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.

Mommy
XOXOXO

UPDATE on prayer request......

they pronounced my cousin dead at 6:00 p.m. this evening. Please continue to pray for all my family during this time.

thank you for all your prayers and thoughts.

Requesting prayer ......

My cousin Mike Jr. was involved in a bad accident this morning and is currently in the hospital in critical condition. I am asking for prayer for all involved.....family members, his wife and children, his mother and father, grandmother, cousins, sister and himself. This is horrific news....and such a shock. He was on his way to work this morning before 4:00 a.m. and a semi-truck and his truck collided. He was ejected from his truck.

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.

mommy
XOXOX

(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).

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!

Mommy
XOXOX

Denis Leary on autism........can someone spell IGNORANT?

ALL I CAN SAY IS OUR KIDS ARE ALREADY SO MUCH SMARTER THAN DENIS LEARY COULD EVER HOPE TO BE. WHAT AN IDIOT.

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.

NOW READ that statement closely.....there is a KEY word in there.....key phrase.....where he says he supports diagnosis and treatment of "REAL" autism. Guess he is one that thinks a lot of kids with REAL autism don't have REAL autism..... and let's pat him on the back for sitting around WATCHING his friends raise their autistic child. No mention of him HELPING them. AND I guess we all assume (ass-u-me) that you meant HIGH functioning autistic child as any child while they are breathing and still alive would be considered "functioning" whether autistic or not. Yeah....I am nit picky.

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.

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.

Mommy

XOXOX

AND 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.

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.

Dear Noah......you are suspended from school.......

This is a long emotional story.....so I am going to try hard to be brief and to the point.

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.....something to satisfy his needs so he can tolerate hiccups in his daily routine while at school and in the school day as well as stressors that would set him off into some sort of rage or fit.

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.....

Dear Noah......you have been suspended from school.....

more on this after I get more work done.....as it will be a lengthy post.

Dear Noah......today is picture day at school!

(Noah with his back to us in red and a few of the other kids who went on the trip learning about seeds.  There were THREE classes that went so like almost 70 kids!)

You stayed home Tuesday to recover from the "walking" field trip.  You were just worn out and your neck hurt.  You had a very tough time sleeping and I figured you would have a hard time handling the day without enough sleep.  You did not wake up until after 9:00 a.m.

(The SUGAR SHACK where they make maple syrup in the fall/winter)

We both agreed.....the "walking" field trip would not be something we would do again.  It is just TOO FAR to have you kids walking and so FAST!  (Since the school has limited resources and do NOT provide bus transportation....all the kids WALK to their field trips.  Now if the places were all located relatively close I would have no issues. )

(coyote)

I volunteered to walk along with the kids this year to see what really happens and how far it really is and how safe.....etc.

(kids learning about the buckeye tree which they are standing under)

Noah your classmates are all very nice kids.  I got a kick out of talking to them all and walking with them all including  you.  However, we had limited time and they made everyone almost RUN to get to the nature reserve....which was about TWO MILES ONE WAY.   AND they did NOT walk in via a back route but instead dragged all of us on the main road where cars drive 55 MPH plus!   Sure we were off the road into the ditch area....but that is still not safe and makes it very difficult for kids to walk ....and some of these kids were handicapped and had difficulty with their feet or walking to begin with! 

(Giant hornet's nest....blurry picture sorry)

I personally will never volunteer to walk it again unless they provided ample time.   We left late coming BACK so we barely made it back in time for all the kids to get to their buses on time.  I only had time to sign back out of school and walk around to pick you up Noah.  It was cutting it too close time-wise and too much to ask for you kids to walk that far that fast and then after walking even MORE at the reserve....then have to walk another 2 miles back!

(great horned owl)

AND it is not like we have not been there before.....as we all have.  SO I am not really even sure about the wisdom of this.  I think a trip to a few places here in town would have been better.  This reserve is OUT IN THE COUNTRY....and a bus should provide transportation there. 

(Hawk)

I was proud of you and how you behaved though....and all in all it was an okay day. 

Since we were moving so fast most of my photos turned out very blurry!  I mean horribly so.   So I don't have much to show for it. 

