Thursday, May 31, 2007

Dear Noah...

We went to see Grandma C. today in the rehab center. You did very well while there and even hopped into her bed with her and snuggled up close.

We then stopped over to see grandma and grandpa L. Your aunt Becky was there too. We only stayed there about 1 hour and then headed back home. You fell asleep on the drive back.

You were upset about having to leave as usual. Once home you thought you needed to go back out and get something to eat OUT at a restaurant. I SAID NO. You even managed to squeeze ONE tear out of your eye and came out to the kitchen to show me the tear. I guess you thought it would make an impression but I just told you "yes I see it now wipe it off"....haha...which you did. And back to your room you went and I am warming you up some leftover KFC and potato wedges you had from lunch.

I just hauled the trash out to the curb. Should have mowed......looks like it will rain now.

I love you!


Wednesday, May 30, 2007

School Daze...

Today since I had some time waiting on work to roll in....Noah and I ran some errands. I decided to go check into some schools in the area and talk to some people to find out if he would try school again this coming fall...what we would have to do NOW in order to make that happen.

SO....I did finally find the correct school he would attend. Noah seems to "WANT" to try a public school now and I think he is much more prepared and ready to try it. I am not sure how it will all work out and that makes me very nervous and apprehensive. BUT if he is willing to give it a shot and is halfway excited about it...I don't want to him to miss out on that chance. SO...we will proceed and fill out the papers and have him tested and go from there. He is even talking about staying in a regular full-day at school which I am not 100% certain he is ready for.....and what he would take for lunch in a lunch-box - - so I will not discourage him.

The schools in this area look very worn and old....but hopefully they will be more than adequate inside. Coming from Colorado and the horrors of Columbine I have been less than pleased with what appears to be a huge lack of security in most of the schools. BUT I have to remember this is a much smaller town and they are behind the times or just don't feel a need which is absurd. Tragedy can occur even in a small town. I mean even the local courthouse has NO METAL DETECTOR inside! I don't care if it is a small town......would they not think perhaps it a good idea to have a metal detector in a courthouse? Some locked doors from the outside at the schools instead of leaving them not only unlocked but usually open if the weather is warm outside? YES...most of these schools apparently have NO air conditioning so they leave the doors wide open.

We only took a brief look around today and will actually go back for a more formal tour and everything at another time. The teachers and principal all seem very nice and helpful. Of course when they see FUNDING dollars walking into their school they would appear that way. I hate to say that but it is true.

I am hoping he can get into some summer program for an extra boost. Not sure the local school district provides that. He will have much to review before he is tested too......and hopefully he will pass enough to get into the third grade which is where he should be.

Anxious and apprehensive...I can feel those ole' familiar knots starting to form in my stomach again.....reminiscent from preschool days and attempts at kindergarten.

I have to learn to let this go.....

I feel absolutely HORRIBLE for even admitting any of the prior post

So I am sorry. I am sorry Noah that I sometimes become frustrated beyond belief. I can usually handle it all well and just let it roll off my back.

I am thankful I did not yell at your or anything like that. DO have a legitimate reason for behaving the way you do and you cannot help it. I know this. I just get frustrated sometimes.

SO mommy is sorry she got frustrated. I will keep plugging along and making your food in ways you will eat....but you will also have to learn to bend a little when it comes to things not always being just SO. JUST like you have with other changes in your life.

I LOVE much. AND yes......I did not let him starve till morning. He had a fruit roll up for a snack.

kisses to eternity my little man


I am so tired of making food for Noah and ONE thing being wrong with it...and he won't eat it!

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Tonight he decided mac and cheese for his has to be ONLY KRAFT macaroni and cheese and it has to be fixed in just the way he likes it. NOT too much milk and not too dry. Extra cheese but not so much it makes it taste funny. NO SLITS in the pasta. I fixed it was ready......he then had to go to the bathroom!

This meant dumping the plateful of mac and cheese back into the pan to keep it warm...which meant by the time he finished in the bathroom and came out....the PERFECT quality to suit him had changed and was now just "not right" the point where when he tried to eat gagged him. He managed to get about 5 bites if that in him...and then said to me "I am afraid to say it" and I asked him "WHAT?" (knowing what the answer was going to be and he then proceeded to tell me how it was too dry and not warm enough to where he could not just let it slide down his throat without swallowing it! I warmed some up further. He still would not eat it. I guess the sentence should read he COULD not eat it.

I am ticked. I feel pissed off and at the same time guilty for feeling pissed off because I know he has HUGE sensory issues and it is not his fault that things like this really bother him. He does much better at things now than ever before and will try things. I made him take a few more bites which only consisted of a NOODLE each time....and he gagged each time. Basically I wasted my time, the food, and his time, as he basically had his entire plate left.

SO....since he was already planning his snack for the night....I surprised him and told him THERE WOULD BE NO SNACK AND TO NOT EVEN ASK ME FOR ONE. NO COOKIES, NO CANDY, NO POPSICLES, NO NOTHING! He looked upset but said "okay" and walked back to his room and hopped back on his computer and is once again laughing like nothing happened! I told him maybe tomorrow he would be so hungry he would actually EAT A MEAL for once.....and eat well...and NOT something from a fast food restaurant which is about the only thing he will eat which is nothing but crap!

