Meandering Thoughts of MomTo3Kidz: Andrew

The special education battle continues

Mon, 28 Jan 2008 11:44:51 GMT

Way back in October of 2007, I began battling with my son's school to get an appropriate IEP. I finally got the IEP finalized to my satisfaction in late December. What a struggle. I had to involve the director of special education, the building principal, the autism consultant, and I talked to representatives of INSource - the watchdogs of special education law in Indiana. I seriously thought I was going to have to hire an attorney to fight this battle, which was unbelievable to me. I wasn't asking for anything that I wouldn't provide my own students.

The problem now is that Andrew did not pass Health his freshman year. He told me that the whole class consisted of taking notes and he doesn't write quickly enough to get all of the notes. His IEP stated that he got copies of teacher notes or another student's notes would be copied for him. I e-mailed his special education teacher about it and totally expected that it would be taken care of. It wasn't. Normally when a student fails a class my school just puts them right back into the class the next semester. Andrew's school didn't, and now that he is a sophomore, they still didn't put him back in Health. The guidance counselor said that the classes were too full - with freshman, so Andrew would have to attend summer school. WHAT??!! They didn't follow Andrew's IEP and now they expect me to pay $75.00 to send him to summer school. Not a snowball's chance in HELL, will I pay for summer school. I explained that I am totally willing to send him to summer school IF the fee is waived, because it is not my fault that they did not follow his IEP. The building principal promised to get back with me with an answer. Yoo hooo - it is the end of December and I still don't have an answer.

Last week I e-mailed the building principal asking what they intend to do about Andrew's Health credit. He said that they were investigating the option of giving him a grade based on his test scores and dropping all of the homework. If he passed his tests then he would get his Health credit. You know how long that would take? About 5 minutes to pull up the grade report from that class and about 5 minutes to average all of his test scores. Why in the heck is it taking three months? I wrote the principal back, saying essentially that. Guess what? He hasn't written back. I called INSource again and then I looked up a law firm that represents all of the school districts in the county, except my son's. Today I am making one last ditch attempt to get this resolved, then I contact the law firm.

I am infuriated and totally mistified. This isn't an unreasonable request. We have had some people drop the ball in my school district. We are not perfect. When a parent makes a call and we define the error, we (teachers and administration) do whatever it takes to make it right. I totally believe in the old adage, "The squeaky wheel gets the grease." Why are they giving me the run-around? Well I guess it is a good thing I have some paid time left this year, because I have a feeling I am going to have to take it to get this mess straightened out.

________________________________________________________

UPDATE: The principal sent me an e-mail today to let me know that Andrew "earned" a C, and now has his Health credit. I am glad that I didn't have to push it to mediation. Hopefully the next two years of high school will go much smoother. The head of the special education told me that the school distirct has never had to go to mediation. Maybe they would like to keep it that way.

I am so proud and excited

Mon, 17 Dec 2007 22:40:56 GMT

Today I was with the special education staff at my school, working on our new IEP program when I took a break and checked my e-mail. Andrew's special education teacher sent me an e-mail to tell me that Andrew PASSED his GQE, which is the test he needs to pass to get a high school diploma. Starting in the 10th grade, the ISTEP counts as the GQE. Andrew has never passed the ISTEP and although I knew he was capable, I didn't think he ever would, because he never put forth his best effort. Many times the English portion has been "undetermined" because he wouldn't do it. He passed it the very first time it counted toward graduation. I cried tears of joy, and a few of the ladies I worked with got misty-eyed just watching me. When I told Andrewhow proud I am and that I cried when I found out, he said, "Mom, you can stop being Emo now." Gosh I love that kid.

Waiting to feel normal again...

Fri, 30 Nov 2007 01:03:22 GMT

Right when I dropped Andrew off at school today he told me that he would probably be staying after school to get help from his Geometry teacher. Since he is failing Geometry that made me pretty happy. I told him to call me when he was ready for a ride home.

At 4:30pm I started wondering what was taking so long for him to call. School ended at 3:15. I called his cell phone but it was turned off. At 5:00, I thought maybe he didn't stay for tutoring, but went to his grandma's house instead. I called her and she said that she hadn't seen him. At 5:30 I called his friend's mom. I got her cell phone and she was at work. She told me that if Andrew was at her house, they might not hear the phone because they play video games in the basement. I drove over to the house and Andrew's friend's sister said that Andrew wasn't there and that her brother didn't come home from school either. Ok, now at least he might not be ALONE in a ditch. I hoped. I called the friend's mom back and she suggested that Andrew and her son might have walked to another friend's house. She didn't know the phone number but would drive over to see if our boys were there. Her son was - mine wasn't.

At 6:00pm I remembered that Andrew mentioned that he hadn't seen Craig's stepmom for a long time and he would like to see her. She lives very close to his school but in an absolutely terrible neighborhood - much worse than ours. Maybe he walked over there after getting help from his teacher. Oh please, let it be. I called and Grandma Patti said that she had not seen Andrew, but then tells me that there was a shooting in her neighborhood at 4:30 this afternoon. Great. My anxiety rocketed to panic mode.

He only has two friends and one of them lives 20 miles away. Neither grandmother has seen him. He is not in our house anywhere. It is dark outside. Should I call the police? They would probably laugh at me when I told them that my 16 year old son had been missing for three hours. Who do I call? What can I do?

Finally it hit me. Andrew's geometry teacher has a very unusual last name. I decided to call her house and find out if he even went to her room after school. I got her husband. He was very hesitant to tell me where his wife was, until I explained that I was searching for my son, who was supposed to be getting help from her after school. He told me that he just heard from her 15 minutes before, and she said that she was still at school, working with a student. Ahhh, a ray of hope. Surely it was my son that she was working with. He gave me her cell phone number. She didn't answer. I left a message telling her of our worry about Andrew's whereabouts, and asking her to please have Andrew call us as soon as possible. He called at 6:45pm... 3 and 1/2 hours after school ended. He was actually doing geometry all that time.

Andrew laughed hysterically at the fact that I was so worried about him. He was very proud of the fact that he got all of his assignments done and was allowed to retake his test. He now has an A in Geometry. I think I need a glass of wine to calm my nerves...

Hi HO it is off to Indy I go...

