Dear Noah

So.....now that I am off work it is so much more obvious how much additional cares you really need! Not that I did not know beforehand. I certainly did.

While your father is getting better with handling you....he still can set you off so easily. I can see how this kind of stress wears any family and relationship thin. I am NOT blaming you or the problems you have. BUT I do realize we either all have to pull together in this or we will hopelessly fall apart. We can become stronger through all this and understand each other better but it takes a tremendous amount of energy and input, which in turn is exhausting and makes our spirits a bit sad and frustrated at times. MOST of the time I guess.

You are making tremendous progress in many areas. You had so much fun at occupational therapy the other day and your therapist was FANTASTIC! ALL you have talked about is "WHEN" you will get to go back. I am SO thankful the therapy is something you enjoy and I WISH there were some way we could sell this condo so we could buy a bigger house in order to make a room of your very own like that therapy room, but in your own home! YOU NEED a room like that. I think any kid would like a room like that. BUT YOU NEED IT! You literally seek so much physical input from your surroundings and environment. It is exhausting and overwhelming to just be exposed to it from our viewpoint. Daddy cannot always handle it and is constantly telling you to STOP running up and down the hall, or body slamming on the sofa or bed or into a wall, while I have mastered the ability to finally "tune it out". I imagine we are an odd site from the outside looking in. If someone were to drive by or look down on us from above they would see a WILD CHILD at least for portions of the day with a MOMMY who is SITTING there allowing you to be that way. While Daddy thinks you need to be taught how to NOT do this....I FULLY understand that you currently physically and physiologically NEED to do those things just to GET BY in our world. SO I let you be. I let you bounce happily on the sofa, though I will set a time limit or give you a number of times you can do it. I will let you run up and down the hallway. BUT again with a time limit. I even let you body slam things but again within reason.

The sounds again have been incredible. I DO hope and pray you are not picking up on any of MY stress revolving around my job being phased out, etc. I am so overwhelmed lately with everything in my life and the WORLD around me I am sure I am a mess of nerves. I certainly don't want you to EVER suffer because of my quirkiness! BUT you have been NEEDING to make incredible vocalizations lately and sounds. Almost constant again. Sometimes deafening. You have also restarted twirling your hair with your hands till you get such big knots I have to cut them out. SO again we are encouraging you to use rubber banded things to twirl instead.

AND you have become obssessed with gas prices again. Of course right now everyone seems to be obssessed with the gas prices because of hurricane Katrina and all that mess and lack of gas, etc. BUT those were the final words out of your mouth last night before going to bed. You suddenly sat up and said "Mommy, you need to go get gas in the morning before it goes up 20 cents or more", "cause by Monday it could be up over 3.00 or 6.00 per gallon!" ALL said so full of animation too. THEN you suddenly laid back down and as if from sheer exhaustion yourself you promptly finally fell asleep.

My time, the few free moments of time I have only exist when you are asleep. I am not complaining. BUT this also means little time for me to actually sleep, or take proper care of myself or things around the house.

BUT...I WOULD NEVER trade you for the world! I LOVE you so very very much Noah my little angel boy....JUST AS YOU ARE!!!!!!!

Mommy

Noah's first Occupational Therapy visit

Today we took Noah for his first occupational therapy visit. It went very very well and he loved it. I was going to take my camera and take some pictures of the neat rooms and some video clips but I was also afraid she might not want me to do that and I wanted to get permission first. Seems someone should take pictures as I have checked online for pediatric physical or occupational therapy clinic rooms and I could not really find any. NOT LIKE these rooms anyway. Amazing rooms. EXACTLY the way I would make it if we had a basement or extra room and I could whip up a room for Noah at home.It is all padded on the floor....with HUGE tire swings hanging from the ceiling and everything is padded or soft. Noah got to use a rolling scooter board thing to slide down a ramp into soft padded blocks that tumbled down on him. He got to hang swing from ropes and jump on a trampoline. They have climbing walls...big huge bouncy balls and bins you can jump into that are filled with balls. Of course they do fine motor skills too...and he got to play some really neat games using putty and pegs....We were really impressed and he is so excited about going back again! I will take pictures and video clips next time to post!

Dear Noah:

Trying to find things you can eat from home has been tough. You always want something out from a restaurant. Last night at supper was a typical example. You wanted pizza.....but I said we were not ordering pizza...not from Dominos at least since we had a falling out the last time we tried placing an order! SO you bawled about that. Then you switched gears and started asking what things I could fix at home. I named off some. You said for me to fix MY CHICKEN and some crinkly french fries! WOW....this may be progress!

SO I made MY chicken and crinkly fries and you actually ate it! I think as you are getting older you are finding out you cannot be quite as picky and you are more willing now to branch out and try new things we already have here at home in the freezer, fridge or cupboards. WHICH IS GOOD...you cannot eat every meal out! Especially fast food! YUCK!

Otherwise....you also went to the restroom last night. You HAVE BEEN MAKING IT THERE IN PLENTY OF TIME which is GREAT! I come in to help you wipe however and there you are...perched on the seat like a little bird! FEET UP ON THE SEAT all hunched over! Like a bird on a perch! SO....I reminded you about sitting down on the seat. You tried it and said "I am trying to sit on the seat properly!" WOW..such big words you are using these days and your pronounciation is getting so much better!

SCHOOL officially starts for us again on Monday! I think you are excited. I know even Daddy is excited. Should be lots of fun. I DO need to hook up our new printer!

LOVE YOU SO MUCH!!!

Mommy

Dear Noah:

You and I both got fresh jugs of water to drink last night....filled with ice....and once in the room you said "let's make a toast!" SO we clinked our water jugs together and both drank and I said "to loving each other!"

You then said "That was a great toast!

"You are too sweet for words!

I LOVE YOU!

Mommy

Noah's Speech Language Evaluation

It is funny. Noah is so smart and yet there are many concepts he cannot grasp. Today at the speech language pathologist office:

For example...when asked "how are apples grapes alike?" he would say "cause they both have stems" instead of something like "they are both fruits". While his answer is correct it obviously was not the more obvious answer she was looking for. He thinks of things differently than we do.

When asked "how are red and yellow alike?" he would answer "you mix red and yellow to get orange and they are both paints"...instead of "they are both colors". Again he is correct but she was looking for what makes the items alike.

When asked "what makes 1 and 5 alike?" he would say "if you add 1 and 5 you get 6". Not "they are both numbers".

When asked "how are shoes and socks alike?" he would say "cause you have to put your sock on before you can put on your shoe" instead of saying "they both go on your feet".

When asked "how is a cup and glass alike?" he would not say "because they are both something you drink out of".

When asked to describe what an ocean was he proceeded to name all 5 oceans in the world. She asked him again to describe them and he said "they were like big ponds."

When asked to give answers on some questions he was trying to find the answers in the therapist's book. She told him to go ahead and look as the answer was not there. However....little did she know...in a matter of 2 seconds he DID find the answer and she started laughing and said "wow you are just too smart!" Apparently her book had the letters of the correct answers and in a group of let's say 4 objects Noah would have to find the correct object the woman was giving the word of. Just by glancing in her book over her shoulder and reading what was there he saw the answers quickly.

BUT prior to that he got in his mind since there would only be ONE CORRECT answer that he needed to look for the object that was different from the others would probably be the correct answer! Amazing.....and correct most instances but sometimes not as let's say when she asked him to show her the picture of a "vine" there were several close examples like leaves, flowers, vine and tree branch. This was a bit more confusing to him then as the objects were all too similar. However, he knows what vines are as if she would have asked "what does Tarzan swing by?" he would quickly have answered "VINES!". hahahah.

