Wednesday, July 29, 2009

Look who is here!

So, as you can see, (if you are still checking here) I am able to post something today. I had to come to town for some things and decided to stop in at the library.
What has been happening? Well, several things actually.
The Boy made it home (finally). We both survived it, but I am thinking just barely! He has been a bit different since he got home. By that I mean that he has picked up an attitude that I have been trying to correct. He has been back-talking and has been acting like he is smarter than the rest of us. That of course does not fly at my house! I don't think he even realizes he is doing it until he is called on it. He has also decided that he can't go to bed unless I am also going to bed. I don't know what that is about! He wants to go with me or with my Crazy Man instead of being by himself. Took him being home about three weeks before he even asked to spend time with my parents and brother. THAT is saying something is not quite right!
So far, Ziggy seems to be doing fine from his recurrence of a UTI. (Now saying that, I will probably go home to find him in distress again!) He lost about a pound while The Boy was gone, but we are trying to get him to gain it back. He really missed his boy! Since coming home, I can pretty much tell where I will find Ziggy....right next to The Boy!
I am looking for a different job, but that is really nothing new I guess. I figure I should always be on the lookout for something new and interesting to see if I can learn other stuff. I guess to see what opportunities present themselves to me. Right now, I am in charge of two different school districts as the nurse. There was another nurse working at the second school a couple days a week, but I was just informed by her late last week that she has decided not to come back this coming school year. (So if there is anyone out there that is an RN who would like to make a tiny bit of extra money by working at a school for two half days a week, let me know!) That is all in a mess at the moment. And, of course, school starts soon.
Matter of fact, I have to report to school on August 10, with the first day of student attendance on August 12. Not sure that either me or The Boy is ready!
My uncle brought my cousin up to visit this past week. He turned 3 on July 18. (The cousin, not the uncle!) We also welcomed his baby brother into the family on July 20. No pictures yet, but when I get any and if the parents agree, I will try to post a couple. My grandma was thrilled since my uncle and cousin stayed with her while they were here. That little boy is a really good kid and just as rotten as we can make him! I am sure his parents loved getting him back! No, really, he is a good kid and we love him to bits.
Anyway, I gotta go. Supposed to be meeting my Crazy Man at the insurance office as soon as he gets back into town, which should be soon. I will post as soon as I am able to do so again.

Friday, July 10, 2009

The Boy's New School

Welcome to the fourth installment of The Boy's story. If you need to catch up, just look at the previous three Friday posts. I will continue the story each Friday until you are caught up to the present. Once his story is complete, maybe I will start a whole new story about my life and how I got where I am today.

Which new school did I choose? I chose the one that I am currently employed with. Actually, that doesn't help you at all since I am actually the lead nurse for two districts! Ok...I chose for him to attend the same school that I attended as a child.

Why? Several reasons. First off was that it had small classroom sizes. (His class currently has 25 kids.) Secondly, choosing this school meant that when he had a day off, I also had a day off. He could either ride the bus or ride with me. I knew all of the teachers and those that would be dealing with him on a daily basis. I could send him home on the bus to my parents' house if I had to be at a meeting or out of town. I would be available should there be a problem. And, he would not have to change schools again once he got into the 9th grade.

Don't get me wrong. There were good reasons for him to go to the other schools too, but for whatever reason, this one made the most sense and that is the one I chose.

He began the fourth grade with an IEP. For those out there who don't know what this means, it means that he had an Individual Educational Plan. This lays out a list of items that would change the way he is taught.

For instance--instead of having the full 20 word spelling list that his classmates had, he only took a test on 10 of them and as time moved on, he would increase the number of words on his list. He would be allowed to leave the room for any and all tests. He would be given extra time to complete tests and assignments. If notes were to be taken, he had to write them, but then a set of notes from the teacher would be photocopied and sent home so that I could read them and help him to study. The teachers were to try to decrease the amount of paper/pencil tasks required of him. Some of his tests/assignments would be read to him. Unless it was a spelling test, spelling would not be counted off. His handwriting would not be held against him. If the teacher could not read something, she was to ask him what it said and take his oral response as the answer to the question.

All of those things were accommodations that were required to be given to him so that he could continue with his education with his classmates.

Everything went fairly well. All things considered of course! I mean, he still was biting himself and banging his head and pushing on his eyes when he was frustrated. He still was having all of the normal difficulties and unfortunately, he began to have problems with some of the kids in his class. Two in particular. They discovered which buttons to push to set him off, and they pushed them every chance they got. Every single night, he would come home with a complaint about one or the both of them.

