text:
Friday, October 31, 2008
go here to read more:
and then before you give your daughter an unnecessary HPV please go read this article.....
Thursday, October 30, 2008
another helpful link for autism education....good to pass on to teachers and aides.....
UPDATE on school blocking our phone number....
Anyway.....she came back and KNEW who I was and why I was calling and when I told her the school had apparently blocked my home number and was not receiving calls from me (as the recording I got told me the party had refused my blocked number...etc.).....she flat out told me the school has no way to block a number so that was a lie!
A LIE?????? Like I have nothing better to do than sit around and make up silly crap like that??? I told her it was not a lie and what the recording said numerous times when I tried to contact the school and she got quiet and said "OH!"
Anyway I do not have to do anything else. They have Noah down as being enrolled in OVA and they will send for records and once that happens he will be officially withdrawn from their school.....but they are aware and know....etc. My social worker from the past has made arrangements to pick up all of Noah's stuff for us so we don't have to do it.
I then decided later this morning to try calling the school to see if my number was accepted and guess what? SINCE talking to the superintendent's office.....yes......my number now goes through and the staff answers the phone.
Incredible. Would anyone want to send their child to a district like that? I don't trust any of them and never would again. Obviously they have something to hide by the way they are acting.
ONE thing I know is this. I have found out it is FEDERAL law that anyone working with an autistic child has received education and training SPECIFIC TO AUTISM.....not just special education or such. SPECIFICALLY autism! MANY who worked with Noah had NO such training or experience. WHEN I asked for credentials about the staff working with Noah to the principal before she blew me off like it was not my right or business to ask and like the staff was more than qualified to work with Noah.....and she would ensure that....and that ANY AUTISM specific education and training was ONLY VOLUNTARY...they were NOT required to make their staff take it!
THAT IS NOT TRUE I have since found out and in fact goes against a FEDERAL LAW. OH I have found out a lot....could probably sue the district for sure for not providing "appropriate" services for Noah because they were not sufficiently trained and educated in autism or his needs.....methods to work with him.....etc.
TO sue however takes a special education attorney....lots of money and then what? If I would win or someone like me would win...you usually only get the district to pay up to provide for services they could not provide. At best they would have to pay out of their pockets for the placement of your choice which provided your child with the best possible scenario. IN MY district however there are minimal choices......and I am not sure they would be required to provide anything if I moved out of the district. I would definitely not want Noah to go back to that school even if the staff became trained and educated now...which is another thing they might try.
DUE process is an option but I am withdrawing Noah and personally just want to run as far away from these crazy inadequate people as possible.
The schools know most parents do not question squat when sending their child to school except us parents of special needs kids. We ask all sorts of questions and make sure the staff is doing their job and they HIGHLY resent us checking up on them. They also know most will not be able to afford an attorney.....and the time and money spent is not something we can afford with our child's futures. So what happens is they make it so difficult they run a parent and child out of their system.....because eventually as in my case with Noah....you no longer want to deal with them and the crap is too deep to move through. It is no longer worth it as it is also not providing any benefits to your child. SO we are pretty much forced to leave and go elsewhere. They just want to see us...the problem ...disappear.
The only thing suing would do is possibly ensure scenarios like this never happen again with another autistic. And even then there are no guarantees.
There is site however to refer to about the autism law. I find it extremely helpful and have used it in the past and even now. It also offers sample letters to pull up and use with schools....etc. GO HERE to check it out:
Dear Noah........the school BLOCKED our home phone number........
THAT should sum up to anyone the kind of staff I have had to deal with. I was not and did not harass them and would not. I wanted to make arrangements to come in and pick up Noah's school supplies.....his class picture and a 37.00 scholastic book order I have already paid for. I wanted to only leave a message this morning to remind them he was officially being withdrawn to transfer to OVA so they would NOT count him TRUANT. I cannot even do that now. I did try calling just now on my cell and it rings......but never went into answering mode.
I contacted my former social worker yesterday and she said she could make arrangements to go pick up your things from the school if I did not want to. I had explained to her yesterday I needed to go and retrieve these items but I did not want to ever go back there if I could avoid it. She said that was an area she could help and she could go in my place. I thanked her and said YES. I definitely will have to have her do this service now as I have no way to make any arrangements myself because the school.....the immature staff........BLOCKED MY PHONE NUMBER!!!!!
The social worker was afraid the school would try to make it hard for me to withdraw you because of your IEP but I explained I have dealt with this before and an IEP does not and should not make withdrawing any different than it would for any other child. I have done it before and had to do nothing different. I may have to CLOSE it.....sign off on it......and I am willing to do that with THIS school as I don't want any of them to provide any services for you any more so they could be released from their obligations there.
They better not try the TRUANCY card either just to give us a hard time. I will go get a freakin' note from your doctor if need be excusing you due to emotional duress which you have been under for the past 2 days because of the stuff that happened in school on Monday.
I have enough helps in place this should all be avoided. I called your after school social group leader and explained to her I was withdrawing you from the school to transfer you to OVA. I have contacted and am working with my former social worker who can still do a lot for us so we don't have to which in this case since she is a neutral party I figured would be the way to handle it.
I am still STUNNED the school blocked our home number and yet again I am not surprised. WHAT.....are they afraid of me? Are they going to try saying I harassed them when all I did was make ONE phone call to their secretary yesterday??
Even though I could call from another number.....I am too leery about it now. I also do not want to go to the school by myself......if I had to. Anyone want to go with me??? I don't know if I could call a police officer to go with me to the school or not to pick up your supplies. This is all so absurd.
I love you Noah. Tonight I am taking you trick or treating with your cousin Audrey and her mom. Hopefully we can all relax a little bit there.
Wednesday, October 29, 2008
Dear Noah......we have decided to withdrawal you from public school for the rest of this year.......
I talked to you about it....about the stresses at school.....how you felt about continuing or not.....our options.....and we have both decided to withdrawal you immediately and begin homeschooling but enroll you in the Ohio Virtual Academy for the rest of the year.
Then next year if you would like to try school again......we can discuss it then. Who knows.....we may be in a different school district by then and have better options than we do now.
I can tell you feel better already. My stomach is still knotty as I have to continue to deal with the school to pick up the rest of your supplies.......pick up your book order and school picture....anything pertaining to your stuff at school and also get the withdrawal forms done and enrollment started...etc. I have to also tackle cleaning this office area to set it up for your school work and computer and supplies again.
I am hopeful this will be good for you and you will again blossom and thrive as you have done in the past.
I love you very much Noah.
Tuesday, October 28, 2008
AND it never ends.........
My response........
That is interesting because I feel many (including your own emails such as this one) are condescending to me. Sorry..it is what it is I guess across the board. EVEN in the IEP meetings when you have NUMEROUS times voiced your strong opinions about being against homeschooling. The WAY you said it was extremely condescending like you feel there is no way possible a homeschooled child could ever get all he would need to succeed in the world or I or any parent could possibly teach them. See...it is a funny thing isn't it? How one perceives things. I chose to not let that bother me or stop me from doing what was best for Noah. I ignored your comment and left it as YOUR opinion which meant nothing to me.
I had just sent a word of praise via email to you about _____ _____ and her extra efforts in keeping a line of communication open.....and her willingness to do anything she can to help Noah within her class...etc.
Then I get this. This only adds fuel to a fire that need not be flamed any further and I am doing my best to avoid that.
As far as all this taking a toll on THEIR HEALTH? Well what about MY health or Noah's? Come on......I LIVE with Noah. I also work from home. He and I both pay the price for these emotionally overloaded days and it makes it nearly impossible for me to work. I won't even go there as far as things taking a toll on their health. Please do not get me started.
AGAIN I am NOT receiving ANY communication from the staff. I have NOT now for a long long time (until today when _____ _____ emailed me). I do not understand how I can have any reaction to anything if I am not being told anything. However...by NOT being told anything it sets me up to have a bad attitude yes. It would anyone. I resent not being informed of things pertaining to Noah or his needs within the school.
I also find it interesting we had NONE of these types of issues over and over again last year.
I inquired and received information 2 years ago about the autism scholarship. Unless a provider is listed for our area......it does me little good unless I get a provider added I would want to use with Noah. It is not like I can send him to some private school and they pay for it. Are you hinting to me that this is the only other option the school district has for Noah if your school cannot provide for his needs?
These are the types of issues we need to discuss at the IEP. Again I ask you what options the school has for Noah if we cannot come to some resolution. I ask it now as the 30 minutes in the IEP meeting if we can have it....is not going to be enough time to also discuss all these options.
Also just a reminder that I will hold off on signing any amendments to the IEP until I can come home and look the paperwork over thoroughly to make sure we are not missing anything.
BUT I have to be honest and say this _____, at this point you have now unfortunately made it very difficult for me to send Noah back to the school because unfortunately HE will pay the price for disagreements between you, me and the staff. That is not fair to Noah and not a very professional way of handling the matter. Unfortunately the ONLY communication that has remained open is the one feeding all the negativity back and forth.
and her final response:
NO answers again provided to me about WHAT OPTIONS the school has for Noah......if we cannot meet a resolution. See the sudden CUT OFF of anything when I confront them with direct questions? I am a parent who gives a crap about my child's grades and when I email a teacher asking WHY he got a D on the response letter thing for reading did I EVER HEAR BACK??? NO.......NOT EVER!!!! That is UNACCEPTABLE TO ME. WHAT? Do they think it is none of MY business?? That I am not allowed to be informed of WHAT they teach him or HOW they teach it or question their grading system? Come on....... I email asking for explanations of what happened on a given day when Noah went from the green zone to yellow to red and they cannot tell me? EVEN A WEEK LATER NO explanation????? I cannot accept that. That makes it appear they are hiding crap even if they are not. My tax dollars are paying their salary and you damn well better believe I am going to make sure they are TEACHING.
