Know your rights......

When I started this blog I was unsure what it was going to be about. I wanted to share my story with other families that may be going through what we are with our son and possibly another family could use some of our experiences to save them some hassle or heartache that we have experienced. The last couple of weeks have been really tough at school. We have been trying to develop our IEP for our son that sets his goals and education plan for the following year...his 8th grade year at our public middle school. Unfortunately for us, we were not informed of all the changes taking place next year concerning his classroom. My son has been in a categorical room since 1st grade and it has definitely been a great opportunity for him. Without any idea what so ever what was we were in store for next year I went to the IEP and was just dumbfounded. Not one phone call or letter to explain that they have eliminated his program and expected us to just follow along and not give it a second thought. I know some children do very well in general education classrooms and some do not. My son does not. He does very well in his categorical room and is working at his own level and pace with support of the teacher, para pro and his part time aide. Every year he is showing progress and is improving...definitely capable of learning still. I was very frustrated to say the least that with no extra support he would be expected to participate in so much more. My son was asked to come to the meeting as he is 13 now and they encourage him to participate in his IEP and goals. After hearing 10+ people quickly go through all of the testing and information and picking up on significant changes to be taking place, he lost it. He went into full blown fit throwing and hitting himself in the head and we had to take him outside to calm down. These are behaviors we have not seen in quite some time. PLEASE if you get anything at all out of my blog.....please know your rights as a parent of a special education student. You have the right to be informed prior to a change in placement. You have a right to leave a meeting for an IEP and not sign it. If you do sign it you have a right to call another one at ANY TIME, and revoke the previous one. Please be the one that stands up for your child because it is your obligation. I am including a sample of the letter I sent to the entire staff at his meeting, the superintendent of our school and the ISD superintendent of special education. Be heard and be the advocate. I have removed names and information that needs to be kept private for obvious reasons. Please remember if you need to contact your school and you write a letter, be respectful, state your concerns, be clear and use examples and do not attack. Faculty will not want to talk with someone they know is going to argue with them. I hand delivered most of the letters and emailed the ones that I could not hand deliver. Then I went home and waited for the phone to ring. It rang...off the hook. We are now working on another IEP that is much more realistic, and I believe that sometimes you have to shake the trees to be the voice that your child needs.

May XX, 2008


To all of the many people that work with my son, XXX XXX,
First of all I would like to thank those of you that attended XXX’s IEP meeting on Friday. I appreciate all the time you took with testing and observations and preparing for the meeting. I understand that it is a very time taking task that I do not take for granted.
Unfortunately, there are some things that I feel need to be addressed. I feel that I was ill prepared for this meeting as I was not informed until sitting in it, that so many things have been changed. That is the first I had heard of the categorical room not being in place for the students, like mine that truly benefit.I feel I should have been notified prior to this meeting as everyone there had the information but myself. I heard, as did others, the concerns that the general education teachers expressed regarding their students and my student. After hearing Mrs. XXX’s concerns on more or less short changing her students to make accommodations for XXX and the fact that she did not feel she could justly give him the necessary equipment to be included in the class that he will be in, and all the other major changes for his school year, I felt as if I did not have much choice as whether or not to sign his IEP. I don’t understand how such a critical component could be removed from a school that teaches special education students. History has shown us that XXX does not succeed well in a general education class room and frequently had to be removed from the class due to anxiety and disturbing behaviors, and that the curriculum was just too much for him even with accommodations. I was told by a meeting member more or less to not worry , after this upcoming year he then will be in the high school where he can again attend a categorical classroom and the teacher of that classroom is remarkable. So, if we all are in agreement, which we have been since he was in first grade, that the categorical room is the most beneficial place forXXX, then why is he being denied that opportunity now? I feel that his education has been compromised already attending school at XX Middle School when we had to remove him from his social studies class because he could not handle the classroom full of children and spent so much time with the social worker to excuse him from class. I greatly appreciate the time the social worker has taken with XXX , but the problem is he did not have a structured social studies program that met his needs. And again last week, when there was an incident at school involving some other general education students that were spitting in his face and trying to talk him in to being suspended. Did the other students suffer any consequence? I don’t know, because I was never contacted or followed up with from the assistant principal regarding the matter after my husband and I left the office. We were told ,however, that she would look into it and was not surprised with the boys XXX identified to her. But in the end, he was removed from a class that every child should be able to attend, without being harassed and humiliated. He has lost his right to attend gym class and participate with other students and is retaking an art class he has already taken. So what next year, when he is struggling next year shall we just pull him from all of these classes and do what with him? Send him to the social worker?
The goals set forth in his IEP are completely out of line and I am quite disturbed that they were even presented to me at all. Mrs.XXX XXX showed us her testing of XXX and where he fell into the categories of intelligence and had it all broke down, so we now have a very clear and up to date idea of where he is in his comprehension and processing levels. We know his reading level now and she made a point of saying that him doing his touch point math impressed her. That is so impressive to me as well, He is finally getting some of what we have been working on and is not incapable of learning something new, so we set goals for him to work on algebraic equations and geometry and fractions. Please let us not forget decimals. That is ridiculous knowing he is working at a second grade level and will no matter how much support he receives and no matter what accommodations are made, he will not meet his goals next year and I believe it is ridiculous to think he will, and is going to place undue stress and anxiety and frustrations on him.
He is a special education student, he is just a boy, and he is entitled to the best education we can provide him. I feel that I was inadequately prepared and felt like I had no choice to consider other options at that point and all of the new information presented to me and was incredibly overwhelmed. I am requesting another IEP and would like this one revoked. I would like also to be steered in the right direction to someone that will act as a parent advocate that will help my family to better understand what Josh’s rights are as a student of special education., and will also participate in the next meeting with myself and my son acting on our behalf that is not a member of the XXX Middle School staff.
I would like everyone involved to understand that as XXX’s mother, I understand completely that it is up to myself and my husband to ensure that he is treated fairly and help to work hand in hand with the school to create the most beneficial program for him and I am committed to doing that. I look forward to meeting with you all again in hopes of creating a more realistic program and setting goals that I feel he can, with a little work, achieve. I know that we all want to see him succeed.
Respectfully,
Sara XXXX
XXXXX Road
XXXXX, Michigan XXXX
XXX-XXX-XXX