He has to learn that even if the QUALITY of his food is off a bit...that even that is OKAY! Something he has NOT YET LEARNED. That if something is a different brand and still tastes good it is okay to eat it! If you have ever seen the episode in Rain Man where Dustin Hoffman freaks out about the green will know what I mean. IT HAS TO BE SO SO and THAT WAY EACH AND EVERY TIME OR DISASTER IN MOST CASES!

I am so frustrated. You have no idea to the EXTENT one has to learn to prepare their child's food to suit their needs or else your child WILL NOT EAT! AND that is NO JOKE! AND lately about the time I get the hash browns out of the oven just right...the way he always liked them suddenly they are too brown or not brown enough. Same for cookies. I bake them too long or not long enough. When we order a pizza he complains they put cheese on it and not enough sauce.

He to this day will still NOT EAT real vegetables or fruit. I can get him to eat Gerber Stage 3 bananas. THAT (other than fruit roll ups which is not really fruit) is about as close as he has ever gotten to real fruit. A taste of an apple to him is like offering him poison! Same for veggies. He will break down to the 1/16th of an inch the amount he is willing to TASTE a carrot for example. He will tell me "I will take 1/16th of an inch of a bite of that carrot!" and that is what he does. NO less.....and then he gags.

I know it is a process....and he has come a long way. AND I know it will always change with him.....sometimes good and sometimes bad. BUT it is very frustrating.

There...I vented. Now I feel like a really bad mother.


My post the other day got me to thinking about Noah and his progress with changes in his life. Just a few short years ago he did not handle ANY change in his routine or environment at all well. When I first put him in preschool at almost 4 years of age he had a heck of a time. He was not verbal except for mostly sounds and what we called "filler" or garbled sounds in between 1 or 2 actual words.

Because he had no easy way to express his concerns or dislikes verbally....he became extremely frustrated very very easily. This meant in most situations he would lash out physically as a response to show his displeasure about something. Obviously this is not a socially acceptable attribute and we needed to do some serious behavior modification. This...while possible....I have to tell you.....can literally take MONTHS TO YEARS sometimes to accomplish. Just to let you know up front it will not likely be something that you can change and have your child master in a few weeks.

So if a teacher made a last minute change in his schedule at school (something we tried to avoid and prepare him for in advance)...Noah would lose it. AND I mean LOSE IT. He would throw things or knock things over. Push. He loved to push. This got him into trouble a lot. He went through a short (thank goodness) period of trying to bite as well. That was a living nightmare! If the teachers could not get him to listen after 5 attempts they were to call us and we had to go pick him up. I cannot tell you the number of times we were called and had to pick him up early.

Preschool was not even an entire half day. Just shy of 3 hours I believe. We finally started picking him up early since the last part of the day...the quiet time ...he just could not handle well. I remember those days and the butterflies in my stomach every time the phone rang. I remember dreading picking him up from preschool because every day we heard nothing but negative/bad things about all the things he did wrong. It was so difficult to continue to take him back every day and put him through what seemed like a hell on earth. BUT we did. We did have to withdraw him from preschool a couple of times just to give him a break. Usually around a major holiday like Christmas. The holidays posed enough of a change in his routine and he could not handle the added stress of increased classroom activities and sounds and noises and people. I complained to the school that the teachers how discouraging it was for us to always hear nothing but the negative things Noah was doing. We rarely if ever heard anything positive. I reinforced the positives at home. I encouraged him. I worked with him. I homeschooled him even at a young age because they could not really get him to focus or cooperate long enough in school to learn something.

We taught him basic sign language so he could use that to COMMUNICATE. We also started using the PEC system (picture exchange communication) which are little photos or drawings of familiar objects and activities, usually little squares that we laminated and placed Velcro on the backside to make schedules and social stories out of. This worked very well with him at preschool. UNTIL there was a change in his schedule.

I wanted to talk about CHANGE and how disruptive that is for an autistic child. My goal with Noah was to start changing the way his felt and thought about change (brainwashing him basically or call it reprogramming his mind) into believing that change was "OKAY" and that if something were a little different on one day than the other....that it would be "FINE." My main words were always "it is OKAY" and "it is FINE!" Over and over any time there was a change in his routine and he would LOSE IT......crying....dropping to the floor bawling...half-screaming....repeating over and over how we needed to change things back or FIX it was the way it was before....I would start my drill of "it is OKAY" or "it will be fine....CHANGE is okay and will always happen and it can be a GOOD THING!" "IT IS NO BIG DEAL and NOT worth crying about!"

Noah used to go so far as if there were a change in our home environment...let's say a light bulb was burned out.....he would not be able to rest or do anything else until we changed the light bulb. He became OBSESSED about the fact that the light bulb was burned out and needed to be changed. This bothered him immensely. He would cry and cry and go on and on about how we needed to CHANGE the bulb. It was easier just to give in and do it right away to calm him and get him to settle down than it was to let it go. BUT....I realized the world he would live in one day would not always cater to his wishes...and he had to learn to DEAL with changes in his routine or environment.

SO....if a bulb went out again.....we let it out for a little longer each time....saying "that is okay...we will fix it another day" (making it NO big deal). At school if I knew ahead of time the teachers were going to change his routine prior to sending him to school we would say over and over "your routine will be different today but that is OKAY because it will be fun to do your day differently than you normally is okay!"

