Sunday, April 27, 2008

Dear Noah.........you made a new friend at school Friday...

You saw another little boy at school who had a Sonic the Hedgehog mini plushie....you seem to be drawing those children to you lately. So you naturally went up to him to strike up a conversation. According to your parapro you two became the best of friends, really enjoying playing together and having so much fun together. I am so happy you have made another friend at school!

Yesterday you were making movies on your computer. I was very impressed. You walked yourself through a tutorial on Windows and learned how to make "sprites" which you immediately then made some with SONIC the Hedgehog of course. You found some backgrounds and some Sonic images and combined them together and then made a sprite to make it all animated.

Do I have a future filmmaker on my hands? I think that is pretty impressive considering you did it all on your own and most adults would probably not even know what a sprite is (other than a soft drink)...let alone how to make one yourself!

We have not done a lot this weekend. You have wanted to do something but not really wanted to leave the house. I can't complain....I am sort of in the same mood.

I love you Noah!

Mommy

XOXOXOX

video

Noah made this snippet and also did his own credits and messages at the end of the clip. The last sentence I am not sure he really understood what he said. He tends to get things backwards sometimes. When he said he was sorry for the people who DON'T use guns when I asked him what he meant (since I apparently took this the wrong way and thought he meant he was wanting more people to use guns) after a long discussion he finally said what he meant was he was sorry for the people who could not use guns to help defend themselves.....he felt sorry for them not being able to help themselves.....because they don't use guns and someone else was using guns on them.

WHEW! glad I got that straightened out! This is a classic example however where a teacher let's say....might totally mis-read this and think Noah was intentionally meaning something really bad.....when he was totally innocent here and actually was only feeling bad for someone not being able to help defend themselves. It can be quite complicated sometimes in figuring out exactly what someone like Noah might mean....and he can become quite frustrated in the process of trying to explain it to me or anyone else.

Anyway....there you have it...his snippet above....in the middle......his first animation!

Friday, April 25, 2008

Dear Noah......."You are NOT shoving Sonics down your pants!"





you looked so dejected once I said no!

Yes.......that was your idea the last couple of days. That is all I have heard from you. You are wanting so badly to take your Sonic plushies to school you even try to get the teachers to beg for you at the end of the school day when I pick you up.

Then you came up with the idea the other morning that you could SHOVE them down your pants and sneak them to school. Yeah...like no one would ever NOTICE that massive bulge in your pants!

I have been telling you no.....and all the reasons WHY.....such as you might lose them...or someone will steal them..etc. All to no avail. You are relentless in your attempts to sneak them out of the house.

Today you came up behind me and said to me "do you know what I am thinking?" I turned around to find you standing with pants unzipped.....plushies in hand. As I started to say very loudly "NO!" you began shoving those plushies as fast as you could down your pants giggling the entire time. I will have to say this......after they were in there......you really could not notice it all that much....it resembled football player pads over their thighs. You were content and really thought I was going to let you leave like that......but again I said the infamous "NO!" and all the reasons why.......

You got upset.....but got over it....because I told you maybe we could buy you a T-SHIRT or two with SONIC stuff on it.....to wear THAT to school so you would HAVE the Sonics with you at school but would not have to worry about anyone taking them from you.

You were happy at this idea.....and all was well in your world again.

Until it came time to drop you off at the front door at school. Lately you have reverted back to your kindergarten days when you always felt GETTING INSIDE that front door was a race....and you were determined to never let another child pass you up or beat you into the school. We worked long and hard getting you to realize just entering the school each morning was NOT a race....and that there were always going to be other kids entering the building before you....and that all that was "okay" because in your mind it was not okay let alone acceptable and it used to trigger huge meltdowns outside the school from you.

The entire time since I have been taking you in via the front door now at your current school this obsession has recurred. Today you got rather snotty and took off running as you saw another car pull up......but you took off without your backpack...I was still holding that. I was yelling at you to come back and get your backpack......asking if you wanted to get into big trouble today.....as I approached you as you FINALLY stood right at the doorway ....trying to block anyone else from getting in....I again asked you......"are you wanting to get into big trouble today?" to which you replied, "no....I just want to be first!"