XXXXX@yahoo.com

Frustrations

Well, I feel I need to warn anyone reading this in advance. I am really tired today and full of frustrations and just need a place to vent. It has been a long couple of days. My little bitty has been sick since late Thursday night and was still sick again through the night last night(or should I say early this morning). Bean has now caught the bug and has been joining her sister in the puke fest for 2 nights now. Lovely. So before I go off to steam clean my carpets again........I had a meeting first thing this morning. I had yet another meeting called by myself trying to protect my son from harassment at school. You see this is very frustrating. My son has a hard time remembering names of kids but can tell you exactly what they were wearing down to the color of their shoelaces. He, being a 7Th grader, has been placed in a class for gym first hour with 8Th grade boys. So, he does not know many names at all only a couple specific kids that do not think of him as some kind of weirdo. So yesterday he called me from school complaining to me he wanted me to come and get him because his tooth hurt. I talked to him on the phone and sensed that he just wanted to come home. He is having a problem with his tooth, the last of his baby teeth that has abscessed. I knew he has been on antibiotic and the tooth had not been bothering him since early last week when I took him to the dentist and he was given medication so I just figured he wanted to come home and play light sabres. He is a star wars junkie. Well I continued to stay home and clean my carpets and uncountable loads of towels from my ever so projectile pukers and when he came home he was in tears.....again. Some kids in this gym class were again picking on him and trying to convince him to punch other kids and telling him he would get suspended and get to stay home with his mommy. Nice. Once child in particular told him he was stupid so Boo told him he was a big dummy( that is a swear word for Boo) and the kids then spit in Boos face. I was so furious. We have dealt with this kind of stuff ALL year and quite frankly I am fed up. I have made countless trips to the school and nothing. They can't do anything with his word against theirs and non of the kids in the group that are doing it will step up and nark on the other so we just keep going round and round and round with them. Everything from trying to throw him in front of a bus to spitting in his face. I know that he is and will be an easy target for mean kids to vent. I try SO hard to give him the tools to protect himself in the situation. I beg and plead with the school to protect him and I get absolutely nowhere. So today, my husband went to work late and made an appearance in the office demanding to see someone that would help us. It was totally unbelievable. She was incredibly nice, brought kids in to question them, showed Boo picts of every child in his class and assured my husband she would most definitely get to the bottom of the issue and he would be safe and not harassed anymore. That kids would be held accountable, and he would be placed in another gym class with kids in his grade. So why did it have to come to this. Why when I go in there do I get blown off. Because I am a woman, because I want to protect him and I am not burly,just some crazy mom they have to deal with on a regular basis. I am not convinced the problem is over because unfortunately i cannot trust the administrators at our school anymore, and when they call me later, my husband will again be at work.
Why can't kids see what they are doing to this poor kid. Why can't they understand that Autism is beyond his control, Why can't they see that we are doing everything in our power to help him heal and if he could be totally better he most certainly would. Why do they not feel any compassion for someone that just wants to be accepted and have friends like any other child. Why would they think it is okay to just spit in someones face and threaten to end their life by throwing them down telling them they will get ran over by a bus and the world would be a better place. I wish for one day they could just be inside his body to see what a struggle it is for him every day. I know there are a lot of really good kids out there. Some that have been taught compassion and understanding. To those parents of them kids, I applaud you. I know there is a smaller number of the mean and demeaning kids than the good ones. I know I cannot put him in a bubble and protect him from every bad comment and threat, but right now my heart would sure be better if I could. We are working so hard to show him how to make friends and be a friend and it is situations like this that push us 10 steps back for every step we gain.
I am sorry for the long post, my heart is really heavy today. Please every morning, tell you children you love them, tell them you can't wait to see them at the end of their day and tell them the importance of being kind to others. A disability can happen to anyone at anytime. You never know when it is your turn or someone in your family you truly care about.
Now, with one eye open, I am back to cleaning my carpets.