After countless MONTHS of this......I will never forget the day Noah finally grasped this concept and started to embrace it. One day there was a change in his routine at school and he told use about it and then said "but that is okay!"

He took it further. Any time he spilled something or made a mess or got water on his clothes which used to upset him.....he would tell me "but that is was an accident....and that is is just water" or any number of sentences to let me know.....HE KNEW IT WAS different but that it was also OKAY!

I have never forced changes on Noah but instead try to prepare him for they are just part of life and always will be.

We cannot be afraid of change...and most of us are....because if we are....we can stifle our lives tremendously and be too afraid to take that next step forward.

I watched a video clip of Noah from 2005. I cannot believe the improvements he has made in just 2 years. He talks much better...his speech has improved....he can talk in complete sentences and some of his odd behaviors just don't exist anymore.

With that being said we still have a long way to go. And again I give thanks for hope.....for progress....and even for it can be a good thing!

I wanted to share an excellent link for homeschoolers and parents

This is a fantastic resource .....a place to go and find many websites to help you with homeschooling your child or to add to what they are already learning in a public school. I just discovered it today and was pretty impressed with the amount of resources gathered together via links in one location so I wanted to share:


Tuesday, May 29, 2007


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I was reading on some other blogs today...parents of autistic children. Sounds like some really have it rough. I remember many more trying times with Noah in the past....and I thank God that he has improved so tremendously over the last couple of years. With that being said however....I don't believe he was ever quite as severe as some of these other children sound like they might be. I am thankful for that...not because I would be disappointed in my son. I would love him regardless. I am thankful because it gives him a better, perhaps slightly easier, fighting chance at a good, productive life. And I wonder what this means for those other parents and children out there. The ones much worse. More severe. Even little spurts of improvement you grasp onto like your life depends on it.

I am not trying to make Noah sound so much better and superior than anyone else either. There are many more children not even at his level....who far surpass him. My job is to give him the best chance he's got for a future. And it is not like there is a book walking you through each step. Autism books, while helpful, could never possibly cover all the variations and degrees of its own characteristics as there are so many. While it has common characteristics among most who have it....what works for one child or adult with autism does not necessarily work for another. It is truly a trial and error, "let's see" sort of thing.

The NIKE commercial always blares over and over in my head. "JUST DO IT!" That is the best way to learn anything. What works and what doesn't. JUST DO IT. Try it and see. If it doesn' have to keep looking for something that does work. Something that does make that connection with your child. This provides hope...which leads to encouragement, and drive to try again. And again.

I remember Noah's first week at preschool where all he wanted to do was kneel on the floor and push his head across the floor. I remember him not being able to hold scissors or a pencil let alone a crayon....and not being able to use any of those things. He could not draw a face or trace lines or write. I remember him not being able to talk at all...he only made sounds...till he was almost 4-1/2 years old. I remember him not knowing how to walk down steps one step at a time...or not being able to peddle a tricycle. I remember him not being able to stand one drop of water getting on his shirt without having a screaming fit. I remember him not being able to touch sand let alone play in it. Same for shaving cream or finger paint or play dough or coloring Easter eggs. I remember him not being able to go to church because the crowds bothered him. I remember him not being able to go shopping because he would think everyone was staring at him. I remember him not wanting anything to do with a toilet. He was not potty trained till 5-1/2 years of age and even now....he sometimes has to have help wiping. I remember him not being able to put a coat on properly or zip it up. He still has problems with buttons and tying shoes. I remember him not wanting to go to a public park because other kids might come and also want to play. He would scream if he saw another child or people coming our way. I remember him not knowing how to swing or kick a ball. I remember him being too tired just from playing to walk back up the steps to go home. I remember so much....things I had almost forgotten about...or maybe even took for granted now because he can now DO all those things and so much more.

I list these things to offer some of those other moms out there HOPE. It IS possible for your child to improve and succeed....little steps at a time.

Today I give thanks for each little glimmer of hope.

Dear Noah...

I watched you from the window the other day, playing with the neighbor girl Jennifer. You had given her your firetruck to play with and you were lying down on your sleeping bag just resting I guess while she played with it. At some point she apparently broke a piece off as it got stuck in a blanket she had. She called got up.....assessed the problem....let her try to fix it....then you both tried...and then finally you...all by yourself......were able to pull the piece from your firetruck free from her blanket. AND then put it back ON the firetruck!

You did all this without any crying or asking for help from me. I was amazed at how calm you focused and concentrated you were on the entire problem. Very analytical. I snapped these photos through the window and screen so they are not the best quality...but it shows step-by-step the basics of what you went through.

I am very proud of you. You handled that entire situation very much like a little man should!

I love you Noah Wesley...


Monday, May 28, 2007

a tribute I made to remember those who have served...

It's Raining today....Memorial Day 2007

Noah and I will have to postpone placing flags on the graves. He is feeling much better. Today would be a good day for a movie......but I am sure everyone else has the same idea now.

We may stop in and see Grandma C. but it sounds like she will be having a lot of company today.

We want to remind everyone to give thanks for those who sacrificed the ultimate so we could have a day like today, free to do as we wish, even if that is nothing at all in the safety of our home and country.