I placed your backpack on your back and off you went through the doorway.....looking back giving me a dirty look....because yes.....some other kids beat you into the building first.

sigh...........

I love you......maybe you should take up track and field events......if you like to race so fast you beat everyone else.........perhaps that could be a good fit for you?

mommy
XOXOX

Tuesday, April 22, 2008

PLAY AWAY INDOOR PLAYGROUND...A GREAT IDEA!! Check this out!








I am sure many of you have already seen this product or items like it. I know when Noah started occupational therapy and physical therapy I wanted to have a room also at home where I could install a swing much like the one they used in therapy for Noah...which is very similar to this swing you get with this product. If your child is like Noah and MUST swing to help calm down........this could be the answer.....especially if there are times when your child (like Noah in the past) does not want to venture to a park to be around other children. Back when Noah was doing his therapy......it was also during a time when he did not want to be around other kids much if at all......and I wished I had a way to have a swing installed INSIDE my home for him to swing on. We would always just try to pick a park and time it right to where there were NO other people there and once it started to have other people come and Noah freaked out we would leave. During the summer months....it became almost impossible to sometimes find places to go unless we did it very early in the day.

Noah used a swing in therapy similar to this sling swing.....but his in therapy was more like a giant sheet he would crawl into......and then he was not seen by our eyes....and he could swing.....but his swing he could also spin. AND SPIN forever.....he LOVED it and it would calm him down....he finds it very soothing. I don't know if you could buy an attachment for this product that would allow a swing to spin on this or not.....and since it has to be in a doorway the space may not accommodate spinning too.....but to be able to swing!!!!! AND INDOORS? SO cheaply? WITHOUT having to install big items into your ceiling joists and such?

All I can say is WOW! AND I wish I would have seen this product before now. SO since I KNOW there are probably others out there with similar needs and situations....I wanted to share. Of course if you all subscribe to AUTISM TODAY via e-mail you are already aware of this product because you received an e-mail about it. AND as you can tell if you go to the site and see the video clipped demonstrations....once the bar is properly installed 2 men were able to do a chin up on the bar...at the same time......so it is very secure. I guess if you wanted....you could also double it as a work out item in your home to do chin-ups/pull-ups on when your child was not using it to swing by. Your child can swing to soothe themselves.....or you can also have them add the trapeze bar to help build upper body strength. They can hang from the bar......and suspend themselves by their hands and arms.....not always the legs.....they can swing back and forth that way...Noah used to have to do that. In therapy they would stack soft blocks in front of him .....then he would grab the trapeze bar and have to HANG ON while swinging forward to knock the blocks over with his feet! GREAT fun for the kids while also doing therapy! YOU CAN DO THAT WITH THIS PRODUCT!!!!! The same things! SO many ideas and possibilities! I am going to have to get one for Noah....I know he would love it and use it a lot! I think MOST kids would like this product! I mean wouldn't you?

Anyway......you can go here to check it out..... PLAY AWAY INDOOR PLAYGROUND

Saturday, April 19, 2008

Dear Noah....you have been doing much better in school ....


as far as your behavior goes. This little snotty attitude of yours lately though is not great....though you can redirect it back to a good attitude when PROMPTED! haha

You got all A's on your report card and 1 B.......well maybe it was 2 B's......I will have to look again....

I let you stay up late last night......11:15....and the snotty attitude resurfaced. It is doubtful I ever let you stay up late again.

still love you though.....this is the start of our weekend.

and I am glad you slept through feeling anything from the earthquake...

mommy
XOXOX

Friday, April 18, 2008

Dear Noah......school dance......




Back in March the week we had the blizzard your school had scheduled a 3rd grade dance for a Friday night but because of the blizzard....the dance was canceled and they rescheduled it for TONIGHT.

You have mentioned a few times about the dance coming up..but never told me you might want to go to it. In fact I wondered what you would do if you did go because I did not think you would want to dance......I did not know if you could be OKAY on your own by yourself at a dance.....so many unknowns. I guess I forget to think you are at that age where doing things like that ...hanging with your friends even if you don't dance.....might appeal to you. I am sure you heard the kids talking about it at school today.