Wed, 28 Nov 2007 17:25:56 GMT

Today I am leaving school halfway through the day to participate in a panel on transition for students with high functioning autism and Aspergers. I "get" to drive to Indy, participate in the panel for an hour and a half and drive back home. I "get" to pay for my own gas and food. Honestly, if I didn't think that transition to adulthood is one of the most perplexing challenges posed by raising a teen with autism, I wouldn't be doing it.

I don't know exactly what is expected of me as a parent, but I hope I get to address the fact that schools are not doing enough to prepare students with autism for life after high school. Since Andrew lives in a fantasy world, I have not been able to get him to seriously consider his future. First he was going to be a chicken farmer, then an international spy, next a writer (even though he has never written a complete story), and most recently he wants to be a rock star. I tried to encourage his interest in music by buying an electric bass for him. I think he touched it once.

I know teenagers have difficulty deciding what to do with their lives. I know I didn't settle on a career until I was in my 30's, but at least I tried different things: fast food, florist, retail store, factory, hairstylist, office worker. The only thing I can think of to help Andrew make a decision is actually seeing what people do in different jobs through a job shadow program, and maybe even in a work study program that has some sort of support built in with a job coach. Right now I am trying to sign him up for classes that I think will be relevant to adult life. This trimester he is in computer technology where he gets to make videos, build websites, make animation, edit music, use a flight simulator. He loves computers and he loves the class. He is taking Money Management, which uses the same curriculum I used in direct Econ last year. I hope the school autism coordinator and I can figure out a practical and meaningful transition plan for Andrew - expecially during his last two years of high school.

As usual, I digress. The purpose of the panel I am participating in today is to make a video and a book on transition for the Indiana Resource Center on Autism. Students, teachers and parents are going to be included in the final product. Victoria thinks I am going to be famous. I told her that the only people who will read the book and watch the video are parents of students with autism and a bunch of special education teachers. That doesn't exactly add up to fame. Besides, my comments might just end up on the cutting room floor...

Don't mess with my kids

Sat, 10 Nov 2007 10:05:32 GMT

There are several school districts in our county. Since this area isn't full of huge urban cities, teacher from different school districts end up socializing. I know teachers and paras from most of the school districts in the area. Gossip travels quickly between schools and districts. I never really cared too much until it affected Andrew. I am fighting tooth and nail to get the school to finalize an appropriate IEP, and FOLLOW it. Andrew's teacher, Ms. M, shared with a teacher at his school that I expect too much, ask for too much, that I am on my "high horse," and think I know everything. She says that Andrew doesn't need the accommodations that I am insisting on. I couldn't care any less about her opinion of me. What does matter to me is that she is sharing with teachers her opinion that Andrew doesn't need the accommodations. I have had one hell of a time getting the high school to follow his IEP and now she is telling them that he doesn't need the accommodations. What chance is there that they are actually going to follow it this time?

Ms. M's comments went through three people before it got to me and my blood pressure soared. I thought I would work to get the IEP finalized the way I want it, then ask for Andrew to be taken off of her caseload. Then I realized I might get less foot dragging and more cooperation if I got a new teacher right away. I fired off a witchy e-mail to her, and forwarded it to her vice principal and the director of special education. I wrote a formal request to the principal of the school, explaining my reasons for the request. The case conference committee is supposed to work as a team to meet the needs of the student. If she is undermining me, and minimizing or denying Andrew's disability, then she shouldn't be part of the team. PERIOD.

I knew she wasn't a good match for Andrew, and I tried too long to work it out. I tried not to rock the boat because I know what it is like to be a special education teacher. I know that it is important to develop good relationships with staff to best meet the needs of the student. She isn't interested in meeting Andrew's needs. She doesn't believe in Individualized Education. I hope that by the time this is over, she never does this to another parent or student again. If she quits or gets fired - so be it.

Great Opportunities

Sun, 28 Oct 2007 01:43:29 GMT

I got an interesting e-mail today, asking me to participate in a focus group on transition for young adults with High Functioning Autism. The study is sponsored by the Indiana Resource Center on Autism. I decided to participate as a parent instead of an educator. I am excited about participating in something that could potentially help many young people with autism, as they grapple with the challenges of becoming independent adults. I hope to prepare myself for the struggles I see ahead of me concerning Andrew's transition to adulthood. Here is the message:

In Vocation and Education (STRIVE) will be an innovative, skill-building resource designed specifically for late adolescents and young adults ages 16 to 21 with Asperger Syndrome (AS) or high-functioning autism (HFA) as they transition from high school to post-secondary education or work. STRIVE will consist of several interrelated components that will be designed to create a cohesive and comprehensive curriculum. The content will be created for use by paraprofessionals, advocates, school counselors, and special education teachers who work directly with young adults with AS/HFA in a variety of settings, such as schools, advocacy organizations, or support groups. A key aspect of STRIVE is the peer-based mentorship component, where young adults with AS/HFA who have transitioned successfully themselves are encouraged to co-facilitate the program along with the adult advocate or teacher. Overall, the goal of the STRIVE product will be to provide skills and resources to young adults with AS/HFA to help them transition to their adult phase of life easily, effectively, and successfully.

Specifically, the STRIVE curriculum components will include a facilitator's guide, student workbook, and video/DVD.

There are three focus groups:

1^st group I need 10 high school special education teachers, school counselors, and advocates;

2^nd group I need 10 parents of adolescents and young adults with AS/HFA (ages 16 to 21); and

3^rd group I need 10 adolescents and young adults with AS/HFA (ages 16 to 21).

Participation will be entirely voluntary with a small stipend. The purpose of the focus groups is to elicit information on important topics, issues, and resources available and/or needed for young adults and facilitators in relation to the product. Information will also be gathered to guide the development of the content and design of STRIVE. Sample questions have been provided in below.

Parents

* What information and resources do you need to help your child transition successfully?

* What issues and/or stresses come up when you think of the transition past high school?

The research team will lead all participants through a series of queries to elicit this information and facilitate group discussion. Following the focus groups, the PD and Research Associate (RA) will develop a descriptive narrative based on the focus group responses, which will be used in the development of the materials. The information gathered through this formative research with the key stakeholders will provide project staff with invaluable insight into the feasibility and appropriateness of our preliminary ideas and suggestions for improvements, and the information will be incorporated into our product specification plan.

