Friday, October 28, 2005

Dear Noah:

So you have had some problems falling asleep lately. I know sleep problems can be issues for autistics so I am hopeful this will not be an ongoing problem. Isn't it this weekend we set the clocks BACK one hour? That SHOULD help as when it used to be 10:30 it will be 9:30 and you should be MORE sleepy. You used to go to bed super early around 7:30 or even 8:00 or 8:30. Over time you moved to 9:00 and then 9:30 p.m. That used to be the cut off. Many times now you want to go to 9:45 p.m. and next thing we know it is actually 10:00 or after. AND then when we go to bed you can't fall asleep. Which means I DON'T GET ANY SLEEP you toss and turn and are lying there wide awake. And none of this seems to affect your body and waking hours. You are wide-eyed and raring to go the next morning. Full speed ahead for you...while I drag my sorry butt around like death warmed over!

SO I am back to making you be finished getting ready for bed by 9:30 p.m. again. IN THE BED time is no later than 9:45 p.m. So far that is working out...and story time is anywhere from 5-15 minutes. Then we go to sleep.

I wish we had a house with a yard or therapy/exercise room. Last night you did some movements on your own which unfortunately consisted of you running from the kitchen and jumping onto the arm of the soft sofa and doing a somersault or body slam onto the seats OR running from the kitchen and jumping on your little stool and then onto the sofa. You did this over and over and over. While I should NOT allow it cause of the sofa wear and tear I also KNOW YOU NEED to do this so I let you. I am glad I did as it did wear you down enough you were actually TIRED when you got done and you actually FELL ASLEEP when the lights were turned out last night. NEW CONCEPT!!

They say a good 15 to 20 minutes of running around and vigorous (and I MEAN VIGOROUS) exercise for autistic kids is great prior to going to bed or anytime you need to get them to sit down and sit still to focus on something. We have found it does work well. Problem is at 9:30 p.m. I can't let you go out and run around in the grass out here because you make a lot of loud sounds. Maybe if we had a house I could...but even then you might be too loud. That is where the exercise room could come in handy. I have a couple of times let you go out in the front yard here with me at night. You become WILD and free like any other kid and run around back and forth and crash into the ground and make your sounds over and over. A bit too loud I guess and repetitive. I can tune that out and not let it get to me but I know it would wear on someone else's nerves.

I am constantly reminding you that not everyone wants to hear you make those sounds and that when we are outside you can run around but you have to be more quiet. Would be great to have a place you could go and be as loud as you needed to be sometimes. That is one reason we love your occupational therapy so much. A safe place where you can be rowdy and loud all at the same time while actually HELPING yourself.

SO we really need to try to finish getting the condo ready to sell and getting a house. Not sure how we will do it as I am losing my full time job at the hospital. PLUS there are 15 or 16 other condos back here for sale. NOTHING seems to be selling quick around here. SO it could take some time. We are still moving stuff to storage to make more room for us here now to be more comfortable while here and that is great. I know God will provide and things will work out as they always have. We just can't see down that road yet to see HOW it will all happen.

Sometimes it would be nice to just be able to BUY what you need and not have to worry about things. I would not have to worry about trying to keep working to pay bills but could focus on you more than I am able to even now. It can all be so exhausting and time consuming and there never seems to be enough hours in the day. I think I would just about have to have a full-time staff of my own for my time to be freed up solely for you. I don't think anyone without an autistic child understands how time consuming your therapies and cares can be. I am not complaining...don't get me wrong. AND I have learned to budget my time pretty well. BUT we are trying to do several full time jobs in 24 hours and that is just impossible! We either need to let some things go and not worry about them as much or get additional help to do those things I guess that we don't have time to do. I am not too worried about that all now.

I cannot believe I have been off work already for almost 3 months. AND even while off on leave of absence it seems we never had enough time. Never had time to do all the things we should be doing and in the best way. We are slowly getting them done though.

So in a way sometimes thinking if we magically had a house of our own that we did not have to worry about paying for.....or a way to pay for our expenses so I could devote all my time to you and your cares and whatever else needed to be done without the worries too of having to get my hours in or lines typed.....would be a relief.

Back in my mind I know God will provide for us as HE always does. I believe this change will be for the best and good things will come to pass because of it.

Meanwhile I need to "keep you engaged" as much as I can. I know sometimes when you become engrossed in something for hours I LET you as I am so tired that actually offers me a break. BUT that is not right and I need to NOT do that at all. I come...ready or not!



Wednesday, October 26, 2005

Dear Noah:

I don't feel too well tonight so I will keep this short. I think my kidneys are acting up again. did great today at occupational therapy. We are going to try to get 11 more visits approved for you as you only have 3 left. HOPEFULLY we can. It is really helping you a lot. We will surely miss your therapist when we ever have to finally stop going. She would make a great babysitter and I would actually be able to TRUST her to watch you....not like that will ever happen though. BUT she is definitely the type of person needed to ever help out with you!