Somehow I found myself slipping back into the old ways of thinking when we always tried to avoid social settings such as those because your behavior was too unpredictable and you could lose it at the drop of a hat ...if someone looked at your wrong......or said something you did not like.....ANY number of things could set you off.....so it was easier to just not expose you to many social situations and added stress.

I found out today when I picked you up from school however when your parapro told me you apparently had wanted to go to the dance. I guess at lunch time you were looking really sad and depressed and was really bummed out so she asked you what was wrong. You told her "I don't have a date for the dance tonight!" And your parapro told you you did not have to have a date...you could come by yourself......but it was a pre-sale dance and the tickets had to be bought in advance and since you never told ME I never sent any money and hence you ended up with NO ticket. (The tickets came with a glow stick.......so at first we thought you might have wanted to go to the dance just to get the glow stick ticket. BUT it was not the glow stick you were interested in. You had wanted to go to the dance).

SO you got very upset to realize you were not even going to get to go to the dance.

I then found out you had a girl already in mind to ASK to the dance.....the one you have seen on the playground carrying HER Sonic plushie doll around. You zoomed in on her the first time you noticed her out on the playground with the Sonic toy (also your favorite). SO I guess you told your parapro you had wanted to ask her to go to the dance with you.....and when I asked what you were going to do there you said "DANCE!" I asked what kind of dances.....and you said "there are no set dances to dance......I would do whatever I felt like......all custom dances!"

I feel horrible. Horrible because you will miss out on this experience which is a HUGE milestone for you.....to even want to go! I know there will be other dances...and I doubt you will ever have any problems asking a girl to go with you.

BUT then I worry and wonder. Would she say yes? Would you dance silly and like a child much younger than your stated age (sort of like the kids on Romper Room) and other kids make fun of you? You are so carefree and oblivious to these things so I doubt even if they did mock you....that it would bother you or you would even be aware of it. But that is upsetting in a way too for me. I never want you to be afraid to just relax and be who you are. I am not wanting you to try to be someone you are not or like everyone else. It is good to be different! BUT I also know other kids can be cruel....and you are rapidly approaching the age where your differences will likely start becoming a lot more noticeable.....and some kids might try to torment you. That is something I wish to avoid for your sake.

You must tell me ahead of time when you want to do something like this....so I can contact the school and make sure someone will be there to help monitor you through this SOCIAL setting....because that is an area where you need the most help. I cannot just drop you off to fend for yourself.....someone would have to monitor you and this was kids only (with a few teacher/chaperones).

In the end the parapro and your teacher made special arrangements for your resource room class to have a BIG DANCE/PARTY after all the state testing is completed next week. This you are excited about now. It will give you a chance to be with the other kids in a dance-like setting monitored by your parapro and teacher. So that is good. However, you have already mentioned you want that little girl to also be there but I told you she probably would not because she was not in your class and this was just for your class. So you are disappointed all over again.

I then asked you if you had ever spoken to her on the playground. You said no. SO I told you one day next week to go up to her at recess and say "Hello, my name is Noah and I see you have a Sonic plushie! I love Sonic the Hedgehog too and I also have a lot of the plushies!" AND from there to just get to know her and play in a general way with her IF she wants to. You are wanting to play with her SONIC toy but I told you she may not want to share it and if not.....that WAS OKAY! AND to NOT grab it from her and take off with it. SO many things to go over. I hope you can make this new friend. I know most of the girls seem to love you and you them.....so hopefully it will go well.

I know you have made some friends this year in school and I am happy for you about that. I love you very much Noah.....I am sorry you missed this dance.

Mommy
XOXOX

Thursday, April 17, 2008

Dear Noah....physical therapy evaluation....

We stopped by tonight after school to the hospital's rehab center to see about getting you physical therapy finally since they now accept our insurance plan.  The physical therapist agreed you could use some therapy.   You also need some new or revised orthotics.  Your feet fall in so badly when you stand....that your leg (especially the right one) is also getting thrown off and toward the inside at an angle.....so all those muscles have to work twice as hard all the time to try to compensate...hence one of the biggest reasons you become so exhausted so quickly and have pain in your legs and feet.   Your legs are being thrown all out of whack...and the orthotics do not seem to be correcting your stance like they did before.....so it is time for a new pair or some adjustments.  This will be yet another process but we will tackle it.

