Long overdue update

Sorry it has taken me so long to update you and how things are going and how my son is doing.

The outpatient hospital is wonderful.  The teachers are great the therapist are great.  He is learning that he has to be around people and participate.

Is he ready to go back to HS.  No I don't think she.  He is a master at munipulating and he has got to stop it or everyone learn how to turn him another way.

For myself - I am tired.  My day is broken up into hours.  It takes 2 hours to take him to school and pick him up.  I take aerobics for times a week for my fibromyalgia.  I have finally decided I'm just going to have to stink the rest of the day because if I take a shower when I get home I only have about an hour to complete something.

I hate the fact though that during Christmas break he will be on shortened hours - no time off.  He'll have to be there at ten but I'll have to have him there by 9:15 so I can make my aerobics class.  I hope they can do that.  If I miss too many days it makes walking extremely difficult.

I would like to ask that you keep him in your prayers.  So much better to learn these things in a safe place then out in the hard gruel world.

from my world to your world......

Not a good week

This has not been a good week whatsoever.  He will be going into an outpatient hospital this week.

He is scared and I am scared.

I told him he would have to be like the people of the City of Enoch - be so righteous that everyone will leave him alone.

I will post more when I know more.

From my world to your world......

Will I survive this?

The principal called me this morning and said apparently there was more happened yesterday that he just found out about some of it last night and some this morning.

He said that son actually opened the knife in school.  I am to keep him home until he finds out what exactly went on.

Actually, I am in tears.  Why why why?  I may be asking myself that a question for the rest of my life.

From my world to your world.......

Sara

You really thought that.....

I guess he really thought that if he took a knife to school that they would suspend him and send him home.

Not!

These principals are great.  They knew that he brought a knife to school in order to go home.  Nope, we made him stay in school.

And if he doens't shape up he will be going to school on Saturdays!

From my world to your world....

Sara

To Avoid Confusion

My name on this blog is Mary - I am changing it to match up with my crafting blog Two Mules for Sister Sara.  Yes, Sara is name and if you are following both of my blogs you won't be confused.

From my world to your world...... (hopefully I have not confused both worlds!)

Sara

I only thought

It was going to be a good day.  Things went fine this morning and during the woodworkign class.  But then when I picked him up he was fourious.

He threw my door open and put the dog in and then said he was going back into school.

I parked and went in - it was not a pretty site.  He was mad becuase no one said:  Yes, stay home from school tomorrow becuase it is your birthday.

Oh he was cussing and kicking the chair in my car.  So I decided to drive straight to his therapist appointment.  Didn't want to get hom and fight to get him back into the car.

We waited about an hour.

First thing discussed was that I was unders to much stress that I needed my own therapist to help me sort things through and to figure out how I can get help with someone watching his service dog while in woodworking.

To make this long story short - he was not a happy camper when we told him he was going to school.

All the way home:  how I hated him, how he was going to run away, I didn't love him I only got him the dog so he would be quiet.

I called husband and told him I was going to need help and that son was going to school tomorrow.  Husband called back and said he didn't see anything wrong with son staying home.  I explained that we could not give in now.

Later this evening husband said:  Son you are going to have to pick another day to stay home.

But then husband told me that son was having some problems with a kid saying some very disgusting things.  Husband had better call the principal in the morning!

All is calm not but I am tired!

From my world to your world......

Mary

Latest Doctor Appointment

Of course he didn't want to go to the the psychiatrist appointment - what's new right?

She always calls me in first.  I told her she needed to look at his hands and arms.  She was going to see a lot of scabs from his anxiety.

And I informed her about the tremors that I was seeing but didn't know if they were happening at school.  I can't seem to get the teachers to let me know if they are seeing any tremors.  Maybe they aren't so they don't feel like they need to tell me anything.

She was in somewhat of a quandry.  Change the anxiety medication or try and change the medication that might be causing tremors.  We went with the change of the anxiety medication.

We were supposed to have a meeting this Tuesday for a change of placement.  The principal is thinking of giving him Friday afternoons off from school - which I was the one who originally suggested that.  But then son's therapist said she just was not the therapist for our son but she was a family therapist and she does not want to let son have Friday afternoons off because she wants me to have some time for me.

I am really torn here.  I'm the mom I should be doing what is necessary for my son's success.

On the other hand I have an autism conference I really want to attend - if son is not in school I can't attend the conference.

I have been invited to be a break out speaker at a special education conference.  If son is at home then I won't be able to accept that invitation.

So I don't know what we are going to do.  The school wanted all dr. appointments after school or before school.  To be honest that is killing me.  When school is over son is ready to go home so it is not always plesant to take him to an appointment.

The therapist would like for son to have mini breaks during the school week - the therapist appointment and the rehab therapist appoiontment - on different days of the week each week if he is working hard in class.

Now again on the other side the principal wondered if that would really work because son needs consistency.

We had the meeting set for Tuesday at 11:15 but the principal is going to be out of the building so I'm not sure what day the meeting will be.

They should be contacting me tomorrow.  I really hate these decisions!

From my world to your world.....

Mary

Major meltdown at school yesterday.

He tried so hard to make it all the way through the week. 

His therapist and I agreed to give him a reward that he really wants.  He goes to school all week and then on Monday dad is picking him up early and will take him to get his driver's test.

It started Thursday night when he did not sleep at all.  He was up and down all night.  I was emailing his principal at 4 a.m. to give him a heads up that it was going to be a bad day.

He was hurting so I took him some tylenol.  That helped and he went back to class.

Then when it was time for me to go back up to the school to sit with his service dog while he went to working, I receive an email from the principal that he needed to talk with me.

I got there and son was already in the back office.  So the principal and I went to another office.  Son had a major meltdown.  He first started out angry (one friend that he has in a class that will actually talk to him was moved, because they talked) then he ended up in a ball on the floor in tears just crying.  His service dog walked over to him and sat next to him and looked at him until son looked up and then started petting his dog and calming down.