Fall is definitely in the air. Lots of changes all around with everything I think.

I am tired tonight so am thinking we will head to bed early!



Sunday, October 23, 2005

Dear Noah:

So we decided to go out to lunch after church today. Course all you want lately is fast food stuff. We decided on a regular restaurant but then realized after naming a few ideas that you don't really eat many places' food anymore. SO that rules out a lot of places to go.

At the last minute as everyone was hungry I suggested just picking up Chinese and BK for you and taking it home. You thought that was great. Daddy however wanted to eat out so we stopped at the Outback and ended up eating there. HAVE eaten their chicken strips in the past but today you were constantly holding your nose complaining about the smells of things.

They brought the loaf of hot bread out and you held your nose saying the bread smelled bad. Then they brought our food out and you complained about it's smell. You picked up one bite of your chicken and complained about the smell....and then started to cry and said you could not eat it anymore. You told me you thought we were going to Burger King. So Daddy and I finished our meals and we left. You had to be super hungry by then. We stopped and got you a kid's meal at BK and took it home for you to eat. Funny...they gave you the kid's meal toy which is a Halloween bucket this week. You picked it up and smelled it and said "mmmmmmmmm....that smells really good!" SO...I guess plastic smells better to you right now than some food.

I understand this is all part of your autism and sensory integration issues....but a bit concerned your sensitivities to certain food smells and tastes really limits your possible intake of food. Not like you are starving or anything. BUT...unless it is a fast food place...we only have a couple of other restaurants where you will still eat the food. Perkins, Fazolis, Dominos (no longer Pizza Hut), and Fuddruckers. Sometimes MAYBE Gunther Toodies or Cracker Barrel, or Village Inn or Old Chicago. No longer will you eat anything at Unos or Applebees. SO we get tired of fast food stuff so this means we will just be eating home more often which is fine with me as I prefer that!

I love you my little man. You did well in church again today!


Dear Noah:

You are so sweet. You were watching "Iron Chef America" on tv with Daddy and you decided you needed to go to Target tomorrow to get an Easy Bake Oven so you could cook and then Mommy and Daddy could "judge" YOUR food you made! So hilarious and cute!

You have been saying some really cute things lately. I wanted to write them all down and now my mind seems to have forgotten some of them. I know I will remember them again so I will be back and post them once I do!

You did lose it a couple of times recently. Once was last night prior to bed when Daddy had come into the bathroom while you were using the toilet to get ready for bed. Apparently he wiped the seat off with toilet paper for some reason and then put the paper in the toilet which really really upset you as you felt that paper should have been tossed in the trash can. YOU CRIED AND CRIED and told Daddy he made a "boo boo" and should not have tossed the paper in the toilet, etc. On and on you went and even came into the bedroom bawling. What a mess!

Then today you lost it again Daddy brought strawberry ice cream home from the store and called you out to see it as you informed him "I don't eat that anymore", "you need to throw that in the trash can!!" and started crying all over again!! I proceeded to inform him about how you don't eat it anymore and that was why I had made him and me a strawberry milkshake not too long try to use up the strawberry ice cream we already had in the freezer that you were no longer eating! we have 2 half gallons of strawberry ice cream AND a half gallon of vanilla ice cream he also bought in the freezer. I guess he better start eating up!!

Last night I was the one who told you that Daddy "made a boo boo" by tossing the paper into the toilet while you were still on it so you have since coined the phrase "YOU MADE A BOO BOO" anytime we do something you don't think is right or something that bothers you.

I did make you some fried chicken wings today and you informed me that "I LOVE your homemade chicken wings" and you actually ATE THEM!! SO that is progress. If we can get you to eat some real veggies and fruits it would be great. You are saying how lettuce, and tomatoes and other veggies or fruits look good but when it comes time to even TASTE a bite you don't want anything to do with them most of the time. You will eat a bite or two of carrot, corn or beans. AND I MEAN A MINISCULE BITE!

Anyway.....we are all bathed and ready for church tomorrow. You have been going every week and have been sitting very well and it has even been going longer than usual!!

AND you have been wanting to GO SOMEWHERE most days you are more back to yourself in that area! AND playing with other kids at parks. So this is all good.



Wednesday, October 19, 2005

Still learning to tie shoelaces and his reward is riding a scooter down a ramp which is actually more therapy for body awareness and strength

His therapy is cool. He has to do certain things and then can do things he wants to. They try to combine work with play to make his therapy more fun! SO he has to let's say TIE a know in a shoelace board before he can use the scooter to go down a ramp and crash into soft blocks or foam padded mats.

Worked a lot on UPPER BODY strength today!

In a smaller therapy room today instead of the big gym

Noah loves time swinging and spinning on the giant tire swing...and she lets him crash off it and provides him with plenty of sensory input!