Meanwhile when you got out of the tub......you turned around and saw some soap suds on the side and said to me "Mom, that looks like SPAIN!"

I am not sure how many 9-year-old kids even know about Spain let alone what it looks like...the shape of the country.   You can be so funny sometimes.

Not much new here really.  Still working on getting my parental attachment added to the IEP.  Nothing back on that yet.  Either the principal is working on it or they are hoping I forget.  I think they know by now however I would not forget something like that.  We have another IEP meeting coming  up in May ....one for next year.  So maybe we will discuss all of those things then.

Tonight we stopped by to see grandma C.  You did some puzzles with her.  Next week is the big state assessment tests you kids have to take all week long.  I don't remember taking tests like that for the entire week when we were in school in your grade but maybe we did and I just don't remember it. 

Anyway......I love you very much and can't stop rubbing your head!

P1080979

Mommy

XOXOX

Tuesday, April 15, 2008

Dear Noah....you finally let me take the pumpkins outside.....

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Yes.......here they are. Finally back outside.....where they probably should have been a long time ago. We have had these 2 pumpkins in our home since last fall but anytime I suggested taking them outside to let nature take its course Noah you had a fit. Especially with the little pumpkin which was yours in your room.

Finally a couple of days ago the big pumpkin started leaking on the floor and I announced the day had officially arrived to take them outside. You still did not want to let your little one go......but I said it was best....it had small holes in it and was probably drying up inside or would disintegrate soon. (hey maybe not....it is still fine outside).

Anyway....you agreed to let me take them out to the backyard and told me this year you would get another one........and then on January 1, 2009 you would let me take it outside so we did not keep them as long the next time.

I guess time will tell.

I love you Noah.....very much. Feeling uneasy today about you at school....not sure why. I hope and pray it is for nothing....

Mommy
XOXOX

Monday, April 14, 2008

Dear Noah: IEP meeting, hair cut, and more...

Well it's been a good week or more since I posted.

We went to the Saturn dealer on Monday to get my VUE checked and fixed. I had an O2 sensor that had gone out on it and needed to be replaced. You went with me and we spent the day together. I LOVE those days where we can take off and do things together. Here you are in the SKY at Saturn......you do look pretty good behind the wheel!

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I had your IEP meeting on Tuesday and was left with mixed feelings as usual. They brought the BIG SHOTS in for this meeting which I was prepared for....not sure if it was meant to try to intimidate me or just for their benefit to make sure things stayed cool and calm.....or maybe both. I am left wondering if this is the very best choice I could make for you at this time. While I know there have been many benefits....I see some areas that are really lacking too...and of course any mention of HOMESCHOOLING the principal immediately dismissed not wanting to hear it. I gently reminded her that I was the one who would decide what was best for YOU......it did not matter what they might want or even myself....it is what will be best for you. SO lots to think about .....but we are going to see how you do the rest of this year. I am hopeful you will be just fine and of course they all think the only reason you had such a hard time that one week at school was solely due to you not feeling well. NOT because you might have oh let's say "autism" which the biggest characteristic is the improper social skills or lack thereof.....your biggest issue recently at school at least. Most everywhere else you are doing much better. In school this past week you did very well again too. SO who knows. (the meeting started late...no surprise to me......BUT the teachers DID stay till almost 5:30 to finish up.....so that was over 90 minutes!)

You spent Saturday night at your Aunt Melissa's house to be with cousin Audrey. I decided to cut your hair before you went because it was getting very long. I bought some clippers at K-Mart and decided I would be able to trim or cut your hair the way you like it now if needed. Your aunt who normally does it has cancer and is not always feeling up to it now and we cannot always make it down to where she can cut it......so this worked out well. Here is your hair now:

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and you with your SONIC video.....

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You had a good time at Aunt Melissa's house......but I think exhausted her......so it may be a long time before you can spend the night again!

We stopped by grandma C's. house on the way home from Melissa's house where you headed for the sofa and slept for 2 HOURS! SO grandma C. and I visited while you and Opie slept. Yes.....we took Opie along also. He slept in his big cat carrier cage thing while you napped on the sofa.