Son calmed down but remained curled up on the floor with his dog.

We discussed several things.

Go ahead and take him out of the class because the teacher will not win him back over.

Shorten his school week.  Have to be careful there - that will change his graduation date - which would mean he would graduate around the age of 20.  I would want him to "graduate" with his class just to go through the motions and then continue on with HS.  Hopefully that made sense.

He will go to his history class this semester instead of next semester to replace the computer class that we will be take him out of the that class.

So of course we have to have another meeting.

But back to Friday.  We sat and talked with son and gave him the option of him leaving school for the day (which the principal and I decided was probably best), go with me to the dr.'s office to pick up some things, or stay at school.  He chose to go with me.

While we were at the dr.'s office son wanted to go down to the concourse to find a vending machine.  No way.  I could just see call the security office sending people out looking for a boy and his dog that were lost in the huge hospital complex.

He wasn't happy with that - but once we got in the car the Spirit whispered - ask him if he wants to go eat at On the Border Mexican restaurant.  Boy did his face light up.

We had a relaxed time eating chips and dip and beans and rice.

We are not leaving him alone at all this weekend.  We'll have limitations but we want him to have a nice relaxed weekend.

In fact he is still asleep.  So far he has been asleep for 11 hours.  I'd love for him to be able to sleep a couple of more hours.

From my world to your world.........

Mary

I can't believe I did this!

How many times have I gotten onto my blog and updated added something or just read my blog.

What did I notice today?  That I spelled Autism wrong!?!  How  in the world could I have done that?

so instead of autismworl my blog is Austismworld.blogspot.com.

Does anyone in the world know and can tell me how to correct the spelling on my blog name?

From my world, my very world mispelling world.... to your world....

Mary

This week's update

It has not been a good week.  Monday seemed fine until it was time to go horseback riding.  He didn't want to go.  When we got there he was rude and mean and only rode the beloved horse one time.  Then on the way home he proceeded to tell me what a bad mother I was and that I didn't care that he had been burned by another kid with a cigerette lighter and that he needed to stay home just one day.

Of course when I got home I emailed the principal and when read my email he was able to put everything together.  He had heard about someone with a lighter that burned another kid.

Then today he called several times - I wasn't home - and when I got the messages he told me that his dog was acting up and that she needed to come home and if she couldn't stay at school neither could he.

So I drove up to school and spoke with the principal, that is after I spoke with the therapist and the rehab therapist, and we felt he was making the dog act up.  He was given the choice of staying at school with the dog or staying at school without the dog.

He stayed.

I'm tired - but all is well that ends well.

From my world to your world........

Mary

Another update

I am always afraid to say that things seem to be going good because I am afraid I will jinx it. 

But things do seem to be going pretty good.  No fight yesterday or today about going to school.

I am a little overwhelmed myself though.

I have been picking his dog up from school at different times each day and I am always worried that I am going to forget or get something wrong.

His rehab therapist was there yesterday observing him.  He must not have realized it since it didn't say anything after school and that is a good thing.

The want him to have 2 appointmnets a week now - and both will be after school.  One appointment will be with the rehab therapist and the other will be with the therapist.  While he is with the rehab they want me to meet with another therapist for ideas to use at home.

If we make the appointments at 4:15 and end at 5 that should be okay.

Today will be the first day that he has her during lunch.  He doesn't eat in the cafeteria rather he goes to another special ed classroom and eats with them.  So today he is to go there, give the dog some water, take her out, got back and eat and then go on to class and then I will pick her up.  Then about 2 hours later I will take her back and he'll finish the last hour with her.

From my world to your world.....

Mary

Udates - might be long.

The meeting went great.  The superintendent said she saw no problem with having the dog in the school.  I told her how I wanted to start the dog out slowly and they all agreed.

The director of special ed was great.  Everytime someone would say:  "We'd like for him to eat with everyone, or we'd like for him to develop some friends."  She would interject that this was the nature of autism - they have a hard time making friends and would like to just be alone.

We have to get liability insurance for her, son is in control, if he can't control her - and before the read the rest of the sentence I said:  You have every right to remove her and have me pick her up.

So that part was great.

But when I picked him up he was walking from a different part of the campus.  He was really upset when he got in the car.  The 7th hour teacher made him walk with her to the area where the kids ride the bus.  That was weird since he doesn't ride the bus.

We reminded the principal of that this morning.

Once he calmed down things seemed to go a little bit better.  We were watching our favority show when he said:  Lying to a disabled person is just unheard of.  We both cracked up laughing.

But he kept telling me he wasn't going to school today.  He said that all night long.  After I gave him his night pills he barracaded himself in his room.  I wasn't concerned too much about that because I knew he would get hungry and would have to come out.

He did take everything down but he was in tears.  He must have cried for about an hour.  He finally told me that some other boy was really giving him a hard time.

I really wished I could have taken him in my arms and say that everything would be okay and that he wouldn't have to go to school.  But I know he has to go.

This morning he continued to tell me he wasn't going.  Once I knew that his morning pills had kicked in I told him we had to meet with the principal and that we wouldn't take anything with us except his dog.

So of course he put on old clothes and we went.  We met immediately with the principal discussed our options, coped with son not being too nice, and then he was given his choices:  he could stay at school with his dog or he could stay at school without his dog.

He was trying to keep me from leaving so I just walked around the room instead of trying to push by him.

I went to the car and got the dog's backpack and brought it back.  The secretary took it to him and said he was doing fine.

I picked up his dog at 11:30 and dropped off a pizza for him.  They are going to look for a place for him to eat that is not so noisy as the cafeteria.

I take the dog back in about 30 minutes for the last hour of class then I come back home, then leave again, pick up another pizza for him, pick him and his dog up from school and take him to  his therapist appointment.

It looks like I will be going to the school about 5 times a day for a couple of weeks.  But I'm a mom and that is what moms do - help make their children successful.  Although, I must say I am planning tomorrow to get everything I need for next week because I won't be making any runs into the city or to the stores.