Kids, Kids,Kids

Well,

We survived another week of spring break. The kids were home all of last week and returned to their classrooms yesterday. Unfortunately the weather was not as we had hoped. And today is going to be a beautiful day....go figure.

We did have an opportunity to make it to the movies once and the park

It was really nice to not have to get the kids up in the morning to catch the bus and not have to do homework every night!

Boo was working on a project for school. He had to do a report on a famous artist. It was supposed to be his work with me just helping him to read to him and help him to understand the directions. The artist he was given was Amadeo Modigliano. There was a series of questions that he had to answer on his report, and one was to give his personal feelings on the artwork. His answer was "My personal feelings about is art are that I like the colors but definitely not his art." " I would have liked his art more if he would draw deer or monster trucks" Can't wait to see what his grade is on that one! I try really hard not to correct his answers because it is so fun anymore just seeing his own answers and I hope that the teachers will appreciate them as he didn't participate in class previously. It won't be long and we will be back on Summer vacation and we can really work on his reading.And maybe work on artist appreciation!!

We still have our white puppy! We have named him Brutus. He is such a sweet little guy with a serious chewing problem. He also keeps us very busy. I just don't understand why no body took him....tee hee! I sure tried real hard to find him a great home, okay so I didn't put ALL my effort into it, but I was going to....for a short minute!

What a wonderful day

Ya know it is sometimes difficult to judge how your day is going to go. Well pretty much all of the time, there are always uncertainties and life just likes to throw you curve balls and you have to see if you can make lemons into lemonade. Well today I made lemonade.

We have 3 puppies left that I woke up to whining in their crate. We have sold all but 3 of them. They are like the 3 stooges and always in some kind of trouble. So darn adorable though that you can not get upset you just have to giggle at them and when you can no longer take the sight of your shoes running past you with puppies attached to them that are smaller than the shoe, time to put them away for a while and let them rest. This is my broom thief!!My broom is always on the go! Then to wake up to my little bitty who is plainly upset that all the other kids are at school and she has no one to play with, top that off with some snow which has just decided to not stop falling this year, I was prepared for a sour day. Then cool things just started happening. My little one and I decided to brave the elements and ventured out for awhile. That just improves ones mood just getting out of the house for a bit. Just the 2 of us. Then the kids started rolling in from school. Boo had a field trip with his class today to a movie on planets, a restaurant and then a book store. He was so excited about his trip and could not wait to fill me in on all the cool details. He bought some star wars books with his extra money I sent him and he is so incredibly proud of his books. Of course nothing is cooler in his eyes than star wars right now,except his dad, naturally. He is so funny. When he walked in the door and was telling me about his trip I asked him what he had for lunch. They went to a Chinese buffet and I was concerned he may not like that real well. He obviously had something chocolate on his face. He says "Well mom, I had pudding for lunch and I am saving the pudding on my face in case I might get hungry later." I laughed so hard! He was such a funny little guy before his autism starting rearing its head. I am so thankful for the little bits and pieces of him that I get back. He had the funniest little sense of humor and it is amazing that somewhere in his body it has been hiding all this time. I know this may sound weird but his autism diagnosis has really changed our family for the better. Not that it hasn't been really hard and the biggest challenge my family has ever faced but the opportunity to be able to take those little moments and cherish them. To know that somewhere in him, the old boo still exists. The whole experience I believe has made us a stronger family and I know has made my other children so much more compassionate. So anyway, John took us out to dinner tonight just because it was such a feel good kind of day, to a real restaurant with real waiters and no drive through speakers with real food and it all started with this....my lemonade. After all the begging and pleading with mother nature to hurry up already with spring and give me a break from the 5 kids with snow pants and boots and mittens. If I would have gotten my way, sure it would be so much warmer and the kids would be able to go outside and scream their little hearts out and ride bikes, but I would not have gotten this picture of boo getting off the bus in such a great mood that he wanted to catch snowflakes on his tongue.