We are finally getting some rain today!  FIRST IN WEEKS OR LONGER!  I would like to crawl back into bed and sleep in!

I love you Noah.......hoping today will be a great day for you and you take a fabulous photograph for school!

 

(some of the staff at the reserve)

OF NOTE:  We made another trip BACK out to Shawnee Prairie to walk around some more and allow you time to check out their bathrooms......and take photos and movie clips of the toilets......as that is what interested you the most I think from this whole trip.  You also were the first to notice a port-a-potty right by the area outside where your group talked.....

 

Mommy

XOXOX

Dear Noah........Friday at school you came up missing again.......

When I picked you up that day the teacher came out and told me after your lunch detention when you were to return to your classroom apparently you did not. EVERYONE was very worried this time and actually scared because two teachers AND the principal were all out looking for you. I am not sure why they did not send down an ESCORT or chaperone of sorts......as it is obvious you need one. They finally found you down in the gymnasium restroom..oblivious to all around you.

sigh......

We had a busy weekend......Saturday was the Fire Parade where grandma and grandpa L live.....and then Sunday you and I headed out to Brumbaugh's Fruit Farm and had a BLAST! We went down the slide at Monster Mountain about 10 times at least! SO much fun. (I noticed now when you are watching a parade in person you no longer have to cover your ears when the loud sirens start...and you WAVE to people in the parade.....very cool!)

TODAY (MONDAY) is a walking field trip to Shawnee Prairie Nature Reserve here in town.....and I AM GOING along with another mom to help out.

SO I do not have time to post pics and movie clips right now but I will post some later today when we get back!



I love you Noah....today should be fun! PICTURE day is Wednesday!

Mommy
XOXOX

UPDATE on a previous story ........

Remember when I posted a story about a little boy named NATE who had autism and had been removed from his home and forced to live in a mental institution and was being drugged...etc? Well.....I missed this but back in MAY he was finally SENT HOME!!!!

NATE IS HOME

Dear Noah........the yellow caution zone......

You were in it again today. Today you had a rough day. You had several things that happened, all during recess time.

Apparently during recess there was a girl that was moving her hands in some motion that really bothered you......so much so that you apparently went up and hit her to try to get her to stop. I don't know if you asked her to stop and she did not......if she continued to do it on purpose because she knew it would upset you or what. ALL I know is you hit her...and got into trouble for that.

You also tried to take a ball away from another little boy at school.....he had it....he had originally gotten permission to play with it.....it was his time with the ball...but somewhere along the way I guess you decided it was your turn and rather than use words (or maybe you did and he said no).....you decided to get him down on the ground and sit on top of him to try to get the ball. He was on his belly...holding the ball underneath him which I guess meant you were then on his back. No fighting...no crying.....you were just both wanting the ball but you went about it all very badly.

Then (also while still on the playground) when it came time to line up....you were in such a hurry to get to your spot in line first (a pre-assigned spot) that you were kicking other lunch bags and backpacks out of the way. (kids put them on their assigned spots to grab later on the way into the building).

Needless to say this short time on the playground (maybe 10 minutes or so) got you into trouble and now you will be serving THREE lunch time detentions.

You also talked about kids now starting to pick on you more or tease you more...and you are aware of it and it bothers you tremendously. You talked about some boy coming into the restroom while you were in a stall with the door locked and him trying to kick the door in with his feet and shake the lock with his hands. Of course when I asked if you used your words to tell him to "stop" or let him know someone was in there you said NO....but you said he knew you were in there because you had flushed a couple of times. Because of issues in the bathroom they have now made the rule only ONE boy goes to the restroom at a time. This is a good rule I think.

But this has caused me to think about a lot. I want the best for you. I want you to succeed. I want you to learn academically at school but also have someone there coaching you during these social outings so you will learn what is right and wrong and what to do and not to do when it is happening...to take advantage of those moments. It is what I would do here at home.

I sometimes don't know if putting you back into a public school setting is the best choice for you. I feel I am holding you back in many ways. I feel you are sort of stifled and put into a box with everyone else and you will only learn the bits and pieces of information the teachers toss into that box. No more .....no less. I feel you are not really having social issues addressed at school. Now they talk about putting you into a ROOM by yourself during recess? I think not. What is that going to teach you? We had to deal with isolation issues before with you at a school when you were in kindergarten. In fact that was the last straw for me at the time and I yanked you from the school and homeschooled you.