They probably rarely get a parent asking any questions about their child in school. Most just send their kid off for the day assuming their child will be taken care of and taught whatever. NO questioning...no checking up on the system.....etc. I guess the teachers feel scrutinized? Well they should by the way they are acting. They don't like to be checked on to make sure they are doing their jobs I think is what it comes down to!
if their goal was to royally piss me off they have succeeded. The sad thing is this does nothing to help Noah.
Dear Noah.........mixed emotions......and emotion overload.....
Yesterday when I picked you up from school you came out looking like you had a very emotional day. You looked pale, dark eyed and wiped out. Before I could even ask you how your day went you said to me "Today was the worst day ever for the entire class!" You started to cry. When I asked you what happened you said the entire class had gone into science so loud and it really bothered you. The NOISY environment was difficult for you to handle....and there was tension in the air as the inclusive teacher had given a countdown to the students to be quiet. Apparently the students did not listen. Their punishment was to lose 5 minutes of their recess time today where they apparently stand against a wall for 5 minutes. I could think of so many more "constructive" punishments than that loss of 5 minutes. BUT regardless.......you were upset. I asked you why you were upset about all this if you were not to lose your 5 minutes in your recess as you apparently were not participating in the loud noises...etc. You said you did not know other than the loud SOUNDS and all the stress in the environment were hard for you to handle.
In science class they are having you kids being in fruits and veggies to cut open with plastic knives to look at the seeds and then you kids can taste or EAT the fruit if you want. You were upset because the inclusive teacher and parapro were coaxing you repeatedly to eat or taste the fruit. You told the inclusive teacher you could only eat THIN slices of apples and she was only able to cut THICK slices with a plastic knife. You said this made you sad as everyone else around you was eating and you could not. The parapro tried over and over to get you to taste a banana. You told her verbally you only eat baby food bananas (a texture thing) and asked her to m mash it up (as your after hours school group leader did that one week and you were able to try it). BUT for some reason all the parapro in class did was peel the banana and make you take a bite. You cried again telling me this in the car.
YOU then tried to cut the apple slice thinner with the plastic knife and cut your finger. You apparently had a mini-meltdown you said when the teachers kept pushing you to eat or taste this fruit.
WHAT really got me however was when you told me when your class went to the library you decided at some point you were going to SLEEP during that time. Apparently you told the librarian you were going to sleep and you told me she said "hum." NOTHING was said or done and you LAID DOWN ON THE FLOOR in the library and YOU DID fall asleep. NO one saw you.......no one noticed.....no one said anything to you until 2 boys in your class woke you up before going back to class. When I asked about the inclusive teacher or parapro and where they were....you said NO teacher is there with you except the library teacher...and she was busy checking out books. The parapro and inclusive teacher do NOT go with the class to Music, Art, Gym or the library. ALL more social type classes too where I can see they might be needed.
Needless to say this does not make me feel any more comfortable about keeping you in a public school setting. Well at least this public school setting. I had a meeting with my former social worker who is offering HUGE support to me in resources and guidance and she said this school you are in is the WORST as far as getting them receptive to working with her let alone the parents. The teachers are of the mindset you have to do what all the other kids do no matter if you have any special needs of any sort at all ......She told me next year fifth grade would be good if you were still in public school as that teacher was fabulous with her kids........but would you get that teacher? Then in sixth grade the teachers and staff are again lousy where they even tried denying one child their wiggle seat cushion as they expected that child to SIT STILL like the rest of the class even if they did need the wiggle seat just to be able to tolerate being in the classroom. Talk about IGNORANCE.
I am furious. I am sick to death of staff being UNeducated and UNwilling to become more educated to make their lives and YOUR life at school smoother and easier for all parties involved. I sent an email which provided GREAT supports and helpful hints for teachers with autistic children in their classroom and practically BEGGED them to read it...to at least pick out things that would be helpful to them to use within the classroom. I still cannot believe this school as many others....do NOT make autism education a MANDATORY course if they are going to work with autistic children within their classroom.
You cried a lot on the way home. We were emotionally drained and emotionally exhausted which turns you into a walking zombie. Today you are staying home as you need the break and time to recover. I am so ready to yank you from the school. EVEN the parent-advocate will not return my call or email. The teachers do not communicate with me when I ask them questions via email as I was instructed.
The principal does to a point.....here is my latest email to her this morning:
Noah came home yesterday Monday October 27, and was very upset. He said it was the worst day ever for the ENTIRE class. Mrs. _____ did not tell me anything. ALL communication about his day has ceased with me since Mrs. _____ no longer brings Noah out at the end of the day. SO I can only go now on what Noah tells me...how he perceives things.....etc. I have no way to reinforce any issues the school may want to address with Noah here at home as I would not even be aware of those issues. I cannot verify anything. When I email and asked a teacher last week why Noah was moved to the red zone I got no reply. I am sorry but I cannot tolerate this as there has to be a line of communication open.
The reason for my email is this. Noah was telling me it was the class' worst day ever. He said the entire class was very loud and noisy and they were given a count down to be quiet and they failed so they were to lose 5 minutes of their recess today (Tuesday). Noah was apparently very disturbed by the LOUD environment...as he was crying telling me all this and when I asked him why he was so upset if he was not the one getting into trouble he said he did not know.....but the sounds in the room bothered him....the tension .etc. ALSO this was in science class and they are doing a project this week involving cutting open fruits and veggies to examine seeds and then they could taste or eat the fruits. Noah was pressured (HE said - he felt) multiple times to "just try it!" for an apple and banana. Now with Noah's sensory issues TEXTURE is HUGE for him. He told Mrs. _____ when she tried giving him a THICK apple slice he could only eat THIN slices which is true as he only recently started tasting small apple slices but they have to be thin! She told him that was the only way she could cut it and I tried explaining to him that with a plastic knife she indeed could probably NOT cut it any thinner than she did. BUT he said he felt sad because everyone else was eating something BUT him...and he cried again. I guess Mrs. _____ then tried to get him to eat a banana.....he said she just peeled it. He said she continued to try to get him to eat the banana even after he had TOLD her verbally he only ate baby food bananas (again a texture thing) but if she could MASH it up he could try it (as _____ at the after school program just tried with him 2 weeks ago and this method worked as he was able to eat a tiny bite of it). BUT Mrs. _____ could not mash it up and he got upset and he told me he had a mini-meltdown.......because they kept trying to get him to eat the fruit he would not normally eat......or be able to..etc. He said he did finally taste a piece...tiny piece of the banana slice.....but he cried all over again telling me this and I guess maybe in class but I have no clue as I was not told anything from anyone at school.
BUT I think even the biggest thing was last night when Noah told me during library time he SLEPT. He said he walked in and at some point even told the teacher at the desk in the library (He said it was a Mrs. _____ ?) he was going to SLEEP during library time and she said "hum" and then he apparently did go LIE ON THE FLOOR and FELL ASLEEP he said for more than 10 minutes. Two of his peers (_____ and _____ ?) had to wake him up in time to go back to class. He was not even sitting in a chair but was on the floor. I asked him if a teacher checked on him or asked him if he was okay......he said NO. I asked him if anyone was saying anything to him at all and he said no. I asked if Mrs. _____ the inclusive teacher or the parapro were there and he said NO. He said they DO NOT go with the class to Art. Music, Gym or the library.etc.
THIS troubles me immensely. WHAT if Noah had passed out or fainted as his cardiologist said could happen if his heart condition worsened? NO ONE even checked on him during that time in the library let alone told him to get up and please sit in a chair like everyone else that it was a time to read and not sleep, or if he were that tired to go to the nurse's room or call the parent and go home.etc. I cannot express in words how troubling all this is to me.
I asked him if he was sure he was actually asleep and not just like pretending to sleep. He said no. He said he felt refreshed when awakened and he even did a NICE BIG STRETCH (which he still talks about this morning!)
Needless to say Noah had so much stress in the classroom yesterday and was so emotionally overloaded by the time I picked him up.......from the science room events ....that he was very much an emotional mess and emotionally drained. Hence his absence from school today.
Noah has missed more school this year due to being over-taxed in this type of manner than he did during the entire year last year.
Again I have to seriously contemplate if this is all in his "best" interest as I have serious doubts.
I have no way to PROVE any of this to you as no one from the school told me anything......although Noah does not lie to me. He would have no reason to make this sort of story up and in fact I don't think he has ever made up any story. He even said he had a "good stretch" after the 2 boys finally got him awake. If there was no aide in the library or no other teacher but the library teacher and she was busy checking out books (which Noah said she was doing when they walked into the library)...I don't know how the kids can be monitored in any way....or at least someone like Noah to make sure they are doing what they are supposed to do. Everyone keeps forgetting that Noah has to have continual prompts to be reminded of what to do ....he cannot just be expected to do what everyone else does without prompts. I wish he could but it still does not work that way for him.
I have many concerns at this point and these issues yesterday did nothing but add more concerns for me to think about and then address in some fashion.