Anyway.....he found the letter to the correct answer for that one question so the therapist had to hide her book after that. He is pretty sly when it comes to getting correct answers on things and figuring out things.

SO concepts and how things are alike are difficult for Noah to verbalize....but he can show you very quickly how things are the same visually and his sequencing is off the charts as is his memory. AND while he knows an apple and a banana are both fruits he cannot TELL you that is what makes them alike. He does not get that at all!

He still has problems with articulation and with "s", "sh", "f", "th", "ch", "r", "j", "l" and blends. So this places him in the moderate to severe delay range.

His language comprehension is average range. His fluency/voice is normal.

His language expression where he had to "organize his thoughts" and use syntax is in the moderate to severe delay range.

SO many of the things he had issues with 3 years ago when he was evaluated by this same speech language pathologist, he still has not made much improvement on. When asked to slow down and really be more definitive with his talking he does better. He can say his "s" very very well now without prompting but combining it with other letters like SH is hard for him. OR he will use S when he should be using a C.

The speech language pathologist understood 50-75% of what Noah said during conversation but it all depended on his articulation errors and speed he talked and how he will still add jargon in between when he does not know what words to insert to make a complete sentence. So odd as he can read very very well!

SO...he is scheduled to receive at least 20 individual therapy sessions. I have to make arrangements for that next. BUT that is a huge start and improvement when we originally were told he could receive NO speech therapy as he was over 5 years of age! SO we are thankful about this! She really feels he can sit long enough now to benefit from the therapy and we think he could too.

How Sunday went

(Rather than retype all this I just copied and pasted this from my other blog....but this is how your Sunday went today Noah-YOU DID GREAT!!)

Sunday afternoon/early evening. We DID make it to church today with NOAH!!! It was an odd morning. I managed to get him to go without too much of an episode. We left for church. Once there Noah sat down IN HIS seat and had his hands IN HIS LAP and he sat like he was drugged. He did not move, he did not jump up and twirl around like he will sometimes. He did not complain that we had to move up one row from our usual spot as someone else was sitting in our usual seats today. He did NOT say ONE word while in church. It looked like we had drugged him (WHICH WE DID NOT). SO odd.....I kept looking over to see if he was okay. I kept feeling his head to make sure he had no fever! He just acted totally different from his usual self.

SO he sat well for church...came time to leave...he got up and QUIETLY left the sanctuary. Made a pit stop to the restroom with daddy and then back out to the lobby to me and out to the car. Then he wanted to see some new homes today so we drove out and checked out 6 new model homes. Again he was extremely well behaved and quiet. Talked only when spoken to or asked a question and when he did talk he really impressed people. The woman at the model home could not believe how much REALTOR lingo Noah knew and said he seemed so mature and knowledgeable for his age about houses and lots and what was sold and what was available and the type of homes, etc. We tried to tell her this was one of his favorite past-times, looking at model homes and designing homes, etc. We ALL enjoy it.

Then he got hungry. He wanted Wendys. So we stopped. He was quiet again. Ate some. Another little boy came in and started gathering up all the salt and pepper shakers down an entire row of tables. We are talking a grand total of 14! His mom just sat there with her head in her hands like she had a migraine. She was waiting on her mom and dad I think to come over with Frostys.Anyway...Noah just sat there watching this kid move over from table to table (getting closer to our table) and taking away all of the salt and pepper shakers. I KNEW this was really upsetting Noah. Noah had already gathered the 6 shakers from our 3 tables and had them in front of HIM. Something about stacking these shakers that kids seem to like. We don't let Noah normally PLAY with the shakers and would never let him take 14 like this other kid did. SO NOah knows this is wrong. But he sat there...and you could tell it bothered him more and more and more. He looked at me and I explained to him that sometimes little kids don't always do what is right and how he knew that stacking 14 shakers was wrong and that he should set a good example and show the little kid what was the RIGHT thing to do and how to behave.

I was amazed Noah sat there. Silently watching....but you could tell it really bothered him. I was afraid he would lose it over this. BUT he seemed to be pretty calm and collected and my FEW words I said seemed to help somewhat. BUT he would not take his eyes off this kid. Keith said he acted like he was in a trance all day and he has. In the past when an issue like this would come up Noah WOULD LOSE IT. He would probably have pointed to the kid and screamed "STOP IT" and start crying...etc. OR go and grab the shakers back and put the correct 2 shakers per table. See Noah will even go around to tables in Wendys or Burger King and clean them up if they need it. He will straighten the shakers and put the chairs under the tables correctly and throw trash away..etc. He went through a spell where he was almost obsessed about this. FINALLY we told him he could only do a few tables right beside us and now most of the time he can get by without doing too many if any at all. Once in Arbys he went around and made sure all their napkin dispensers were set right in the middle of each table. Not too far left or too far right. JUST CENTERED. He was very particular!

SO today...he is watching this little boy. AND it finally happened. The boy had stacked 7 salt shakers high and 7 pepper shakers high and his mom was still sitting there with her head in her hands not really watching him. Noah just turned and looked at me and he then scrunched down in his seat and started crying...VERY VERY LOUD!!!!!!! No screaming and no pointing or yelling at the other kid or grabbing any shakers back..etc. I just held his head and quietly said to him " shhhh...quiet...listen to me." "You still have all 6 shakers here in front of you." "He did not come and get YOUR shakers." "You are fine....he should not be doing that with the shakers anyway and you know that." "It is fine....you still have 6 here in front of you."What would in the past have been a long-lived episode was thankfully pretty short lived. He cried oh maybe 3 minutes if that. About 3-5 loud loud cries and sobbing and he was done. He sat up and wiped his eyes. He kept watching this boy. Finally Noah then stacked his 3 salt shakers and his 3 pepper shakers and laughed. He would look at the other little boy and then laugh while they took turns at their own tables stacking the shakers.

BUT this is a good example of what I mean when I say you never quite know what to expect when around Noah or what MIGHT set him off. There is never any rhyme or reason though we can usually see them coming and can sometimes stop them before he explodes or totally loses it. Many times he will just start crying out loud like today and you have NO idea what happened to set him off and you think he has hurt himself by the way he sounds. I am really trying hard to teach him to stop himself before allowing himself to get too carried away like he would have done in the past.

SO we leave Wendys after we eat. Stop at Super Target. He again acted like he was drugged. VERY well behaved but like a zombie. Finally he had no more energy to even walk. Wanted Daddy to carry him. We got a second cart and Daddy let him ride inside the cart. It still worries me that he becomes so fatigued like that over nothing! Unless he got overwhelmed because of church this morning but he was alway drugged-like before church even started.

We are back home now. As soon as Noah got his shoes and orthotics off...he ran down the hall and acted like his usual self again. I keep asking if he feels okay. He does not look like he does but he says he is fine. Anyway....that was how our morning and afternoon went. I am now baking him a batch of chocolate chip cookies.

Tonight the last episode of The 4400 is on. Something about that show is interesting to me so I will watch it. THEN it won't be on again till next summer. I spent over 100.00 on groceries from Super Target. Oh well. It was my turn to buy so we stocked up. AND I am even going to make some Party Mix tonight since my sister was talking about making some it made me and Noah hungry for a batch. I am only going to put whole cashews in mine! YUMMMY!SIGHING.....Noah is waiting on cookies.

Keith left to meet his son for "a yet changed again" dinner date. Yes his son called again to change plans AGAIN! I guess he figured he wanted dinner after his roller blade hockey game and not just coffee and pie or cake. Noah and I are staying home. He has apparently had too much for him today and needs to take a break. If I were Keith.......but I am not. I am home however which is best for me if I think I may say something I shouldn't.