Occupational Therapy Day-10-19-05

Noah had occupational therapy today. He did pretty well as he usually does though it can be an intense day. They always start out in the sitting therapy room where he works on fine motor skills such as building up his grip, learning to use certain fingers or muscles in his hands to do certain things and to determine and promote one hand over the other for use as he tends to be ambidextrous.

So anyway....I got to talking to the therapist. She was giving Noah instructions on how to do certain body movements and he just couldn't get it. I told her even at home I have tried to give him simple instructions on let's say "put your hands over your face" when we were working on fire safety and the stop, drop and roll routine, and he did not have a clue as to what I meant by that. He put his hands everywhere BUT over his face. She said that is because of his lack of body awareness and sensory issues. It is truly a physiological thing and he can't help it. Same thing when he gets worked up and he started making noises with his mouth and even spit toward the therapist. She just did what I would do and told him "we don't spit in someone's face as that is not nice" and kept on going with the therapy. She said what I already knew....that it has to do with his oral stimulation and it is something he cannot help! Keith on the other hand thinks he should be able to NOT do certain things like that at all after being told to not do them. BUT again it is something he cannot control and he does NOT do on purpose. He just has to learn that it is not appropriate in certain social situations. His brain processes some things completely differently than we do and some things he does not process at all.

So anyway....more clips coming!

Occupational Therapy Clips

Tuesday, October 18, 2005

Lake Dillon Posted by Picasa

the view from our restaurant at lunch Posted by Picasa

Gorgeous mountain view #1 Posted by Picasa

Dear Noah:

After church on Sunday we decided to take a drive up to the mountains. A GREAT day to take a drive. Not too hot or too chilly. Super blue/clear skies. We just headed west. We ended up in Silverthorne, Colorado and we even stopped and took some nice scenic pictures for a change. Had a bite to eat and then drove a little farther west as you did not want to stop driving and wanted to keep heading WEST! So we drove on to Frisco and that was it. We saw some gorgeous mountain/lake views. We had so much fun. You were SO excited to take a drive and were all smiles the entire way UP the mountains singing and humming and making your usual noises you do when we take a drive. Riding in the car seems to provide enough sensory input that it actually soothes you I think so you end up sitting very well and behaving very well. Course you are buckled into your seatbelt also!

I will post some pics next of the gorgeous mountains and lakes we saw! Oh...YOU LOVED going through the tunnels!



Daddy picking a pumpkin and you busy watching the cars up and down the lanes in the fields and covering your ears Posted by Picasa

Having fun searching for pumpkins though the sounds of cars up and down the lanes bothered you! Posted by Picasa

You and daddy at the pumpkin patch 2005 Posted by Picasa

Dear Noah:

Have noticed you have had an extremely difficult time sitting still lately. You seek so much sensory input from your environment that you are on the move constantly. The speech therapist today actually sat you on a therapy ball instead of a chair which she said helped. SO we may try that at home. Course we can't tote one of those along with us everywhere we go.

We went to the pumpkin farm today. Picked 3 nice pumpkins. You had a good time but covered your ears a lot at the sounds out there on the farm. You petted some animals and we took some pics which I will post next. Below is a video clip of you searching for pumpkins.

We went to dinner with grandpa Leonard tonight. You had a great time but rarely sat at our table as you were busy standing in the aisle or at the table across from us (which was empty of course)....moving around...making sounds....covering your ears and humming. The past few weeks have been really really difficult for you.

Speech therapy went very well however. Our day went well. You say some of the cutest things now and are so willing to offer your help if we are busy doing something and you see that we MIGHT need help.

Still the littlest things can upset you. Strange little things sometimes can really set you off.

So...I will post some pumpkin patch pics next.



Pumpkin Patch 2005

Saturday, October 15, 2005

Dear Noah:

We were heading to the park today. We were getting some food at the drive through to take to the park for a picnic. I had seen a web site last night about 5 families with autistic kids who reportedly "recover" from their autism.

While sitting in the drive through I was talking to Daddy and said maybe we should NOT think that you will never be cured. I mean things are always possible. We had pretty much just quickly accepted the fact that you would never be cured or recover. Which brought us to a discussion about these 5 families and their kids and many others who over time have reported that their kids have been "cured" from autism.

They have all tried different things. Some medicines....some vitamins...some different therapies...some combined treatment. We had been told repeatedly that anyone with autism is never cured. You can learn to "cope" and get by in our world but you would always have autism.

For some reason we quickly accepted this unlike the actual diagnosis process. We were quite hesitant to accept that.

Anyway.......I guess I really don't believe you will ever totally be cured from autism, which I think is just being realistic. Yes I believe in God and I believe HE can do anything. Nothing is impossible for Him.