From my world to your world.......

Mary

I have a meeting!

This afternoon with the superintendent of schools, the assistant superintendent of schools, the director of special ed, and the hs principal.

I had a very hard time getting him to school this morning.  I told him if we left early enough that we would stop by the administration building and give the letter to the superintendent.  She wasn't there but boy were they passing that letter around to different people.

Then we left to go to school.  Son did not want to go unless his dog could come with him.  We went in and waited to talk to a principal.  We talked for about 10 minutes and I gave son a choice.  He would go to class as his dog and I left, or he could stay and talk while his dog and I left.  He kept trying to make deals and finally I said - since you are not making a decision I will,  I got the dog and left.

The therapist wants to use rehab instead of his dog.  I want to use both of them.

Then about 30 minutes after I got home the superintendent called and wanted to know if I could meet this afternoon.

I switched his appointment and will be meeting with them.

From my world to your world......

Mary

Can I Do This?

He is already sitting things up for not going to school tomorrow.  He said he head hurts and he is laying in bed in the dark.

Some good news is that he did not use bad language with the secretary.

He wants to take his service dog tomorrow.  I have written a letter to the superintendent and will deliver it tomorrow.

They are only allowed to ask two questions:  if the service dog is needed for a disability (duh!) and what work the service dog does is you can't see it.  In my letter I answered both questions but I think that I will add if his service dog is allowed to attend school with him we can cut back on all the absences.

I've got to remember that he was up at 4:30 this morning because he couldn't sleep.

The principal did fix his belt for him and he'll have to wear another belt tomorrow.

The stress of wondering if the phone is going to ring will it be the school?  The stress of wondering how hard it is going to be to get him into the car in the morning?  This stress is extreme.

I'm going to tell him to mention to the principal that he wants to bring his service dog to school and that I have written a letter to the superintendent about it.

I have a call into the regional Office of Civil Rights.  For some reason it seems to fall under them instead of the ADA - at least that is what the director of special ed said on Monday.

I was going through his papers today and realized that the teacher of record removed all modifications from his IEP.  He has two regular ed classes and will need those modifications.

Maybe because it isn't starting out well it will go better as the year goes on.

From my world to your world......

Mary

Update

I just received my first phone call.  He wants me to pick him up.  He said lunch was gross, his belt broke, and that he already cussed out the secretary that I had better come up before something else happens.

Then I asked him to let me talk to the secretary who spoke to me first and he was about to hang up when the principal got on the phone and talked to me.  I explained that he told me his belt broke and maybe they could fix it.

Okay - hang in there, hang in there, hang in there......

From my world to your world

Mary

PS  I am so sorry I fogot to say that in my last post.

1st day of school

He was fine until it was time to go.  After he brushed his teeth he called me into the bathroom and said he had thrown up.  He was bending over the toilet but I think he must have used his finger.

He wanted me to promise that I would come pick him up if he threw up in his mouth.  I told him I would pick him up if he threw up on the floor in front of someone.  What  a wonderful conversation.

I had his IEP meeting on Monday.  They said I would have to write a letter to the superintendent about his service dog.

Their answer has changed each time I have asked about him bringing his dog.

I emailed his principal and several of the teachers but I have not heard anything back from them yet.

I did tell him there would be someone there to walk him to each class.  When a class lets out she would be outside the door in the hallway and she would take him to class.

Hopefully, she will be there, if not I am really going to be upset.

School

School for us starts next week.  Summer has never been long enough for me.  I always enjoyed have my kids home.

And now here is my youngest about to start 10th grade.  I can't believe it.

I'm not supposed to worry.  That is what his therapist has told me - don't worry, because if I do worry then he will feel that and he will begin to worry about school.

But how do you not worry about your son, who will always be your little boy, who has never had friends at school, who has was beaten up during recess by his classmates, who gets so scared he doesn't care who sees him cry.

I wish I could just protect him.  I love him so much.

I took one of my other sons with us and we bought school clothes for him.  He should look pretty cool.  I bought him a messengar bag today.  I think he is ready, but I'm not.

I don't think I will ever be ready.

From my world to your world......

Mary

School is just around the corner

And I can sure feel the pressure.  I emailed the director of special services and asked if she would be contacting the necessary people for the IEP before school started or did I need to contact them.

I received a very short blunt reply that the teachers do not come back until the 18 and so it will have to be after that but she would make contact with the teacher and with the principal.

I replied and thanked her for her help and asked that she give me a few dates that would work for them once she made contact and then I would let her know which ones would work for me.

Son's therapist says for me to stay positive.  I really try but the stress of yet another IEP meeting and so much riding on it makes me feel really weighted down.

I've done some research such as reading the Department of Justice definition of Serivce Animals, contacting the Bazalon Law Center for Mental Health, reading the statutes of Oklahoma Law concerning service animals and trying to put that all into a readable format.  Reading when federal law overrides state law etc.

Now I am wondering how to put son's team together.  Do I use the same parent advocate?  Do I call Legal Aid or do I try and find an attorney that will work pro bono?  Do I even need an attorney?  Do I look for an advocate that doesn't cost too much money?

And then I have to remember to put it in the Lord's hands and listen very carefully for the Spirit when I am making these decisions.

From my world to your world.....

Mary

Research Research and More Research

Guess what I have been doing lately?  Yes, you got it Research!

The ADA, DOJ, and individual State laws on Service Dogs.

The ADA and DOJ (Department of Justice) have the federal law and they have explained that a service dog is one that performs work or a task.  Work applies to PSD/austism service dogs.  PSD is psychiatric service dogs.

Oklahoma purposely leaves out that verbalogy "work or task".  I have been reading the laws etc and have emailed a site with my questions and asking them if they could clarily the terminalogy that has been left out of the state.

Their opinion is that a service dog would come under the "accomodation" section of an IEP.  We will have to see.

I do enjoy researching but I do get caught up in it. 