Have a safe, blessed Memorial Day!

Sunday, May 27, 2007

Sunday before Memorial Day 2007...

Noah and I watched most of the Indy 500 today. It was a very strange race....lots of down time and RAIN! Noah watched more car races after it was over.

Today was an official pajama day for the both of us. I have not done that in a long time and I must admit it was rather nice.

Noah ate nothing but leftover pizza today for breakfast, lunch and dinner.

He seems to be feeling much better. I called Grandma C. tonight. She sounded good but half-asleep. In fact when she answered it was like someone was pushing down on one of the keys for the longest time. Finally it was let up and she started to talk. I think I woke her up but she said the cord got wrapped around the phone and stuck.

Anyway.....Noah is now in bed. No medicine required tonight. It is only 10:23 and I am wondering what I might do with the rest of my night!

Saturday, May 26, 2007

Saturday before Memorial Day...

Noah seems to be feeling a bit better. He is much more active and vocal today. I have kept him inside the last 2 days as much as possible and that has helped...along with over-the-counter allergy/cold medicines.

It has been pretty hot and muggy here and in some other areas.....we have had no rain for awhile now....and I thought I would post a snippet of our neighbor snow-blowing his driveway during the blizzard 2007 in Ohio.

Check it out here SNOW BLOW

Friday, May 25, 2007

Friday before Memorial Day, 2007

Noah is being bothered by pollen and allergens in the environment I guess. He is not feeling all that well again and in fact is now down for a nap....something he never takes unless he is really sick!

I had to go to Lowes to pay off my account...a place he loves to frequent......and he was not really even into that. He wants to get a new swimming pool but did not have the energy to go into K-Mart to look at the ones they had on sale.

AND to top it all off I have checked his mouth and I swear it looks like he has more teeth coming in that should not be coming another row or extra teeth. I am not sure what they are. He will have to see the dentist at the Children's Medical Center next month. I am asking NOW for prayer for that as I know he will not handle it well and will likely have to be sedated to have even basic stuff done. I am hopeful he will not require a lot of work on his mouth but after checking in there I am not so sure. He will need some of his baby teeth pulled and his teeth cleaned in front.....I have no idea what they could or would do about his bucked teeth and extra teeth at his age...probably nothing yet.

While it has been hot but nice outside....we both seem to be bothered by whatever is in the air and any time we are outside for any period of time can get headaches or worse. SO we have stayed inside a lot with the AC on and the windows shut up. Running around today I am sure did not help him any. Nothing else much new on this end. I want to get my flags and stuff ready for Memorial Day.....but right now that does not seem such a priority.

I got my bills from his visit to the hospital that night and our recent doctor appointment. It was cheaper to take him to the hospital and also receive the medication there than have him see the doctor. I am thankful to have insurance and we will only have to pay a portion....but believe it or not the hospital bill was about HALF the cost of seeing the doctor and he got his medication there. I sometimes wonder if just running him down to that clinic is better and it is closer.

I need to go. Going to work while he is sleeping.

Everyone have a safe Memorial Day weekend......and let us not forget those who sacrificed their lives for us.

Wednesday, May 23, 2007

Focus......Believe.......You CAN do anything...

"There is an invisible box that we have created around ourselves, which defines our horizon. Things within this box are within reach, achievable, see-able, safe, touchable, believable, feasible, possible. "Outside this box is a region beyond our wildest imagination. Things in this domain are too much to handle or contemplate. They are beyond reach. We rarely think about things that lay awaiting us in this outside box, so we never end up busting thru our own self-imposed barriors." - Usiere Uko

the power of this clip isn’t so much about the idea of “giving it our best” or the ideal of persistence as it is in the PROOF that we can EXCEED any self-imposed limits through internal vision.

Tuesday, May 22, 2007

Dear Noah:

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Some say I think too much. Maybe I do. But today I was watching you outside playing with the neighbor girls. You could not wait to get out there to play with them and busted out into the backyard through the back door yelling "Emma, Emma...I'm here, I'm here!" all the while running to "the fence." The fence...very symbolic actually.....separating two worlds that are very different. As I stood there watching you all play together "through" the fence it got me to thinking.

I got to thinking about some of the differences between you and the two little girls you have come to adore. I wondered what might happen in the future and if Jennifer or Emma would still be super friendly with you as you got older (if we still lived here and they did too) or if they would slowly at some point begin to pull away. I wondered if they would go on and begin a fairly typical life for themselves in school and if you would be left to struggle just to get through a similar day in any public school setting.

I watched you many times just sitting alone watching them play from a distance. I watched you have mini-meltdowns over little things that upset you...nothing like you used to and few and far between...but reactions nonetheless. I wondered how you would manage in your life and if eventually you would be able to control those meltdowns to the point of elimination altogether? Sometimes it is noticeable the small differences between you and the two little girls....and yet I wonder if perhaps they are so small and insignificant that anyone else would even notice them?

I wondered about putting you back into the public school system this fall and what that might mean for you? Taking a deep breath I wondered if I or you would really ever be ready to try that again knowing full well unless I want to raise you completely isolated except for some exposures in a backyard or play area I would HAVE to put you back into a school setting of some sort eventually. I wondered if someone would notice the differences in you and pick on you to the point where they provoked you and you got into trouble and ended up in some juvenile detention. Or even worse someone hurt you because you are so naive about things in life. Part of me feels I need to completely protect you and shelter you from all possible scenarios all the while knowing that is not even close to being realistic.