BUT your Daddy said it best. He said "I guess I don't see Noah's autism as a detriment". AND that made me realize that I DON'T EITHER. THAT is why we have accepted the fact that you will never be cured from autism so easily and quickly....unlike many other parents who do nothing but search their entire lives and lives of their children seeking a cure! They want their kids to be mainstreamed and "indistinguishable" from their peers.

HUM....I don't see any problem with being distinguishable from your peers. I think it is great you are different. I am thankful your autism is not as bad as it could have been. I am thankful you are making progress and learning how to cope in our world. BUT....your Daddy and I have never ever wanted to CURE you. I guess part of us feels like if we CURED you...that you would become a zombie version of a regular-normal neurotypical child. Not necessarily distinguishable at all.

AND while you still have many issues to work through and you will continue to have these issues throughout your life most likely, you can process and think and see things completely differently than most of us can or ever will be able to. This makes you truly unique and special in your own way and could mean you will have very special talents...more so than an average Joe.

SO.......if someone said they could give you a magic potion to "cure" you.......I think your Daddy and I would be extremely you seem extremely happy just the way you are.....and even though it can be frustrating at times or even most of the time.....we are happy with you just as you are as well. To some this would sound they want their kids to not be out of control or over the top about things or to not have the typical behaviors that go along with autism. We are all for improving your communication skills and language and dealing with things in society, etc. Don't get me wrong. strip all your little quirks away would mean destroying the biggest parts of WHO you are to yourself and to us.

I am not sure where I am going with all this. They are just some random thoughts I had after watching this video clip about these 5 families with their autistic kids. AND how they reportedly were cured of their autism. It made me question whether we should just accept the fact that you would never be cured of autism or if we should say it is possible.

AND Daddy quickly reminded me that "we don't feel your autism is detrimental". Challenging....yes. A totally bad thing? No. Exhausting?? YES. Rewarding?? YES. FRUSTRATING? YES. BUT something that we should seek to get rid of completely? We don't think so.

We love you Noah....JUST the way you are.

Mommy and Daddy

Dear Noah:

So cute. We were outside on our balcony last night and I asked you if one day you would like to get married and have a wife. You said YES! I asked you if you wanted any kids. You said yes. I asked how many and you said 2. Two boys. I asked you what you would name them and you said Isaac and Isaiah. I asked you what your wife's name would be. You said Andy. I said Andy is usually a boy's name isn't it and you said NO. You saw it in Toy Story! haha. and it could be a girl's name too. (I guess it can be)

Friday, October 14, 2005

Dear Noah:

WOW. You actually WANTED to go to a park today. AND tonight you already told me you want to go to a park again tomorrow. AND RIDE YOUR BIKE! That is progress if it lasts.

You did act like your right leg really hurt you again though at the park today after playing. You said you could barely walk. SO we will need to watch that.

Dear Noah:

So....we have finally been moving some stuff to our storage locker. You help a lot. You willingly take the smaller items and carry them around.

We went out for breakfast this morning...and you did pretty well. BUT were ready to go also fairly quickly. Hard for you to sit lately. You tell me all the time now that your body has to move! I guess that is true cause it surely does! No wonder you look exhausted most of the time.

Next week Daddy is on vacation. So we will get a lot done around here as well as do some fun things too. I also will be starting training for a new job to see how that goes.

You have been doing really well with math lately and can already do 2, 3 and 4 digit addition and subtraction very very well. And you are only 6 years old!

Seems to be no limits to what you can do.

Better go for now. We need some supper!



Thursday, October 13, 2005

Dear Noah:

So I was out here in the living room today packing up boxes and you just came by. Found a toy piano in a box we are donating to Salvation Army. You started playing it. Next thing I know you were playing "The First Noel", "London Bridge Is Falling Down", "Twinkle Twinkle Little Star" and a few other songs. I was amazed about First Noel! I asked you HOW you could play that and how you learned.

You promptly told me "I just figured it out myself in my own mind!" You said "I know how to be amazing!" hahaha. I have been wanting to check into piano lessons for you as you are very interested. AND some kind of tumbling classes or something where you can work out on mats and stuff like in occupational therapy. They have special classes even for autistic kids in some places.

SO after seeing what you could do even on a piano that did NOT tell you how to play a certain song and you could do it all yourself...I will definitely have to check into this!



Tuesday, October 11, 2005

Dear Noah:

Well you started out having a great day today. Got up. You rarely if ever come out now and say good morning to me first like you used to. Used to be when you got up you would always come out here in the living room first to say good morning to me and even have me hug you. Now you get up and go to the bathroom and then back into your room and start reading or listening to music or playing something on your computer. That is fine but I miss you coming out!

BUT today when I walked by your room this morning you yelled out "good morning Mommy" and then followed that by "how are you?". I was so impressed! MILESTONES for you to interact like this! AND last night before bedtime you sat up in bed and smiled at me and I asked you "what?" and you said "I just really love you a lot!" Made me super happy and proud that you can express yourself like that. You promptly fell asleep afterwards!