Well...cookies are ready to come out. AND I need to get the party mix in the cooled down oven!

I LOVE YOU NOAH!!

Dear Noah (what you said to me last night)

We laid down in bed to read some Bible stories....our usual routine. AND then you proceeded to tell me how we should have a bed of crosses. I said "What?" You said "a bed of dying crosses." You said, "Jesus laid down and died on the cross so we need a bed of crosses so we can lay down on the cross and die too."

I think I was too dumbfounded to speak so I lay there.

I thought some more. I said "well yes when you become a Christian the person you used to be does die or change and you will never be the same again." I also said "but you don't actually have to physically die on a cross to do that."

You then said "well a bed with pretend crosses not real ones, so we could lay down on them and go to sleep."

THEN you said "I am going to die this year in 2005 so I can be 6 forever!" (like you were all excited and knew something perhaps I did not). This of course tends to freak me out when you say things like this as you have before

I said "WHAT?????" (in alarm). You said "yeah, if I die now I would be 6 forever!!" (all excited). You said "I would go into the tomb (yes you said that) and rise up again like Jesus and I would go to Heaven and I would be like Jesus and live forever!"

I said " well you know you don't have to die NOW" , "if you died now mommy and daddy would miss you so much and we would not get to see you and you would not get to see us!" "You don't have to do something like that now!"

You then said "well I guess I could do that when I am older"; "like maybe 30 years old?"

AND I said "yes, it is something you can always do when you get older."

Then this morning you come out again and start in about having a "bed of dying crosses" so we could all go to bed and lay down on them at night and go to sleep and they would automatically be raised up!" I then proceeded to tell you Jesus just did not just "lay down on a cross and go to sleep", but that he suffered for a very long time and was in pain and misery while on that cross.

You just laid there and listened and smiled. You loves Jesus and the Bible and all those stories so much and just can't seem to get enough of them! You have this innate ability to just KNOW the stories and what happened and can relate and recite most so well when asked! It amazes me. I mean we do read Bible studies here at home and I read to you from your 2 Bibles every night and even during the day sometimes. We also have other Bible stories we work on....but you are most fascinated and obsessed with Jesus (which is fine with me). BUT almost to the extreme (which is part of your autism I am sure). SO you are wanting to be like Jesus (which is fine also but I mean you want to even die on a cross like Jesus did). I don't think you totally understand the concept of death yet and all that it entails! I know you do not.

**Another time at night when we were talking about death and how some children's parents on a movie we had watched had died and they said in the movie had gone to heaven, Noah started crying cause he was not in Heaven and he wondered "what about me??" He was bawling like crazy.

"What can I do to go to Heaven he asked me??" I then proceeded to tell him what the Bible says about that. Of course again he wanted to go RIGHT THEN!

So while he can explain characters from the Bible and who they were and what they did and what happened to them....he still cannot grasp "concepts" of things like "why", "death", "sleeping", "what is real and what is not", etc.

You live with no fear however which I guess should be the way we all should live. You are not afraid of death or dying though I don't think you totally understand it all. But then again perhaps you understand it better than we do?? You are probably to young yet to be too attached to things of this world including your own mommy and daddy. AND being autistic you always have a bit of aloofness about you even with us. It does not really bother you much to NOT be around us at times (most times!). So in your mind there is nothing you would be "giving up" to go to Heaven and live forever. In your mind you would "be gaining everything" by doing that and you would be happy, etc.

**I suppose that is how we should all feel if we are indeed a Christian! Ready to give anything and all up for Him to be and live with Him forever, whenever. It is not something that should make us sad but like Noah we should be happy about it when that time comes. Noah showed no signs of being in any distress at the thought (though he perhaps does not fully grasp what dying and leaving us would mean). Or maybe he does?

I am on leave of absence from work!

AND it has been great. I am off work officially till November 14th. FINALLY time to rest, recover, be an advocate full time for Noah, get things done around the house, just do all the things (MAINLY for Noah) that I have just not had time to do. Setting up all his therapies after all his evaluations can take immense time. AND doing the therapies here at home. Trying to find FUNDING for his therapies that our insurance will not cover is exhausting. Getting all the paperwork together and copied and printed off and in order and sent is time consuming. Working with him all the time on little things over and over and over and over and over till it is just so exhausting as he just doesn't always "get it".

SO...I put in for FMLA (family medical leave) and got it. I knew I would as my own doctor told me months ago I should take off work for awhile. SO.....it has been so odd not having tapes sitting around just waiting for me to work on or constantly reminding me they needed completed. WHAT A NEW concept for me to get up but then be able to lay back down and SLEEP IN! Today I slept in till 8:45 a.m.! THE LONGEST IN YEARS I have been able to do that! TO KNOW I do NOT have ANY WORK WORK to do has been so WELCOME!!! I can take time to read. Watch a movie. JUST REST!

AND it could not have come at a better time. Noah has regressed a bit in some areas so we will really have to work hard on those areas to bring him back up to where he had been. For example just getting him dressed every morning is a chore. AND having him brush his teeth or hair. Having him bath at least 1-2 times per week is another huge episode. AND now for some reason he is not wanting to POOP in the toilet again. He tries to hold it and hold it...saying he only wants to pee in the toilet. I have explained how the body works and he knows what he should do. However, getting him to do it and then consistently is a chore! NOW he does not completely soil his pants....but today it was a larger mess than it has been in a long long time. WHEN asked WHY (a concept he does not grasp at all)...he said he did not know. He cannot explain it other than to tell me he wants to keep playing his video games and record with his camera and apparently NOT stop!

SO....we worked on this today. When he soiled himself we got him cleaned up and then I said it was BATH TIME. He reluctantly cried but went in and we got that done...and his hair washed and trimmed afterwards and his toe nails trimmed. ALL chores as he has phobias or uneasiness around the hair dryer, toe nail trimmers, and apparently WATER now! We got that done and I told him we needed to make a "social story" ....about what he should do next time he was playing but had to go to the bathroom to "poop". I gave him a pad of art paper and some stickers and pencils and told him we needed to put down on the pad what he should do next time and then all the time. We found a picture of a computer and drew an arrow to the word POOP and then another arrow to a starting flag like they use on car races...(WHICH MEANS GO) and then an arrow to a toilet. He seemed to grasp all this pretty well and we went over it several times. We then hung it in his room by his computer.

(He just called out and said he made it in time. YEAH! He went to the bathroom and actually WENT IN the toilet!!)

AND Noah does not SIT on a toilet like most do. He PERCHES on it with his feet on the seat like a little bird. I am not sure WHY he does this but I have told him and told him to SIT DOWN on the seat and not PERCH. He could fall or his feet end up in the toilet. What a nightmare that could be especially if his feet got stuck! He only does this at home thank goodness but still! Yesterday we all went to the grocery store. While in the dairy section and getting Noah some Pillsbury chocolate chip cookies he went to the end of the aisle and looked in the reflective part of the shelf and SPIT! Keith and I just looked at each other in disbelief! We have never seen him do that before. We have heard from former teachers that he will spit and while we have seen him spit on occasion here at home we have never seen him do it in public or around other people. Here was a man at Safeway stocking the shelves and my little angel boy putting his mouth as close to the mirror reflection of him as he could get and SPITTING! Keith proceeded to get out his hankerchief (sp?) and wipe it off right away. Thank goodness the stock clerk did not see it. AND when asked WHY he did it Noah could not offer any explanation. He just does not understand WHY at all. Sometimes when he is scolded he will laugh or smile. He does not realize those are times you are to be sad or serious. ALL parts of autistic spectrum disorder and all things he will magically have to learn to be socially acceptable in our world!