Can you please investigate the library incident or at least make sure that never happens again? IF Noah is so tired he falls asleep in class or something I should be called and he should come home.
Last year this did happen a couple of times and he they did call me and he did come home...but someone has to actually NOTICE he is there and asleep in order for that process to actually work. I apologize if this comes off as with an attitude.....but it is very difficult for me to not have one at this point though I am trying to remain optimistic and open.
AND this is her response which I just got........
and MY response back just now.......
Well as I said in the prior email I had nothing to go on but how Noah perceived things as no one explained anything else to me about the day's events. NOT one word was said. I don't understand how the staff cannot understand all these mis-communications, people getting upset, etc, could be avoided if they would just keep the lines of communication open.
I never said the children were unattended. I said the librarian/teacher was busy checking books out for other kids and the parapro and inclusive teacher were not present. Again that is what I had been told by NOAH. I think it UNSAFE and UNWISE for any teacher to assume any child is playing possum and I personally think at least a parapro should be present in any class that has a lot of social activity where apparently they presently do not go such as Music, Art, library or Gym.
I have a negative SPIN on teachers or their actions or lack thereof because the school and staff this year make everything such a big secret. They are not willing to tell me things up front. I have to resort to these types of emails to get any line of communication open. I was not aware Noah said he would miss today because of recess issues......etc....I need to know these things. I need to know what happened from a teacher's viewpoint IN the science room. This allows me to work through those issues here at home with Noah. This could have allowed me to reinforce issues they were trying to enforce with him during school.
YES I am ONLY hearing NOAH's side of everything as I expressed in my prior email. It is based on how HE perceives things happening in his world around him. ...or to him. Sometimes the teachers think he is LYING about things or telling me false information...but it is how he PERCEIVES it. He needs redirection in the perception. IF I am not being provided any other explanation for daily events I am also left no choice but to perceive events as Noah does because that is the only information I am being provided.
We need to work out some sort of effective communication of daily events. If a teacher had come to me and told me yesterday when they brought Noah to me what had happened in the science room...no email would have been necessary.
I did not keep Noah home today because of any recess issues. I was not even aware until you told me this that he had said anything in class about it. I am keeping him home today because he cried numerous times before he even got into our car last night. Cried numerous times on the way home....was very very emotionally drained which in eventually turns him into a walking zombie. WHICH it did. It is like his life force and eagerness to even be alive is sucked right out of him. I would never let him return the next day to be subjected to more stressors as he needs time to recover when he is that bad.
Noah does a good job at holding in a lot of this around others...but because he holds it in...and is expected to hold it all in during the daytime in school......it incapacitates him later here at home.
Noah is no longer recognizable on some days as the same child I sent to school that morning. This is not acceptable. This cannot possibly be the "best" of scenarios for Noah.
Thank you for taking the time to e-mail me and let me know what the teachers had to say happened during the day.
And so our world spins.......though right now I am not sure of the direction...but I just wanna get off the school versus Noah ride when I was told we were all to be on the same team.
I am trying to get along and be open to the "teachers" and yet I get an email BACK like this one from the PRINCIPAL........it is like he said / she said 5-year-old crap and I am sick to death of it. I am tired of the condescending attitude as above.
I love you Noah..... very much......but I am about ready to yell ENOUGH of this school crap already. I really don't think it is worth it......
Saturday, October 25, 2008
Dear Noah......Friday you were in the YELLOW zone again......
apparently during math class you suddenly blurted out a really loud noise......you do that a lot here at home and I am used to it. I guess it scared everyone in the class. I know you cannot help it and do try hard to remember to only do it in specific places...but sometimes your sounds slip out.
I think I have blogged about this before....not feeling they should make you move your TAG from green zone to yellow....as if you were making a disturbance on purpose. You told me you did not make the noise on purpose and I am sure you did not. This has happened at school before though where you have made sounds and they make you move your tag.
I can understand they are trying to teach you to be aware of yourself...your body...your actions and sounds..and control them during public times and places. BUT being somewhat punished for actions you cannot control I think is wrong.
BUT it does not seem to bother you.......and the yellow tag did not really bother me then.
I love you.....we have a Halloween party combined with a birthday party for your grandma and grandpa L here tomorrow. You are very excited!
Friday, October 24, 2008
Thursday, October 23, 2008
Dear Noah.....trying a new method.......and red zone October 21....
I get tired of fighting everyone it seems within the school system just to try to get you what I want you to have or I think you need to be a success. I have done a lot of thinking about this....and praying about it. I decided to try a different approach.
I am going to try really hard to be ON Team Noah.....a big PART of the TEAM.....and do my best to try to get along with everyone else at the school to do what is right and best for you. There are ways around everything...and slowly a lot of those ways are materializing...slowly things are being corrected or added to your IEP that I expect to be there. We are now going to meet again for another IEP and move forward with a behavioral intervention plan. Academically you are doing well. The staff is more than willing to continue over and over to work with you.
I owe it to you and them to give this a fair trial....I am so used to carrying a hammer around for so long to DEMAND this and that for you....that everyone starts to resemble a nail. That may not really be fair.
SO I am trying to be more OPEN and RECEPTIVE to trying new things for you......offering my insights as well. I am pressing FORWARD with my desires for you within the public classroom setting and will continue to work hard to get you all you need. But fighting to get it is exhausting. It can destroy the TEAM. It can take way instead of adding to your benefits.
We will supplement you academically and socially here at home. This combined with all you get at the school should be a good thing. If things would worsen or change we can cross that bridge when we come to it. I think we all realize you will likely always have behavioral issues you will have to face. The school I believe finally agrees with this and is willing to help you in that area.
I have a new advocate that should be joining us at the IEP meeting.....whose job it is is to help the parents of a special needs child get everything they need to be successful in school. She herself has a disabled child. I think this is the same woman I spoke with 2 years ago when we first moved back to Ohio from Colorado.
SO I have decided NOT to post all the stuff that has been happening recently or what was said at the IEP meeting and after. It just adds too much negativity to the mix and fuel to the fire and does no one...especially you....any good.
Pressing forward one step at a time.......here we go! I really want to try to help EDUCATE the teachers and staff at your school about autism and Asperger syndrome and provide them with some additional information to help them within the classroom and working with you and other children like you. I found a wonderful LINK: Life Journey Through Autism: An Educator's Guide to Asperger Syndrome here
Life Journey Through Autism
that provides TONS of helpful basic information and more detailed information for parents and family members but more importantly teachers to use within the classroom. To understand children like you Noah....much better. I forwarded the link to the school staff. I can only hope and pray they take the time to read it and search for some helpful information they can apply within their classrooms for you! While I still feel it a REQUIREMENT for all staff to be educated on autism....especially if they are working with autistic children....it is apparently THEIR OPTION at this time...and not something they have to do. This is so wrong. This would be like telling someone to babysit a newborn baby...who knows absolutely nothing about newborn babies. Or babysit a tiger cub.....not knowing anything about them. You get my point.
I love you Noah......the day of grandparent's night by the way you were in the RED ZONE at school. You were horsing around with another student on the carpet during reading.....(moved you to yellow) and you then got upset when a girl was trying to race you cutting pieces of paper into triangles to use in a math game the next day. You did NOT want to race and you are all not supposed to race doing anything in school.....the principal even went around to reinforce this.....you told the girl NOT to race.....she said "Ya wanna race? GO!" and you hit her on the arm. NOW I totally understand SHE also should have been corrected.......and it sounds like the principal DID go and talk with the class about NOT doing such things.
The principal said they are trying to make sure there are not peers trying to purposefully do things to upset you.....so that is good. BUT I think it goes the other way too many times...where you get into trouble because someone was doing something that upset you but the teacher does not correct them. Hopefully this will improve over time and hopefully you can learn to just TUNE OUT more of those types of things....IGNORING them to avoid situations like this.
Today you just wanted to go visit Grandma C. A LONG visit. You did not want to go to school. I told you if you stayed in the green zone and had a good day we would see her right after school. You said maybe green or YELLOW zone? I said preferably the GREEN only zone!
Hopefully your day will be a good one! I thank God for the progress we are making.
Wednesday, October 22, 2008
Dear Noah.......IEP crap
Grandparents night was a success. Noah had a lot of interesting things in his science/social studies classroom. His math room too. His home room not so much.....they also do reading and language arts in there.....but I did not really see any activity type stuff sitting around....no evidence of hands-on type work......visible evidence of anything really. So that was a disappointment.
But lately I am disappointed with a few things pertaining to the staff at that school.
Noah's highlight I think last night was showing his 2 grandma's the school bathrooms.....and the fact that he got to go inside the girl's restrooms and show them those.
I love you Noah.....you will probably just go to school today....and I will go to the funeral alone and meet up with the rest of my family once there.
I love you.....and no matter if the school tries to frustrate me to the level where I give up.....I want you to know I will never give up when it comes to you and you receiving all you should in order to be successful.
Tuesday, October 21, 2008
Dear Noah......tonight is "grandparent's night" at your school.....
I said yes you had to be present at school to go to the grandparent's night and you could not keep missing school every week on a somewhat regular basis unless you really had a problem.
So as of now it is still on for tonight. You have also told me you want to go with me to the funeral tomorrow ....but I am still not sure about that.
I am hoping and praying you have a good day today....to say I am nervous about it since I know you did not feel well would be an understatement. Lately my nerves are just about shot!
