put your dress pants on and shoes and go get your hair cut!

Now my normal is to make sure he doesn't start his laundry when he needs to leave! Besides that - the washer was full and he had it set for "small load." It doesn't take long to check the washer for the load size, it is the remembering to check the washer load.

From my world to your world - have a great day.

Hmmm...... I think I need to tell you about nose bleeds and doctor appointments, next post I will do that.

Mary

Friday, February 4, 2011

What is an Autism World

That is a good question. An autism world is when you get so caught up in your child with austism thinking about doctor appointments, school, where are they, counseling appointments - you get the picture - that your world revolves around autism.

You sometimes get so caught up in it that you don't think about taking care of yourself, or your relationship with your husband and the other members of your family.

It can become exhausting and finding the balance is the key. This key to balance I have found is prayer with my Heavenly Father, asking for help and guidance. Even then I will find myself off balance at times - not because He doesn't answer prayers, or doesn't guide, but because these trials are for me and I'm to learn from them.

I have a son who has Asperger's and severe learning disabilities. Those in themselves are enough but then you add ODD, anxiety, and possibly bi-polar and the mix is sometimes overwhelming.

When there is a child with a disability in your family you find yourself creating a new "normal."

We met with a lot of other families affected by autism and found it nice to know that my "abnormal" every day life was normal! Do you know how good that is to know this! Wow what relief!

Let me give you an example of my normal:

My son eats pizza every day of the week. Literally! So much so that the pizza store recognizes our voices on the phone! That proably isn't normal for others but for us that is totally normal!

Well on to Autism World. I'll try to share what it is like an share my abnormal - normal!

I don't know how many times I will post, but please feel free to comment whether you are asking a question, offering your advice or just need somewhere to vent where you know we will understand and not judge.

So until my next post friends ......

Mary