I worry about all sorts of things. I know all your quirks and what you need. We can avoid lots of explanations just because we are both tuned in to each other and aware. Yet you are now 8-1/2 years old. I have realized I cannot possibly give you all you need myself. As difficult as the world can be sometimes...or at least the people in will have to spread your little wings and try to fly.

I was stepping out of the shower today and looked at the toilet seat. I remembered how difficult it was to ever get you ON a toilet let alone using the toilet. I remember we had to change the toilet seat after we finally got you to using the toilet because the old one had broken and we had to get a different one. NOT a regular standard white one......we got an OAK one. You would not sit on that toilet seat for the longest time. I constantly continued to work with you on CHANGE and things being different and how that is OKAY. FINALLY you were able to use that different toilet seat and then you branched out and started to use toilets everywhere! We did have to still work with you on flushing as the sounds of some public toilets flushing bothers you to this day. BUT the point is even though it was difficult and trying and took MUCH LONGER than anyone could possibly have imagined......YOU DID IT.

You have come a long way....but need so much more. You need interaction. You do not need to be picked on. My greatest fear is you will go through hell in a public school setting. I will have to work with the school and teachers and hope and pray you get the very best! You deserve the very best. I need to find mentors in your life and educators who love you as I do. Who will take care of you like I would but allow you to expand and grow and try things on your own too.

We have a lot of preparation to do this summer and my stomach gets all in knots just thinking about you possibly starting school this fall.....but I realize you at the very least need to try it again. If it does not work out we will find something that does. I am hopeful your little quirks will not be pointed out but more accepted this time round.....ignored for the most part....allowing you to feel like one of the GROUP and not separate from all the others though you are in a room WITH all the others.

I love you more than you will possibly ever know or be aware of Noah.


Sunday, May 20, 2007

Dear Noah:

Today Aunt Melissa and cousin Audrey came over to visit. You had a great time playing with Audrey. You both went outside and got hot so you cooled off in the pool splashing around (just your feet) for a bit (but your clothes got wet) you both then dried off in the sun so we could go get you both some lunch and then head to the park to play...

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Then we took your lunches to the park and let you play there. Part of the fun was you and Audrey both spinning in these weird pieces of playground both loved to spin in them though it looked like you both might puke (in reality I think it was me and your Aunt Melissa that felt like puking just watching you two do all that spinning on a full stomach!)

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Audrey is really strong and loves the monkey bars!

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I noticed you are both at that awkward stage for teeth.....I do hope Noah your front teeth will settle back where they should be soon!

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You had a blast and I enjoyed my visit. It has been too long since we visited with Melissa and Audrey. I get a kick out of them both!

HERE are a couple of clips of you two spinning....just click on the links!



Saturday, May 19, 2007

Dear Noah:

A beautiful day again today. You have played a lot outside with the "girls" next door. If I can get some work done today extra......we might be able to get together with your cousin Audrey tomorrow so you two can play.

Lots to do here on my end. Always something. You HAVE been wiping your butt the last 4 days. YEAH on that. TWO of your loose teeth are almost out. YEAH on that!

otherwise......we are holding our own.

I love you


Thursday, May 17, 2007

Dear Noah:

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Today you came to me telling me this. That your camera was "small" and you wanted to sit it on a RR tie and film a train coming down the track! I about freaked. YOU KNOW the safety rules of RR crossings better than anyone! YOU KNOW you are not supposed to be close to the tracks or walking or playing around them ever but especially when a train is coming.

We went over this. You said you did not want to film from a car. AND you did not want to choose an abandoned train track. You wanted to put your camera on the middle of the tracks then. I explained that was not a better choice at if the train came everything including YOU would get smashed and you would be dead. I don't think you understand exactly what DEATH is yet.

I asked you many times to tell me you would never do something like this...and while you shook your were clearly upset and told me you did not want me to talk anymore about it.

THESE are the kinds of things we continue to have a hard time with. You have no clue sometimes even though you say you the real dangers about some things in life.

On another note however you are finally wiping yourself. You have done very well for the last 2 days. My goal is to have it completely NATURAL for you to do it by yourself by end of summer.

I will have to work on some way to show you how unsafe train crossings and tracks can be because right now when you watch train crashes and see fast trains coming down the track you just get more excited about it. NOT the reaction you need to stay safe.


I love you Noah. I most certainly don't want you to end up on a RR track somewhere chancing it all for a video clip of the train coming down the track, even if you mean just placing your camera there and leaving it on the tracks to record the train coming and passing overhead.

mommy XOXOXO

Monday, May 14, 2007

Dear Noah...

We spent the day Sunday at your grandma L.'s house for Mother's Day for a cook out. You got to play with your cousins Audrey and Alex. We took grandma C. along with us. You even got to see a raccoon come out to eat. All in all you had a great time and cried when it was time to leave asking to do it all again next Saturday or Sunday.


Friday, May 11, 2007

some interesting facts-- potential Lyme disease/autism links

According to the International Lyme and Associated Disease Society......