I love you Noah
A snippet of Noah and his great grandma C....we were eating popcorn and she and Noah were working a word search puzzle
Monday, October 20, 2008
Dear Noah.......today was your IEP meeting......
and we were about 2 minutes late. I never said anything the last time the staff was late to the meeting.......and no one said anything about us arriving 2 minutes late....until later....which I will explain.
Anyway.....everyone was there. I sat down and we got started. To make a long story short......scheduling a meeting like the school does before a regular school day begins means we have about 30 minutes max for the meeting. This is really just not enough time to go over issues for you especially when there is more than 1 person who needs to express concerns.
This has always upset me that they never want to take any extra time to do these meetings like AFTER school for example........
BUT TWO of the issues I wanted added to the IEP were added and addressed.....you getting sensory things first and second recess inside the school .....and the specifics were outlined.
There was such a rush when it came time to signing the IEP however (as always happens) and half the staff left before I had even signed it......that I just signed it and then took it home to read.......realizing then that they had NOT included in your IEP that you should be allowed to have fidgets at your desk to use at your will/discretion (as long as they do not disrupt the class) and that someone is making sure you are going to and from places within the school as your are supposed to. I felt that even though these things were being implemented for you during the school day.....unless they were in WRITING the school did not really have to provide them....and I am adamant about you receiving these aids/helps you need.
SO I e-mailed the principal asking for an addendum/attachment to be added to the IEP with these issues added. I could sign off....everyone could and it could be attached to the IEP. She feels we should all meet again in another meeting to go over these issues and add them. So that is fine as well. She then said she had no idea I felt rushed to sign anything ...etc...and that because I arrived LATE to the meeting (hence their rush). BULL crap. Thirty minutes is not enough time and I e-mailed her back and told her so. It had nothing to do with the fact that I was 2 minutes late or even if I had been 5 minutes late. The OT took up the entire time and she did not even get to finish what she had wanted to say. How is it possible for anyone else to add their 2 cents?
Regardless I am demanding that your being allowed to use fidgets is written INTO the IEP as part of it.....as well as the monitoring of you during transitions. I also asked that ALL scuffles and such be DOCUMENTED from now on by the school.....including if you came up missing again. I have always felt that should be documented and was a bit surprised so far it has never been documented unless you go to the principal's office and then she writes down something. I have kept track however and told them I would make up a paper with the dates and details of events to also be added as part of the IEP. I am sure they are thrilled about this.
Whenever I have asked for attachments to be added to the IEP in the past such as documentation they act like they have never heard of such a thing and usually flat out refuse to do so.
So we will need to meet AGAIN to add these things that should have been added to begin with.
Today I also picked up on a couple of the teacher's feelings that all these things being allowed for you is such a pain in their butts. I could sense it....and hear it in their sarcastic tone. I don't know HOW many times I heard (even from the OT) that they felt you did not "really" NEED the fidgets but that you were PLAYING with them as toys instead! I was FURIOUS about this but kept my cool and said "oh so because Noah does not necessarily use a squeeze stress ball or whatever in the same manner we would and he instead rolls it over his body or smells it or spins it for the proprioceptive needs he has.......you feel he is just PLAYING with the stress ball as a toy?"
HELLO....that is WHY he needs those fidgets such as a stress ball...he will spin it and squeeze it and rub it and do all sorts of things with it. They felt you were not paying attention and yet they found out you WERE paying attention because you WERE able to do your assignments...etc that had been explained to you while you were using these gadgets. I mean they even complained about you having the one fidget in your hands UNDER your desk or inside your desk.....and they felt you were just playing with it. I think you probably feel you have to HIDE it now...THEY act like you need to HIDE it...and that is not good either. They almost act like you should be ashamed for having to require those special things to get by in the day. That irritates me. They again found out though you were listening to the instructions given in the classroom as you could do the work asked of you.
I don't know how many times I heard "But Noah never used to need ANYthing at all and he sat in the classroom and did fine, etc" and I said "yes but then you had all sorts of issues with him during recess and at other times during the day!!"
The OT actually said she could not see the CONNECTION between you not getting sensory needs met while sitting quietly in a classroom and "acting out" at recess time. DUH??
"Because during class time he is being asked to sit QUIETLY and NOT make any sounds at all (because it will DISTURB others)...but he does that almost constantly at home. He is almost constantly doing some sensory thing here at home....all this keeps him centered and grounded and able to handle the regular day better. In school he was not getting that......yet he was expected to remain quiet.......not fidget or move or do anything to satisfy his sensory needs.....so when recess time came around he was SCREAMING for sensory input hence all the interaction and problems on the playground. I don't understand how they cannot see this or understand this? Especially the OT?????? "
Again they think you are just NOT listening....you do NOT really need the sensory fidgets all the time......etc because you went so long before and had none. AGAIN they are determined to strip away any special needs you might require to fit in with the rest of the class. WHY do they act like using a fidget is such a huge issue? WHY do they feel this is going to be a problem for you later and you need to be weaned off this now? I flat out told them if it became a problem for you later we would cross that bridge when we came to it but what you NEED NOW was my concern and if you need these things to cope in a public classroom setting then you SHOULD HAVE THEM. Over time as you get older you will learn your own ways to cope and if having things out on your desk or in your hand bothers you......you will find something to do that no one will notice and still calm you. I have never made you feel those needs are anything to be ashamed of. They all acted today like it was horrible that you had those needs and you needed to learn to start living without them. What a load of crap. Let's see........let's pick something just ONE of those people at that meeting today feel they NEED every day to cope. I know they do more SOCIALLY acceptable things such as tap pencils or their legs or chew gum or fidget .....or drink coffee.....twist their hair...etc. I bet they would have a hard time making it through their day if they were not allowed to do those things.
THIS upsets me....that they make your needs sound less significant....like they are not truly NEEDS.......that you can be fine without them met.
I sometimes wish I had a way to smack the sense into these people.
I am sure I am not one of their favorite parents. Your aide has NOT been bringing you out lately to the car at the end of the day but instead the inclusive teacher is. She tells me NOTHING about the day and usually sends you on your way to me before I even get up there. I don't like that. I like to stay in the loop...but I think they stopped the aide from bringing you out because she was divulging TOO much information to me. Well I need to know when you misbehave in class. I want to know.
As usual today I felt like I was FIGHTING to get you just the basics you need to sustain yourself within the classroom....and I have to say sometimes I wonder if it is worth all the hassle as it would be easier to just be in charge of it all here at home as I did before and you thrived.
I also asked your teacher about you getting a D on some reading paper where you have to write like a letter response to something you have written. You have STRAIGHT A's on everything....including this class but that D will bring it down to a C. I asked about it.....said I had never even seen the paper and I asked why you had gotten a D on it. She said because you were to give full sentence responses about what you FELT or how you were thinking when you read the story......and they all know EXPRESSIVE language is still a huge issue for you though you are improving....and WRITING those expressions down is even more of an issue...and combining the two......well. I e-mailed her and asked to speak with her about ways we could compensate for this as you need extra help and instruction in this area.....they all know this. YOU cannot just be given a sheet and say here......do this....and be expected to do it. IF you were typing it you might be able to. Telling even ME how you FEEL about the simplest of things is not easy....and with you everything is cut and dry and very BRIEF and straightforward. I wonder if you will ever be able to do those essay answers!
Our former social worker is going to come out to talk with me Monday here at home to let me know what other options might be available for you. No commitments........I do not have to reopen your case with her. BUT it will be nice to touch base and see what options might be available and she can also work with the school to MAKE SURE they are doing all they are supposed to you for you with the IEP needs. I like that part.
I love you Noah........and I continue to wonder if it will ever get easier to get your basic needs met within a public school.
Saturday, October 18, 2008
UPDATE on prayer request......
thank you for all your prayers and thoughts.
Requesting prayer ......
Any prayer would be greatly appreciated at this time.
Dear Noah......a trip to Krogers at 3:00 a.m.
yeah. When you wake up and need me for anything or even after waking up in the morning you do NOT say "MOM....." and then whatever you need or "good morning Mom" without me saying something to you first. I have many times, after hearing you come out of your room in the morning, waited to see how "long" you would stand behind me before ever saying good morning. Well apparently you could stand there forever as you say nothing - - ever. I have to initiate it.
Same thing for when you wake up in the middle of the night and need something. You will just walk to my bedside and hover there.....never saying anything. I have told you to at least TOUCH my arm as I may not know or sense you standing there needing something. You have to sometimes say "HEY MOM" and then what you need. I was sleeping pretty well with my phone alarm set to go off at 4:00 a.m. to get up to start working here at home (and I had to stay up till 11:30 to finish my work here at home last night because I had to miss some work in the daytime due to taking the break to take you to the doctor). SO this meant when you were standing there hovering I had only had about 3 hours of sleep. You informed me ever so gently later that "Mom....you snore!" (and here I had been over that for a long time....I guess not getting enough sleep and it has started again?)
You DID touch my arm finally....and I woke up. You said your stomach was really hurting like that last time you had to go to the hospital and they found out you were completely filled up inside with stool. I asked you on a pain scale of 1-10 with 10 being the worst what level of pain you had. You said a 5-6.
So great.....this meant a trip in the middle of the night to Krogers to get some
enemas for you (since I had never stocked up on any yet) and also something to help keep your stools soft. I mean you do not eat vegetables......and are just now starting to eat a few apple slices from time to time. You do drink apple juice but come on....you need much more water and fiber than that.