I mean he also likes to go up and smell people. NOW he has to learn he just cannot go up and smell people! SO difficult to explain to someone who does not understand WHY he cannot or should not do something. AND while he cannot grasp simple social cues and skills this is a child who can design homes on our computer! He can figure out any computer software program there is. We do not have to offer any instructions. This is a child who can read very very well and loves it. This is a child with a great memory. OFF the charts memory! AND yet he cannot grasp social things like this at all. Constant repetition and directing and prompts. Every day...all throughout the day....over and over and over again.

AND on top of this is his not wanting to go anywhere or be around other people. I am hoping he is slowly getting over this a bit at least. He says it is too loud or too many people and too noisy and it really hurts his ears and bothers him. MANY times when he used to want to go places all the time...now he will say he wants to stay home. IF we can coax him in the car to go along...many times we then cannot get him OUT of the car to actually make it into a store. So...the time off right now...to try to rebuild and structure a routine for him will be good. AND home schooling is just around the corner!

Noah and I filming from the top roof of the hospital

Noah playing at this cool mall play area

Noah awhile back on a rare outing to the store

Dear Noah:

Also...not sure what is going on with you...but you are going through a THROWING stage. EVERYTHING you want to pick up and throw or toss into the air and FILM it with the camera. OR KNOCK things over and film it. THEN when you get into trouble you FILM that and when you replay it and watch it you almost laugh! This is where more social skills would really help you out! Meanwhile, sounds, noises, tossing things into the air, jumping on the bed or pillows and falling down endlessly till your face turns red, filming filming and more filming, makes up most of your days! I LOVE YOU!

Dear Noah:

Well....you have decided you wanted to start school again today. You said you changed your mind...and did not want to wait till August 29th. So we will do some today and see how it goes. You also said you were wanting more friends.....always makes me sad to hear that as there is really no one around here for you to play with. We will have to work on that. Well I have to get some things done and get your school stuff ready. More in a bit.

Dear Noah:

So......now it bothers you when we give you kisses. Well...you will give them and let us give them back to you..but you immediately proceed to WIPE THEM OFF! ONLY DRY kisses will do now..and even then you still wipe them off. Same with hugs. You will let us give them to you but are always kind of trying to pull away at the same time. You will let me hold you still but not for very long. You do still like to snuggle together in bed at night and cannot sleep alone. I cannot make new paragraphs in my posts for some reason so they will end up being very very long!

Now I can. Funny...I had to change to HTML mode. Probably will mess something up for good now.

Otherwise...things are going okay. You went with us to the sculpture show Saturday. You wore your orthotics all day long (at least 8 hours). We did a lot Saturday. BUT the day was a bit overwhelming to your senses so you basically have been recuperating for 2 days now.

You have been making up songs on your piano keyboard. SO amazing.

I will post more later. Much to write about, do and think about.

I LOVE YOU!

Mommy

So. You went to the Loveland sculpture show yesterday and walked around all morning in your new orthotics. THEN we left there and went to a park and you played. First time you have even wanted to go to a park. Then we left and went to Fazolis for lunch. Left there and drove the rest of the way back home and to another park for you to play. STILL with orthotics on! Then to Target. BACK HOME. Got the breakdown of the billing charges for the orthotics today. WOW. I figured altogether they would cost maybe a couple of hundred dollars. TRY all together including the fitting, almost $2000.00!!!!!! We were told our insurance covered them. They do. To a point. I think we will have to pay a couple of hundred dollars. WHICH IS better than the $2000.00 I guess. Just amazing how expensive things can be I guess. Alarm battery replaced. All is well. ALL working well. No fire thank the Lord!

Dear Noah:

Our bedroom smoke alarm just went off for some reason. I don't think it went off in the normal way...but also not like it would if the batteries were down...so not sure what is happening. I said there could be something going on in our attic and we would have to watch this and pay attention. You said: "Well we have not had time to pack up our stuff yet". I told you that in a real emergency you do not always have time to pack up your stuff. MANY times you just have to grab what you can IF you can and GO! I told you we needed to get dressed as we are still lounging around in our pjs. Which makes you think of all sorts of scenarios then huh? About "WHAT" would you grab if you had to? OR COULD? I have one bag packed up with some basic stuff but nothing personal. Just mostly paperwork to help us in case of an emergency. No photos or negatives or things like that. No collectibles..etc. I mean you can't pack up your entire house! So....I did not have the ladder handy but took my broom handle and hit the smoke alarm. I know I know...BAD IDEA...but I had to get the alarm to go off. No smoke. Nothing I could see in the attic. Maybe it is just the battery. I will have Keith check it in a bit. More later..

Dear Noah:

Tough few days. I think I have been saying that. BUT you have had them. I don't think anyone has any idea about how picky you are about your food. AND then how you can get stuck in a craze about something for a long period of time. For example, you went through a period where you would only eat the frozen chicken nuggets from the store. HAD to be Banquet and NO OTHER kind! YOU would eat any chicken nugget from any restaurant. NOW you ONLY want Burger King nuggets though you will eat them from KFC, Wendy's or Chick-Fil-A. Sometimes from a restaurant and sometimes not. You used to eat them from Applebees and now NOT. SO odd. BUT I try to get you to eat MY chicken nuggets/strips and you used to but now you won't. Yesterday I made chicken and you tried it. Said "mmmmmmmmm" , "this is good" and then brought your plate out a few minutes later saying you were done. You had only eaten a small portion of chicken...MAYBE 3 bites? AND only a couple of your French fries. I asked why you did not eat any more and you said "cause the chicken smells bad and the French fries are cold and need warmed up." I guess you let them sit so long they got cold.

You are so funny about the smells and textures of foods. AND it is not like we can just make you eat something. SO it sometimes is very difficult to find you things to eat! You do like pork chops so I will have to buy some more. BUT they have to be cooked in butter and not browned in any way. Little salt and little pepper. AND all fat cut off and removed. You will not eat it any other way or if it is too brown.

You used to eat toast with butter sometimes for breakfast. Now not. Same with cereals...you usually won't now. Same with pancakes unless they come from a restaurant. You will eat bacon only occasionally here at home though you will eat it in a restaurant. AND even Dominos Pizza, your favorite, you won't always eat now. VERY VERY trying times. Today you had leftover Chinese fried rice warmed up for breakfast. You really like that a lot.

AND as far as getting stuck on something. Most recently it has been using my digital camera/recorder and you have to have it with you all the time. You are constantly recording things. Constantly. You never tire of it. You want to take the camera everywhere. You can sit in your room all day and record yourself playing at the PC or doing things. Then you watch the clips over and over and over. It is unreal.

AND the sounds lately!! You have an infatigeable amount of sounds and sounds supply! It is constant. And while you do anything you have to make sounds! I try to limit you to only making the sounds in your room, and you do pretty well. Last night at 10:00 p.m. however you were still going strong. After I had been telling you for 2 hours it was "quiet time". Just exhausting. I am amazed you have any voice at all.

Home schooling will be starting soon and I think it will be good. You can get back into more of a routine again where you GET DRESSED every day and do things on a regular basis. Right now it is near impossible to even get you out of your pajamas every day (course I tend to want to do the same thing so I can't say too much). haha.

I love you my little man anyway! JUST AS YOU ARE!