Now I am thinking about making my non-profit not only for laptops, tablets, and programs available for asperger's syndrome kids but also making available scholarships for those who have a dog or think they have a dog that would make a suitable service dog, so they can have them trained.

I kind of did my first one today - no foundation formed yet, but did find a sponsor for a scholarship for a kid going to the autism camp this week.  The ball is in her court now.  If she calls the dog trainer or not is up to her.  If she does then I'll make sure the sponsor follows through - if she doesn't the sponsor will be more hesitant the next time.

Less than one month to go before son's IEP.  Where does the summer go?

From my world to your world.......

Mary

First Day of Camp

He really didn't want to go but went pretty willingly this morning.  Of course, I am sure that had something to do with the fact that if he wants a cell phone he had better not complain about going to camp.

This is a "trial" camp for teenagers with autism.  They go on field trips and work on their life skills at the same time.

Today they went to the zoo.  Tomorrow is the Omniplex.  Wednesday is an outdoor activity again.  It may not be a good thing with this heat.

I'm also researching service dogs for autism.  They are very similar to psychiatric service dogs.  The information I have found on the website for the Department of Justice seems to be pretty cut and dry to me.  A service dog performs work or tasks.  Mental work is work period. 

If the service dog helps him deal with crowds and transitioning from one class to another ........It seems pretty simple to me.  Maybe that is the problem - it is simple!!!

From my world to your world......

Mary

I have realized.....

That I have let him stay by himself too much this summer.  He doesn't want to go anywhere unless it is with his dad and then he wants to come right back home.

DH took him to a youth fireside the other Sunday and DH was upset when they got home.  When I asked why he said becaise son wanted to come home as soon as the fireside was over and didn't want to stay for the banana splits. 

I told son that if he didn't stay as long as his dad wanted to stay then I would start taking him or I would find a ride for him.  Hopefully, that "threat" helped.

Next week is a camp for autistic teenagers.  It is kind of a "test camp" to see how it goes.  Of course son does not want to go, but I am making him.  He thinks I should pay hiim $55 to go!

They are going to have a good time.  The zoo, science museum, a nature park, and swimming.  There will only be 5 kids going so that shouldn't be too bad.

From my world to your world......

Mary

Missing!?

Off on the 4-wheeler somewhere. 

My solution?  Take something off of the 4-wheeler so it won't start but don't let son know about it, but DH doesn't want to do that.  He thinks he can just tell him not to go on the road and not to ride at night.  Actually, husband thinks he can say this each time and then each time he wonders why son doesn't do as he asks.

Husband does not like my answer - you have to have a consequence and you have to mean it.

So, we're back to my suggestion.  Take something of the 4-wheeler so it won't start - then he can't ride the 4-wheeler in the street or in the dark.  Simple isn't it?  Well, one would think.

From my world to your world......

Mary

I don't want to go to the doctor tomorrow!

That is what he told me tonight when I reminded him of his doctor's appointment tomorrow.

I informed him that he was going.  He had to let her know how he was sleeping and feeling.  He told me that I could tell her that he was sleeping just fine.

Nope. Not going to do it. 

Well, he thinks he has figured out a way to stay home.

He is changing the oil in my car.  That is good it needs to be changed.  But what one thing would prevent me from driving me car tomorrow? Misplacing the bolt to the oil pan!

Yes, he did.  Dear Husband said he lost it.  Son said he misplaced it.  Not 5 minutes before this happened I asked my husband to please don't let him ruin my car.

I told him he had better find the bolt now and not sometime tomorrow afternoon when the dr. appointment would be over!

From my world to your world......

Mary

New Counselor

We finally had an appointment with the new counselor and it seems like it is going to work out.

She is going to attend the IEP meeting with me before school starts so that will be good.

Son really seems to like her and that is another good thing.

I never tell son that I think things are going to be difficult but the counselor said he can probably feel it so I need to keep a positive outlook for the coming school year.  I think I can usually be positive about things but I've struggled so long with the schools that having a positive outlook is getting difficult.

The counselor does agree that if we can get his service dog into the schools then it will open the door for other kids and their service dogs.

In a few months I have to start working on getting partial guardianship - not sure how that is going to work out.

Once son turns 18 I have no say in his education - which I think is just really stupid, so partial guardianship will take care of that.

Son went to our youth conference and I think he did pretty good.  The only times that I could tell that were difficult was when there was nothing for him to do, other than that I think he had a good time.

From my world to your world...........

Mayr

Oh I did it again!

I was going to remember to give son his afternoon meds about 5 p.m.  Then what happens?  He goes out and gets on the 4 wheeler.  I call husband and ask why he isn't home yet - good reason he just got off work.  I told him to hurry.

Husband said no problem, just go ahead and leave, I know son just went to get his pay for mowing a lawn.  Okay 5:30 comes along and I leave.  I get in the care and as I pull out of the driveway their is son with the 4 wheeler and the lawn mower behind it and he has "knifed jacked" the 4 wheeler and mower.
He was trying to tow the lawn mower home.

So I called husband and told him he had really better hurry home.  When he asked what happened, I told him and he was so upset.  Then he calls me back and asks where son was - well, he was on the street when I passed him. What I wasn't home?  Nope you told me to leave.

I guess everything was alright with the mower but needed to be welded together in a couple of places.

Now I've not go tell myself - never again forget his afternoon pills; never again forget his afternoon pills - over and over and over.

From my world to your world.....

Mary

I'm Going to Cry

I know I shouldn't.  But guess what?  The counseling office just called and they cannot give my son to the male therapist because he can only accept clients with sooner care!

Then why in the world did they first assing him to this therapist?

Now after getting past the crying part I have to sit back and remember that it is in the Lord's hands and perhaps the therapist he is going to have will be the one the Lord knows will work best with my son.

I've just got to remember that things will work out.

Now of course if I had really good insurance then I would not be going through the schools I would be going through a private therapist but since most insurances will not cover therapy for Autism I can't do that.