A few years ago I was asked to write an example case study which included an IEP with behavioral plan for a special education teacher prep course. I turned it down because I didn't want to dedicate the amount of time it would require. This however seems totally worthwhile. I think it is awesome that I can participate in Autism Team Training and STRIVE. These experiences are going to help me in my future career doing something related to Autism - whether I am an autism consultant for a school district, or a presenter for teacher or parent training, or even teaching in a college.

The Important Meeting

Fri, 26 Oct 2007 18:57:32 GMT

If you don't have a special education student, you might not be familiar with an IEP, which stands for Individualized Education Program. It is a plan which includes strategies and accommodations to help a student be successful in school. Andrew has had IEP's written every year since first grade. Last year I was totally unhappy with his IEP, and for no reason I can recall, I didn't fight it. I think it must have been after effects of my surgery. Anesthesia and I didn't get along well, and then there was pain medication after that. The conference was held while I was still off of work, recovering. In addition to not liking the plan in the first place, I could not get the school to follow what he did have. I finally decided that I had to be a *itch, and throw around some threats.

Today was Andrew's IEP conference. My coworker, Rachel, was with me. Rachel is smart, beautiful, thinks outside the box, and is not afraid of confrontation. The other people in attendence included: the special education teacher, the autism coordinator, the director of special education, the vice-principal, Andrew's guidance counselor, Andrew's English teacher, and Andrew. They had a whole new attitude. I could feel a difference as soon as I was greeted. Andrew demonstrated some of his autistic traits in rigid thinking, receptive language, and processing time. The special education professionals and I were easily able to identify and point out those traits to the regular ed teacher, the guidance counselor and the vice-principal. I don't think the Engish teacher has much use for me and doesn't want to make accommodations for Andrew, but just maybe she will comply with the IEP, since she knows I am not an idiot. Maybe someone talked to her about lawsuits... I felt that the two hours was productive and think that I might actually have a chance to get Andrew through high school - if they comply with the IEP. A good plan is only good if it is followed.

Andrew is 16 years old

Thu, 25 Oct 2007 10:57:36 GMT

Ok, for a week now. I can't believe I didn't blog about it. On his birthday (October 19) he got to pick where we had dinner as a family. He chose Chinese. Devon didn't go with us, but Craig's mom did. We all pigged out on Governor's Chicken, egg drop soup, fried rice and egg rolls. Andrew's three friends came over to spend the night. They just stayed and stayed. Two of them spent the night again Saturday night and I finally had to tell them to go home Sunday afternoon.

Andrew's got $120 in cash and checks, that he lost by Sunday. I spent 90 minutes cleaning out EVERYTHING in his room, searching for his money. No luck. Usually he is the one child I can count on to hold on to his money. I think one of his "friends" took it, but Andrew refuses to believe it. It makes me ill to think about losing all that money.

Tuesday the celebration continued. Our gift to Andrew was sending him to a concert with the youth group. He saw Relient K and Switchfoot. I had to get up at 12:15am to make the 20 minute drive to church and wait for the bus to return from the concert at 1:00am. When we got home, I couldn't get back to sleep for a while. I hate to lose sleep. It makes me stressed and cranky. It was totally worth it though, because Andrew had a great time, and even said that he would be willilng to go back to youth group again. We had a deal that if he went to youth group three times in a row, I would pay for him to go to the concert. We both held up our parts, and now he says he will go again. Yay!

Over the weekend I reflected on the past 16 years of raising Andrew. We survived alot:

siezures
night terrors
broken hand
blood work every few months for years
verbal and physical tics
stitches
bed wetting until age 8
tantrums for every transition
speech therapy
two overdoses of medication that required trips to the hospital
many IEP meetings
neurology appointments
seeing a psychiatrist or two
counseling
having him wander off and be brought home by the police
when he was 6 he almost burned down the house

There are many more rough times that I could write about, but it is time to write about the great things about raising Andrew:

He is extremely loyal to his friends
He likes taking care of people. When his friends spend the night he covers them with blankets and cooks for them.
He kisses and hugs me goodbye every morning, and tells me that he loves me. It doesn't matter who is around - even other teenagers.
He hugs his friends goodbye along with a slap on the back and says, "Peace, Dude." I think that is his cool way of saying "I love you, man."
I have a bunch of funny stories to tell about the adventures of raising him.
When we can pry him away from computers or video games he draws great cartoons
He absolutely loves roller coasters and it is great fun to see him after he has ridden the Dragster or any other death-defying coaster that I wouldn't get on in a million years. His smile goes from ear to ear.
Some days he plays for hours with Victoria. I know it is part of his immaturity that he can be entertained with an 8 year old, but it is great to see that sometimes he forgets that he hates her.
He loves to eat and always tells me when he especially likes what I cooked for dinner. It is great to get a compliment now and then.

It must be that autism thing again

Mon, 08 Oct 2007 01:28:20 GMT

Tonight Andrew said, "Don't you just hate it when something changes a little bit and it makes you feel all wierd? Like when your desk is moved just a couple of inches and you know something isn't right and it takes you a bit to figure out what it is?"

"Well Andrew, I cannot say that I have felt that way. It could be something unique to you."

"Oh well, last year my health teacher hung up some posters on the wall, up high by the ceiling and I knew as soon as I walked into the room that something was different. It took me a bit to figure it out. I just hate that feeling. Oh and when I sleep at night, my wall has to be by my right arm. If it isn't I cannot sleep." That explains why he flips from one end of the bed to the other when he rolls over. When he is on his back, his head is at one end of the bed, but when he is on his stomach his head is at the other end. It is amazing what a short, random, conversation reveals about my darling son.

I have often heard that the reason people with autism get sensory overload is that they notice everything. They cannot filter stuff out. Andrew seems like he is in his own little world a great deal of the time, but I am beginning to realize that he notices much more about his surroundings than I do. Now if he would just notice and care about body language, facial expressions, and learn the "hidden" rules of socialization.

Andrew on vacation

Sat, 21 Jul 2007 13:23:41 GMT

Everyone was meeting at the breakfast buffet yesterday before we left for home. Craig and I were running around getting our car loaded before eating breakfast, so that we didn't have to walk all the way back to our room. The Breakers Hotel is HUGE and it was a major hike to our room and back to the lobby. I saw Andrew on the way out to the car and told him where to go meet the rest of the family. While I was in the parking lot, my mom called to see where we were and said she didn't know where Andrew was. Great.