Mommy

Dear Noah:

We made it to church yesterday! BUT you had a very difficult time....could not handle the sounds and kept saying it was too loud. It was a bit loud...but seems like the more often we go the more used to the sounds you become!

BUT you had a difficult time sitting still and handling the sounds. Otherwise you did pretty well all in all.

Came back home...and I made homemade ice cream which fascinated you as you watched the can spin around and around.

You are really into your Bible and Bible stories right now which I think is fabulous. I hung the Months of August and September words on your door today and now you are thinking you "changed your mind and want to start school TODAY!"

SO...we will see. I guess we could start it today if you like. Which reminds me I need to fill out that paperwork to home school you and SEND IT IN! YIKES!

LOVE YOU MUCH!!

Mommy

Dear Noah:

Okay...seems to be working on Netscape. Not sure what is happening with AOL!

Anyway...I had written about how when we were reading your Bible the other night you said you needed a new one...a blank one...one where you could write things in it. I asked what you would write about. You said "going to Heaven". I asked what you would say and you said "don't be afraid". I asked if you would say anything else and you said "no, that's all".

I then asked you if you wanted to write about anything else. You said "me dying on the cross". You are infatuated with Jesus and His dying on the cross so I think that is what you mean..but you may understand the concept of dying to self as well as you seem to just have an amazing knowledge of these things for someone so young!

Anyway...cooler here the past few days. Yesterday it remained inthe 50s all day long AND it rained! Today it is starting out cloudy and still a bit rainy. LOVE it. Reminds me of fall!

I LOVE YOU SWEETIE PIE! We sure had fun playing Candyland!

Mommy

Testing

Just seeing if this works yet as so far everything I post shows up blank

Testing as my posts are disappearing!

Dear Noah:

Dear Noah:

Wondering how in the world we will manage things if I end up with no job or income at all. Trying to think of things I could do to make money if I need to. SO many things to think about...on TOP of all the things we already have to think about.

I do believe God will provide as He always does Noah. However, my human side still has a hard time butting out of God's business and waiting on HIS perfect timing. Since I cannot see the whole picture and end result and since I am human, this means your mommy tends to worry sometimes. Not worry like I used to cause in the back of my mind I DO know things will be okay somehow. BUT...I have a hard time blocking things from my mind and not thinking about them sometimes!

Otherwise, you have had some trying times the past few days to week. The littlest thing can make you cry in frustation. Thank goodness it does not last too long....but some of the things you get upset about most would not understand. Sometimes I have a hard time understanding! BUT I think I "get you" pretty well now and I can understand where you are coming from in most cases.

The other night you decided to try sleeping in your own bed. While I know eventually that HAS to happen, I sure did miss you in my bed snuggling up with me! I also worried about you in your room and wondered if you were okay or if you would sneak out or what if someone came in and I did not hear them and tried taking you away and then of course all the MOMMY WORRIES started. I tried to think of you as a regular kid who would most likely some day LOVE to have a room to themselves and be alone in it! However, so far you have not really been that type and you seem to really enjoy being with me and Daddy which we love!

I have continued to let you sleep in our bed when you want as it is usually just me in it anyway when I go to bed as you daddy is not going to bed at that time. AND it is easier to KNOW exactly where you are at all times and not worry about you or wonder if you are out of your room or out the door or into something in another room or out on the balcony. Just easier to know you are right there safe beside me. Once Daddy comes to bed I then have to get up anyway....so it just seems okay to not push you out of the bed yet as you are so insecure about things. I suppose I am not helping that along (though I NEVER tell you things I worry about!)

We went to Super Target today and you wore your orthotics in your shoes. Then surprised me by saying you had to go play at the park after shopping. Course we had no time and it was too hot then and by the time we were done shopping your feet and legs were starting to hurt a bit. Not quite completely used to the orthotics! BUT while shopping in Target you cried a bit because I told you we would probably NOT have time to go play at the park and it would be too hot then.

You soon got over it. You found a new toy shopping cart to buy and have been playing with it since!

Warm again today. AND now windy....it may storm later which will be great if it does!

I LOVE YOU TO THE MOON AND BACK AGAIN!

Mommy

I often wonder what you think about. You can sometimes get so worked up over the slightest things. Like today at lunch you said "my ice cubes are bleeding" because the ice had the reflection of your red lid on your cup shining on them and they looked red. I imagine things seem so complex and busy to you....but then I am sure there are other things that are extremely easy and simple for you to understand.  

My Angel Boy......

Such a joy....such a challenge. Just got off the phone with his therapists..or possible ones. Seems insurance companies like Kaiser won't always PAY for different therapies for kids EVEN IF they NEED it if they are over 5 years of age. So...Noah will unfortunately be left out of many PAID therapies via our insurance company as he is 6 1/2 years old and he is over the age limit. THIS I do NOT understand. I am well over 5 years of age and yet if I needed speech therapy or physical therapy my insurance (THE SAME ONE) WOULD cover it. Because it is considered LONG-TERM it somehow changes things. I am a bit mad about all this and will have to definitely seek out other means....like completing the Colorado Medicaid waiver for Noah so he could get additional funds via that.

So many things he does not have to even think about now or worry about. I will do all that for him. BUT so frustrating for any parent to think that their insurance company will not cover and pay for certain things their child obviously needs. Noah will need speech therapy and occupational therapy long-term because of his autism and sensory integration issues. He will also need social skills training which I doubt our insurance will cover long-term either. A bit depressing...and sad. I feel bad for all the kids out there who are always denied coverage for needed medications and therapies while their parents on the same coverage ARE covered. Does NOT make any sense to me. AND I would gladly give up my portion of that coverage to be used for him instead if I could.

So basically we will end up being the therapists working with our son. We have dealt with the same problems in the public school setting, and in the physician setting all these years. The parents are the ones who truly end up being the TEACHERS for their children with autism and special needs. We will be the ones ending up working with Noah long-term on speech therapy or occupational therapy issues AND even the social skills issues. While I don't mind at all, I have to wonder what we are paying for when we pay for our insurance coverage?

Dear Noah:

Well Daddy decided to not take off for vacation the rest of the days this week. I had told him he may as well work and SAVE some of that time off as we were not going anywhere anyway. He is really needed at work right now because of having to hire some more people and do other things...and his new supervisor had even asked if he could come in today and tomorrow.

SO I told him he may as well....which he decided to do...which is okay to you because he then let you pick out for him the other days he would take off in the future. You picked a Wed, Thurs, and Friday in September and the day after Thanksgiving. NICE!

Nothing else much new today. I got up early and stayed up to work for a few hours but then decided to lay back down on the sofa to sleep. Your daddy asked me if I was feeling okay. Seems if I am sleeping cause I am tired (and don't get enough sleep) that everyone thinks I am sick or something.

Anyway......sounds like they are starting the weekly mowing here. I need to go and get some things done.

I LOVE YOU...you have been doing great!

Mommy

Dear Noah:

Daddy is on vacation the next few days. Hope you two will get along! School will be restarting for you soon. I think Friday we will go and pick up a school desk for you for home. Not sure WHERE we will be putting it but we will be bringing it home. We need to do some serious remodeling!

LOVE YOU

Mommy

Dear Noah

Well you have had some good days and some moments in time where you just cry over the silliest things (at least they seem silly to us). Everything can be so over dramatic to you and "life or death" to you.