From my worl to your world....

Mary

Counseling

My son has counseling throught he school system.  We requested it in May 2010 and it finally began in October 2010.

However, he has seen 3 counselors since October and will now be starting his 4th counselor.  The first one was sick and had to quit.  The second one was fired, and the third one all of a sudden disappeared.

About a month ago a counselor called to see if we wanted to continue and yes we do; however, this was a man and my son never did well with a man. 

But upon thinking and pondering about it I decided that this may be a good thing.  He will probably have more insight into what it would be like for my son to take his service dog to school, understand the type of bullying that might occur and give him instsructions on how to handle things.

We have an appointment next week.  So I am hoping things work out.  I am not telling my son that it is a man that he will be working with.

Hopefully this one will be staying with the agency and things will work out.

From my world to your world.......


Mary

Finally feeling better

After being sick most of last week and hardly eating anything he is finally feeling better. He was sleeping 12 to 13 hours a night and not eating duirng the day - and this was after he temperature was gone.

He hardly ate anything last week and he is no back up to eating half of what he used to. 

Hopefully he doesn't get sick again this summer.

From my world to yours.....

Mary

He is sick

He hardly ever gets really sick but when he does he goes all the way!

He was up about 4 times Sunday night and Monday morning he had a fever of 102.  He has a headache, sore throat, and his back hurts.

They doctor didn't do a strep test but did put him on antibiotics.  He only thought he was better lasat night.  He was up for a while this morning and is now back in bed asleep.  It would be nice if he could sleep most of the day and wake up feeling fine.

From my world to your world.......

Mary

Well, I blew it, but I'm not telling anyone!

I blew it last night.  I wanted to see how my son did without his afternoon dexedrine.  I thought maybe with the 2.5 mg of namenda and his lithium things would go pretty smooth.

Boy was I wrong!

First, he lights the grill and then yells for help.  Why you ask?  Because he light all four burners and my dear husband had not emptied the thing that holds the grease.  So again you are asking me why he was yelling for help - well let me tell you - the grease caught on fire and it he grill looked like it was on fire.

He was only supposed to light the two middle burners.

Second he is getting the tongs out of the drawer - he agains askes dh to please come help it because something is stuck.  DH is tired so he doesn't get up to help son and guess what happens?  The drawer is broken!

Third, he gets out the french fries to put into the deep fat fryer and again I hear him yell:  "Were there two burners on?"  Guess what?  My daughter and I had both used the stove and so it was hot.  We had just turned off the burners and the lights were still red and he had put the plastic bags of fries on the stove and now there is melted plastic on my smooth top!

Fourth, he puts too many fries in the fryer and oil is splattering everywhere!

Never again will I try and skip his dexedrine! 

That wasn't even the end of it.  He went up to feed the cows and came back with blood on his shirt!!!  He cut his finger on the barbed wire fence.

Of course he had the key to the gate in his jeans but he didn't look hard enough so he climbed the fence!

But I wasn't about to tell anyone all this was my fault because I experimented with his medications.

So what did I learn?  That dexedrine still plays a vital roll in his daily care.  Yes, the namenda kept him calm but it didn't help his concentration like the dexedrine does.

From my world to your world........

Mary

Online registration for Jed Baker

Here is the link for the Jed Baker conference - No More Meltdowns

https://www.oslha.org/2011_Convention/NMMregistration.aspx

There is a $50 fee for parents.

From my world to your world.....


Mary

Catch Up

I'm still trying to play catch up.

I saw on the news yesterday a clip about parents being able to select which school they want their children to attend.  You have to have a certain income (which means you cnanot be rich).  It goes into effect in August just in time for school.

I'll have to look for more informaton on it.

Jed Baker will be in Oklahoma City June 16.  He is great and has so much information on children's behavior.  You don't have to have a special needs child.  I am looking for the registration information.  Once I find it then I will post it here.

From my world to your world.....

Mary

Long Time No Post - Sorry

Sorry it has been an entire month since I last posted.  This month has just been really busy and I've been running with it.

Trying to keep my son in school the last month was becomming a trial. He wouldn't go on Mondays and would come home early on  a day or two the rest of the week.

I worked on trying to get him on disability but what I got was an official denial so that I can try TEFA - which I have not had time to do.

Then it was time for his IEP meeting.  That was a basic nightmare/struggle/totally upsetting event.  The parent advocate that was going to attend with me broke her knee and I wasn't informed until the day of the meeting which left me scrambing to find someone to go with me.

I did find someone and she did help.

The classes are good:  woodworking, art, compouter apps, computer website building, history, math, and English.

But the behavior plan is a two edged sword that is not balanced but ready to strike down my son.  I wrote two pages of concerns just on that part of the IEP and turned them in. 

We are going to have another meeding before the actual day of school starts.

I promise I will post mroe soon and explain why a bad behavior plan is a dangerous plan.

until then.....

From my world to your wold......

Mary

Got Cereal?

I do.  About 10 large empty cereal boxes.  My son is now onto Cinnamon Toast Crunch Cereal and lots of milk.

And now you're wondering why I have all the empty boxes let me tell you.  I'm going to cut them up and use them for crafting.  Instead of buying cardstock I'll use these boxes in my die cutting machine.

He gets to eat and I get to craft.

From my world to your world......

Mary

IEP - its that time again...

IEP's not my favorite time of the year but very necessary.

I feel like I'm getting ready for a battle.

On my side I have:

Parent advocate
Transition specialist
Department of Rehabilitation
Therapist
and
Me

On their side:

She hasn't told me yet.  I'm going to ask again.

I've started a list of things that I want on the IEP:

Allowed to use laptop
Allowed to use programs downloaded on laptop
Abscences not counted against him - documented by letter from doctor
Service Dog allowed in te school

I know I have more things that I want to add so I am going to keep building my list.

From my world to your would.....

Mary

Bullying

Is raising its ungly head again.  There is another boy who is calling my son a stalker.  When I picked up son yesterday the principal said he would talk to the two boys together.