We got into the building and went and stood in line to be seated. Devon called Andrew to find out where he was. I heard Devon telling Andrew that he was in the wrong restaurant. As we were escorted into the dining room, I saw Andrew sitting with my sister, her kids ,and my parents, with a big plate of food in front of him. As I walked up to the table I saw my mom take Andrew by the arm and put her face in front of his (OH crap!) and say, "You do not talk that way!" Andrew jumped up from his seat and shoved my mom. My Dad said, "Get him out of here NOW!" My mom got back in his face again (not a wise move with a 6'3" autistic boy) and said, "YOU do not shove me. Do you hear me?" Andrew shoved his chest into her and said, "Why? You wanna piece of this?" I swore he was going to rip her head off. Somehow Craig got Andrew steered out of the restaurant as all of the customers looked at us like we were part of a bizarre side show. Devon and I beat a hasty retreat as well.

Andrew took off running out of the hotel, and Craig chased him. I hid in a bathroom and tried to collect myself so I didn't turn into a blubbering idiot. I finally started walking around the outside of the hotel to calm myself and look for Andrew at the same time. Craig called me and said that he managed to get Andrew and steer him to the car to wait for everyone to get ready to leave. Victoria was the only one in our family who actually ate breakfast. Devon and Andrew were on a rant about old people and spoiled little kids when I got to the car. I knew better than to try and reason with them at that time. Craig had tears in his eyes when I went to get in my sister's van with Victoria for the ride home. I knew exactly how he was feeling.

I waited until evening to talk to Andrew about the whole fiasco. When Devon called Andrew he didn't see him in the restaurant. Andrew was confused and frustrated because Devon kept saying he was in the wrong place. He was sitting with his family eating. How could he be in the wrong place? He was concentrating on what Devon was saying on the cell phone and the three little girls all started talking to him at the same time. He yelled at them to shut up. One thing about Andrew's disability is that he cannot tolerate a bunch of voices at the same time. He hasn't been able to handle it since he was 4 years old. This was even worse because he had 4 voices directed at him at the same time. Then my mom got in his face about yelling at the kids (voice number 5 - with attitude to boot) and he blew. My mom touched him and got in his face a second time. YIKES! Thank God he didn't hit her. He is one big, strong, young man.

Disciplining Andrew has to be done at a distance, very calmly, with as little malice as possible. Apparently people don't know that, or forget who they are dealing with when they get irritated with Andrew's behavior. People (teachers included) forget about his PDD-NOS, and treat him the same way they would any disrespectful kid. I don't think he should get away with being rude, but I have learned that addressing the problem has to be done when he is calm, not in the heat of the moment. He doesn't have much self-control and his processing speed is slower than most kids his age. He doesn't get social cues and doesn't care about them either. It is what it is, and although I understand that, I am still deeply ashamed and disappointed in both of my sons. I wish I could run away from home now...

A Note From My Son

Sun, 10 Jun 2007 11:05:42 GMT

Friday I came home from a long lunch with a bunch of teachers and found this note on my computer stand:

Mom and Dad,

Tarry knocked on the door and woke me up from my slumber. He asked me if I wanted to go see Pirates 3 with him so I am out.

P.S. Tarry wants to stay the night and I'sm going to need more money for CiCi's very likely tonight please. Thanks!

P.S.S. Whose triple chocolate cheese cake is that?

Sincerely,

Andrew.

I got home at 4:00 pm and had no idea when he had left the note. At 9:30 pm he still wasn't home. I have met Tarry once. He lives in the very scary trailer park at the end of our road. The park consists of cracker box trailers from the 1960's that are packed in right on top of each other. The rent is outrageous but includes heat, water and electric and the mowing of the grounds. The park caters to transient families because they pay rent weekly.

I kept calling Craig from the festival, asking him if Andrew had arrived yet. I was picturing myself going door to door in that trailer park, searching for my son. I wasn't relishing the idea. We have talked to Andrew over and over about checking in with us. He keeps arguing that he is 15 and shouldn't be treated like a baby. He might be 15 and 6'3" but he is still socially unaware and lost in his own world a great deal of the time. As I have mentioned before - we don't live in a nice neighborhood and we have very busy streets on three sides of it.

Finally at 10:00 pm Craig called me and said that Andrew was home with Tarry. They had been hanging out at CiCi's for hours after the movie. (Guess he didn't need extra money.) I know CiCi's lost money on Andrew's visit! I was extremely relieved to find that my son was home safe and decided that I had to do something to reduce my worry. We got him a cell phone. I am going to freak every month when I pay that bill because we have 5 cell phones on our contract: Craig, Devon, Andrew, Craig's mom and me. We share 1000 minutes, have blocked text messaging and downloads, and paid $128 a month BEFORE we added Andrew's phone. Crap. I have medical bills to pay and then I add another expense. My peace of mind is worth it, as long as he doesn't LOSE THE PHONE. God, please help Andrew keep track of that phone. Pretty Please?

Why won't they just follow the IEP?

Tue, 17 Apr 2007 00:02:11 GMT

Getting the school to actually follow Andrew's IEP has been a challenge since the 7th grade. It drives me wild. My blood pressure skyrockets whenever I realize that the school isn't doing what it is supposed to. Maybe the school administration needs to have an inservice and instruct the teachers, "If you don't follow the IEP's, some parent is going to sue the SHI* out of us and it will probably be Andrew's mother! It doesn't matter if you think Andrew has a disability or not. It doesn't matter if you think he is putting forth his best effort. It is the LAW!!! His mom is a special education teacher. She actually READS Article 7. Go READ the IEP and do what it says!

I believe if a teacher doesn't want to follow the IEP, then Andrew should not have that teacher. Luckily his 8th grade principal realized that all heck was going to break loose at a conference where a teacher refused to follow the IEP, and he had Andrew moved out of the class the very next day. I respected that man a great deal after that. He knew what was best for Andrew and the school.