Today we got ready to leave earlier as you had speech therapy but we had 2 stops to make first. SO I stopped and got your some hash browns from Burger King for your breakfast and we drove to the post office so I could overnight that package to the new job offer and then to the library to pick up my books and stuff on hold. You really wanted to go inside to both places but we were in a hurry as we had to get to speech therapy on time. We did. All went well there. You did great. We left and you decided to you would like CiCi's pizza for lunch so we stopped and got some cash and went there for lunch.

ALL was well. We left. Daddy decided to toss your Burger King trash from the back seat and that included your old cup from there and you about had a fit. Started a crying episode just over the fact that you would not have your paper BK cup to take inside the house (and we don't take those home anymore anyway). SO...I got you calmed down from that.

We had to run to the store to get Daddy some lunchmeat and stuff for sandwiches as he is filling in for someone this week and has to run routes. SO he needs sandwiches to take in the car on the road. You were excited about going to Safeway grocery store as they have hand basket shopping carts (small ones with 2 baskets top and bottom) that is just your size and you can push around. You got your cart and I of course had to get another cart to push around...the full size one.

We were going through the store and getting our stuff. You pushed your empty cart all around and spun it around in the middle of any aisle you could and were happy.

TILL IT CAME TIME TO LEAVE and put the cart away. This started yet another crying episode about how you needed a cart like that at home to push around. How you wanted me and you to come back later after Daddy went to work so you could push the cart around some more. How you needed a bigger cart to push around because your cart at home was lower and you had to bend over part-way to push it around now (not really).

On and on and on. You wanted me and you to go home and MAKE a shopping cart but you did not know how we would do that as we had no plans you said. I said we could make our own plans. You asked what we could make it out of. On and on. Cryin the entire time...and we were STILL IN THE STORE don't forget.

Crying out to the parked car in the lot. Crying in the car. Screaming in the car about needing a cart to push/spin around that had 2 baskets and was higher and the wheels would turn, etc., over and over and over.

I finally told you to calm down and get a grip. To take some deep breaths and once you calmed down then you could talk to me some more about shopping carts.

Inside the house. More crying. I got our your current shopping cart here at home for you to push. Apparently it is no longer good enough...or at least today it is not. You need one higher to push not lower. You need 2 baskets not 1. I made a second basket but it is still too low. SO back into the closet the cart went.

Daddy checked for hand basket shopping carts online and they are pretty expensive. Even the ones on EBAY are not cheap. SO....we will see. This is not something you will forget......but...maybe we can get one for you and then donate the other one to charity. AND then heaven forbid we get one that is not exactly like the one at Safeway and look out. You would not want that one either. are calm for the moment. I have had you do some of your favorite things in your room to calm down. I then got the big massager out and let you hold it as it vibrated. Now you are looking for things to get into.....mainly to SPIN. I will need to find something.

Homeschool in a bit. Should be an interesting day. You also said something really cute in the car earlier but for the life of me I can't recall it yet. When I do I will be back to record it.



Saturday, October 08, 2005

October 8th, 2005-excerpt from my personal blog

WINTER STORM WATCH...for us...tomorrow night into Monday. Possible over 8

I made 2 loaves of pumpkin bread this morning. One with nuts for me and one without for Keith. YUMMY!

I made homemade chicken and noodles with mashed potatoes and green beans for supper tonight. ALL was great. I finally can make noodles like my grandma does but I still can't seem to cut them into really thin strips like she can. I don't mind larger strips but I want my noodles to be just like hers which means I need to learn to cut them even thinner!They were good though. Still hungry for more. I may go eat some more!!

Ran some errands. Ended up at Hallmark. Picked up our ornaments there we had ordered. Noah had a meltdown there. Stopped at our new rented storage locker to check things out. Noah had another meltdown when it came time to leave. Stopped at Home Depot to check some things out and pick up a few things. He did pretty well while there but still was hard to control. Constant movement today. Constant not wanting to listen and then crying spells.

Someone from my husband's work the other day asked about autism and how it can make a child act. I don't think Keith knew what to really say other than they can go overboard and have extreme reactions to things most people would never react to. For example....I was reading a blog of another husband and wife who have an autistic son. They got a phone call one day from his preschool saying someone would have to come pick him up and NOW!. Course the parents could barely make out the call as on the other end all they could hear was this intense screaming and crying. So when they picked him up they found out that while their son was trying to have a snack a fly came around him and his food and he freaked out and had a MAJOR meltdown. Now most so-called "normal" kids would never have a reaction like that especially over just a fly. But autistic kids and people can be extremely bothered by things like that. I know Noah has a very difficult time if a fly is around him especially when he is eating. AND heaven forbid one ever lands on his food as he will have a crying spell like there is no tomorrow and will NOT then eat his food! He will become consumed watching the fly in a restaurant to make sure it won't come near him or his food. That is all he talks about. Sometimes he will break out crying if a fly is just too close to our table in a restaurant. AND I MEAN CRY!!!!!!