I don't think thtat is the way to take care of it - you don't put the bullied in the same room with the bully and tell the bully to stop.

So guess what?  Son would not go to school today.  I'm not sure what to do at this point.

From my world to your world.......

Mary

Oh!!!!

Oh I am upset with myself and with him.  He did not go to school today. He said ther is a rumor and he said he had finished his work at school.

I still have not confirmed the rumor but I have confirmed he didn't finish his work.

I'm just really upset with him and me.

Namenda

Okay, so you're wondering if I finally lost my mind and can't even talk any more.  Let me assure you this is not the case.

I heard on the news a month or 2 ago that there was a drug that helped Autistic people form their thoughts so they could express themselves.

At his dr. appointment last week I asked my son's dr. if she had heard of this.  Yes she had.  It is a drug for alheizmer patients and happend to have a good side affect

I asked about trying and she agreed since there were no bad side affects.  Oh my.  How thankful I am to a loving Heavenly Father.  I feel like I have my little boy back.

He has been talking to people - yes, people he already knows, but all the same he has been talking and has been able to express himself better than ever before.

We have not had any major breakdowns or meltdowns.

He is on 5 mg/day but starting tomorrow will go up to 10 mg/day  and we'll stop there and see how things go.

I don't know if this medications will work the same on all autistic people but it is worth a try.  Please pass the information on to others.

From my world to your world....

Mary

A shirt!

Amazing how a shirt can cause such havoc in the morning. 

We were in the living room at 7:45. 30 minutes before we were to leave for school and what does my son do?

He takes his shirt off and tells me it needs to be washed for school. 

Okay - so I am telling myself not to overreact.  I take the shirt and run to the washer, throw it in, put the washer on warm warm and start it.  There is a reason I used warm warm - that is because the filture must be plugged up on the cold and it takes forever for the water to fill to the correct level.

I go back and tell son that he is going to school and he says:  "I know."  Once done I through it in the dryer with a dry towel.  After 10 minutes I throw in another dry towel and call the school and tell them he is going to be a little late.  I also emailed his teacher the same.

The second dry towel did the trick.  I grapped the shirt and tossed it to him.  Of course he had to check to make sure it was totally dry, and then he put it on.  I wanted to say Ha Ha I know it has to be dry everywhere.

And then after prayer we were off to school.

I'll gladly let him stay home on Mondays if it means that signing a contract will get him to school the rest of the week without a fuss.

From my world to your world.....

Mary

Really!

It was a bad night.  I was really tired lasat night so I asked my husband to please give son his pills.  He said okay.

That didn't make a bad night what made the night not so fun was that son was up all night! I kept asking dear husbnad:  "Are you sure you gave him his pills?"  "Did you watch him take his pills?"  "Did you look under his tongue?"

Oh man I felt like I wasn't going to make it.  I kept telling him to please just go to bed and son kept saying he couldn't go to sleep.

You may wonder what he did all night - well let me tell you some of the things that he did:  looked for food, in and out of his room, cooked and ate a pound of bacon.

I did not send him to school.  I knew his morning meds would keep him going through the day but I knew what would happend after school - he would be so tired and totally grumpy and then  there were problems going to his horse back riding lessons.  So I was selfish - what would be easier and better for me and for him - let him sleep.

I woke him up for his homestudy seminary study and then I let him go back to bed - but before he went back to sleep I had him sign a contract.  Yes, a contract.  It said:

I will go to school the rest of the week and go back to school after my doctor appointment on Wednesday.  I will also go whever my mom want me to go.
_______________
Signed

He did go with me too.  We went to Hobby Lobby so I was able to use two 40% off coupons on some batting for quilting and a page protector for a couple of love notes that my great aunt and great uncle had given each other and they are 100 years old.

I'm guilty - if he is going to stay home then I'm going to all the mileage out of the situation that I can.

In case you are wondering he did sleep until 9:00 a.m.

And if you are courious why he didn't go to sleep last night, let me tell you.

I asked husband tonight if he say son swallow the pills?  He said yes, he saw them put them in his mouth.

Did you look under his tongue?  No he didn't.  While we were talking I told son that he was going to go to bed early because I had already taken my sleeping pill and so I would be giving him his pill tonight and therefore go to bed early.

Son said he wanted dad to give him his pills.  I don't think so.  Then son said:  Well, maybe one of the pills slipped back into the cup so he may not have taken it.

Case closed!

I gave him his pills at 9:15 and at 9:34 sound asleep.  Yeah!

From my world to your world....

Mary

Off topic personal request

I know the power of prayer and I ask for your prayers and thought this day for a very dear friend. Her son is in the ICU and they do not know if he is going to make it.  I would really appreciate your prayers in his behalf. 

As much as we struggle as parents with special needs children I cannot imagine what my friend is going through.

From my world to your world......

Mary

Good Websites

Here are some good websites that I was given from an online crafting friend.

You do have to have a computer for your child and for me that is an uphill battle, but, I did have a thought this morning.

What if I created a nonprofit organization for donated computers and money to buy computers and then I could give them out to kids with special needs, for those that really could use a computer in school but just cant't seem to get the school to give them one.

I do plan on asking my sister how I should/would go about this.  But until then these might be of interest/benefit to you and your children.




Grammar, English Grammar | Ginger Software

Student Planner - The StudyMinder Homework System School Planner

Inspiration - Comprehend. Create. Communicate. Achieve More. | inspiration.com

From my world to your world.....

Mary

Eating and eating

I think he is going through a grouth spurt and he is expanding his food choices.

Monday he wanted me to buy frozen corn dogs.  He ate one of those, but at least he tried them.

Yesterday, he wanted me to pick him up early from school and take him to Wal-mart to buy steak fingers and gravy.

I didn't pick him up for that but I did go to Wal-mart before I did pick him up.  And talk about frantic - that was me at Wal-mart looking for steak fingers.  Up and down the isles I went - back and forth.  I finally found someone to hlep me and all that we found were chicken fried steak - not fingers.