Now I just need to convince him to button up his coat!!I certainly hope that you can enjoy your lemonade today. Sometimes the things that you worry about are so small when you can sit down with your own glass of lemonade, and know that it is all you really ever needed all along.To just enjoy your family and the curve balls and know that there are always small blessings along the way. I guess I can stop begging mother nature to hurry up with spring and let her take her ol' sweet time because apparently there are still moments to be enjoyed. 110 inches of snow isn't really that much right?

Easter Weekend

Well, this weekend was a busy one . We decided to go to My awesome sisters house for Saturday and join them at their church for the annual Easter egg hunt. Wow..... was there a lot of people there. It was so great to see the kids, we don't get to do that enough. I felt bad having to leave the kids were so disappointed we had to go. But lucky little Bitty won a bike. She was so excited!!!
That was the true test for Boo and the homeopathic medicine we seek for him. Be in a church full of bounce houses and a bazillion people with out slipping into a full blown fit! He did great. He did have to step outside for a minute or two to recoup but over all handled it well. It seems as if Easters have been so special for us, Last Easter was the first time he flew a kite by himself, ran, laughed and had so much fun, even when sponge bob the unruly kite decided to slip his grasp and fly away home, he just waved goodbye! We never would have been able to put him into a situation of that many people before and walked away smiling like we did Saturday. He participate in the egg hunt amongst a whole lot of kids and actually got himself some!! Sure there was a lot of anxiety....for me as well... I was prepared for the worst, finding all the closest exits, and never needed to rush him out of there. I don't know if we will ever lose the Autism Diagnosis but I sure feel so much better about his life now. I do think there will be a day when you can tell someone about his autism and they won't believe us. He has come so far. So many of his little quirks are becoming less and less noticeable. Everything had to be so routine for him and he is allowing himself new opportunities. At 13 he no longer wants a happy meal!!
I don't know how many people read this blog, and even if nobody does, I am going to keep writing it anyway, just in hope that someone, someday who is concerned about their child's health and possibly a diagnosis of autism will read it and know that there are other options. You do not have to medicate you child, you can stand up and take a stand against the norm and treat your child with alternative medicine. God has been great to us, and there was a time when we thought we were getting more than our fair share of hardships. Something good has come from this. I have seen other children and members of my family helped with alternative medicine. I feel that my job now is to spread the word and help others through what can be such a difficult time. After a diagnosis, you mourn. For what you thought your child's life would be like and all the dreams you had for him or her. Then you pick yourself up and do something about it. It doesn't matter what the diagnosis is. Just for the record, I am not anti-vaccine. I do believe that vaccines have saved a lot of lives. I am just for safer vaccines. I don't believe vaccines CAUSED my sons autism, I believe that was the spark. I do believe getting all that junk out of his body will keep bringing him back to us. We have a long way to go and I try not to even look at that anymore. We look at how far we have come and the new things he is always doing and thank God for every new day and every new accomplishment he achieves.

The appointment

Boo's appointment went great. Dr. Lisa had to seek and find what was causing the anxiety this time and pinpointed it as usual. Boo announced last night that he was feeling better. He said "mom my head feels good." It is such a blessing to have him able to tell us what works for him and what does not. I know a lot of parents of autistic kids do not. I noticed too that he slept really good last night as well and that is half of the battle right there. I am really excited to talk to the teachers this week and see if they notice a difference in him. I do need to work on getting the amalgam out of his mouth though so his detoxing of metals can progress. We were hoping that because it was in a baby tooth he would have lost it now, but unfortunately it seems to like right where it is. I am hopeful that he will continue to make progress and we will continue to see him blossom. He was actually feeling so well last night that he decided it was game on with dad and of course the rest of the kids took the opportunity to join in the fun.