Going to every stop today I noticed his first announcement to us all as we got out of the car and headed into the store was what kind of toilets that particular store had. Yep. He knows what kind of toilets are in all the stores or restaurants or HOME DEPOT even ....ANYWHERE we have been to even only once. He knows if they have an automatic flushing toilet, regular flushing toilets, loud flushing toilets, quiet, both kinds of toilets, toilets low to the ground or high up...he knows them all and that is always the FIRST thing he will announce on our way into a store. "Mommy.....this Home Depot has 1 automatic flushing toilet and one regular toilet".....on and on. SO THOSE are some of the differences in autistic kids compared to other kids. Besides all the usual speech language issues and delays and usual sensory integration issues. It can be quite overwhelming and exhausting. Getting Noah to EAT these days is challenging. Getting him to not over-react so much is an ongoing major project that never ends!

Anyway....all is well now or appears to be for this moment in time. We are all exhausted and actually did very little today. I DID make time to call my grandma this morning instead of waiting till Sunday as I have not been able to get her on Sundays lately as everyone else seems to choose that day to call. Good thing I did. She seemed lonely and we had a great talk for a couple hours I think! I think she would have talked even longer if I finally did not have to go in order for us to get some lunch and get some things done. Anyway....I love my grandma so much! I wish I could go visit her every week in person!Now to prepare for fall let alone winter!!!!!!!!

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Dear Noah:

Wow...what a trying day for you!

We decided to run a couple of errands. You decided to get dressed so we could do the errands. ALL seemed okay.

Decided to cut back on the errands as it was already late and everyone was hungry for lunch. SO we went to Arbys for lunch first. Then to Hallmark to pick up some Christmas ornaments we had ordered. While there you were really in a mood to MOVE MOVE MOVE. You were spinning around in the store but we were afraid you would get too close and spin too close to some breakables. While I was at the counter checking out your daddy apparently got on you for spinning and he still does not know how to tell you to NOT do things in a way that won't set you off. you went into a major meltdown! You ran up to a display of MUSIC that you can punch in numbers and listen to samples of CDs. THANK goodness you chose that area and not like the glass candle area beside it. your fit you ran up to that display of CDs and slammed/pushed/shoved your way into it with your hands, which in turn knocked the entire top shelf of CDs off!

I think because we are such good customers and were spending quite a bit the owner and cashier did not think much of it but we sure did! When they went to try to pick up all the CDs your daddy promptly told them "no....he can do it" and we set you to work picking up the CDs and putting them all back where they belonged.

Then you told the women in there working you were sorry. Then I made you sit down in a chair till we were done checking out. You came up and promptly informed me "but my body has to move!" I told you I was sure it did but inside a store with some breakable things was NOT the place to do it and you would have to wait till we were done checking out and went outside so you could move all you wanted. I also reminded you if you wanted to go to the storage locker today you had to listen. SO you were sad and a bit sniffly but you did better.

BUT you were that way everywhere we went. Ended up always crying about something. AND I MEAN CRYING!!!!!! We would calm you down and then head to another place and the entire cycle would happen again. You had a very hard time listening. Very difficult time not moving and spinning around or wanting to touch things in stores to the point where you knocked them down laughing the entire time. You don't seem to grasp the concept that knocking things off in a store from the shelves is NOT something funny to do. At least you are becoming aware of how your body feels and can now sense when you need to move which is a good thing. TEACHING you how to control that till you are somewhere safe to MOVE is the next step. OR giving you substitute acceptable moving behaviors you can do till you can do large body movements somewhere safe like at home.

Makes me realize more and more how important having our own house is. You can be louder then. You can move more then, etc.

SO after the last 2 stops you really just wanted to go home as by this time you were completely exhausted. AS we ALL were. SO no moving of stuff to the storage locker today.

I also reminded you that your behavior today was another reason WHY you needed to learn to be consistent with your actions and words so you could remain calm and in control.

Anyway.....we are all tired. Not much got done. Thank the Lord nothing got broken at Hallmark!!

I love you.


Friday, October 07, 2005

Dear Noah:

I am now sitting here wondering if the "wondering" and "worrying" and things like that ever really end? I am already wondering about you as you get older and what will happen. You are so naive about things and it will take a long time to TEACH you things. AND even then you may still have trouble with some things.

Parents of autistic kids I think also worry about different things ON TOP of the normal things most parents worry and wonder about with their kids. I know in the back of my mind that things will be okay. BUT I also worry about you and God willing if the entire world and all of us are still in it in like 20 or 30 years...or you will be then. Will you still need assistance of any kind in your life? Will there come a time you may be alone? I don't ever want you to be alone in the world.