Here is a copy of the e-mail that I sent to Andrew's special education teacher:

Hi ____________,

I am a little slow in getting this to you, but it has come to my attention that Andrew is NOT getting a copy of guided notes in Health. In his IEP, under "Other Accommodations and Notes" it says that Andrew will be provided with a copy of guided notes. Also Andrew says that there is not an aide in Health. In Andrew's IEP under "Additional descriptors of the least restrictive environment" it says that Andrew will receive para and/or coteaching services in the regular education classes. I realize that Health isn't listed in the Recommended Special Education Services, but Health is a required regular education class. He needs support in that class.

I asked Mr. Banks for the assignments in Health and he was kind enough to mail them to me, but the papers and instructions made absolutely no sense to me. He told me all of these page numbers, but Andrew tells me that there isn't a text book. Then I searched Andrew's Health notes that he is supposed to be getting in guided format and found that Andrew has been writing them all himself, and he says that he writes too slowly and cannot keep up so he is missing a bunch of them.

I know it isn't your fault that Andrew's IEP is not being followed. You cannot be everywhere all the time, making sure that teachers are doing what they are supposed to. That is why I am sending a copy of this e-mail to your building principal. It is his job to make sure that the law is followed. I have had nothing but frustration with __________ Community Schools in regards to Special Education Services. For some reason the teachers feel that they are exempt from following the law. I will continue to monitor the school's compliance with the IEP and will take further action if needed.

Also, I wanted to let you know that I checked with IN-Source, the county special education co-op, and my vice-principal, and found out that it is NOT true that Andrew's tests cannot be modified to exclude one distractor. That is __________ Community Schools' rule - not the state's. If I have to pursue action against Elkhart Community Schools, I will be bringing that up as well.

I have prep period at 2:05 pm every day. I can also be reached before school, between 7:45 and 8:15 am. The direct number to my office is __________. I would appreciate it if someone would contact me to address these concerns.

Sincerely,

Kathleen __________

Further encounters with Mr. Autistic

Mon, 01 Jan 2007 14:49:21 GMT

I cannot help Andrew with his Algebra 1. He has progressed to the point that is above my head. His teacher was kind enough to give him a list of assignments he can make up and all of the corresponding worksheets. I had to unground him because he couldn't make any progress without someone to help him. The Rose - Hulman Homework Hotline is closed because the students are on Christmas break so we cannot even call them. Darn.

I was at my witts end when I looked at an e-mail I got from the school system's autism consultant. Ruth checks on Andrew from time to time and was his special education teacher for two or three years in grade school. When teachers are being unreasonable, feeling that Andrew's performance or behavior is a result of my bad parenting, I call her to come to meetings. Anyhow, she asked me to call her at home and tell her how Andrew is doing. I did. I told her about the math. She met us at a local library to see if she could help him. She got stuck too, but called her husband who was a math major in college and he gave her some notes over the phone. She worked with Andrew for an hour and a half, but didn't make any real progress. He wasn't paying close attention and got frustrated too easily. Still, I was extremely grateful for her willingness to give up time during her vacation to try and help Andrew. When they decided to throw in the towel on the math, we sat in a grouping of chairs and chatted for a few minutes.

Devon was with us, so the four of us talked about Andrew's plans after high school. He declares that he is going to support himself with his band and being a writer and cartoonist. Maybe this is a step up from last year's conversation about being an international spy or living in the streets with his computer, but not much of one. He has a bass guitar that he doesn't play. He thinks that he doesn't have to learn to play actual notes or read tableture because he is going to make up his own music for the band. The "band" includes his two best friends who also don't play any instruments, although one just got an acoustic guitar and the other wants to play drums. Various members of our little group tried to point out that in order to make money in a band, he had to play popular music and get jobs playing in clubs, so people would actually pay to see them. In order to do that he would have to take lessons and practice like crazy on his guitar. His band members have to do the same. Then they would have to learn to play together... Andrew rigidly denied that any of us knew what we were talking about.

He went on to his writing, and admitted that he had never completed a single story he has started so far. I like to read his writing but because of his autism he gives lots of description and no emotions or character's thoughts. I just like it because he is my son. Instead of focusing on his lack of writing skill, we asked if he knew HOW a person made money from writing. He doesn't have a clue about the editing process or getting a story published. He was getting very frustrated by our explanations, because he can only see things his way and the rest of us are WRONG. He IS going to live life his way and we needed to leave him and his dreams alone. Ruth pointed out that he cannot live with his parents forever and he would need a job to pay the bills while he worked on his band and his writing. Once again he said that he will make his money from his band and his writing. He doesn't need a regular job, unless he works at Dairy Queen so he can pig out on icecream...

Now that was a frustrating encounter, as any discussion involving reality or social skills is. However, my mood lightened a little when Andrew and his best friend walked down to Wendy's near our house and got Frostys. My generous son bought one for his friend, his dad and Victoria. Sometimes he forgets how much he hates Victoria and shows a little kindness. Thank goodness for the good times, they make the bad times more bareable.

The grounding of Mr. Autistic

Fri, 08 Dec 2006 11:16:54 GMT

If I had to have a child with an autistic disorder, couldn't he have been a brainiac? The struggle to get Andrew to do his work is wearing me down. Just two weeks into the trimester he had three F's; one in Biology, one in Math and one in Foods. I take him to school every day and tell him to find is teacher and get help with his math. The problem is that he never remembers to get a pass while he is in class, so that he can get in to see the teacher. *sigh* He has been grounded for weeks now - no friends, no television, no computer. Last weekend I had to tell Andrew that he couldn't go to the family pool hall with my husband, my husband's friend and his best friend. Andrew begged pitifully, but I stood my ground. The grounding lasts until he gets all of his grades up to C's or better. I am afraid I will live to regret that decision.

What does a kid do when he has nothing to do? You would think he would read, draw, strum his new bass guitar. How about making up his late work? Nope, he eats, sleeps, listens to music and plays with Victoria. Andrew has a love/hate relationship with Victoria. It drives me crazy because he is so cruel to her. Jealousy consumes him most of the time. Then at other times he can be so cute with her. The other day he did his best to get her to listen to him read "A Series of Unfortunate Events." She wanted nothing to do with that. Last night he tried to teach her chess. (He doesn't really know how to play, but knows what moves the pieces can make.) They listen to Andrew's favorite CD by Relient K called "Deck the Halls and Bruise Your Hand" over and over... Yep, I am definitely going to be nuts before the grounding ends.