Patients with late-stage Lyme disease may present with a variety of neurological and psychiatric problems, ranging from mild to severe. These include:

Cognitive losses including: Memory impairement or loss ("brain fog")
Violent Behavior, Irritability
Rage Attacks - Impulse Dyscontrol
Panic Attacks
Rapid mood swings that may mimic bipolarity (mania/depression)
Obsessive Compulsive Disorder (OCD)
Sleep Disorders
Attention deficet/hyperactivity disorder (ADD/ADHD) like syndrome
Autism-like syndrome

Reported Lyme Disease Cases from 1991-2005- provided courtesy of

Immune link to autism
Autistic children develop the condition around the age of two
Autism may be linked to diseases of the immune system, researchers have said.

The discovery could pave the way for treatments for the little understood condition.

A team from the Johns Hopkins Hospital in Baltimore found that families of children with autism have an unusually high incidence of such diseases, in particular rheumatoid arthritis.

The researchers stress that larger studies are needed to establish how strong the link is.

However, if it is proven, standard treatments such as steroids or injections of immunoglobulin may help in the management of the condition for some autistic children.

Increased incidence

Dr Anne Comi and colleagues sent questionnaires to the families of 61 children with and 46 children without autism.

They were asked if they suffered from autoimmune diseases such as rheumatoid arthritis, lupus, early-onset diabetes, multiple sclerosis and thyroid disorders. (lyme!!!!!!!)

Autoimmune diseases are caused by the body attacking itself - immune cells think the body's own tissue is foreign and seek to eradicate it.

The results showed that in 46% of the families of autistic children two or more members had autoimmune disorders and 21% of autistic children had at least one parent suffering from such a disorder.

This compared with 26% of normal children's families having such a disease and four per cent of parents.

Another finding was that 11% of children with autism had allergies compared with 39% of children without.

Further research

The finding supports earlier studies, Dr Comi told BBC News Online, and some researchers had even tried using autoimmune disease treatments on autistic children.

However, the research so far had been on a small-scale and more larger studies were needed, she said.

"It's going to be really important to look at larger numbers of patients and study them well - it may be useful in identifying subgroups of patients," she said.

"One of the reasons autism is so difficult is because it's so many things - it may be that what we call autism now is more than one condition, we just haven't figured that out yet."

The team published its findings in the Journal of Child Neurology

AND more about tick bites:

Updated 4/15/06 - courtesy of International Lyme and Associated Disease Society

1. Lyme disease is transmitted by the bite of a tick, and the disease is prevalent across the United States and throughout the world. Ticks know no borders and respect no boundaries. A patient's county of residence does not accurately reflect his or her Lyme disease risk because people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure to Lyme disease for each individual.

2. Lyme disease is a clinical diagnosis. The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia burgdorferi. The Lyme spirochete can cause infection of multiple organs and produce a wide range of symptoms. Case reports in the medical literature document the protean manifestations of Lyme disease, and familiarity with its varied presentations is key to recognizing disseminated disease..

3. Fewer than 50% of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture-proven infection with the Lyme spirochete.

4. Fewer than 50% of patients with Lyme disease recall any rash. Although the erythema migrans (EM) or “bull’s-eye” rash is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the EM rash is pathognomonic of Lyme disease and requires no further verification prior to starting an appropriate course of antibiotic therapy.

5. The Centers for Disease Control and Prevention (CDC) surveillance criteria for Lyme disease were devised to track a narrow band of cases for epidemiologic purposes. As stated on the CDC website, the surveillance criteria were never intended to be used as diagnostic criteria, nor were they meant to define the entire scope of Lyme disease.

6. The ELISA screening test is unreliable. The test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity.

7. Of patients with acute culture-proven Lyme disease, 20–30% remain seronegative on serial Western Blot sampling. Antibody titers also appear to decline over time; thus while the Western Blot may remain positive for months, it may not always be sensitive enough to detect chronic infection with the Lyme spirochete. For “epidemiological purposes” the CDC eliminated from the Western Blot analysis the reading of bands 31 and 34. These bands are so specific to Borrelia burgdorferi that they were chosen for vaccine development. Since a vaccine for Lyme disease is currently unavailable, however, a positive 31 or 34 band is highly indicative of Borrelia burgdorferi exposure. Yet these bands are not reported in commercial Lyme tests.
8. When used as part of a diagnostic evaluation for Lyme disease, the Western Blot should be performed by a laboratory that reads and reports all of the bands related to Borrelia burgdorferi. Laboratories that use FDA approved kits (for instance, the Mardx Marblot®) are restricted from reporting all of the bands, as they must abide by the rules of the manufacturer. These rules are set up in accordance with the CDCs surveillance criteria and increase the risk of false-negative results. The commercial kits may be useful for surveillance purposes, but they offer too little information to be useful in patient management.

9. There are 5 subspecies of Borrelia burgdorferi, over 100 strains in the US, and 300 strains worldwide. This diversity is thought to contribute to the antigenic variability of the spirochete and its ability to evade the immune system and antibiotic therapy, leading to chronic infection.

10. Testing for Babesia, Anaplasma, Ehrlichia and Bartonella (other tick-transmitted organisms) should be performed. The presence of co-infection with these organisms points to probable infection with the Lyme spirochete as well. If these coinfections are left untreated, their continued presence increases morbidity and prevents successful treatment of Lyme disease.