So I bought it hoping for the best.  When I picked him up I told him he had better not get upset about the food.

He looked at it and wasn't happy, but when he got hungry he asked for one.  So I heated the steak in the microwave and made the gravy.  Ready!  Wrong.  He asked where the mashed potatoes were.  Ooops.

So I quickly made mashed potatoes - of course they were instant.  He ate it all.  Yeah!  Success!

Later that night after I gave him his evening pilss he asked for another one.  He not only ate one but two!  The works - chicken fried steak, mashed potatoes, and gravy!

Now am I going to be able to keep him full?  That will be the next question.

From my world to your world...

Mary

A good start...

For this morning.  He went to school and didn't say anything about me picking him up early.  So hopefully no meltdowns today.

I really can't imagine what is going in his mind.  It must be terrifying.  Did I tell you yesterday that the counselor said he was in her office crying and upset and didn't calm down until he knew that I was going to pick him up at 11:30?

Here is what I am wondering:  Was he really crying and upset or was he making himself cry?  I don't know and I don't know how to found out.

The only times I see him cry are when his feelings are really hurt.  I wish he was able to put into words what is going on.    

I am going to ask his dr. about the medicine that has helped some autistic people communicate their feelings.

From my world to yourr world.....

Mary

And life goes on......

and he is going through a growth spurt!

He is adding different foods to his diet.  He'll eat beefy mushroom soup with rice - which really is good if you haven't tried it - and he new favorite are canned tamales!  I can't believe it.  He'll eat 2 cans of them in one setting! 

He is even eating some of the lunches at school.

And speaking of school - he had another meltdown today and I had to pick him up at lunch.  He was in the counselor's office crying and very upset until she told him I would be there at 11:30.

I thought things were going to go smoother for these last 9 weeks.  Last week after spring break he went to school no problem until he had his first doctor appointment.  He wouldn't go back to school after that and then the next day he came home early.

I really don't know what the solution is going to be.  I'll be glad when summer gets here.

From my world to your world......

Mary

Comments - still learning

This really has nothing to do with my son but rather me and my challenges with computers.

I thought I had it seleted for comments to be seen but for some reason they are not.

Also, the alert about new comments was being sent to the wrong email account.

So I guess what I am trying to say is that I'm sorry I have not responded to your comments.

I really appreciate them and finally found them.  They mean so much to me.

Thank you.

So I am trying to make sure I have things updated and ther correct little boxes marked with the "x".

From my world to yours....

Mary

Wow! A long time..

I didn't realize it had been so long since I posted! Lots of things have gone through my mind that I wanted to post but for some reason never got around to it. Sorry about that.

Tonight's post: Thank goodness for those big blue pills!

I was giving him his night pills and as I handed him the cup I didn't see the big blue pill inside. So I went back to get it when I realized that I had his morning pills instead of his night pills.

When I said Oh my- he asked what I was about to give him - morning pills - that would not have been good. That would mean an entire night of no sleep and then he wouldn't be able to go to school tomorrow because I couldn't give them to him again!

And what is stupid is that I have his morning pills in while, afternoon, purple, and blue for night!

Geeze I hate it when I do that!

From my world to yours....

Mary

How do I say.....

Everything was pretty good yesterday until I game him the medications at night that help him sleep.

I gave him his pills and I thought I had food for him to eat - steak, eggs, candy bar, ravioli and some ther things. But I guess not.

He said he would like the steak. Sounds good so I went to cut it up and reheat it but then he said he wanted steak sauce and not ketchup. We didn't have any sauce just ketchup. That did not go over well.

He got up and started going through the refrigerator and not in a very nice manner.

Let me preface this here for a minute. Remember his pills make him extremely hungry so much so he just has to eat. There is no way around it. Now combine this with his sensory intergration issues and it limits what he will eat.

I was very upset to say the least as the following happened:

He couldn't find any sauce and so he pulled out the ketchup and then he slammed it down on the counter. Did you know that plastic will shatter? It does and the ketchup went all over the kitchen, the floor, and all over me. I was furious....

So I walked away and tried to clean myself off and went back into the kitchen. He had then pulled out a can of spaghettios and was pouring them out when he say a meat ball.

I was so quiet at that point and told him he had to clean everything up.

I just just got more upset so once I just went to bed and bascially locked myself in my bathroom and cried and chilled out. I really felt like a failure.

How do you get through to someone who is in that type of meltdown? Yes, he calmed down and I think he came into my bedroom to apologize but I was in my bathroom. I think he came in twice but I was in the bathroom both times.

Should I have come out and let him apologze to me? Did I make a mistake in not doing that?

I really don't know. All I know is to keep praying and asking Heavenly Father for guidance.

I am beginning to be 2 and 2 together though. If he doesn't eat until he is satisfied at bedtime then he wakes up during the night and he wakes up early in the morning because he is hungry.

Waking up early on spring break really is not what I wanted to do. He will be going to bed early tonight with a full stomach so that he will sleep the entire night.

I did have him sweep and mop the floor this morning and clean up the counter tops.

I don't know if there is a new normal here or not. I don't even know if I handled the situation correctly or not. I do know that I wish I had my sweet young man 24/7 and to that end I will be working towards.

From my world to yours....

Mary

This has been one of those days

When you go from one extreme to the other - from this sweet young man to who is this child?

This morning was sweet. I had put my scriptures on a chair while I did something else. He picked them up to move them and I said be careful with them remember they're kind of old.

He then said - there is your memory bank. I said what? Memory bank?

He said, yes mom, your scriptures are your memory bank everything you need is in there.

Awe - how sweet!

But an hour later when it was time to go to school we were searching the house for his glasses. I knew I had seen them last night but I couldn't remember where. He said they were no where to be found and that he thought he could go to school without them until 12 p.m. when I picked him up for his appointment.

Then I knew what had happened - he had hidden his glasses in an effort to not go to his afternoon classes.