This past week has been a whirlwind of emotions and semi-drama and fighting still to get you things you need. What seems to be happening now with you in school is weird. On one hand the teachers are all noticing that you just seem to FIT IN SO well with everyone else......that I think they also along the way because of this.......FORGET you have TRUE DIAGNOSES and needs.......and I think they just look for other everyday normal-kid reasons and explanations for why you do what you do sometimes that is a bit "off" from the norm. I don't know how many times I had to remind them that YES you have made HUGE progress and are doing very well....but you will ALWAYS HAVE AUTISM.........you can improve and learn to COPE in our world and live in our world so well no one will easily be able to tell there is anything different with you.........HOWEVER.......that does not mean you still learn in a DIFFERENT way and PROCESS things differently and have huge EDUCATIONAL NEEDS because of that. They cannot always just expect to swoop you into the same mix along with everyone else because I am afraid you will get lost in that mix.

So anyway.........you got all A's on your report card again this quarter........except for 1.....a B+ in that....I think the Language Arts....and I am not really sure why you got the B+. This quarter in that area you are starting out with an A......I think it has a lot to do with UNDERSTANDING the abstract......INFERENCE questions that are going along with your reading.

The STATE testing is coming up.....and you are required to take it along with everyone else.......and some allowances have been made for you to use a scribe if needed for the long answered questions......and for you to do some things verbally........and for someone to explain some of the questions to you.......

MY parental attachment I made for the IEP meeting that I wanted to be ATTACHED to your amended IEP paperwork so it would become part of the OFFICIAL documentation......of course did not GET placed with the IEP paperwork and addressed as part of the official documentation. When I pressed the principal about this....she told me she had never heard of such a thing?! WOW....I was stunned. Parental attachments are pretty commonplace I thought...and a great tool for parents to use in regards to IEP and expressing YOUR concerns to the school and staff. ...because they are required by LAW then to reject or accept your requests and state WHY on official paperwork documentation......which is something you want to have!

ENOUGH of this......this all exhausts me. I love you so very much Noah.......

you are going to be just fine!

Love

Mommy
XOXOXO

Friday, April 04, 2008

Dear Noah....you do very well.....but then slip up......


Well you said the F-word on the playground the other day at recess. Apparently you and your best friend Travis wanted to play with a ball another kid had.....but they said NO........which you called IMproper English....and then you got so frustrated and upset because they were not sharing the ball.....you told me you called them F--king idiots! You told me that night you almost forgot but that you would have INDOOR recess for FOUR days because you said the F-word on the playground to another student. I thought that seemed a little harsh and you acted funny....

Well today I found out why. I got an e-mail from the principal that told me you also tried to CHOKE the boy while you were calling him a F--king idiot! You left out that part in your story to me last night. I had you demonstrate on me what you did to the boy so I would know and while it was not actually choking it was enough pressure with your hands being pushed against my throat to make it hard for even me to breathe.

sigh........

The principal and aides worked with you and the boys to go over what was wrong about the scenario and what to do next time round. They do not give up on you and I must admit that does impress me.

so........our IEP meeting is next Tuesday. The teachers and staff at the school are working very well with you and to be honest I am amazed they have not mentioned tossing you out but instead are adamant about keeping you IN and helping you. This is new for me to hear because in Colorado they were all too quick to toss you aside in the public schools there.

However I also must pay attention to you and your needs no matter what I or the school might think and if you need a break from the public classroom or partial days or adjustments made.....so you can handle it better and receive more work on behavior and social skills......I MUST do whatever I can to help you. If it means yanking you again from public school I would do it...but we are so close to finishing this year I would really like you to succeed and finish the year out. You have made amazing progress....and are doing so well. A lot will depend on how you respond from here on out. I want you to learn right and wrong and what is and is not appropriate behavior but not at the expense of another child.

I am tired. I have had 2 online friends pass away in less than 2 months. I have work and then I don't have work. Seems all I do is sit here and try to work .....I am on call for work all the time....that is not right. And now I sound like I am complaining when I am not......I am thankful for all we do have. Your grandpa is home from the hospital too so that is good news.

So......with that being said...goodnight Noah. I love you.......but we have lots of work to do!