Again I want the best for you. I want you to learn all sorts of things with no limits and be excited about learning and anxious to learn. I want you to pick some things you want to learn about as well. I don't want to limit you. I want your needs better addressed. I want to provide for you and us to not have any worries. I really feel I am failing in that regard. While I don't let you on to the stress....it definitely exists and I have no safe buffer anymore if we need it. GOD will truly have to watch over us always now...and I have to stay healthy and strong forever....not just for me but more importantly for you.

SO at this point I am not sure what to do. I have a lot to think about already in our lives....and this will be one more thing. I ask for prayer....because God is the only one who can show us the direction we need to take.

I love you Noah...with God's blessing and guidance and provisions, we will get through all this.

Mommy
xoxox

Noah playing his piano -Somewhere Over the Rainbow

He was about 5 years old...and since he loves the Wizard of Oz.....he played this song a lot.......

Dear Noah......looking back at a typical homeschool day......

Here we were reviewing what we had learned about butterflies......

Dear Noah.......hopefully today you will feel up to going back to school!

You missed 2 days of school this week and today is Friday and we are hoping you will be fine to tolerate the day at school. I was going back looking at some old photos and video clips yesterday of the family and yourself....and I found some of where you were reading for me during homeschool. Now I remember that time and I could understand you.....but now listening back to it......I have a very difficult time understanding what you were reading and even yourself....you said you could not understand yourself so well. I praised you for how much you have improved over the years and how well you can speak and talk and read now. Even you recognize this improvement and seemed proud of it. So for other parents out there thinking your child may never speak or talk or read......please hang in there. Noah did not really talk until almost 5 years old...and then what he said was barely intelligible. He has come so far but it has been a process.....

Here is a snippet of Noah reading from a Dick and Jane book when he was about 5 years old.

Noah and his time machine part II....

Dear Noah.......you stayed home from school and group today..

You had a horrible time sleeping last night. I mean you were up and awake more than down and asleep. Of course since you ended up coming into my room this also meant I got little sleep last night.

I know for a fact if you do not get at least 9 hours of sleep at night...uninterrupted sleep.....you can be way too emotional the next day...with just about anything sending you off into tears or a semi-fit. SO......because your nose and cough and headache were still all acting up.....I let you stay home.

AND last night you wanted me to make homemade gingerbread cookies. I should have only made 1/2 recipe because I really only had about that much molasses for the cookies but we always add a little less anyway for your taste.....so I figured it would be enough. I also forgot exactly how much less spices we use because I know I do not add the full amount. Well..for some reason I decided to make the WHOLE recipe....and I added all the spices......and once they were baked and even I smelled them.....I thought to myself "there is no way he will like these or eat these!"

I put some in the freezer to ice later with icing as I got tired of making so many cookies all at one time. YOU are the only one eating them..I made WAY TOO MANY! WHY????

Because since I made them you had 3 last night....and that is it. Today you cried when I asked you to try one today because overnight they did get a much better taste and were softer. You then told me you did not really like homemade gingerbread cookies anymore....or at least the ones that did not have enough molasses. I told you we had made that kind before and you liked it. You just got so used to eating the Pillsbury ready-made gingerbread cookies....now you won't eat anything else.

This happens a lot....and now I am wondering what in the world am I going to do with all these cookies? You told me to throw them away. I will probably send some to grandma C's house if she would like a couple. Maybe I can put some on another plate to give some away to someone else. The rest will have to go somewhere as I try to avoid eating those types of foods and today..all I have done is pick at those cookies! I am SO SICK of cookies and the thought of them now makes me want to gag!!

sigh.........

here is a video snippet of you talking about your time machine you want to build so you can go back in the past and see toilets and doors in the former K-mart stores and other places.

I love you......hoping you feel better tomorrow!

Mommy
XOXOX

Dear Noah.....you had a walking field trip today.....

to the library. Since the school was closed the last time you were to have the field trip due to Hurricane Ike, they did it instead today. Tomorrow you are walking to The Farmer's Market though I did not get an official paper stating so. You only wrote it down in your agenda. This makes me wonder.