You were watching the Santa's Toy Shop on QVC's Christmas in July yesterday and last night. You saw a few toys you felt you had to have. This in itself is new as you have never till now said you wanted anything you have seen on tv like most kids would. SO you saw several toys and kept me posted "they are still available", "I must have that", "I really want it", "hurry before they sell out" and then the inevitable "they sold out" and you would cry and cry and cry. I mean CRY! I finally explained to you that just because you saw something you liked would not always mean you would get it! While you understood that (I think) you still went on and on about things. I did well though and DID NOT purchase anything....even for myself!

Mommy may be without a job soon so better to start watching or money now! My job will either change but continue in some capacity, end, change but be completely different, or maybe I will end up working for someone else. SO many what ifs right now. NOT something you need to worry about.

You still don't understand "he", "I", "her", "she", etc. Very difficult for you as is common with autistic people. You can even look at a woman or girl and will call them he or him or think they are a boy. You still do not always recognize a boy from a girl, etc. You call yourself "me" all the time. We will definitely have to work on this in school this year.

HUM....what else is new? MUCH COOLER TEMPS! We had been 105 and 104 and 103 and all different degrees of 100! Today it will only be in the 70s MAYBE. Right now it is still 59 degrees! SO nice. I have the balcony door open and can do laundry without worrying about heating up the house!

Last night in bed you cried.....again......when you realized once again that you did not get any of the toys you liked before they sold out. EVERYTHING is forever with you. In your mind. LIFE AND DEATH FOREVER MOMENTS IN TIME! So overwhelming for you to handle. You cried about it no longer being 105! You wanted it to stay 105! On and on about the temperature then. I tried to reassure you that it was "OKAY" to have days of cooler temperatures! You are afraid your SUMMER is almost over I guess. On one hand you want cooler temps and rain and snow. On the other you want it hot and warm and sunny. Hard to keep up with you sometimes!

Right now you are going ballistic on the sofa. I AM allowing it. I wish I had an extra room I could pad and put mats down and blow up bouncy things in it for you to just have at it! That is truly what you need sometimes. I will set a time limit for this however!

Okay....stew in the crockpot. Honey corn muffins to go along with that to bake later. Of course you will not be eating any of this.

I LOVE YOU!

Mommy

Dear Noah:

Well I got you to make it to church today even though you did not want to go. You were excited once there. Ran to our row. Stopped dead in your tracks when you saw a man sitting one seat beside where you normally sit. You started crying and freaking out. We calmed you down and told you it was OKAY to be different and have someone else sitting in that row too. Daddy took you to the restroom. You came back okay...but still wanted to move.

Meanwhile while you were in the restroom I proceeded to explain to this man in the row all about you. This man we know from church. He has cancer and today was on oxygen. I felt bad. I did not want him to think it was because of HIM. I explained about you having autism and having to have things "just so" or it would upset you. I also explained how I felt you needed to learn how to make these adjustments however....but that if we had to still move into a different row it would NOT be because of him. AND of course he seemed to truly understand it all and was trying to reassure me! He seems to have such strong faith and endurance!

You came back from the restroom. You had to move to another row so we moved 2 rows up! Pretty much in the front row! You did pretty well. Sang the praise and worship songs. Sat well till toward the end and you got pretty antsy.

You even got your own shoes on INCLUDING orthotics today. Talk about making progress!

I LOVE YOU

Mommy

Dear Noah:

You just walked through asking what smelled so good. I have turkey in the crockpot and you went on and on about how good it smelled. It does. It reminds me of Thanksgiving!

We are going to go to church today. Or that is the plan. We will see if we all make it there!

You were off the walls yesterday Noah. You had an extremely difficult time listening or sitting still for anything. Constant movement. Constant tumbling and tossing yourself into the walls or doing somersaults.

We went to bed earlier last night. Hopefully that will help some today. We will see. Sometimes it does and sometimes it makes no difference at all.

My other PC monitor is buzzing. So annoying. Hard on the ears.

I will write more later.

I love you

Mommy

Dear Noah:

Last night we had very very low water pressure for some reason. SO...when you would turn on the faucet water barely trickled out. Which meant when you flushed the toilet it took forever to fill back up. You came to bed and started crying saying the toilet was broken again and not working cause you flushed it but it was "still running" cause you "could hear it" and this was over the 2 fans running in the bedroom AND the AC! SO I got up and investigated and that is when I found out about the water pressure.

Anyway...it is better this morning. Not quite back to full pressure but much better. Hopefully it WILL get back to full pressure soon. Not sure what caused it.

I also found out yesterday after seeing some suspicious marks on my digital camera/recorder I have been letting you use....that you have apparently been BITING it sometimes. You now have a phrase you spurt out "I'm sorry mommy!" over and over when you have done things wrong. I could not believe you would even think about biting the camera! BUT apparently you have. There were several small nicks in it where you said you have tried biting it. You also admitted to banging it in frustration sometimes on your desk in your room...another NO NO!

When I get things I keep them looking new forever. I am probably weird that way. I got a new digital camera/recorder so I figured you could use this one...as you love to record so much. You always take such good care of things normally so I figured there were no worries about you NOT doing so. I have explained to you time and time again WHY you need to take care of things. I have only had that camera since right before last Christmas so it is only about 8 months old. If it were only me using it ....it would still look brand new and last forever probably. I am not sure how long it will last for you or if it could last forever! You are certainly putting it through a test. Part of me feels like I should take it away from you....but then I got it to USE it which you most certainly are doing. I guess I personally don't have to have 2 camera recorders...so you could continue using that one.

So we reviewed rules last night. I keep asking if you are following those rules and you said you were trying. I asked what that meant and you said you had banged it a couple of times again! I said NO more banging!

Poor camera..it is a wonder it has held up so far. I told you this is not a toy.....and if you did not take care of it....and it broke...that would be the END of you recording anything ever! I will not be letting you use this new one I bought. I guess I have so many cameras and keep them all and use them all as there is something I like about each one that is a bit different than the other. The one you are currently using is pretty nice and convenient to use...has great sound...takes great video...but I think the pics have a lot to be desired. SO it turned out to be used for us only for video! I believe the new one will be great for video too...and the sound will be fine though it is hard to hear it back on the camera....and it takes fantastic pictures!

SO yes...your mother is a bit obessessed! I had no idea when I got the first camera/recorder it would be used on a DAILY ALL DAY basis. I only intended it to be used occasionally to capture unique moments in time with you! hahaha. Well.. I guess we have a bunch of moments in time captured now...though now we don't always save all the clips you record.

I am going to get some work done.

I LOVE YOU MUCH!

Mommy

Dear Noah:

WOW you did FABULOUS today! I mean FABULOUS! We decided to go out for lunch. You asked about wearing your orthotics on your own! I have been telling you every day and night before going to sleep how by wearing them your feet and ankles will get stronger and your legs will get stronger and YOU will feel better and get stronger. You are very in to trying them now.

SO you asked...and I decided to let you test them out today! We got things all situated and on. You walked around. We told you how great you looked and that they made you a little taller. You were excited. AND more excited thinking you were instantly stronger...so you went around displaying your strength by moving heavy things to other areas in the house!

We left and went out to eat. Took about 2 hours total to drive over, eat and come back. You had the shoes and orthotics on the ENTIRE TWO HOURS! Back home I had you run in them. You did great Noah!

It was amazing to Daddy and me how your feet and ankles and legs were all instantly put into proper stance and position just by wearing those things! Just incredible! No fallen arches...no knees in, no poor stance and holding yourself funny or walking odd. It was amazing. I asked if it made your feet and legs feel better and you said yes!

Back home we took them off. You are now once again barefoot as am I! BUT we are so very proud of you today and happy you gave these such a very good first try!

I love you so much!