Mommy
XOXOXOX

Tuesday, April 01, 2008

Dear Noah.........your trip to the ER last night...

About 11:30 you flung open your bedroom door and was crying....I came running out asking what was wrong. You said you had really bad stomach pains......and could not stand up.....could not sleep. I grabbed a bucket asking you if you thought you were going to get sick. You said you did not think so. I said maybe since you ate more than usual yesterday you just needed to go to the bathroom and once you had a bowel movement you would feel better. You had already gone a couple of times earlier in the day and said you did not have to go again. You cried and cried saying you should never have eaten FOUR breadsticks at Fazoli's yesterday for lunch with your entire bowl of spaghetti...and then a piece and a half of pizza for supper. I asked if you could try standing up but you could not. You had to pee but could not get to the toilet. I had to carry you in a squatted/semi-seated position to the toilet and sit you on the toilet. You peed. Then fell back down to the floor. I told you we needed to take you to the hospital to find out what was going on inside your tummy area. You were so upset about this prospect. I sat on the floor talking with you, explaining what was going to happen and how and why. I told you I would carry you to the truck and take you to the hospital but if I could not get you in the truck in a comfortable position we needed to call 911 to have the ambulance come and take you.

I then prepared you for that since I tried to get you to the front room and you were screaming in pain. I told you to think of this as a big adventure.....and not every kid got to ride in the back of an ambulance. That this was only for the MOMENT and once these moments passed you would not remain in pain or in this state forever.

SO I called 911 and explained NOAH to the staff there and told them to NOT have the sirens and lights going (though you said maybe the strobes on would be okay). When the 3 paramedics got there they found you at the end of the hallway in a fetal position on your hands and knees.....bent way over........not able to get up.....not able to move. So the man just picked you up in that position and carried you to the cot. They strapped you in and wheeled you out.....I grabbed your shoes and jacket and got in the truck to go to the hospital. I reassured you everything would be fine and I would be right there.

Well I BEAT the ambulance to the hospital ....even though I had to drive super slow behind this other car and then it poured down rain. I registered you and was ready to go back to see you about the time the ambulance finally arrived with you. Not sure what took them so long. The doctor examined you......took an x-ray of your abdomen.....and you had stool all the way from your rectum to your stomach. No wonder you were in pain. They gave you a Fleets enema which you also handled better than most adults.....not even acting like anyone was doing anything to you.......you were able to go to the restroom once there and started to feel much better. Then once more at home......

sigh......

We finally got home around 2:00 a.m. this morning. You were excused from school again today. And finally even though this was hard and difficult for you or me....you handled it all so very well. You retained control and stayed calm. You allowed things to be done to you that in the past would have had you screaming and in fits.

I am using this situation to finally...FINALLY....did I say F-I-N-A-L-L-Y get you to EAT BETTER and healthier foods. I explained the importance of food as fuel for your body and how you NEEDED to eat some real fruits and vegetables and drink more water and exercise with me and take walks with me and today...for the first time in your entire life.......you were willing to try new foods and taste and actually even EAT some new things. You have not eaten any vegetables since you were a baby....unless one would call Ore-Ida frozen potato hashbrowns or fries a veggie. You do NOT eat any real fruit. You drink apple juice or orange juice but that is about as close as you will get to real fruit.

Today....you ate some apple slices and tasted a piece of a banana and ate some more apple slices and carrot sticks and even some LETTUCE (which you said had no taste really whatsoever and of course it doesn't)....and you drank lots of water and ate shredded wheat for breakfast and had some GRILLED chicken for lunch WITH marinade which you loved.....

I am thankful to GOD for actually allowing this experience to happen to you...to us......so we can move you past unhealthy eating into healthier eating and taking care of your body and self and life.

I love you Noah.......and am so thankful you are feeling back to yourself...even before we left the hospital while in the bathroom you started giving me the low down on the toilet.

I love you very much....even if you are full of shit (sorry.....had to say that!)

***Meanwhile please keep grandpa L. in your thoughts and prayers as he is still in the hospital with pneumonia and blocked heart arteries. AND our aunt....as her lung cancer has also spread to her brain now. ***

Mommy

XOXOX