You did pretty well today but apparently had a couple of small incidences.....so you had to move your tag to the yellow zone.

You woke up this morning feeling better....no more sore throat......but by the time I picked you up you were sneezing and having a runny nose and cough. So it is probably allergy symptoms or you are fighting off something. At this rate you won't be going to school tomorrow.

You have had a very difficult time this year staying healthy. We have spent little time actually outside as anytime we do go out you or I or both of us get something......cold-like....sinus infections......upper respiratory issues...something. I figure something is in the air.

You can tell you feel bad tonight....so you are going to bed early.

I love you....I hope and pray you feel better in the morning!

Mommy
XOXOX

Dear Noah.......today was the first IEP meeting we had I did not feel sick to my stomach beforehand....

 

(Noah much younger in Colorado)

I met with your teachers and principal this morning before school started.  Our meeting was at 8:20 a.m. and you woke up complaining of a sore throat.   We already had to reschedule the meeting once...and I was not wanting to miss it if possible.  Once you got back up the second time you felt a little better...and I told you to go to school but if it started to feel really bad to let a teacher know.  I also told your teachers at the meeting so they could pay attention to how you were feeling.

The meeting went very well.  I was not  nervous about this one at all or apprehensive or nervous....did I say nervous?....all such new ways to feel before going into one of these IEP meetings.  I am thankful.  I thank God for this.  I truly am thankful each and every day with all the progress you continue to make, even with the setbacks.  You learn from the setbacks. 

None of the teachers or staff have any academic concerns about you whatsoever.   You do still have a few social things to grasp which will probably be ongoing throughout your lifetime.  BUT  you are doing well most of the time now even then.

Our biggest concern right now and finally with the staff is your wandering off.  I expressed my concern about you perhaps wanting one day to leave the school building entirely to wander off downtown to check out bathrooms in the courthouse and other places.  FINALLY they took it a lot more seriously since your teacher also said you did enter the building a few times from the playground WITHOUT permission and then came up missing.  All to of course.....flush toilets in some bathroom somewhere in the building. 

The problem is they did not know where you were......and that is dangerous and bothers me.  I have finally gotten across to them how serious this is and my concerns and they are now going to really watch you better and inform the other staff outside at the second recess who you are and that you tend to wander off.

BEING first is also an issue for you.  You still have problems with being second or heaven forbid last....at anything.  Many times instead of playing on the playground at recess you will already be standing in line up waiting to go in.  Now  you all have assigned spots in line up.....so you are not first in line....but you apparently want to be first in the line up. 

All in all you are making huge progress.....and I would say some of the social stuff is to be expected......and I know they will improve.

 

I love you Noah and am very proud of you. 

I give all the praise to God for all your progress.  You are a blessing.

 

Mommy

XOXOX

DEAR NOAH..........you have had a couple of trying days.....

First of all you missed 3 days this week...MONDAY because of the Hurricane and loss of power at the school......TUES AND WED because you did not feel well.....seemed to have ZERO energy......and could not get up for school.  I will have to watch this closely because the cardiologist did say if you had problems with that valve extreme fatigue would be a symptom.  BUT you also get like this from time to time.....and maybe all along that is the reason why....or it is just you....or a combination of things....including low muscle tone still in some areas.

ANYWAY Thursday there was a misunderstanding in MUSIC class between yourself and another little boy.....you thought YOU were to pass music books out...he thought he was.....you got mad and very upset as you did not understand this and took a book and slammed it into his shoulder and were saying things to him that were not very nice.  NO cussing....just not nice.  He was taken to the school nurse for ice on the shoulder and you were sent to the principal's office where they went over all the social reasons why this was INappropriate.   You also got a detention and lost a recess.  You came up missing a few times as you left places you were not to leave in order to go flush toilets in a bathroom in the school.  You also had a hard time staying focused or sitting contained in the classroom.  You wandered off more than once.....they found you one time IN the nurse's office checking out HER toilet and flushing it.  She was NOT there and that is a no no. 