Someone finally noticed

Sun, 12 Nov 2006 14:35:24 GMT

Andrew has wanted a girlfriend forever. He had a girl who liked him in the 6th grade and he convinced me that he had to use his allowance to buy a ring for her. We went to WalMart and he carefully picked out a ring with a stone in the her favorite color. It cost a whopping $7.00. They didn't "go together" very long. Junior High was void of any romance.

Friday night Andrew had his first "date." I was more nervous than he was. I drove him to the movie theatre to meet a girl named Trista and her best friend and her boyfriend. They went to see Santa Claus 3. When I asked if he had a good time he said, "Yeah," and that was it. He didn't give me any details.

Trista is blonde, slightly on the chubby side and doesn't wear any make-up. She is a year older than Andrew. I have been telling Andrew for two years that someday a girl was going to notice that he is extremely handsome and polite. Apparently Trista commented to a friend that Andrew is "hot" and she passed the word on to him. They started burning up the phone lines immediately. I don't know how long this romance will last, but at least Andrew knows that he can attract a girl's attention.

My Baby Boy is 15 !!!

Fri, 20 Oct 2006 22:39:39 GMT

Yesterday was Andrew's birthday. He has been grounded for weeks for his refusal to do his school work, but I made an exception for his birthday. When I got home from work he was at the neighbors' house watching a creepy movie. His dinner request was fried rice. I was too lazy to go buy the ingredients and then cook it, so I stopped at a Chinese restaurant and got fried rice, egg drop soup, governor's chicken, sweet and sour pork, vegetable egg foo yung, fried wontons and crab rangoon. The bill was $40.00. Being lazy sure costs a lot.

After dinner I gave Andrew his card. In his card was a note that told him his gift was hidden under his brother's bed. It was a bass guitar with a case. He got it and brought it into the family room. That is when I discovered that the case was locked and my darling husband lost the key! After a frantic search we gave up and Craig had to break the lock to get it open. Andrew was very happy and Devon immediately showed him how to play a few chords.

The bad thing about giving him a guitar is that now he needs a strap and a bass amplifier. I told him to use his birthday money and Christmas money to get whatever he needs. I don't know if Andrew is seriously intrested in playing the bass, but he never asks for anything, so when he mentions wanting something I sit up and take note. If he pesters Devon to show him how to play, I will check into lessons for him. Otherwise it can sit and collect dust.

Tonight is Andrew's party with friends. His three friends are here and have been here for hours - even before I got home from work. I had to go to the grocery store before coming home. I purchased five frozen pizzas, three 2 liter bottles of generic pop, two brownie mixes, ice cream, microwave popcorn, cinnamon rolls and milk. Just looking at all of that junk made me feel ill. Spending $40 for food, for the second night in a row made me feel even worse. Now get this - it isn't over with yet. Sunday we go to Craig's mom's house for another party which includes Craig's brother, sister-in-law and nephew. Grandma is providing the Dairy Queen ice cream cake and we are making tacos for 9 people. Cha- Ching! Good thing I only have three kids and they each only have one birthday a year.

I am throwing all of the kids out of the house at 10:00am and taking Drew to get his picture taken at 11:00 at Sears. I am sure he will need a nap after that, because he and his friends will be up all night watching movies, playing video games and playing poker (just chips, no cash). I don't know when I can crack the whip on him to do some school work (and get mine done) because Craig and I have plans on Saturday night, Sunday morning is church, and Sunday afternoon is the party. Sometime I need to do housework and laundry. Weekends are never long enough!

Mr. Autistic

Tue, 17 Oct 2006 22:55:25 GMT

As a special education teacher I understand that I am supposed to be politically correct and be up on all of the latest educational terms. However, as a mom of two children with disabilities, I get sick of that crap. Besides, deep down inside, I still have a rebellious streak. So, sometimes when I talk to my friends about Andrew's latest escapades, I call him "Mr. Autistic." I know there is a lot more to Andrew than his autism, but when he is driving me crazy, I cannot help but focus on the fact that he has Pervasive Developmental Disorder/ Asperger's. Different doctors have given different diagnosis. Whatever you call it, he still walks around in a coma most of the time and is socially out of it.

Andrew is also extremely rigid. When he has something in his head, he refuses to admit he is wrong and he cannot see anything from another person's point of view, and he absolutely will not agree to disagree. He will not quit unless he has the last word in any discussion/arguement. Consequently he gets into a great deal of trouble in school. He is obnoxious. I let him get a shirt with one of those smart sayings on it, because it suits him so well - "People who think they know everything, annoy those of us who do." Actually, he asks plenty of questions so he doesn't know everything, but like I said, he gets something in his head that he thinks is correct or true and won't back down for anything.

Now mix that with his difficulty with expressive and receptive language. Somehow all of the "experts" have managed to overlook this problem, but it is glaringly obvious to me - his loving mother. His vocabulary is much lower than the average 15 year old. He does not express feeling and emotion easily. He cannot get to the point when he is telling or explaining something. He has to give all the details, so when he wants to "share" I have to be prepared for a monologue. If someone interrupts his monologue he gets extremely irritated, loses his train of thought, and begins again. *sigh*

Imagine how difficult it is for him to read a text book and find the information the review questions are asking for. He cannot figure out what is important information. He also cannot "read between the lines." Anything implied in reading material is lost on him. No wonder he now hates to read.

Many times when someone tells Andrew to do something or explains how something is done, he pretends he knows what they said, and then does nothing. He is getting better at asking me to clarify, but I am pretty sure he doesn't do it at school. Usually I have used a word that he gets stuck on. Instead of looking for the general meaning of a statement or request, he focuses on that one word, and decideds he cannot follow through because he doesn't know what to do. Sometimes the word is so common, that I have trouble understanding how he wouldn't know its meaning. God forbid anyone gives him more than one step/instruction at a time. They had better not hold their breath while waiting for completion...

Gosh, I almost forgot processing speed. I wish that people could hear or see the wheels turning in Andrew's head, so that we know he is thinking about things. Many times I think I have to repeat the question and he gets mad at me because he is "thinking." But then again, there are times when he has totally lost his train of thought and is in his own little world. It has got to be a nightmare for Andrew's teachers. Actually, it cannot be too fun for Andrew, because we adults "nag" him to perform.