Mommy

Dear Noah:

Well you did pretty well today when we ran over to pick up your orthotics. The woman tried putting the right one on your left foot which really apparently hurt your foot as you screamed and cried. She realized what she had done wrong and then corrected it. While you put them on and stood in them....you were very happy to yank them off. She trimmed them down a bit. We will have to get about 1/2 size larger shoe probably to allow a little more room for you in your shoes now. BUT....I am hopeful we can work you up to wearing these eventually....little bits of time gradually working up to longer periods of time. I explained last night that you would NOT have to wear them forever...and that they would make your legs/feet/ankles stronger so your legs would not hurt so bad when you rode your bike and just played. You are at least OPEN to the possibility of wearing them.

You chose a pattern called TORPEDO...kind of a rainbow swirl effect:

50th Anniversary Movie removed .....see why below

I had to take the movie post off here as it moved my Profile of Noah down to the bottom of the page as the movie hung out too far on the sides and went into the profile. SO....if you want to see the movie it will still be posted at www.takeaslowbreath.blogspot.com awhile....unless I find it did the same thing there. THEN I may have to remove it altogether. I did not even realize it had messed up the profile and things on the right side of my page till today when I checked it out. SO...rather than try to figure it all out and rearrange things as my post would eventually go away and not be seen anyway unless you dug for it..I just removed it.

Dear Noah:

Well I found out that our Kaiser insurance approved 12 whole visits for you for physical therapy or occupational therapy. SO...we will most likely use it all for occupational therapy since that is your greatest need right now. We go pick up the orthotics on Wednesday at 1:30 p.m. Hopefully those will resolve any physical therapy needs....IF WE CAN GET YOU TO WEAR THEM!

Now I have to find out the details about speech therapy and the social skills class.

Been a lazy summer the past month and a half. No school, no big demands you place on our time.....except on days when you just seem to bounce off the walls, furniture and floor. Sometimes those come in spurts and those days are exhausting for everyone. Other times like today, you find things to entertain yourself and I feel almost guilty for just letting you BE and play alone. Right now you are enjoying all these new books on CD I got you. You are in our room on the floor by the CD boombox having a great time. RECORDING YOURSELF all the white I might add. You cannot do anything without my digital recorder in hand!

We watched a television show last night called the Dead Zone. Don't normally watch it but we were watching The 4400 and it gave a preview for the Dead Zone and it was to have an autistic boy portrayed in it. While we would consider you more high functioning than the child on tv, there were many things that boy did on the show that you also do. It is weird cause I guess in the past we just denied these things...or maybe they have become more pronounced over time. I am not sure. BUT there are most definitely things you do that are so obvious now. Things like making sounds (squeals, screeching, etc.) or humming a song over and over and over while doing anything on paper, lining things up, not wanting to be touched sometimes, not wanting to be looked at sometimes, covering your ears and even screaming or crying because of certain sounds or loud noises, cowering and trying to comfort yourself after a meltdown episode, constant movement and I MEAN CONSTANT, etc. So...the show was interesting as that boy last night did many of those things too.

SO anyway....12 visits are better than none. AND it is a good start. If you don't do so well we can hopefully get more visits approved. Meanwhile I need to complete the paperwork gathering of information for the Colorado Medicaid Waiver. I wanted to have all the information to them by tomorrow. YEAH RIGHT. Hopefully by their next meeting date it will all be there.

You are really reading great. AND your comprehension has come so far! You are really improving with that which is good. I don't hear so many "I don't know" answers now. Now you offer really good ones and the CORRECT ONES!

I LOVE YOU

Mommy

Dear Noah:

Wondering if we will get you to church "today". I was thinking maybe we could go.....and then have lunch at Wendy's....and then pop in to check out the new Christmas ornaments at Hallmark.

So we will see. To be honest today I am tired and don't feel too much like going anywhere. We all need to get in sync. When one is great and up to going someone else isn't.

So the cycle continues.

Love you

Mommy

Dear Noah:

You have been having such a difficult time listening lately. You act like you do...sometimes you DO and sometimes you only listen and do what I think you really want to.

So....our days have been filled with me having to tell you over and over and over and over and OVER again the same things.

Lately you have HAD to do somersaults.....EVERYWHERE. You get on our sofa and have to somersault off the arm of the one end OVER AND OVER AND OVER AND OVER again. I have to tell you OVER AND OVER AND OVER again to NOT do that. I then think well I should tell you in a "positive" way and not the "negative way by using NOT". SO I try telling you in a positive way. Still won't work. I understand this is obviously something you MUST DO for many sensory reasons....but the poor sofa is about shot and it is only 3 years old!

SO we see you somersaulting down the hallway, on furniture, on the bed, on the floors in public places. It has become exhausting many times.

I am so stretched thin now. About the ONLY way I am stretched thin. I keep asking my boss for help. Supposedly that was a big problem I have had in the past she said on a prior review...NOT asking for help. Well a lot of good it does asking for help as I have asked now every year since she has made that remark...but still NO help for me really. I am overworked and stressed to much at work with work about work all work! I don't think I can take much more of it. Normally I can handle it but lately I can't seem to handle much of anything. And HEAVEN FREAKIN FORBID I say I need a break for once!

So....life goes on. You are still my angel boy. I still love you and always will.

Mommy

Dear Noah:

So...I forgot a few things on my earlier post. Lately you have had moments were you don't want anyone to "see" you. Today at Super Target you did not want ME to apparently see you. I looked and there you were walking with your body hugged up tight against Daddy's leg with your head practically up his butt.....(blinders for you I guess).....and it was because as you said "I don't want Mommy to see me". Not a "you can't see me" type of game. You honestly did not want me to see you! I guess you figured if you could not see me I also could not see you. SO you walked over half of Super Target like this....as for some reason you thought I would be staring or looking at you and you did not want that.

Same thing happened yesterday when you were on the floor playing trains with Daddy. No it was Sunday. Anyway....you wanted Daddy to sit on the floor where he could BLOCK your view of me...as again..."you did not want to see Mommy". You freaked if you thought I WAS looking at you.

You also freaked cause Daddy touched your train....you picked up the train and threw it at him.....and had a royal fit.

SO while you make some progress....you have moments of regression at the same time.

Almost time for bed now. You just got done playing in our closet recording yourself shredding some tissue paper you found in my wrapping paper stash! Yeah....you said you liked it cause it could fly all around and because of the sounds it made I guess.

SO hot. Still in the high 80s at 9:30 p.m. I am thankful for AC but when it is this warm out and we have skylights and face west...the condo can still get pretty warm in the front room. Funny how when it is warm...you start to count the days...each day by day....till cooler weather arrives. I am already ready for fall!

LOVE YOU!

Mommy

Dear Noah:

Well...you had a couple of trying days the past 2 days to say the least! The day before yesterday you had SEVERAL MAJOR MELTDOWNS.....sometimes simple things would set you off.....such as someone looking at you here at home or someone here touching you ...or walking past you. I mean you lost it and BIG TIME. You had many episodes of crying and screaming.....no wonder by yesterday you were ZONED out and very very subdued.

I have been getting you to bed earlier hoping that might help improve your behavior and emotional state. Sometimes it does and sometimes not. You always start the days out well. Today I decided to go to the mall to check out Carlton Cards Christmas Ornaments. I asked if you would like to go to the mall too....and then to Super Target. You ACTUALLY SAID YES! So we all went...to the mall first....stayed and you got lunch at Chick-Fil-A before the lunch crowd arrived. We left and then stopped at Super Target....but by the end of that you were more than ready to go! BUT all in all you did pretty well!