FRIDAY before I dropped you off we again reviewed all the rules.....and how important it was for you to be near the teachers and other students when outside on the playground.....how you could not spend a lot of time in the bathrooms flushing toilets.......or wandering off to go find a new bathroom to  flush toilets.  You repeated it all and seemed to GET IT.  However, when I picked you up they told me after recess when all the students came inside......you came inside....but then did NOT return to your classroom.  Instead you AGAIN wandered off......exploring more bathrooms.  FINALLY the aide found you in the JANITOR's room/bathroom.....in there flushing toilets.  You got your green tag moved to yellow for that.  BECAUSE they were worried...and did not know where you were.....etc.  You did not follow directions......etc.

THIS has been a reason I have requested an aide to be with  you pretty much all the time....just to make sure you DO go where you are supposed to go and do not wander off.  This has been an ongoing intermittent problem for you and I certainly wish to avoid a phone call one day saying you are missing and cannot be found anywhere....and you walk downtown to check out bathrooms at the courthouse. 

You also were wanting to CALL ME all day.....saying we were MOVING back to the town where grandma and grandpa L live....as the schools there were BETTER and you would be going to THOSE SCHOOLS instead of Greenville and to call MOM as we were moving and you had to get out of there as you were NOT going to school there anymore and ON AND ON AND ON!!!!  THIS went on throughout the day.   I know where you got that idea....so I explained it all to you when I picked you up.   I can only imagine how exhausting that was for the aide or teachers.  I know you can be relentless with continual talking about a subject that concerns you.

SO.......the aide said she will start  making sure you come in after recess like you should.   Hopefully someone will keep a better eye on you even IN the school during class times so you will not wander off again.  I think you wandered off like 5-6 times this week at least.  I do not like that.

I love you......but you have really got to understand how wandering off can be dangerous.  We have our work cut out for us!

Mommy

XOXOX

Dear Noah.......you talking to grandpa L. about toilets....one of your favorite subjects....can anyone tell??

Dear Noah........we are okay after Hurricane Ike came through this area....

it still had a level 1 hurricane winds........and we lost power for over 6 hours......but I am so thankful our power is back on. MANY....hundreds of thousands are still without power and it could be days or a month our local electric company said before they will be able to restore all the lost power. The clean up has said it will take approximately TWO MONTHS to clean up all the downed trees .....it is a mess everywhere and some local cities are even declaring a state of emergency....and not allowing driving anywhere. We had a lot of wind......no power.......we played Monopoly and Bee Bee Bumblebee and Don't Break The Ice......and sat around and talked. You slept in my bed last night....and your school is closed today because it has no power yet.

Here is a snippet from the start of the storm as it came through our area yesterday.....

Dear Noah......."passed" minus the "p" spells............

yeah.  I guess in school yesterday you had some paper or something with the word PASSED on it.....and I guess you placed a hand over the P and said something to another student about looking to see what it spelled and the aide saw/heard this and made you move your tag from the green zone to the yellow zone.

Now I guess I understand "why" but at the same time "assed" is not really a word...though I am sure you were wanting attention drawn to the ASS part of the word.....and then I did explain to you that while ASS is not a best choice term to ever use in the classroom setting or in most situations probably in the public in your lifetime......ASS also in the dictionary is a very real NON-cuss word meaning MULE/donkey....etc.  

I always felt moving your tag in the classroom from a green zone to yellow, red or black should be based solely on behavioral issues and/or not listening...etc.  Apparently no other student even saw what you did let alone heard you or understood what  you were implying.  SO I don't know that I would have done anything in the classroom other than warn you so you could avoid ever doing that again and not making such a big deal out of it.  BUT they have their rules and rules are rules and you do have to learn to follow them.

So you had your FIRST YELLOW day for the school year yesterday.   I honestly thought kicking the kid in the shins would have deserved a YELLOW day at the very least but you did not which did surprise me .....a lot.

Anyway....we went to the library after school and got you your library card.  You are very excited about that and happy and now on the field trip Monday to the library you will be able to check out a book while there. 

I love you Noah.........very much!

Mommy

XOXOX

Let's take a moment to remember and be thankful for all we do have.....

Dear Noah.....you had a couple of incidents at school today....