Andrew moves like a snail. Honestly, he easily takes 10 - 15 minutes to put on socks and shoes. Taking out a piece of paper is a major undertaking. We can never expect Andrew to "jump when we say jump" even if it is to get ready for an activity that he really wants to participate in. The more we pressure him to "hurry up" the more frustrated he gets. He cannot make it to his locker and then to class on time, so he carries every one of his books and binders to every class.

If Andrew stops to go to the bathroom on the way to class he will miss it entirely. He has been reported as truant because of his long bathroom breaks. He won't go to the bathroom in front of anyone, so he has to wait until everyone is out of the bathroom to use the urinal. If he has to have a bowel movement he has to be naked, so that also requires an empty bathroom. Plus he "camps" forever once he sits down. These wierd habits cause problems at home too. We only have one bathroom!

Don't get me wrong, I love "Mr. Autistic", because he is my darling Andrew, but sometimes a mom just has to vent. Now I have to go and coax, prod and nag him to complete some school work. What a joyful way to end my day!

Preparing

Tue, 11 Jul 2006 00:49:37 GMT

Today I have been attempting to prepare for a short vacation. My husbands youngest sister stopped by and visited for an hour or so and brought her 18 month old. It was great to see them. We only see them maybe twice a year despite the fact that they live 20 minutes away. Then my oldest started a big scene which totally wrecked my day. Somehow I managed to strain my left wrist which is hurting like crazy. I cannot grip anything and any movement is extremely painful. (Which means this is going to be very short.)

Tomorrow morning Andrew, Victoria and I leave for Chicago with my mom and dad, my sister and her kids, and my brother and sister-in-law and some of their kids. We are planning to go to the zoo and spend the night, and then get up Wednesday and leave for a very short trip to the Wisconsin Dells. When I come back I will have new pictures and I will write about the trip.

Ta-ta-for-now!

Autistic Adolescent Growing Pains

Tue, 13 Jun 2006 12:29:45 GMT

Saturday evening Andrew and I walked to a festival in a park near our home. Every year there are bands playing, tables full of crafts and junk, and tons of "fair food." He wanted some chili cheese fries and I wanted some fried potatoes that are sliced super thin - like potatoe chips.

As we walked along we had some pleasant conversation and I was glad to have some time alone with my son. I am not good at calculating distance, but my guess would be that the walk there would equal about 10 blocks. My legs were already aching a little by the time we got there. wimpy, wimpy, wimpy. The first thing we did was go for the food. We sat and ate our food with my cousin, her kids and her parents. Andrew clammed up. He didn't say a word the entire time we sat there, unless I asked him a question. I am glad he wasn't obnoxious, but it was painfully obvious how inept he is in social situations. After we ate, we walked around the festival.

Andrew greeted many students from his school. None of them stopped to talk and some just plain ignored him. He didn't comment, but I know how much it hurts him that he doesn't have friends at school. Then a miracle happened - a petite girl came around from behind him and practically jumped on him. She yelled, "Andrew!" She was very cute, but I notice that something was wrong with her teeth. I moved away and tried to blend into the crowd so that Andrew could talk to her. I think his only words were "What's up?" As quickly as she showed up, she bounded away. Andrew was grinning from ear to ear. He told me the girls name and told me that she was the first girl who was ever nice to him at his school. I told him that I thought she was very cute. He said, "I think so too, even if she has teeth like Victoria." (silver caps with enamel wearing off.) I noticed that he hesitated to walk the direction we were going. After getting confirmation from him, we spent some time walking in the direction the girl went. ;-) We didn't see her again.

On the walk home Andrew turned into a 6 year old again. He was making funny noises and using wierd voices. He was trying to get me involved in a dialogue that he was making up as he went along. He would say some strange thing and expected me to react. I participated the best I could, but on the inside I was wondering where that "switch" was, and what had flipped it. Oh the mysteries of adolescence and autism.

Talking about Teenage phase or autism?

Sun, 04 Jun 2006 11:51:56 GMT

Quote

Teenage phase or autism?

While many things about raising autistic children are getting easier, others things are confusing. I have trouble distinguishing between what is disability related and what is annoying, disrespectful, teenage behavior. How do I handle it, whatever it is?

Tuesday my parents took my sister and two of her children, and Andrew, Victoria and I out to a wing place for lunch. Andrew was having trouble deciding if he wanted to go in the first place. He was all settled down playing his favorite game online. So he decided to go, but was disgruntled about it.

He was quiet on the 15 minute drive to my sister's house. When we got there he wanted to ride with my sister Debbie and her son Greg. I guess he was rude and sarcastic with Greg on the way to the restaurant. When we got in the restaurant I could see that he was ready to explode. He had this ugly scowl on his face and pinched Victoria and made her cry. Ok, now what? I didn't drive so I couldn't take him home unless someone drove me back to get my car.

I knelt down next to Andrew while he sat at the table and tried talking to him. Knowing that autistic kids are visual, not verbal, I was trying to figure out what to do. I talked softly and evenly and asked him if he could describe what was wrong, why he was acting so mean and grouchy. I offered to take him on a walk outside (and it was freezing!) so that he could get away from all of the people. He refused. I rubbed his back and then gave Victoria 50 cents to play the video game in the restaurant and sent Greg and Emily with her. My 6'1" 14 year old boy put his head on the table and covered his ears. *sigh* I should be used to his immature behavior by now, but it still embarasses me. I finally gave up and walked away. I sat down with my parents and sister and tried to monitor Andrew's behavior from a distance. My dad was sure that Andrew was being a sulky bratt and should be ignored. I admit that I wondered the same thing, but then knowing what I do about autism, I realized that my sulky teenager could go beyond bratty and right into cruel and destructive.

When the waitress came over, Andrew had no idea what he wanted to eat. For some reason he hates menus. Even though he is perfectly capable of reading the menu, he refuses. He gets grouchy and frustrated. If I read it to him he gets overwhelmed by all of the choices. I have learned to give him three choices. On that day, he wouldn't or couldn't make a choice from the three I read for him. The waitress had to be wondering why I was ordering for a tall, handsome, teenage boy with a mustache. I finally chose his old stand-by, chicken tenders and fries.