What a deal! Krogers had Fleets enemas for 1.00 each.......so we grabbed 2. We also found some dissolvable stool laxative-type strips that you place on your tongue that work overnight...which will help clear you out from the top part of your intestinal tract down. I will need to take you to a gastroenterologist to talk about your stooling issues. MiraLax may not work well for you as you probably could not tolerate drinking a glass of that stuff.....and I am not sure fiber products with no taste would provide enough stool softening effect though eventually it may help regulate you longterm.
The thing is you go at least 10 times or more a day it seems.....tonight alone you went at least 10 times. BUT you apparently wait too long to get into the bathroom so by the time you do...nothing really comes out except a little dab on your bottom that you wipe off. It never even hits the toilet. So it all builds up and gets harder and harder and then you cannot go. Every so often you do actually have an actual bowel movement......but apparently it is not happening every time you go to the bathroom.
The last time EMTs had to take you out on a gurney to the ER as the pain was so bad you could not even walk or stand up or sit up. The x-ray showed you had stool all the way up your intestinal tract to your STOMACH! The doctor said a lot of kids do this holding behavior and then cannot go and get constipated more or less and when they get as filled up as you were......it can be dangerous as intestines can burst. THAT is NOT something you ever want to happen.
SO we went to Krogers......and I tried to remember to get anything else we might need at the same time besides Fleets enemas and laxative stuff but my brain was not functioning 100% due to lack of sleep....and I forgot the wipes for your bottom as we are almost out. Guess you will have to use the ones we have for school if we cannot get anywhere tomorrow to get some since I have to work....etc.
Krogers had Ore Ida hashbrowns on sale for 1.99 a bag!!! You live on these for breakfast so we grabbed a couple of bags. I gave you a stool softener strip in the car.......1 laxative/enema when we got home......and finally almost 1 hour later after starting on this journey......my official work shift starting time.....you are on the toilet going.
My head feels weird......my eyes are not seeing things well.....I know due to lack of sleep. I am going to have to start a little later this morning so I can grab at least 1 more hour of sleep. Opie is wondering what is going on as he is seeing us coming and going in the middle of the night.
Our town sure is empty and nice and quiet in the middle of the night.
I love you Noah....but you really need to eat more apples and drink more water.
(OH....Noah was fine at the doctor's.......stress/sensory overload and his ears needed washed out really good)....of course I am sure being filled with stool which we did not know about....has also contributed to his funky state of being as it did so the last time he got this way).
Friday, October 17, 2008
Dear Noah.......you stayed home from school again today.....
and did not even wake up until 10:30 a.m. which is NOT like you. I am going to call and see if we can get you in to see the doctor as you have just not felt like yourself for awhile now....and I want him to check you out to make sure nothing physically is going on with you. You have been complaining about your right ear and neck so maybe you have more than a clogged ear.....and you have looked so pale and zombie-like but that can also be the way you appear when you have been sensory overloaded for too long and eventually "zone out." I let you sleep in my bed last night as my room is much cooler than yours and well...you felt crappy.
The changes made at school have been working well for you so far. They have allowed a lot of sensory activities for you during recess time and you seem to really be enjoying that and do not miss going outside at recess with a bunch of other kids all the time at all you said! The first day they let you swing on the OT swing in the gym however you also SPUN around too much on it and for the first time you said you got dizzy and a headache and felt sick to your stomach. SO the next day I told you to NOT swing in circles so much but just back and forth.
The inclusive teacher walked you out yesterday to tell me at the end of the day while sitting on the carpet with the other kids waiting to be dismissed for the day (I have NO idea what carpet or even where this would be located as the classrooms do not have carpet that I am aware of ) there were a couple of girls making hand gestures and saying some saying out loud which you do NOT like. This really bothers you. I have been telling you to USE YOUR WORDS when something bothers you at school instead of reacting with a hit or shove..and you are really trying to do this. Yesterday you told the girls " Stop doing that it makes me angry!" to which another BOY responded by joining in and saying/doing the same thing which only made you angrier. The inclusive teacher came up and I think tried to talk you through this telling you that it was okay for someone else to sometimes do things you may not like......etc.....but she told me at the end of the day we needed to come up with a way to get you over this as you really did not like this stuff and it really bothered you a lot. This is the same thing that got you into trouble on the playground one day when you HIT someone over it instead of using your words.
SO on the way home I decided to drive you around. I got you something to eat. We parked for a bit. I asked about the movements the girls were doing and what they were saying.....and I tried to imitate it in the car. I tried to make up some silly stupid saying also ....and did it in front of you. I could see you "tense" up immediately and tell me to STOP IT and hold your hands over your ears. SO I asked HOW it made you feel inside.....and you told me angry.....tense...etc.
I decided to try to teach you to focus on something else....anything else other than these hand actions and verbal sayings. Over and over I would make those hand gestures and sayings. I told you any time they started this in school...the next time to close your eyes or focus on a specific spot in the classroom...AWAY from the action bothering you.....and start thinking about things you DO like. Count to 100.......think of toilets flushing.......think about playing a favorite game.....start singing a song you like inside your own head......take a trip inside your mind......
I would then start moving my hands and sing out some silly phrases to go along with the hand movement......slowly but surely you began to instinctively turn your head away from my actions.....close your eyes and focus on other things. I saw you clench your fists....I saw you counting on your hands. ....finally you just sat there and could close your eyes and do nothing but I know your mind was busy. At unannounced times I would suddenly stop and begin the process all over again. You would suddenly stop whatever you were doing and turn away, grow quiet and look elsewhere or close your eyes. You were in another world. Soon you were able to LAUGH when I did the movements and sayings with my hands. Soon you were laughing a lot and out loud......soon my hand movements and sayings did not bother you at all!
I told you that I bet the next time you saw and heard this at school it would no longer bother you.....that you would immediately remember what to do......as we set up a triggered positive response for you to have with this action. I will inform your teachers of this and have them test it out .....
I can see you being successful with this method......or you will try too hard to block out the visuals and sounds....that others may take notice and think it is all bothering you so much....that as the one boy did the other day...they may try to say things even LOUDER or move MORE to upset you more. I would hope the teacher would then step in to quiet them down but you never know. Sometimes what seems okay for them is "not" okay for you. I KNOW if YOU were the only one making movements with your hands over and over and saying a phrase over and over.....just by yourself....while waiting to be dismissed at the end of the day ...it would in all their eyes be a "NO NO" and not acceptable behavior at all. Somehow they do not see the double standard. I would get told of your "inappropriate" behavior. It would be considered a disruption.
This is where I get ticked off. Because of the so-called SOCIAL standards we have set up for all the boys and girls to follow in the public classrooms like playing a game of Simon Says........step outside the NORM without permission or with everyone else also stepping outside the norm.....and you are OUT. No 3 strikes either. Yet these girls are allowed to interact together over and over each day.....making movements within a group who is otherwise most likely sitting quietly....making sounds within the same group.......but if it were only you......it would be considered a "problem."
I hope you feel better Noah. I really do. I know I have had a hard time getting my own work done here at home lately. I am way behind again today. I don' t feel all that great myself. So maybe we are just in a slump.
I love you!
Thursday, October 16, 2008
Denis Leary on autism........can someone spell IGNORANT?
Los Angeles, CA (CNS) - Denis Leary's view on autism has irked the Autism Society of America. The "Rescue Me" actor said in his new book that the buzz around the brain development disorder is caused by parents.
In Why We Suck: A Feel-Good Guide to Staying Fat, Loud, Lazy and Stupid, Leary slams kids with autism as "morons" who are "stupid" and/or just plain "lazy."
He writes, "There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks... to get back diagnoses that help explain away the deficiencies of their junior morons."
"I don't give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He's just stupid. Or lazy. Or both."
Unsurprisingly, the Autism Society of America lashes back at the actor, saying, "For Mr. Leary to suggest that families or doctors conspire to falsely diagnose autism is ridiculous... [His] remarks reflect the same misconceptions of autism being caused by bad or unemotional parenting that were held over 50 years ago."here is what he had to say of course:
"…If they have (read the book), they missed the sections I thought made my feelings about autism very clear: that I not only support the current rational approaches to the diagnoses and treatment of real autism but have witnessed it firsthand while watching very dear old friends raise a functioning autistic child."
I cannot imagine any FRIEND of his with an autistic child finding this humorous in any way, shape or form. I wouldn't want to be your friend.
MY advice......perhaps Mr. Leary you should re-title your book to WHY I SUCK...leave WE out of it! Just what the world needs.....another trash book......tearing people and things down instead of building them up. And we are to laugh about that? Where's the humor? Did you get picked on Mr. Leary....do you still get picked on? Is the only way you can GET attention these days is to HOP on the band wagon by MENTIONING AUTISM and then trashing it? Because until you did.....I can honestly say I had not heard anything about you for YEARS!! DECADES!!!!!! So congratulations......you made the news. What a wonderful legacy you are building up to leave behind one day. Won't it be wonderful for you to realize one day the majority of ways you will be REMEMBERED is "oh yeah...wasn't he that one who said autistics were morons and stupid and lazy? " ......."he trashed autistic kids and created chatter about his book....what was it called? I SUCK? WHY I SUCK??????" gee......I don't remember ....." No mention will be made of anything noteworthy you have done to date in your lifetime.....unless that changes of course because as of right now I am not aware of you doing anything noteworthy. This is about as NOTEworthy as your history has been and this is about as NEGATIVE noteworthiness as one can accomplish. Guess you really do understand the whole "SUCK" concept after all.