You are back home now.....and really zoning out. You immediately headed to your room to relax.....and are still relaxing. I am thankful you are finding ways to relax!

I am going to see if you will take a nap today but I doubt you will.

I love you.....think it is great you made it outside the home today! Even for a couple of hours! Especially when you originally had told me to go ahead on my own!

LOVE YOU MY LITTLE MAN!

Mommy

Dear Noah:

Oh brother. Daddy just sat down to play trains with you on the floor....He touched you...which made you go off! Of course he keeps saying "Melinda there is absolutely NO reason for him to act that way!" (Hello.....did you forget your child has autistic spectrum disorder????)

And then daddy turned right around and did this....he said " I only did this......(and he proceeded to TOUCH you again!) which of course made you scream even longer and LOUDER!

Then he proceeded to tell me how it was just not right that you acted that way.....and no reason for it. HELLO?? Autism...sensory integration disorder....BOTH of just those things can cause you to react exactly like you did because someone touches you or comes to close to something you are playing with.

I cannot seem to get daddy to understand this. We go through this same crap every day over and over and over. I am so tired of it. It is a wonder you even want to play with daddy but you do.

Hopefully it will click in his brain someday.

I love you...

Mommy

Dear Noah:

You started out having a great day. About mid afternoon things got rougher. Your daddy was part-time playing with you which made you get upset. Seemed every time you turned around Daddy would disappear and then you would have to go through the entire process of ASKING him to play with you again or to come back! This upset you. I am not sure why it seems so difficult for your daddy to sit and play with you long-term sometimes.

Anyway....things escalated. Daddy apparently touched one of your trains you were playing with...that was the last straw for you. You screamed and screamed and yelled and screamed and picked up the train and THREW it at daddy. BIG mistake but you did it anyway. You were trying to tell him in between about how him touching your train made you feel.....daddy of course was mad you hit him with the train....and once again MOMMY plays referee! I don't think I spelled that right.

So.....I finally got you calmed down and told you what you did wrong and what you should have done.....told you to apologize to daddy...and then you went to your room to "calm down" some more.

You finally did. Next thing I know at least 2 more episodes exactly like this happened. During one episode I heard something in our bedroom and then you making this horrible screaming/animal sound over and over again while you proceeded to slam my dresser drawer/doors open and closed. Again something daddy had done set you off. You went into your room as I told you to go there to calm down...and proceeded with the animal screaming sounds over and over....I do hope the neighbors cannot hear that as they probably wonder what is going on up here!

You came out looking completely exhausted and I asked you if you were having a rough day and you said yes. You came over and I held you and you just sat quietly and calmed down more.

I think and hope you will be fine now the rest of the night. I do hope we can go to church tomorrow together but if this is any indication I am already thinking it may not happen.

So in the end it was a typical day for us when Daddy is around you all the time....as for some reason he seems to push your buttons! Now we should sleep well tonight.

I love you my little man!

Mommy

Dear Noah:

You are having a good day today I think. BATH time later for SURE! No excuses today mylittle man!

Nothing new to write about today except I am still appalled that insurance companies (or at least ours) MAY not pay for OT and PT for you because you are over 5. I don't get that. If it is something you require I still don't see how age has anything to do with it!

HOT HOT HOT today!

Love you

Mommy

Dear Noah:

Well...I am finding more and more out about physical and occupational therapy for you. Apparently our insurance once you are over 5 years of age....may not even cover ANY PT or OT unless it affects your every day living skills. You do have some problems with that as far as occupational therapy goes....so you MAY qualify. BUT I am just going to figure on you NOT getting any additional therapies.

SO...hum. Where does that leave any kids who are 5 years of age or older and still require PT, OT or anything else? Seems like they are not doing something right if just because you are over 5 you cannot receive PT or OT. I am over 5 and I can receive it. It all has to do with your autistic spectrum disorder so you SHOULD be entitled to receive it.

Sounds like we may have a rough road ahead trying to get the therapies approved. Meanwhile we will keep working on things at home....as that may just be where you end up learning all these OT and PT therapy things anyway.

So frustrating. So happy you are too little to have to worry or wonder about these things.

ENJOY your sweet little life!

Mommy

The Children's Hospital....where Mommy works 

Denver Skyline at sunset...isn't it beautiful?? 

Dear Noah:

You actually did very well with your occupational evaluation yesterday. It lasted 90 minutes so we were wondering if you could handle it.

BUT you did and did very very well. The OT gave you many different things to do and try to see what you could or could not do such as buttoning shirts, using zippers and snaps, cutting with scissors, squeezing things with your hands and then just your fingers, etc. You really enjoyed being put to task! You even sat well for her.

After that visit we had to run over to Target to kill some time as we had another hour before your visit with the orthotist. I KNEW she probably had to make molds of your feet and was wondering how that was going to go. I had told you ahead of time that no one that day would do anything to "hurt you".

You did well even during that visit. They put this sock thing over your feet and ankle (one foot at a time) and then basically do like a cast over that. You got to help her hold this strip in place (which is later what she used to guide scissors to cut the cast thing off your foot without cutting into your skin).

You did well until you saw the scissors. You freaked a bit and cried a little but we kind of just kept working around you and talking to each other and you got through it. However, you did not want your second foot done. BUT you did it....crying SOFTLY the entire time but you DID IT.

All in all we were amazed and very proud of you and how you acted. However, you could tell you were in severe sensory overload mode by the time we went from there to lunch at CiCi's pizza. You looked very drugged and subdued. The clinic had a huge aquarium in the waiting room you sat beside and it really soothed and calmed you down. I would like to get one for home.

Anyway....you did well. Came home and played on the computer the rest of the afternoon into the night.

Now we wait on all the results, for the orthotics/braces to be made to wear over your socked feet and up your ankles...and for more referrals to continue with PT and OT. We are also still waiting on your referral for speech therapy.

I love you to the MOON and back again!!!!! FOREVER AND EVER AND EVER!!

Mommy

Dear Noah:

You have been having a harder time listening lately. I am exhausted.....and honestly don't feel like rehashing the entire weekend again.

Suffice to say we need to work on things. While you are making progress you are now starting to explore more and try things without asking first...which tends to get you into problems.

I LOVE you regardless!

Mommy

Dear Noah:

Today you got up all upset as it was after 8:00 a.m. and you wanted to be up by 7:00 a.m. or so. I mean you were really upset and you wanted to set the clocks all to say 7:00 a.m. (of if life were that simple!) haha. Anyway...I told you if it weren't for daylight savings time it WOULD still be 7:00 a.m. which seemed to pacify you somewhat. When you are like this I just try to get your mind onto something else pretty quickly.

SO you are now interested in your computer. Blogging is slow today. More later.

I LOVE YOU!

Mommy

Only 176 days left till Christmas!!

If you would like to see a great family movie....check out "Racing Stripes". We got it from our library and it was really really good! A great "family" movie!

Same with fireworks.....better safe than sorry!!

Okay...this is a big BBQ weekend. Remember to be safe so your grill doesn't end up looking like this!!

On the Picture Below of Noah on the Balcony

You will notice all his cars are lined up in rows....(characteristic of what kids with autism do). I never even paid attention to that or noticed it myself till I saw the picture posted...then I happened to notice Noah had not 1 or 2 but 3 rows of his cars lined up. I guess he does do that all the time. I just never paid any attention to it before.

Beautiful Colorado! 

Oh MOM....this is SO embarassing!! 

Snow in June! 

Noah sitting on the balcony 

My hanging pot of blue flowers...so pretty! 

My little man! 

Noah posing for me on his new bike