It was also really hard when he would come home saying that the whole class received a punishment when there were just a few who were causing the problems. How do you explain to a kid that the world was like this??

As time went on, we both adjusted and settled in. Don't get me wrong...this was not easy. We had teachers in the fifth and sixth grades that felt they didn't have to follow his IEP because "he is too smart to have an IEP and if you were a better mother he wouldn't be having any problems at all." (Made me wonder if she had been talking to his father!) We seemed to find ways around all sorts of obstacles.

By the end of sixth grade, he was still considered to be a 'loner', but he was also noted to be exceptionally smart. Matter of fact, he was one of the top two in his class. And it wasn't because of any special treatment he received. He continued to work just as hard as the other kids.

Long before, I had told him that grades did not matter. Maybe not something that I should have said, but oh well! I told him that the actual grade he received was not as big a deal as the effort he put towards receiving that grade. I told him that if he put forth 100% effort and did the very best he could do on any given task and still received an "F", then I didn't care. As long as he tried his hardest, I would be proud of him. I know that it may not work well for all kids, but it definitely has worked well for The Boy.

When he was younger, he would come home upset because in the column under 'handwriting' on his report card, it would be marked as 'unsatisfactory'. I told him that I knew a man that was loved by many and who was terribly smart and exceptionally good at his job who most people had difficulty reading his writing. And that man was a doctor. So having good handwriting does not make a man good or better than anyone else. After that, The Boy became unconcerned when his handwriting consistently received unsatisfactory marks. It isn't that he didn't try to make it better, it is just that it isn't as big of an issue anymore.

During The Boy's fifth grade year, we began seeing a counselor on a weekly basis. She has helped him a great deal in being able to decrease the head banging and the biting. She continues to work with him to this day. He knows that he can tell her anything and everything without me knowing unless he has given permission for me to be told. (Unless of course he is hurting himself or others.)

There have been several times that he has had a major meltdown in her office and she has not been able to calm him. That is where I come in. I am able to calm him at least enough to get him out the door and home where he can curl up in his own bed and then be able to talk about it a couple hours later. There have also been several times in which he will refuse to talk to her. Those times have been getting fewer and fewer. We have discovered that if he has something to keep his hands busy (legos, computer) then he talks more.

When he began the 7th grade, there were nerves all around. Our school has two buildings. An Elementary and a High School. The High School has grades 7-12 and the Elementary is K-6. That meant that he would be going to a new building with all new teachers and expectations. We ended up talking to the counselor (who works in both buildings, just like I do) and coming home with his schedule over the summer. This way we were able to go on different days when the school was empty to each of his classrooms. This let him know where he was going and how long it would take for him to get there.

Before he started his 7th grade year, I went to each of his teachers and talked to them about my son. I told them things that they needed to be on the look-out for that showed that he had hit his stress level. We discussed his IEP and how that would affect the classes those teachers had him for. Every time he has a new teacher, we have to have this type of discussion.

The transition to seventh grade was not too bad. He continued to have some difficulty with a couple of the kids in his class, but overall, it wasn't a bad year.

During his eighth grade year, he had a somewhat easier time. He kept most of the same teachers as the previous year, so they all knew each other. He still had issues with some of the kids in his class, but he made a couple of new friends too. He rarely came home with homework because he was able to get it done in class. Most of the time we had good days. But on the days we had bad days, we had really bad days!

On the last day of eighth grade, there was an awards assembly held. I was called the night before by one of the teachers to attend. I was told that he would be receiving an award, but that he didn't know about it and I was not to tell him. No problem. I show up and he is given the American Legion Award. They choose two kids out of the 6th and 8th grade that show good citizenship and good grades. I was very proud!

Then, near the end of the assembly, his name was called again because he had written an essay for a contest by the Missouri Peace Officers. It was titled 'Why You Should Say No to Alcohol, Tobacco, and Drugs. He won first place in the Eastern part of the state and a check for $300! Talked about proud!! I cried! He couldn't stop grinning. (And that is saying something since he doesn't do that very often!) He put it in a savings account until they come out with the newest version of some type of computer program and he can buy a new laptop. Not bad for someone who struggles with written expression, huh?!

We attempted to get him into a program for those with autism. I filled out all the paperwork and he was taken in for several sit down sessions where they talked about things he liked and didn't like. We went back a few times for him to build a robot while being videotaped. That has been quite a while back and I have yet to hear what they thought of the video. He did have a couple of breakdowns on the video, so they could see that what I described was accurate. Unfortunately, every time I have asked about what we do next, I am told that they are still waiting to analyze the video. I guess we will continue to do this on our own, learning as we go.