Wednesday, October 15, 2008
Dear Noah......you are going to go back to school this morning......
I had emailed the principal numerous times......got no response. Finally yesterday I figured I better try calling as maybe their computers or email service was down, which was the case. SO the principal and I talked. I scheduled an IEP meeting for Monday, October 20 at 8:20 a.m. For the next 3 days at school we are going to try implementing these ideas and plans and see how it goes and then review on Monday and make any adjustments....etc. I know these are strictly VERBAL for now as I do not have them in writing yet.....but.....we can see how it goes before meeting if we allow you to try them first so I agreed to that. PLUS if I kept you out from school any longer and did not say you were "sick" the school would be forced to report TRUANCY and that is another ball game I don't want to play....where Juvenile Courts can be notified.....etc.
1. You will be allowed to have fidgets to use at your will at your desk at all times.
2. You will not go out at morning/lunch recess with everyone else but instead be allowed to go to a special classroom and in the back they will set up an area where you can work on sensory activities.
3. Someone will be monitoring you to make sure you make transitions okay and always go where you are to go.
4. For second/last recess in the afternoon your aide or inclusive teacher will take you to the gymnasium where you will be allowed to swing on the special OT swing and have other sensory time.
I think this sounds like a good plan and were issues I wanted to address specifically so when I told you what we had planned you were so excited and even came up hugging me....acting very happy and relieved shouting "Thank you, thank you, thank you!" I hope and pray it does go well. I realize some of this sounds bad....some of it sounds like you are being isolated....but in fact.....you will be around a smaller group of children and in a much more quiet environment. You need breaks like that during the day and time to do those sensory things.
Meanwhile I have been making phone calls to find out more options and to get more advocates for your needs. Monday the group leader of your after school social skills program will attend your IEP as will your former social work helper. I also contacted a behavioral consultant but NOT to my surprise they were NOT experienced with autism and did not feel they could represent you well but they did refer me to 2 other POSSIBLE resources. I have checked into an online free school that could be an option to do along with homeschooling. I also am finding out about private schools and using the Ohio Autism Scholarship to pay for it.
While talking to your leader of your group social skills group she expressed to me how difficult it was having you in her group when her helper was not there. I soon realized that while she could express how this is indeed very important to have someone with you during your comings and goings and social activities at your upcoming IEP meeting......I also quickly got the impression while she wants to try to keep working with you....it would be easier if you were not in the group. There is no easy way to say it. She made many comments in regards to this without coming right out and saying so...ending with "we will finish this quarter" and go from there but she does not really feel you are probably gaining all that much being in her group and I guess you are a handful sometimes if her helper is not there and the other kids are not getting what they need to get if you are there......etc. This sort of stung but yet I can also understand it I guess. BUT that is what the group is about....providing you with help, guidance, direction. What a crock.
So as usual we end up in the same place as always.....where people want to help....but then once involved they realize the amount of time and energy necessary to invest to make it work......and they just eventually get tired and don't want to do it anymore. This runs true in all aspects of your life. Even when something starts out strong....most just give up and just don't want to deal with it any longer. So where does that leave you I often ask myself? There is a huge lack of qualified individuals around that could offer help for you....and even if they want to.....most once you get involved.....in the social situations anyway.....soon feel they bit off more than they can chew. What a load of crap I say!
Yes having you spend the night somewhere or with someone to be "social" may be entirely different than someone has ever experienced because your needs are a little different or you require a bit more one-on-one time. You don't get invited to spend the night anywhere. You do not have any friends you do anything with...so it is all family. Even that is limited as I know for a fact some just find it easier if you do not come for a visit. They don't enjoy their visits as much sometimes if you are especially WOUND up. They find the extra needs I guess placed upon them exhausting or the environment just your presence creates unsettling and they don't want to deal with it. I think they are a little afraid of you....what you might need.....what might happen if you don't get it. Your life becomes one of exclusion instead of inclusion. I am sick of it. It ticks me off. I pray you never become aware of it or it may hurt your feelings and cause resentment but in most cases you are in sheer oblivion to these details. That is probably a blessing.
Even now within the school and even at a group recommended by the school to help you LEARN social behaviors......even the group leader really does not want to deal with it anymore......and I know it is because she probably does not know HOW to deal with it. Many times you want to try to fit in and do what everyone else is doing but because you jerk around or make sounds or act like a toddler ....they don't allow you to. At group she told me lately you have seemed to regress to where you sit and pick your nose or stick your fingers in your water cup and drink your water from your fingers and talk about toilets all the time, interrupting her group time. She specifically told me they IGNORE you and what you say. She has told the other kids too ...to not feed into that.
HELLO......that is why I sent you to that group to begin with....and yet once again....just like in kindergarten and elsewhere....the so-called specialists act like they have no clue what to do with you let alone for you. Oh sure they can be helpful in pointing out your needs but they don't know what to do to provide for those needs. That is a reason...a BIG reason why I feel and have always felt homeschooling is ideal for you....because I DO know what you need and can provide it.....and you learn and thrive. BUT there is more in the world than just mommy. I guess GROUP had a DISCUSSION about YOU and AUTISM one night when you were not there to try to let the other kids know WHY you sometimes act like you do or make sounds like you do or do what you do......do do......do do.......I think it may have been helpful......not sure yet.
I am thankful to GOD that he allowed me to have you as a son and handle it....not tire of it......look at you one day and say I have had enough..I am done....can I trade you in for an easier model......I don't want to do this anymore......blah blah blah. I find it odd when I am around you.......you seem to do so well. In one-on-one situations you do well. Small groups you usually do pretty well..or so I thought. In the classroom you are doing pretty well. They do not say you disturb the class. AND yet your differences......your quirks....makes so many people around you "uncomfortable." AND I guess it is human nature to move AWAY from anything that makes them uncomfortable.
Well come here............let me give you a big hug. Let me embrace you for all those too afraid to truly get to know you, spend time with you, and experience the treasure you really are.
I love you Noah....always I will.
XOXOXAND one final thing that sort of ticks me off. If all these so-called "experts" are getting funded and paid a good salary to provide services that are not really being provided to our special needs children.....why can't the parents receive a stipend or salary to do it instead? They are usually the ones most knowledgeable and experienced.....the ones most qualified to know what the needs of their children are and how to provide them. When will it be our turn? When will we get help just so we can stay home and not have to worry about working full time to try to make enough to keep our heads JUST above water level......while at the same time trying to provide all the therapies and homeschooling, etc? If the schools and those in charge cannot or do not really want to provide the goods and we do....why not pay us a salary to do so?
What about people like me who have had to CHARGE crap just to SURVIVE since my divorce just so I could continue to work part-time to provide for Noah and his needs through that transition? .... when one can only work part-time for a period of time......where your level of income is not listed on the poverty level chart? .... So you are forced to CHARGE that difference in income. Does anyone know what charging the equivalent of 1/2 of a salary you are not making for 2 years adds up to? A LOT OF DEBT....which only adds another problem to the already growing list.
And though we have no choice but to weave that nasty web others judge us or look down on us and say "how did you get into that mess again?" or "she must not be able to budget money" or any number of things. And yet WALL STREET and BIG BANKS get BAILED out when us smaller insignificant peons are left like ants scrutinized under a magnifying glass in the sunshine.
yeah....I have a slightly bad attitude about it all. There are not enough hours in the day for us parents to work and also provide every service our children might need and academics....therapies.....etc. OR time to FIGHT to get those services elsewhere. I find it ironic that the more therapies our kids are qualified for.....the more we have to actually FIGHT to get them! Talk about time consuming! And time passes...valuable precious time.......learning time.......progress time........growing time.......
and the debt dollars watered with Miracle Grow surround our heads and bodies like weeds......slowly choking the breath out of us.....
yeah.......now I am on a rant.......
BUT I give thanks to God for all we do have.....for all HE has provided just to allow us to make it as far as we have......I am thankful.
Saturday, October 11, 2008
Thanks for the comments.......
thanks everyone.....
I did not post all the emails here as my post was so long the way it was. If you all actually read everything on my last post and survived I pat you on the backs now!
The principal verbally and in her emails was a little .....um...."sarcastic" more than a few times and then yes.....she DID try to backtrack on her prior comments on prior emails....I am sure covering her you know what.
I did not like the fact that she encouraged me to tell Noah he was NOT WELCOME and NOT INVITED BACK to school on Friday. AND I do not like her always butting in and telling me what SHE thinks is in the best interest of Noah. She is not around him enough to really know the whole story and to be honest...I am sure those almighty dollar signs are flashing on the backside of her eyelids the entire time she is trying to come off sounding so concerned as we all know the school gets X amount of money for every special needs child in their school.
BUT I do think she is concerned about the kids in the school....but she does not know everything and does not always know what is best for Noah. She is totally AGAINST homeschooling.....and if you could see her reaction to even the mention of it.....(rolls her eyes and tosses it off as just a totally absurd idea - one totally detrimental to any child).....it is annoying.
She is one that has fought me from day one on Noah not needing a full-time aide of his own.....to watch him so he does not wander off....and to help him in social situations....etc.
I mean come on. The biggest area he needs help in would be the playground time as that is the biggest social interaction for the day and DUH.....he of course would need someone there to GUIDE him.