I do believe in prayer and God and so do you. We will have to start praying NOW for God to provide all that you will need in your life including loving, caring people to help you and help take care of any of your needs always! I also pray you find a great loving wife one day if you so desire to have one. I think you would make a great daddy one day. I pray you will be successful in all you do. I pray we can get through all the homeschool issues and therapies and teach you the very best of all you need to know to make it in our world. I pray you continue to be a human sponge and '"want" to soak up as much as possible each and every day. I pray you don't regress any farther than you did this summer. I pray you can gain insight and wisdom and avoid any danger and evil and darkness and typical things most teenage kids have to experience or choose to experience. I pray you keep your eyes focused on GOD for direction and guidance and peace in your life. I pray for your never ending happiness and love. I pray you will always be able to find calm in any storm.

It is funny. I used to think I prayed a lot....but since I have had you...I truly pray without ceasing now. Almost like little mantras. Over and over throughout each day. "Please God help Noah make it through church." "Please help Noah be nice to other kids in the waiting room and share toys and not have a fit." "Please help Noah to learn to wipe himself after using the bathroom." "Please help Noah learn all he can in homeschool." "Please help Noah want to try to eat more different types of foods." "Please help Noah avoid any danger and accidents so we can avoid the crisis a trip to the ER or dentist would create." "Please prepare Noah for the future so he can one day HANDLE going to the dentist if needed, etc." "Please if Noah ever has to have anesthetic, have them find a way to give it to him without traumatizing him all over again." "Please let Noah be able to handle the sound at the movies." "Please let Noah be able to handle kids walking by at the park and not want to leave." "Please let Noah WANT to get out more often." "Please keep Noah loving God and wanting to learn all he can about Him."

Please....please...please.....the list and prayers never end. Most probably revolve around your safety and ability to just make it through another day without any major crises or crying spells over what usually appears to be a very small thing to us but is the end of the world for you!

Dear Noah:

We got you dressed and ready for the day today. Decided to go get our storage locker and you had a great time checking out the lot and all the lockers we looked at. You almost had a meltdown because it was all over with in a few minutes and of course you wanted to continue looking at lockers. That is one thing going for you. If you like something you never seem to tire of it and can go on and on for hours and don't know when to stop so someone else has to tell you to. Guess that can be good and a bit bad.

We left there and ran back out to Big Lots. Then to Fazolis. By the end of the lunch you were MORE than ready to get back home.

It is good that you get out a little bit more now than you were but at the same time you still can't handle any long days doing much. You get so overwhelmed and overloaded so quickly. Then you spend the rest of the day recouping. SO this means MANY MANY sounds and much movement! Exhausting for you and anyone else around us and makes it very difficult to complete any homeschool!

BUT we did pretty well today. I was checking the curriculum for 1st graders and to be honest you are once again already where you should be at least by the end of the year (already at the beginning of the year). This is great....but means I need to introduce more SECOND grade stuff for you instead of all 1st grade.

You have really been enjoying your study of EGYPT. I don't remember studying about EGYPT in first grade ever! SO you are amazing. You now want your entire room to be filled with stuff about EGYPT! SO we have been busy making pyramids and pharoah and cat masks. Studying all about Egypt. You really like discussing the TOMBS and mummies as you are infatuated with TOMBS right now.

SO anyway........found some great books at the library on Thursday. You are doing great with your reading. It amazes me how much you "just know".

You were so funny today. You came out early and got your step stool. Took it somewhere but came back pretty soon. I asked what you were doing. You said you took it to see if our furnance was on as you were apparently cold....but you said "the furnace wasn't on!" hahaha. Oh well. Nights have been chilly lately.

SO I imagine Saturday we will start taking some boxes over to the new locker. It is a nice one. We went with a 10 x 10 for now. I think that should be large enough though we had thought about a 10 x 15 or 10 x 20. You should have fun.

You are still totally engrossed in TAPING and RECORDING anything...from cassette tapes to video clips on a digital camera to ANYTHING you can record with including tape recorders. I let you have at it as the repetition of watching and listening back to these recordings has really helped you with your speech and learning about things.

SO you are now off in your room......recording more cassettes. You get so excited if I give you a new one to record on. EVEN if it is an old one I don't care that you record over that had something else on it. Like a kid at Christmas!

More tomorrow God willing.


Mommy (smells like someone has a fire in their fireplace tonight)

Thursday, October 06, 2005

Dear Noah: you did not feel too well. You seemed tired and acted like you were just not your normal self. You also had diarrhea! You seem to be doing a bit better now at night. We put up our halloween decorations today. Can't believe we got the outside all done.

I will only do the inside WHEN AND IF I get it all cleared away and stuff moved so we have ROOM to decorate! May not be this year except for like 1-2 pumpkins or something simple.