When the food came Andrew was still glowering and acting sulky. He didn't take a single bite of his food, just pushed it to the side. I walked over and casually asked if something was wrong with his food. He said that he didn't know because he hadn't taken a bite yet. I asked him to taste test it for me and let me know if it was ok. He sniffed it, which is another one of his strange behaviors, and started eating. We made it through the meal without a meltdown or arguement. Whew, what a relief.

Talking about Reality Check

Sun, 04 Jun 2006 11:43:28 GMT

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Reality Check

Some days I can go along and pretend (or hope) that Andrew will grow up and live a normal life with a few eccentric habits. I let myself get comfortable and start dreaming. Then all of a sudden something happens that brings me back to reality.

Today my reality check was a conversation with Andrew. Before we got out of the door to go to school he was being rude, disrespectful and sarcastic. Craig got on him to get his rear moving, and that set him off. He ended up telling us that he doesn't care what we tell him to do, he told me to shut up and called Craig a stupid bast***. Then he went on to tell us that he is not being rude, just telling us how he feels. I tried talking to him on the way to school.

Me - Andrew you just cannot talk to people that way. It is rude and disrespectful and it makes people angry.

Andrew- I don't care...

Me - But talking back to your elders and people in authority gets you in trouble.

Andrew - So.

Me - Andrew someday you will have a job, and you won't be able to keep it if you talk to anyone that way.

Andrew- Mom, I am not going to work, so you don't have to worry about that.

Me- Yes Andrew you have to work to earn money to pay bills, like rent for your apartment, and food to eat, and a car to drive.

Andrew- I am going to live on my computer.

Me- And where will you live?

Andrew - no place

Me- In the street?

Andrew- no on my computer

Me- Where will you plug your computer in?

Andrew - I will find a place. But mostly I am going to travel.

Me - How will you travel with no money and no car?

Andrew - I will walk everywhere I go.

Me - And how will you get food?

Andrew- Kill animals.

Me - How will you kill them? You don't have money to get anything for hunting.

Andrew- I will use sharp things that I find.

Me - Ok, so you are going to walk around the country, hunt for food, live on your computer, and live on the street.

Andrew - You got it!

Ok, so maybe Andrew doesn't need to know what he wants to do with the rest of his life, but he should understand that he needs to work to survive in this world. He sees Craig and I working and I was relatively sure that he knows that we work so we have a house and food and clothing and a car to drive. In fact, in 6th grade he participated in a token economy where every student had a job, and a salary and bills to pay with checks. His inability or unwillingness to face reality was a real reality check for me. It put me in a melancholy mood.

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Talking about Another funny kid story

Sun, 04 Jun 2006 11:42:32 GMT

Quote

Another funny kid story

Andrew appeared to be an angel when he was small. He had big blue eyes, a wide grin and blond curls. Unlike most kids with and autistic disorder, he was very affectionate. (Which caused me to deny the possibility of autism when it was mentioned.) His speech was delayed and he didn't have much of a vocabulary until after he turned 4.

One day he came and took me by the hand and tugged at it to let me know he wanted to show me something. He took me to our dining room to show me what he had made - an original piece of artwork on the wall - in the medium of black marker. He was grinning from ear to ear and held his arm out to showcase his work like a small, male version of Vanna White. He was so proud that I didn't even punish him for his life- sized self-portrait. Instead, I asked him to tell me what he had drawn...

Me: Wow, Andrew what is that? An angel?

Andrew: Me!

Me: Really... Well tell me what are these, your arms?

Andrew: My wings.

Me: Oh, so you can fly. What about these?

Andrew: Eyes

Me: This?

Andrew: Mouth

Me: And here in the middle of your face, what is that?

Andrew: Nose

Me: Well that is a very nice face. But what is this round thing between your mouth and your nose?

Andrew: BOOGER! (grinning and laughing joyfully)

I had to laugh with him. I also kept the portrait on the wall so that Craig could see it when he came home from work. I attempted to scrub it clean that evening. Even though it was washable marker, black marker on antique white walls just doesn't come off completely. We had the shadow of an "angel" with a booger on our wall until we painted the dining room.

Talking about Awards Ceremony

Sun, 04 Jun 2006 11:38:26 GMT

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Awards Ceremony

Thursday evening we went to the Junior High Awards Ceremony. Let me tell you that was a first. My boys have never been known for good behavior or excellence in academics, and have never participated in school activities. When we got the notice that Andrew was receiving an award I knew it had to be Most Improved in Math. A few months ago we got a post card in the mail from his Math teacher: Wow!! Just a quick note to let you know that your son, Andrew is doing terrific in my math class!!(Currently: 99% A+). Mor than that , I appreciate his enthusiasm and contributions to our class discussions; he has really become a great listener and learner. I look forward to the rest of our year together. Sincerely, Mr. S. I still have the note posted on my refrigerator, because I am so proud of him.

Andrew's time in Math didn't start out too great this year. He started out having two Math classes with the same woman teacher - Mrs. E. One was remediation because he didn't pass ISTEP. The problem was that the teacher was very rigid. I called a conference to talk with Andrew's teachers about his disability, where he was and how far he has come, and to give them a few tips for dealing with him. When I addressed modifying the number of math problems Mrs. E balked. She insisted that it was necessary to give the students 30 - 60 math problems a night. She refused to modify Andrew's assignments. I pointed out the fact that modifying his work load was in his IEP. She didn't care.

Well I have to hand it to the new assistant principal. He took me into his office after the conference and told me that he would be changing Andrew's math teacher immediately. That is when he got Mr. S. Andrew is back to loving math again. He says it is easy and his favorite subject. I know it is important for students to experience teachers with different personalities, and to realize that things cannot always go their way. However when a teacher refuses to follow an IEP, and has a personality clash with the student - it is best to get the kid out of there.

I also found out that Andrew is allowed to work out the problems HIS way. The school system uses EVERYDAY MATH. Now I know many teachers who sing the praises of this curriculum, but Andrew went from K - 5 with normal math, then in sixth grade the school system switched to EVERYDAY MATH. My darling son went from straight A's in math to D's and F's. They were trying to undo everything he had learned and make him solve problems differently. Apparently Mr. S allows Andrew to use methods that he is comfortable with, as long as he can get the correct answers. I say, "God Bless Mr. S !" My son would have never earned the award for Most Improved In Math if it wasn't for him.