They always give me the excuse that is the same time the aide goes to lunch...blah, blah, blah...but you know what? She is going to have to find another time to go......so has to be freed up to be with Noah. He has wandered off too many times this year....and they continue to allow him to go places by himself.....assuming he will go where he is supposed to go. And then he comes up missing again and all are worried because they cannot find him. I have had enough of that this year too. This is only October for pete's sake......and he has come up missing MANY times in this last month and a couple of weeks. Same for incidences on the playground.
SO the way it looks now...since the principal did not get back with me on Friday.....Noah will not be returning to school Monday......and in fact will not be returning to school unless I get some major issues resolved officially on his IEP and in writing...etc.
THIS time I am going to demand that he gets what I think he needs to get and they better not even try to tell me he does not "need" it....I think now they know HE DOES and they cannot justify why he would not.
We will then go from there. If this means me picking up stuff for him to work on the next week or so here at home I can do that.....if they drag their feet on arranging a meeting which sometimes schools do.
I agree about the aide Jack and Joann - in fact I have mentioned this same idea to them before......and they have always told me that the aide is NOT AVAILABLE during that time as she has other duties during that time. Last year she was having lunch at the same time Noah did so that aide was not available to be with him on the playground. So 2 teachers are monitoring the playground who do not usually even KNOW Noah let alone understand him or how he ticks, his needs, etc.
It is a free for all and I have continually suggested something constructive be done during that time and they act like they cannot possibly have one aide for just Noah for anything. Well then how about having that aide have a mini recess with Noah and a few of the other special needs children? OR like you suggested and even the school's OT suggested....send him out by himself before the others or AFTER the others....
At this point it all gives me a headache to even think about it.
Friday, October 10, 2008
Dear Noah......you are suspended from school.......
I got a phone call yesterday afternoon about you Noah. The principal said you had been having a very rough day.....and I knew before you left that morning you probably should have stayed home as you had a rough morning even here at home. BUT you seemed to get a much better attitude before you left for school so I let you go.
Well.....at RECESS time again....which is an obvious time of the day that sends you into sensory overload...you had a few problems. It all started out with you playing some game with a few boys...and when the required number of FOUR kids grew to SIX kids someone said to you "hey you....get out of here!" When I asked you what you did or how it made you feel you said it made you feel a little sad...so you headed for the swings which is the one thing you can always count on to calm you...keep your grounded....soothe you.
I cannot remember the number of times I have told the staff you NEED swing time during school hours....and how it has been used for you in the past as part of your therapy within the public school setting as well as out. Same for having things at your hands to grab if you need to squeeze or pull while sitting at your desk. Only recently have they started to provide those items (NOT the swing time)......and they only provide those items when the teachers or aide thinks you need them.....not allowing you to grab those items at will. MANY times you do not remember to verbally tell the aide or teacher you need your squeeze stuff.
Anyway...back to the playground. When you got to the swings..another boy was on one and the others were taken. He asked you to hold his swing so he could go tell the teacher something. You held the swing but then got ON the swing as I am sure you did not understand that he intended to come back. I found out later the boy was going to the teacher to tell her YOU were BOTHERING HIM. No one seems to be able to specify HOW you were bothering him or what you were doing. I think you were just standing there waiting to get on the swings and he did not like that. You will not walk away from the swings easily if you think there is a chance you will get on one.
SO you were on the swing and here came the teacher and boy. The teacher did not really offer any explanation up front....(first mistake).....instead LOUDLY (second mistake) telling you to GET OFF THE SWING NOAH! Eventually as you refused to get off the swing...she tried to tell you WHY...that the other boy had come over to tell on YOU to her that you were bothering him....and that it was still HIS turn to swing....blah blah blah....you got off the swing...never saying a word.......very upset (you still forget to use your words to TELL anyone what is on your mind). You apparently hit the boy in the chest......and picked up a wood chip and tried to cut him with it.....jabbing it at him on his arm or something. You flung the swing out really hard. The teacher thanked you for getting off the swing and then was going to escort you to the principle's office. You began flailing your arms around.....as you still resort sometimes to behaviors instead of words when you are upset. In the process of having a meltdown you hit the boy 2 more times and your arms hit the teacher knocking all her papers and stuff out of her hands. (NO one seems clear as to whether you HIT her on purpose or if she just got caught up in your flailing arms). BUT we all know hitting is not acceptable behavior and especially not a teacher.
Punishment for hitting a teacher is automatic 5-day suspension. However the principle did not want to give you 5 days but instead only 1 day. I don't know why. After tossing back and forth emails and since she did not have SUSPENSION paperwork ready for me when I came to pick you up....she has now changed it to "administrative leave" where you will be excused for the day and allowed to make up any missed work.
Here is what she said she heard happened:
Here are the events as I know and understand them from Noah, the other child, and the teacher. Noah did indicate to me that he did the "actions" listed below.
Noah took another child's swing and acted as if he was going to cut the child with a large wood chip. Noah was asked to stop swinging and he refused. The teacher asked again and he stopped. At that point, the teacher explained to Noah that the child had left the swing to get the teacher because Noah was bothering him. Noah was told the swing would need to be given back to the other child so what had happened could be discussed. Noah begain to flail and shout that he did not want to give the swing back. This is when the teacher was struck and papers were knocked from her hands. He also hit the other child twice again. (The other child did have marks on his body from Noah's contact). The other child was asked to step back and Noah was asked to please get out of the swing. He did get out of the swing but pulled the swing back and threw it towards the teacher with force. He was told "thank you for getting out of the swing." The teacher accompanied him without incident to my office.
While Noah was sitting in my office, (the teacher returned to teach class) I had to step out to ask for the classroom paraprofessional to accompany us and process through the situation. When I stepped out of the office, Noah locked me out. My keys, wallet, and phone were on my desk. I asked him to let me back in and he did not. I had to get a key from elsewhere to get back in to speak with him.
Supposedly while in the principal's office she had to step out to get the paraprofessional to come to the office so you could all sit down and work through what just happened together. She told me that YOU locked her out of her office and her keys and phone and wallet were on her desk and you would not let her in. I am not sure why she mentioned her personal items on her desk other than she felt maybe you would be bothering them or steal something? I did not like the implication. You were sitting there you said waiting for her to return. You said she slammed the door shut. You sat still waiting on her to return. She says she came back and was locked out and when she asked you to let her in you refused...and she had to go get other keys to let herself into the room. I have to honestly wonder (since you don't lie to me or anyone else I know of) if the door is one that is always locked and once shut it is automatically locked behind you and she screwed up by forgetting to put her keys, phone and wallet into her pockets? I don't know why anyone would have their items like that including their WALLET out on their desk and not in their pocket or purse or locked up somewhere?
SO anyway...she worked through the entire episode with you...explaining about the hurt feelings and how you created an UNsafe environment for the other kids and yourself and the teachers by your behavior, etc.
When she called me she went on and on about how she had been telling you that YOU would NOT be invited to school on Friday...that you were NOT WELCOME there. AND then she went on and on about how disappointed she was with you and how I should do nothing all day Friday here at home but constantly reinforce what she said.....how YOU ARE NOT INVITED or welcome at the school. I emailed her later stating I was shocked that she, holding the dual role of both the school psychologist and principal would encourage the same behavior most schools now do not condone and in fact....encourage other kids to tell on another when one is making another child feel like an outcast. Not acceptable. NOT welcome.
You already feel like an outcast enough and I refuse to make you feel even more like an outcast or not acceptable because of behavior you do not even totally understand let alone are able to control. You are learning. I never see that as a disappointment....but I also do not wish for you to learn at anyone else's expense.
SO major changes are going to have to happen here. I have a lot to think about. I am going to have to meet with the staff soon if I can get it arranged with them to see where they stand and what ALL our options are. This particular principal has mentioned to me over and over again...how she does not think it in your best interest if I would homeschool you again. I guess she forgets you are where you are today because I did homeschool you for a few years...because of these same issues within a public school before. So while she will support any decisions I make...she always throws in her opinion as to what she feels is in your best interest. However, she also said they cannot allow you to remain in school if you hit teachers or kids.
SO her opinion then of what is in your best interest would no longer even be relevant.
A few emails were sent back and forth.
ONE of my many is this one:
I asked Noah what he thought we could all do to avoid having episodes like today (hitting a peer or teacher) from happening again......and he said what we all are probably thinking......stay inside at recess....doing homework or reading. Now that would be fine....but we also have to remember Noah has been required to SIT all morning along with the rest of the kids.....and his "sensory" issues have not really been met. He is already going into recess time overloaded.....containing all that inside his body. Release is inevitable.....and Noah naturally seeks out the behavior that calms him and soothes him.
Being in an INCLUSIVE classroom does not always allow him the freedom to do repetitive sounds or motions he does here at home for example when working with me.......which keeps him on task and sane. Being in an inclusive classroom so far has also not allowed him the means to go take a SWING break if needed......time to just go MOVE his body to get it all out of his system. Noah can do well and "fit in" most of the time....but he has definite moments where he NEEDS to move his body....in ways that satisfy his sensory issues.
When Noah first started preschool he could not sit at all for anything. At home and at school to get him to stay on task we would have him work with a visual timer and after his timed work was complete (starting out at 1 minute at a time of sitting)...he got to do something PHYSICAL/sensory.....to RELEASE that energy that was built up inside of him from having to sit with all his senses contained for a period of time. This was very difficult and was very slow to progress.
Many times in kindergarten they tried to punish Noah by removing his recess and it backfired. WHY? Because he had no way to physically release that energy that had built inside of him all day. And that was only for a half day!