You were sad today. You saw me talking to the neighbors downstairs and kept telling me you wanted their 2 kids to come up and play with you and be your friend. We keep telling you that you have to learn to consistently be a good friend in general before you could make long-term friends. There are too many times you freak out over little unpredictable things still. I did tell the father downstairs you had autism. His wife is a teacher so maybe they will understand better. His one son apparently is slow learning. He said his son talking to Noah was the first time he had ever talked to someone like that. He normally doesn't talk much at all. were sad they did not or could not come up. Then you cried and went on and on about wanting to have MANY friends that would come to your home so you could play. This makes me sad. I told you even if we lived somewhere around relatives you would not see them ever day. EVEN if you had many friends you would also not see them every day. WHO knows where you and the kids downstairs may lead in the future. I don't really know the parents well and am leary as I am sure they are, about having you play with their kids. Maybe one day in a general spot other than our homes. I don't know.

You finally got over it. I told you we were working on getting you around other kids and in classes to learn how to be a better friend in general. AND we will be getting you involved in time with more church things so you can be friends with the kids there hopefully. As far as someone coming over to our home or you going to theirs however, that may never be a day that will happen till you are much much older if ever. I know that sounds harsh but it is what we have to deal and live with. There are too many variables and unknowns to think about happening if you went to play somewhere other than with supervision by someone who knows about autism, etc.

I could allow kids to come here to play when I am here with you. I would feel comfortable with that. So that may be able to happen. BUT you going to someone else's house without me or daddy being there is not a possibility now anyway.

So....I felt bad about all this as you so want friends and kids to play with and yet at the same time you just can't always handle it. Even going to speech therapy and sometimes you run into a couple of kids there you freak out if they play with the same beads you are playing with. I mean FREAK OUT. SO......this is what I mean. You have many things to learn yet on being social and more friendly and sharing of things with others in order for others to want to be around you. I remember in preschool when the teachers kept telling us the other kids were AFRAID to be around you. This again makes mommy sad because when kids see you act like you do sometimes that is exactly what happens. They don't understand it and become afraid and don't want to be around you for fear you might hurt them I suppose.

SO my heart is ripped in two each time this happens. Now I know why we decided to homeschool you. Having to go through that every day is tough. You only have a few episodes of experiencing that now if any...which is better for us all. However, you crying about not having friends rips my heart to shreds!

I LOVE YOU SO MUCH...and I promise to do the very best for you!


Wednesday, October 05, 2005

Dear Noah

No occupational therapy today. Your therapist called last night and said she had the flu. will be taking a break from that.

You have really been branching out and expressing yourself a lot more. You can be really funny now sometimes with the comments you make!

You did well in speech therapy yesterday.

Hopefully today we can get a lot of school work done!



Monday, October 03, 2005

Dear Noah:

We decided to clean up your room and rearrange it completely which meant a lot of stress on us all. Mommy and Daddy got into it and you came up to me when I was yelling at Daddy and telling him to leave as I did not need his came up to me and started swatting me on my butt saying "You are being mean", "I NEED my daddy!". Stopped me in my tracks.

Had a busy weekend. Last night about 7:30 p.m. you decided you wanted Burger King for a late supper. I decided we should all ride along and go through the drive through and then "take a cruise" while you ate. Daddy and I got drinks at BK as we were not hungry like you. It was a nice night. Cool enough to keep the windows open a bit and it was great just getting place to go and just drive around and check the city lights out, etc. We were gone at least 1 hour. You calmed down. We all did after a very busy weekend. I said we needed to "take a drive" more often.

Today we had my VUE washed and cleaned so you played putt putt with daddy while the truck was being washed and waxed. The Wave Car Care Center is fabulous. SO many things for kids to do WHILE the car gets cleaned and washed. SO many things for the parents to do too!

THEN we drove up to the new local school supply place. WOW. We had a blast. The clerk there somehow cued in on the fact that you have autism. I know some of your behaviors are more noticeable but I was still surprised to think she could tell. Most can't. I guess it could have had something to do with the fact that you kept trying to SPIN the racks in there that could spin around. You finally found one with nothing on it which you promptly started spinning wildly. NO matter how many times we told you to NOT spin it at all or to spin it slowly as it was not a toy. The clerk took you up front and she taught you how to play this cool game which was one of the things we ended up buying. They have a seating area up front where the parents/teachers/shoppers can sit and ave gourmet coffees in big oversized cushy chairs while the kids play games and check out things at tables. FABULOUS store.

When we started talking about you Daddy told her you were autistic and she said she thought so.Not exactly sure but like I said I think she could tell by how you acted in there. SOME of your behaviors are a lot more noticeable now as you have gotten older. Anyone with experience in it at all or being around it would probably be able to tell.

SO we got some cool things for homeschool and plan to go back a LOT!

Back home now where you are still working on that game which will count toward school. Logic and sequencing and following directions are all involved. SO cool!