I'll admit I wasn't very sweet myself then - I told him that if I used up my one free hour this morning looking for his glasses and found that they were hidden he would think grounding was a brezze in the park. When I came back in from starting the car guess what? Yes, he had his glasses on.

I dropped him off at school, ran home, ran to my dr. appointment, ran home and picked up his service dog and then ran to school to pick him up, I even had to call the school to ask them to get him out of class and waiting for me.

And what is he doing when he gets up to walk out to the car. Think setting up a scenario so he doesn't have to go back to school after the appointment. He was limping and told me that he had twisted his ankle and wouldn't be able to go back to school.

I just told him that yes he was going to go to school.

Then he showed me a study guide for a test he had tomorrow. You may be wondering why that would upset me. Let me explain.

In his IEP it states that I am to have a corrected study guide emailed to me 4 days prior to the test. I even sent out a reminder email last week and haven't received any study guide.

So how am I supposed to study with him for tomorrow when it take a couple of days to study on one subject?

Next then I received return phone call from Project Peak. They do behavior analysis for autistic children. This was requested last November. They did the observation in January and I still hadn't heard anything from the school to go over the results so I called them.

She informed me that they were waiting on the school to contact them because the school wanted them to come back out. She also wanted to know if I wanted them to send what they had or wait on the school. I told her that I would contact the director of special ed.

So I am somewhat upset. How do you set up a behavior plan when you won't even be able to implement it when there are only a few weeks left of school. It will be difficult to say the least.

We get to the therapist appointment. There he has a major meltdown. The good part of the appointment was that we got the paper work together for them to fax to apply for Disability for him.

He was still upset in the car telling me he wasn't going to go back to school. And he was like that until I dropped him off from school.

So I run home to leave the dog again, call the director of special ed, call project peak back informing her that the directo of special ed would be calling her.

Run to walmart, run home, gobble a bite to eat and then leave to pick him up from school. He was happy and ready to go to church tonight and was the happy go lucky excited about going.

Everything is great right - it seems like it. Here is the tricky part - when do I give him his afternoon meds? Too early and they wear off too early, give them too late and he won't be ready to go to church. I think it hit it about right. He did have a meltdown about going but after 15 mintutes things were calmed down.

Hopefully they will stay that way for the rest of the evening.

Is there a new normal here. Yes. Don't get upset or dicouraged when they days happen and they will happen most likely more often than not. Others may have only one of these days with their children that are not autistic but my normal is very different and I'm not going to beat myself up over it.

From my world to yours......

Mary

Processing

Processing processing processing. It it what it looks like when I ask, tell, or speak to my son - you can see it in his eyes - processing, processing, processing......a few minutes later he will then answer or do what I've asked him.

I have to remember that and I have a hard time remembering that he needs extra time to process information. It doesn't matter if it is something that he is reading or if someone is speaking to him.

I really think I have seen how this works when I have stood back and watched:

When the horse trainer has asked him to do a specific exercise with the horse I was really amazed. I heard the comment, I new he heard the comment/command, I saw him sit still, then there was something in his eyes, then it connected and the command/exercise was carried out.

Now, I have to tell myself: don't keep asking over and over - allow time for processing.

Hmmm... sounds kind of like the last post except it is me who has to get it into my long term memory that I need to pause and give him time to process.

It is almost like they are frozen in time for just a second. When one of my other sons has asked him to do something he just stands there for a second or two. I can imagine the message entering his ears, the message is being sent to the brain but instead of going straight to the brain, his is hijacked by some other nerve center (not sure what to call it) and is forwarded to different centers before it is then delivered to his brain. I hope that makes sense.

So be patient it really only takes a few more seconds for it to register, which in our fast paced world my seem like a long time to us.

From my world to yours....

Mary

Never Say....

I've told him/her before how do it so he'll remember. You will just cause yourelf and your child more stress.

Yes, we may have explained something to them before and maybe even explained it 3 or 4 times, but really, they don't remember.

For them to remember something it has to be repeated over and over until it makes itself into their long term memory. It needs to become "routine."

My son loves to drive the tractor and loves to plow the garden working the soil and getting it ready to plant. So of course my husband has explained to him how to drive, how to move the controls, and how to lower the blades and since my husbands remembers that he has explained all that to him and that he doesn't have to again, he and our son have so much more stress. My husband is yelling at him to change gears, slow down, don't do that, do this and our son is stressed out because he is being yelled at.

If on the other hand each time our son is going to use the tractor in the garden my husband needs to go over with him all the guidlines again, helping to plant (no pun intended) this into his long term memory.

All kids with autism may not be like my son. He doesn't have much of a shorterm memory so anything new has to be repeated several times before it makes it to his long term memory.

Never assume our children remember what to do because we've told them how 2 weeks ago.

Which brings to mind a topic for another post.....

From my world to yours......

Mary

Dr. Jeckle and Mr. Hyde

I wish I knew the answer to the question I am about to pose - what causes my son to be a sweet young, caring boy one minute and then the next minute this mean, rude person I don't necessarily like?

Is it the autism? The space between the medicines wearing and before the new ones kick in or is the doctor going to add bi-polar to his diagnosis?

I wish I knew.

It can and usually does change very quickly. Literally, he can be sitting there one moment and the next he is so upset and then 30 minutes later he has calmed back down.

From my world to yours.....

Mary

Wording

Wording is so important whether it is a question, comment, request or a warning.

Here is an example (and I hope I haven't already given you this one):

"Don't use that cough as an excuse to leave class early."

Right after I said it I knew I had made a big mistake.

I could see his brain working: okay I can't use the cough so I must be able to use something else as a reason to leave class early.

In essence I just gave him permission to use something else - stomach ache, headache, whatever, as an excuse to leave class early.

And of course he used it.

I have some other things that I want to share and of course I thought I could remember and could post it later - but no not me - I have forgotten. From now on I've got to post as I think of it!

From my world to yours.......

Mary

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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