For those who do not believe

A couple of years ago after 'dealing' with our sons autism and getting absolutely nowhere but broke and frustrated we were offered a blessing. At the time we didn't know and understand why the things that were happening was actually setting us up for the best thing possible for our son and our life as a family. Boo had been to Dr. after Dr. with the 'It's autism there is nothing you can do but medicate him and hope for the best' attitude. We were told to take him to a doctor at our local Mental health hospital and evaluated. After many hours and a thousand dollars we were told that the only thing we could do was medication trials that would consist of 6 weeks on and six weeks off until we found the 'magic' one. Well that was my biggest mistake. After a few short weeks of this He was absolutely miserable and the fits were more and more. There was just no reasoning with him at all. Our doctor assured us that when the medication was in his system and we gave it some time it will most likely work to help him. Anxiety has always been his biggest enemy. Well we ended up in the Emergency room with suicidal thoughts and a toxic liver. They sent in social workers and such and to make a long story short told us that it was his medication talking and they felt that if we continued the medication and just kept a close eye on him he would be fine. My husband and I both agreed that we were done medicating him and would just deal with the behaviors and anxiety rather than to ever hear those words come out of his mouth again. As you can imagine our doctors were not happy with us and actually threatened protective services. At that point we were very scared and didn't know what to do with him. I felt I could not take him to the doctor in fear that they would threaten us more and according to all the research I had done, I knew this doctor was the last one available to us in the provider handbook that had ANY experience at all with autism. Immediately following (within days) a friend of my fathers told him of a doctor that she sees that is a homeopathic doctor and encouraged us to go. Our insurance does not cover (witch doctors) homoeopaths and we simply didn't have anymore money to waste. With a little encouragement we did go to the first appointment. I had never had any experience what so ever with any doctor but an MD and it was not an easy decision, but at the time we felt all other doors were closed for us. The first appointment was absolutely amazing. She was so knowledgeable and understanding and I was so not. I was a brat. I didn't fill out the questionnaire with my concerns because I thought if she was THAT good she would know without me telling her what was wrong with my son. She finished her testing and looked at my husband and I and just blew us away with the information. She had pegged everything right on the head. She told us exactly what she thought he was or was not doing and why. I remember just crying thinking how badly I had waited for so long to have someone see what was truly happening with him, let alone why it was happening. She set him up on a treatment plan and although we were still very hesitant we followed her instructions to a T. Within the first night we noticed a difference in him and with in months he was progressing so fast we did not know what was going to come next with him. Well unfortunately the last couple of months we have been unable to take him due to the financial strain and The school has noticed a big difference with him. I talked with them again today as he was trying to be the class clown again,attention span is getting smaller and his anxiety is really taking it's toll. UGGG! The boy went from not talking to being the class clown. Well I called and made him an appointment and he is going back in Today. The school sees it. They can tell the difference even with homeopathic medicine. My son is medication free and takes whole food supplements to support his body and it is not just something I want to see that is not really there. She is amazing and she is helping him and he is beating autism. We have truly been blessed and God closed some doors for us only to open the best one yet. Homeopaths are real, they are interested in helping you and they are preventing medication being dumped into a child that does not need it. I never would have dreamed that he is doing things that he does now. It has been the best investment we have ever made. While being treated homeopathically he has no need for physical therapy any more and had made more progress in 2 years that in 10 previously. My family has truly been blessed.

The hammock

Well,My husband returned home from his trip. It was really exciting to see the kids so happy to see him especially when he brought them home gifts for being so good for me while he was gone. Sometimes our house can be so quiet and others just totally unruly. So what is a little bribe sometimes?? He brought them home a couple of videos that they wanted and a gift for me for my birthday. My birthday is not until March but John has no ability in him whatsoever to wait and is just like a kid that spills the beans on every little secret that are supposed to keep. So when he was explaining to the kids who's was who's he told them the BIG present was for mom for her birthday. Then my little one asked me so sweetly...."Mom when I am 72 like you will I get a big present from daddy too?" Nice, real nice. I will be 32...big difference kid.

I now am the proud owner of a hammock. Not just any hammock but a monster of a hammock that the kids demanded he set up in the living room to check and try out. If it safely handles 5 kids it would surely handle me!

Sure enough it was a huge hit for the kids and seems to be very sturdy. Our vacation consists of a rustic campground on a river fishing and swatting mosquitoes for a few days. The kids love it and so do we. Of course, there is always going to be some minor incidents as with any vacation IE: kids falling in, husband getting stuck with catfish barbs and passing out,someone throwing up in the tent, kids catching trees with their fishing poles.....the very tops of trees....but all in all, it is a ball. I am ready, a new hammock,fishing pole and now just need the nice weather!

Here is a picture from our vacation to the river last year before all of the major crisis happened and Boo caught his very first catfish. He was so proud he gave the thumbs up! A couple of years ago he would not have had the patience or ability to catch fish let alone smile and give the camera an opportunity to see him so happy....that is what it is all about. Kids don't remember how much money you spend or the fancy equipment you have, it is the memories of the fun they have and the time they spend with you.