The Boy did get braces put on during 7th grade. THAT was an ordeal! He is dealing with them quite well now. I take him to an orthodontist who has a child with autism. That child is in his 20s now, so I kind of figure that the man knows how to deal with my boy. Matter of fact, he was my orthodontist when I was younger! We have also been given one person that works with him everytime he comes in. We sit in the same chair and have Shannon every single time. They know that if we are scheduled and our person is not there, then we will have to reschedule because The Boy will not let anyone else deal with him.

I have taken great pains in hand picking the docs that deal with The Boy. I have had docs be rough or gruff and upset both me and The Boy and I will just not deal with it.

We had an episode of the orthodontist ask me, loudly, in front of other patients and parents, "what is your kid's problem? Did he have a bad experience with a dentist because I am not going to have him crying and carrying on all the time." I looked at him and said "I would think that you of all people would know how to deal with an autistic child's fears and needs. Maybe if people would explain what they are doing and how it is going to be done before they start shoving things in his mouth, we wouldn't have this problem." The man immediately apologized and said that I was right. He then began assigning people to work with him each time we came in.

I have picked an eye doctor who also has a son diagnosed with autism. He works very well with The Boy and we have had no difficulty with him.

His pediatrician is a very calm man who pays attention to what I tell him. He doesn't touch him unnecessarily and explains everything he is going to do to him.

We started to see a new dentist in the past couple of years. The old one refused to allow me to come back with him. When I was called back after the appointment, the man looked at me and said, "I have told him and told him how to brush his teeth. Everytime I see him I tell him. He must be stupid or something because even little kids can figure it out." That, needless to say, was the last time we went back. Of course that was after I gave him a piece of my mind! The new dentist had an assistant that was extremely short on patience and very rough with both me and The Boy. I called the dentist and he called back after hours. I told him that we would not be returning due to the way we were treated. He asked what happened and asked if we would come back at least once more so he could prove he could make it right. We went back and so far, have had no more issues.

This post has caught you up with The Boy's story. He has some friends, (mostly girls!) but would still rather be alone. He still struggles with some simple things like understanding sacasm, understanding teasing, and gets frustrated easily. He has trouble describing emotions and things that are going on around him. But, he is a beautiful boy with love to spare. He has started to hug his grandmas and his greatgrandma. He has to be reminded to take his medicine and brush his teeth, but really, what teenager doesn't?! He is smarter than I will ever be. And he knows things that I can only dream of knowing.

I tell him that he should never let anyone tell him that he is stupid or that he has a disablilty. He has different abilities and if he were just like everyone else, how would he be as special as he is. I tell him that his mind works differently than other peoples and that I don't understand how or why, but I do know that because it works, he is not stupid.

And I wouldn't change one single thing about The Boy.

Friday, July 3, 2009

The Boy Starts School

This is the third post in the story of The Boy. Each of the past two Fridays, I have been telling his story. I plan to continue that pattern until you are caught up. After that, maybe I will tell another story of my life! Guess you will have to stay tuned for those!

The Boy started Kindergarten with no services needed. Great! It was decided by his father and myself that the best place for him to attend school would be a small private Catholic school. A little background here: I am not Catholic. His father and his family are. We were married in the Catholic church. My son was to have been baptized at delivery because of complications, but no paperwork was ever completed. Because I was not Catholic and there was no paperwork confirming the baptism of The Boy, he was not considered to be Catholic either. Because of this, we were both treated differently.

Kindergarten went pretty well. I went to parent/teacher conferences and talked a lot to his teacher about how he was dealing with school. She always told me that he was very polite and very helpful. She said that he didn't have a lot of friends, although he always was "for the underdog." The one friend he did make, just happened to be the biggest kid in the class who was also really shy and didn't have many friends either.

First grade came and problems began to surface. First off, in September, The Boy and I left his father. I woke up one day and decided that I was no longer 'me' and I needed time apart to see if I was still around or if I had been killed off by his father long ago. (May sound stupid, but that is how I felt.) I asked his father to please go stay at his parents' house (just a few blocks away) so that I could continue to raise The Boy in his home until I could figure things out. His father looked at me and said, "I will not leave my home. The two of you may go, but this is my house." Even after explaining that it would be easier on The Boy to stay in his own surroundings, his father told me that he didn't care.