11. A preponderance of evidence indicates that active ongoing spirochetal infection with or without other tick-borne coinfections is the cause of the persistent symptoms in chronic Lyme disease.

12. There has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme disease. However there is a plethora of documentation in the US and European medical literature demonstrating by histology and culture techniques that short courses of antibiotic treatment fail to eradicate the Lyme spirochete. Short treatment courses have resulted in upwards of a 40% relapse rate, especially if treatment is delayed.

13. Most cases of chronic Lyme disease require an extended course of antibiotic therapy to achieve symptomatic relief. The return of symptoms and evidence of the continued presence of Borrelia burgdorferi indicates the need for further treatment. The very real consequences of untreated chronic persistent Lyme infection far outweigh the potential consequences of long-term antibiotic therapy.

14. Many patients with chronic Lyme disease require treatment for 1–4 years, or until the patient is symptom-free. Relapses occur and maintenance antibiotics may be required. There are no tests currently available to prove that the organism is eradicated or that the patient with chronic Lyme disease is cured.

15. Like syphilis in the 19th century, Lyme disease has been called the great imitator and should be considered in the differential diagnosis of rheumatologic and neurologic conditions, as well as chronic fatigue syndrome, fibromyalgia, somatization disorder and any difficult-to-diagnose multi-system illness

Thursday, May 10, 2007

Dear Noah...

Today was an especially trying day for well as me I suppose. It amazes me sometimes how events in our lives parallel each other.

Today you heard your "girls" out next door and decided you wanted to go out and play. You were extremely anxious to get outside and play so finally about 3:00 or so I turned you loose in the backyard. The girls soon heard you outside and came running out yelling "NOAH!, NOAH!" all excited. You all played together very well. I provided some new bubbles and water misters and books and Popsicles. I took school papers out to sort and had you take a break from playing to work on a few things.

I went inside for a few minutes and came back and there you sat alone and crying. When I asked you what was wrong you sobbed "the girls aren't my friends anymore!"

For the past hour I have been trying to get out of you exactly what happened. You say you did not throw anything at them or do anything to hurt anyone. They did not you. You were playing construction with the younger girl and the neighbor's bigger dog came up and you are a little afraid of the dog. They were petting it and he barked at all three of you. You said you were playing and the girls had to go in and you did not want them to so you screamed really loud. You then said they told you they were not going to be your friends anymore. Of course your reaction was over-the-top and you were sobbing by this point. I told you I felt you had enough for the day. I mean your cheeks were fire-red and you were hot and had mud and dirt in streaks on your face and arms and legs. I said it was time to go in, take a break and bath and cool off.

While in the tub I tried some more to get you to let me know what happened. You said the girls said they were only "pretending" to no longer be your friends....but then changed and said they never said they were pretending." You told me you screamed AFTER they were inside but then changed it to before they went in only after they said they had to go in. SO I am still not completely sure other than the fact you ended it by telling me that when they told you they had to go in and were not going to be your friends said in your "mind" you thought to yourself you would not have any more friends again to play with and this made you scream. I imagine that is what happened. I bet they had to go in for supper or something and you did not like it and got upset and they may have freaked out by your reaction and may have even said they were not going to be your friend. BUT with no clue how devastating that can be for any child let alone an autistic child. We reviewed what you could do next time to not have a reaction of screaming which might scare another child off. When I asked you what you might do next time that would be a better choice than screaming your unhappiness with the situation you said "I could say NO!"

We have worked hard to get you to learn how to be social with other kids and play well. You CRAVE the attention and time. I now have to try to teach you that part of life means those you like or even love may not always be able to be with you, even if they want to. Sometimes they will have other things to do. THAT is very hard to learn let alone accept even for someone my age!

SO you are cooler.....tear-streaked face clean. You smell and look better and you have stopped crying for the moment. I told you tomorrow is another day and maybe you can all try playing together again. If not that it would be okay. There would be more days and more ways to find kids to play with.

Which brings me to feeling so inadequate. I mean you cannot really handle being in school all the time and yet you need more than what I probably give you here at home. I can take you to parks and such but I still think you will be lacking. I could involve you in some groups or something but still wonder if that is enough. Many times like today I just feel I am totally failing you as a mother and caretaker.

SO tomorrow we will BOTH try to have a better cry-free day. I love you more than you will likely ever know or understand Noah. Sometimes I do not always understand it myself.


Noah loves Peanuts and Charlie Brown and often checks books out from the library and reads them and laughs. He has started to draw his version of his favorite portions of some of the cartoon is what he drew recently. It is Schroeder and Lucy. I find it interesting the parts he "saw" and chose to include. The parts he did include are actually very good considering a couple of years ago he could not even draw a simple circle face, two eyes, and smile. He even put in the word bubbles and words. The story had Schroeder screaming "SAUCE" or "SAUCEPANS" to Lucy who said "IF" back to him. I have no idea what the rest said but he re-read it and laughed for hours.

Wednesday, May 09, 2007

Dear Noah.....and his girls!

Noah has 2 little girls that live next door that he just loves to play with and they seem to love to play with him. Most of the time it is with the fence in between them which they don't seem to mind. Part of me thinks it would be nice if they could play together in the same yard our yard. I might do that eventually if we can work it out.