You did well in school but they realized you were in the bathroom too long...so sent an aide to get you. You were in the stall with the door shut and locked....yelling that you were NOT going to come out until LANCE left the bathroom (some other little boy in the room) because you HATED him. This was all worked out and you apologized to him after the aide explained how it would make one feel if someone said something like that about them to another...etc.

THEN the teacher decided to start making you all LINE UP BY ALPHABETICAL order after lunch to go out for recess.....since you are always like first in line this did not go over well with you. You got in line in the front as always and when another boy told you that you were all not lining up that way anymore.....you got upset and kicked him in the shin.

This got you sent to the principal's office....where they explained the rights and wrongs of the entire incident to you....you apologized to the boy and you were told you would serve a detention in the lunchroom and lose a recess if that happened again.

Academically you had another great day.....doing very well on your Social Studies test...you got an A+ all correct. In fact you were very proud of the fact that YOU got your test completed before anyone else in the room did. I am amazed too.....but knew you would because what they are teaching you ....I already taught you about 3-4 years ago.....(the oceans....continents......etc). BUT review is good...and they added a few other things onto the list of things to review on your globe....so it is all good.

BUT there are times I wonder if I continued to home school you....even part-time which I think I will do again....how much MORE you might actually be learning because they just don't seem to always cover as much in school. I will have to think about that. I want you to keep moving forward and not just tread water.

I love you.......your after school social skills classes and a mentoring program will be starting soon. I think those will be good for you for building better social skills. We spent the afternoon after school yesterday at the park. We even took Opie along. The weather has been beautiful! We then played Monopoly.....here at home. Tonight we played Don't Break The Ice. I am so thankful to get my work done here at home early so I can spend time with you after school now....I love that ...and having free time to go places or hang out or be creative!

You are having a WALKING field trip on Monday to the library. I need to get you a library card before then. I am hopeful all will go really well for that. I think you will do well. So tomorrow after school we will go to the library to get you a card.


I love you Noah!
Mommy
XOXOXO

Dear Noah.......

We went to grandma and grandpa L's house on Sunday to celebrate your cousin Alex's 16th birthday.......here you are with cousin Audrey making faces with Alex sitting in the middle not sure what to think about it all!

You did very well while there.......and were very talkative with grandpa L. about toilets.

Somewhere during the day you came out and asked me "when did I first have autism?" You are becoming more aware of it all and hear others mention things from time to time. I told you that you were "officially" diagnosed with it in April 2005 but you were probably just born this way....and it was cool....no big deal...it only meant you just processed information a little different from others or might have to take a little longer to learn how to do some things or be really great and super fast at other things. I have never kept it a secret from you......but instead preferred to just keep it out in the open...acting like it was not big deal....because it IS part of who you are......which is nothing to be ashamed about or secretive or something to tuck under the covers away from others to see when they obviously would see it anyway. I don't want to deny parts of who or what you are to yourself or others.

So anyway......we had a good time Sunday.

You came out from school telling me that some kids at school during recess tried to tell you a bad cuss word was okay to use all the time.....and when I asked you what word it was.....you said they said "RETARD." I tried to explain that although NOT a CUSS word in the sense we label other cuss words.....it is one most prefer not to use as it can be used in ways that are not nice....and poke fun of others..etc. I asked if someone called YOU retard and you said no....you said they were just calling other kids that like "you are such a retard!" to other kids.....NOT you...and you were standing up trying to say that was wrong.....etc. I am thankful personally you think of certain words as cuss words because you will probably avoid using them under any circumstances. I know Sunday when we were all sitting around playing cards.....as a few family members would shout out "this sucks!" you quickly came running into the room saying "they just said a cuss word..a bad word!" and you were not sure what to do think about it.

Again I said sucked was not actually a cuss word but yes....not a word we should go around saying a lot and you should definitely not be ever using it.....or at school!

You have been enjoying this year in school.....and doing well. Your aide for the classroom came up to me after school yesterday and asked if I had ever heard you read. Of course I have......and she said she was amazed at how well you can read. She is new this year....and has not ever been around you before...so thinks you are great and you really like her. I am thankful God has put great teachers and aides in your classroom in this school.

I need to get back to work. I love you Noah!

Mommy
XOXOX