So, I grabbed as much of The Boy's clothes and possessions as I could stuff in my vehicle and I left. I had only a few days worth of items for me, so a couple of family members returned to get my things. I never went back. I knew then that I was still 'in there' somewhere and I couldn't live like that anymore.

Now, back to The Boy! First grade was tough. They started to have 'sight words' that they had to know every week. The first time they did them, the words were written on cut out orange fish. The teacher said that she planned to put them on different shapes and colors every week for the kids to learn. We did fine with these. It was funny though, I could hold the words up to the mirror and he would be able to read them by looking in the mirror! I sometimes had to actually look at the fish in my hand to make sure he was correct!

The second week, she changed the shape and color his words were written on. He couldn't figure them out. We tried everything, but he just couldn't figure them out. Finally, I decided to write them on the back of the previous weeks orange fish. Guess what? He could read and recognize them! Crazy, but true. The teacher couldn't believe it either, but from then on, The Boy's words for the week came home on orange fish!

We also started to notice that his handwriting was not progressing the way the other kids' were. The teacher was having difficulty reading anything he wrote. He continued to only have the one friend, despite all efforts of the teacher to get him to interact with the others. She said that even with the one friend, he still mostly kept to himself.

He didn't like to be touched. He didn't like loud noises. He didn't like people touching his things. Teasing was terrible. The rules were the rules and they were made to be followed, not tested, let alone broken. Everyone should be treated exactly the same and when they weren't, he was not happy. When he became frustrated, he would hit himself in the head and bite himself. He would push on his eyes when frustrated.

Second grade was more of the same. Difficulty with writing. Spelling was extremely difficult for him. Taking tests was an ordeal. He would start to cry when he became frustrated. He wanted nobody to touch anything of his. He wanted nobody to touch him. If you placed a time limit on something, he nearly shut down. He had a hard time if there was a substitute and he didn't know the sub was coming. He had difficulty when his routine was disturbed.

I went to the teacher close to the end of the year and asked if there was not some type of testing that could be done to see if there was a learning disability. She said she would bring it up with the principal. I waited, but nothing was done.

Third grade started. Things were becoming increasingly more difficult. I went to his new teacher and asked about testing. She said that she would talk to the principal. I waited. When nothing was done, I asked his second grade teacher. She told me that she had discussed it with the principal, but was not given an answer. the same thing was told to me by his third grade teacher. By this time, more than half of the school year was complete. The third grade teacher (God Bless her!) had been making dozens of accommodations for him through out the year.

I ended up contacting the woman who was his teacher when he attended ECSE. She asked what was happening and what I had done about it. When I told her, she said that she would take care of it. Within weeks, tests were set up with the closest public school district. I had gotten a new job at this point, and I would take him and drop him off for testing, go to my job, pick him up at lunchtime and return him to regular school. This went on for weeks, until the testing was complete.

By the last week of school, we met to discuss the tests. The verdict was in. He was classified as having a Written Expression delay. They also said that he was very smart, but had social delays also. He had a speech problem on top of it. I was told all the things that I knew, but because I was just a mom, my knowledge didn't count.

They said that there were several things that could be done, but that because he attended a private school, that school did not have to provide the accommodations required. I was told that I could take him to the local public school, and they would help him. Or, I could leave him in the private school (which they thought would be better for him because of the small classroom sizes) and see what happened. They felt that he would continue to fall behind if this option was chosen though.

The tears flowed. I was devastated. It is hard enough to know that there is something not quite right with your child. It is a totally different thing to be told by 'professionals' that you are right. I knew that now that the schools acknowledged the difficulties, they could do things to help. And yet, the best school for him would do nothing.

What to do? His father was of no help. He had decided that I was just being stupid. I decided that the best thing I could do for my son would be to put him into a public school so that he could get the educational help that he so obviously needed.

But which one? I lived in the district in which he had been tested. But that school was quite large and was set just off the interstate. I didn't feel comfortable with either of those things. The new job that I had started just a few months prior was as a nurse for two different public school districts. One of them was K-8th grade and only had about 115 kids altogether. The problem would be then finding a high school for him to attend afterward. The other school was the one in which I had attended during my entire K-12 career. There were about 330 kids total. Both of these schools said that since I worked for them, I could bring The Boy tuition free.

Both schools had their good points and their bad points. I was going to have to really weigh my options. Which should I choose to give my son the best opportunities? What if I chose the wrong one? I had already made so many mistakes.