Image Hosted by girl is about 5 years old and the other less.....maybe 3? Not sure. They are sweethearts and they both seem to be infatuated with Noah! Constantly calling "NOAH!" any time they see him out and running to him. The oldest girl will sit and talk with him too...about all sorts of things. I overheard her telling him Monday she got her pants in Paris and her shoes in Italy. HAHA. The littlest girl seems to be in love with Noah lately. She follows him everywhere and when the older girl gets too rowdy for Noah's taste.....and picks on her little sister, Noah always kisses her on her head and gives her one of his toys to play with. It is all very sweet.

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Today I tried to capture some photographs of them outside randomly playing. They turned out pretty well but all were taken via the back screen door. SO you do see the screen in some shots and of course our chain-link fence. Noah is getting so tall and lanky!

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Tonight they blew bubbles which I provided for them all and played with a xylophone book I got for Noah a long time ago. Of course Noah goes no where without his camera and he recorded him and the girls playing and they got a kick out of watching the clips. Especially the little girl.

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I also got to meet the dad as he brought home M&M cookies and asked Noah to get me so he could ask if he could have one. I said yes if he wanted one and Noah took one but never really ate it. He is very particular about some things still.

Image Hosted by Noah has a headache. I am sure after rolling around in the grass with all the weeds and allergens everywhere that is part of the reason why.

A lot of these still remain in our yard!

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I love you Noah! XOXOXO

Tuesday, May 08, 2007

Dear Noah:

I mowed Monday and while mowing you played with "your girls" ...the 2 little girls who live next door to us. You had a blast playing basketball with them in THEIR driveway. Once I got done with the front of the house I told you to come around to the backyard with me. AND you did and the 2 little girls also went to their backyard. You all had a popsicle and talked and read books and played ball. Then I gave you each a small carton of orange juice to drink. Finally it was time for your lunch and they apparently went in for a nap. Before we went in I let you run through the garden hose to cool off which you loved.

Then late afternoon, early last night we decided to take a drive and run some errands but you really wanted to go visit Grandma C. So we did. You enjoyed sitting in her lap practically sharing her chair drawing train crossing signals to show her on your Doodle Pad. She did not want you to move or sit elsewhere....always remarking about how she loves to see you and enjoys your visits and misses you so much. We did not stay long but did have a nice visit.

We cruised town a couple of times before heading home which you thoroughly enjoyed. I KNOW if I still had my convertible you would love to ride around with the top down too.

I love you Noah.


Saturday, May 05, 2007

Dear Noah......what I was doing on Friday night...

checking the pasta in the box of Kraft Macaroni and Cheese for SPLIT noodles before cooking them because once cooked if you get a plate that has split cracked noodles mixed in with the rest you will NOT eat it. I have had a few boxes now where for some reason the noodles were SPLIT and when cooked they shred apart......and though I have explained to you a hundred times that THIS IS OKAY and the fact that YOU chewing them up to swallow them also shreds still refuse to eat them.

SO Friday you decided to have some mac and cheese for your supper. HAS to ONLY be KRAFT brand

and so far you have only eaten the regular and Blues Clues-shaped. YOU DO want to try the Spongebob-shaped and possibly the Fairly Odd Parents-shaped next.

BUT....I opened the last box we had last night of REGULAR Kraft mac and cheese and found the noodles...many of them.....SPLIT. I began sorting. I cooked up some hoping they would be okay....then realized you need to also LEARN that sometimes in life things will not always be the way you want them to be.

I have worked with you for YEARS now on that concept and you have made HUGE progress. Telling you CHANGE is inevitable and can be GOOD......that it is OKAY to try different things or a different routine. SO I warned you that some of your pasta would be split and it would be okay to eat them as is. You said okay which that in itself is huge for you.

Today when we go to the store we will pick up some more mac and cheese......and try NEW shapes. THAT is also a big step for you.

This all seems so silly and weird to most people. Most would not understand why I was doing what I was doing....and to tell you to just SUCK it up and get over it. me....part of me would like to just do that. I also know that does not work with you. It is not about that. It is about texture and tastes and changes in routines and what you expect....all issues you have huge problems do most autistic people and people with sensory integration disorder. are making progress and in many cases now you do just fine with new things and trying new things. Little by little.

anyway.......I love much.


Thursday, May 03, 2007

Noah and his new Spongebob Squarepants Bedding

Yep. He decided to get Spongebob bedding for his room and it arrived today. I have to get some navy sheets for his bed and mattresses and he will be all set but here is what it looks like so far. I love it. The colors bring out the vanilla walls and they look more yellow and creamier. Like French Vanilla ice cream.

Noah seems to like everything a lot. The curtains came with tiebacks also so we can pull them open in the daytime if we like. SO next will be some matching Nick Jr. or navy sheets and pillow cases and mattress cover for his bottom mattress....and he will be all set. I would like some primary colored pillows on his bed too....but he has so much on his bed now....but I think solid red, yellow, and blue pillows would look nice on there but I am doubting he will want to give up the other ones on his bed like Bob the Builder and Sulley and Thomas the Tank Engine. Anyway......his room is finally coming together. A few things to switch around and organize and he will be all set and his room finished!

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