We have to understand that Noah does not just have autism....he also carries the diagnosis of SENSORY INTEGRATION DISORDER as well as GENERALIZED ANXIETY DISORDER....on TOP of the AUTISM and his speech/language delay.
This means Noah has true physiological NEEDS where he cannot control his body's natural instinctive response to outside stimulus. He has to learn this. This is very time consuming. When he is "overloaded" and required to "sit/contained" for a period of time.....all that energy builds inside of him seeking release. With Noah over the years his release has always been PUSHING....hitting.....especially before he became verbal. However even though Noah is now verbal....he seems to lose the ability to vocalize his needs or concerns or frustrations to someone WHEN something is happening. Right at that moment his body instinctively reacts.....and before he can stop it he has lashed out. Yes most times he will know he did something wrong after the fact. During the time he is oblivious. He also does not truly understand WHY hitting is WRONG. I tried to go over it with him tonight again and again.....he seemed totally lost and confused when I asked him WHY he should NOT hit. WHY was it wrong?
Slowly Noah became better at sitting for longer periods of time but he still required numerous breaks to do physical things (exercises.....different maneuvers to provide that sensory input and release his body needed). This allowed him and still does allow him to COPE and HANDLE events in the rest of the day.......especially events that come up that do not go the way he thinks they should go. Like today.
His OT therapist as I mentioned before had told me on the phone maybe the school could make sure Noah gets SWING TIME every day.....time just by himself with no outside stimuli......to swing and release his body's tenseness.
Recess has never worked well for Noah and it seems to be a huge problem for him this year. Personally I don't want him to go out at recess with the other kids anymore.....but I do want him to still get some time to PHYSICALLY MOVE his body or push or pull something.....spin.....swing..
I don't have all the answers and I am not sure what the school can provide or is capable of providing. But I do know this is a true need of Noah's....has always been a need and will likely always be a need. As he gets older he has done and will continue to hopefully do better with learning more inconspicuous ways he can handle his sensory overload. Right now this reminds him of Kindergarten when he was in a regular classroom there too......and it just all became too much. ACADEMICALLY he is ahead.....that is not the issue I am talking about. Socially and emotionally he has a ways to go...he CAN learn...but I am not sure the school will be able to provide what he needs so he can cope during the regular school day. When I ask Noah why he does what he does he does not know. When I ask him how his body felt right before he hit anyone today he said "it feels like it wants to PUSH." This has been the same answer Noah has given since he was very young. Before he became verbal it was obvious that was the reaction his body had as that was the reaction he had.
Many autistic children do seemingly "mean" or "wrong" things and people think they are just being bratty and just ticked off because they are not getting their way. While we all know and understand as adults that the world doesn't always work OUR way....autistics ...even adults.....have a very difficult time understanding let alone accepting this. Noah used to go up and PUSH kids and BODY SLAM them because it felt good to HIM and he liked that....so he figured anyone else would as well. He had no understanding of that being wrong. Same for other autistic children I have seen when they go up and smile while pushing another child down. They know it is wrong but cannot stop smiling......almost laughing about it. It has everything to do with what is going on within their bodies and what sensory issues need to be released. It is not something they can instinctively control like we can. They have to learn how to control it....it never comes naturally to them.
Tomorrow I will also NOT repeatedly tell Noah he is NOT INVITED to school per your suggestions. I was quite surprised when you as the school psychologist as well as principal would encourage the same methods most schools tell students to REPORT on another student when one is making another feel as an outcast. This incites bad feelings, anger...this is what later builds in a child and they go into a school and blow other kids heads off.
Noah feels like an outcast to begin with many times in his regular day. He is aware now that he is different in many ways. I am thankful he still thinks that is a good thing and not a bad thing. I am not going to make him be filled with resentment or anger over being made to feel inadequate again for behaviors of his that he truly has a physiological hard time restraining let alone understanding.
You are free to your opinions on this and if you want to think he is just "acting out" because of any number of reasons.....I can more than easily provide you with medical documentation from many sources to show you it is in fact quite the opposite.
I have to say I am not very comfortable with Noah returning to school. I feel we have set him up for failure as we have yet to come to a solution which will PREVENT these episodes from occurring in the future....which will mean if it happens again he would likely get expelled.
I am sorry Mrs. _______ you also are so "disappointed." Having a child such as Noah I can honestly say I have never felt "disappointed" in him. ... he is a joy and offers so much to me and those around him. I understand he is different and has specific issues and needs....but I do not waste time being disappointed when he cannot do something the exact same way everyone else can or is expected of him. I know he will get it eventually or come up with a better way. I am very proud of him for all the progress he has made over the years and each time he fails only means he is learning and that is a good thing....nothing to be disappointed about. I however do not wish to put anyone else at risk for the sake of Noah learning something.
I feel bad for Mrs. ______ the classroom aide. She truly does seem to understand Noah and almost cried when she brought him out for me to pick him up. She is afraid I think he will not be returning to school. I imagine you are too. She said it best when hugging him before he left she said to Noah " Do you understand that I am not disappointed in you?.....that I am not happy with what you did but I still care about you?" And she told him she would miss him a lot and hugged him and Noah almost cried then too.
Noah is a boy with many confusing behaviors even I or himself do not always totally understand. But at 9-1/2 years and counting I can now officially apparently be classified as an "expert" in autism if I pressed it. I can see what he needs....I have outlined most of it here or have mentioned it before.
I am open to suggestions.
and I sent this (part of another email to the principal...yeah I am wordy)
AND regarding your opinion on homeschooling....I understand you do not feel it in Noah's "best interest" to be homeschooled and yet he would not even be where he is today and as strong academically if he had not been homeschooled so it was and is not and would not ever be a BAD thing for Noah or not in his best interest. To have a one-on-one teacher? Come on....it is ideal for ANYONE. SO I assume you are referring to the so-called "social" aspects of it all.....and to be honest......Noah gets PLENTY of other social situations in his lifetime outside of school......where he can learn in a more "controlled" fashion with direct immediate input....what is right and wrong and what to do or not to do. FOR EVERYONE's safety this is ideal and needed and probably the only way he can handle social settings still. I know everyone waits for the day when he can be turned loose to just KNOW what to do like all the other kids......but we have to also realize that could be a long way down the road.....or Noah may always need someone to remind him of these simple things over and over.....that may be a possibility.
As far as the social situations he is being exposed to within the school I have to be honest and say I am not sure they are all that helpful as of yet for Noah. He has learned a lot of bad words in the school he never heard around me or my family .....he has seen other behavior that is wrong. He does not always understand those things but can be good at repeating those things which of course then causes him to get into trouble. He is also approaching the age where other kids KNOW he has issues and KNOW he can easily be talked into doing things inappropriate as he will not verbally tell on them and he can get into trouble. For example there has been another student who in the past tried to get Noah to PEE in the sink or trashcan in the bathroom rather than the toilet or urinal. Now if Noah had done so.....he obviously would have been tattled on and gotten into trouble. Do you see my point? I am thankful in most situations Noah continues to do or try to do what I have taught him and that is to just avoid being around those kids altogether...do not listen to them......etc.
So yes I am aware of your strong feelings against homeschooling but I will always be a strong supporter of it for anyone including Noah. He did not get where he is today by accident. He did not reenter the public classroom setting deficient academically in any way. He did not get to where he could handle what he can today on his own in social situations or sitting in a classroom....etc. Homeschooling served him well and if that is what he needs again for awhile than I don't care how anyone else might feel about it......including myself.......I would have to do what is needed or best for Noah for that period of time. I am not sure how anyone could equate that to not in a child's best interest.....providing for them what is best for their specific needs. Homeschooling allows much more freedom to do much more for Noah than a public classroom ever could or seems to be willing to do. He would not suffer or not learn how to EXIST and handle our world if he was homeschooled which I think is your fear. Just the short time he was homeschooled helped prepare him very well to handle all that goes on in his environment so much better than he was ever able to before.
BUT I am not saying I will yank him and homeschool him. I want to find out what all the options are for Noah and if the school can somehow change this entire recess issue to help prevent situations from coming up in the future like they did yesterday. Again I feel we need to meet to discuss all the options before I can make an informed decision.
I want Noah to succeed. I want him to avoid beginning to dread school......walking on eggshells the entire time at school. It is possible in our world today to reduce or eliminate stressors so one can better cope and handle their immediate world. Right now I think that is a need of Noah's. I think over time with more and more exposure he may be able to slowly become more and more tolerant of outside stimuli within a classroom setting.....etc. BUT we may have to be realistic and also realize he may not handle those situations well. That does not mean he will not be successful as an adult....or in the world. We have many successful human beings in the world today who are not all that social or avoid super social and stressful situations. They are probably smarter than we give them credit for as they learned a long time ago they needed to avoid that to survive and be as stress-free as possible. This allows them to easily cope and thrive.
Being in a public classroom is not the only route to success. I want Noah to continue to embrace his differences ...not resent or hate them one day. I want him to always feel it is more than okay to be a square peg that won't fit into a round hole. As long as he can do what he needs to what difference does it make? When we shove a child like Noah within a regular classroom with everyone else however.....too often everyone is too busy trying to chip away the square edges of the peg to make it more round like everyone else.....and the spirit of the child is destroyed in the process. Special accommodations are overlooked or ignored altogether the closer they think the square peg is to becoming ROUND like everyone else.
and thus another chapter ends as one begins in our lives.....