Monday, July 27, 2009

Dear Noah.......you got an Honor Award from school...


you have room for improvement in some areas but considering you have not yet finished 4th grade (not till the end of November first week in December) and are actually doing 5th grade Language Arts...you did pretty well scoring at least at the state level on all except writing. Which I know you need help there. That will be a long time coming probably for you and in fact...I am going to work on that the rest of the summer with you and also get you started on officially learning how to type so you can type your thoughts out. You already can type and when you DO type the things you write are much more detailed and better....because you are not so focused on the actual act of writing itself.

Today I still was not feeling well but we did a few things. However, you were so whiny today and cried at the drop of a hat over the silliest things. EVERYTHING......and I mean cry. You teared up and started losing it because you thought we ran out of bathroom cups.

I tried explaining to you today that while I understand that is part of your autism AND generalized anxiety disorder....you MUST LEARN to get a grip and determine which things are really worth your time and effort and emotions to cry about. That will likely take some time. You said you were trying and I know you are doing better.....sometimes now just tearing up, but holding back the tears, swallowing hard, and not letting loose with the dam.

Today however was another story altogether. With me feeling like I did.....it was not a great combination.

So anyway....when you saw this certificate award that came in the mail you were so happy and proud of yourself!

CONGRATULATIONS NOAH....you are doing well!

I love you!

Mommy
XOXOX

Sunday, July 26, 2009

Dear Noah....Marilyn died Friday night....

She was my aunt...your great aunt. She died from cancer. She was the only one who you ever allowed to cut your hair besides me. She was the one who first professionally cut your hair. We will miss her. You said you were thankful we got a few pictures and video of her long before she even got sick. I am too. This is how we will try to always remember her.

I love you Noah. Thursday will be the second funeral you will have ever gone to.

Mommy
XOXOXOX

Tuesday, July 21, 2009

Dear Noah.....drive-in weekend and cousin sleepover....



Well we have been busy as usual. Sunday we picked up cousin Audrey as we were going to the Drive-In to see the new Harry Potter movie. You both ran around so much before the movie your little armpits were really stinking so I told you to take off your shirt in the car and I would wipe you down with some antibacterial hand sanitizer stuff....that waterless soap. You said you were afraid to take off your shirt as people would think you were a "sex offender!" NOT sure why you thought that but after explaining things to you..you removed your shirt and I scrubbed you AND the shirt down! MUCH better smell after that!

I must say we were all disappointed in that...especially me. Noah you were too busy playing games with Audrey in the back seat and not really paying attention to the movie so much. Every few minutes you would yell out "is that the half blood prince?" To which Audrey would say, "NO!" as she had seen the movie once already but had never been to a drive-in before. We were going to see the second show Ice Age 3 but you both wanted to go home. Audrey was going to spend the night with you and we were going to blow up the big queen sized mattress and you and Audrey were going to sleep on that while I slept on the sofa. We all stayed up until 4:30 a.m.!!!!!!



You both slept in only for 7 hours so were up and ready to go again on Monday! You had breakfast at lunch and lunch at supper and supper at snacktime before bed. We went to Shawnee Prairie preserve and the park and Burger King and made cookies and played games...supper to go in the car with the windows rolled down enjoying the summer breeze (until we all smelled manure!) The windows went up fast after that!

We had a very nice visit....and you are already planning your next sleepover with your cousin Audrey! You told her you wished she could live with us forever!

Today you crashed. You slept in until almost 2:00 PM!!

You had a couple of spells the last 2 times you have gone to the park where you say your chest inside feels "cold" and you get sick to your stomach and you look really pale and you then get super tired. I called the cardiologist about this, but she thinks you should be having ZERO symptoms with your mild aortic insufficiency. SO...she thinks it might be something else....or vasovagal type symptoms. OF course with most docs it can be a crap shoot and they guess just as much as you or I do. I KNOW these are not normal symptoms for you and they were very strange. You were so tired after the episodes you could not really do much. I will watch you and if they continue or happen again I will take you to the doctor or ER.

I love you much little man!

Mommy
XOXOXOX

Sunday, July 19, 2009

Miracle Drug for Autism is DANGEROUS AND UNPROVEN...please read!

Miracle drug or junk science?

An unproven and potentially dangerous drug is being touted as a miracle drug for autism treatment. The protocol, developed by Dr. Mark Geier and his son, David, involves repeated injections of Lupron, a powerful drug used to chemically castrate sex offenders. The men are marketing their protcol across the country and have already opened up clinics. Renowned doctors from around the world have denounced this treatment as unproven, based on "junk" science, and potentially damaging to a developing child's bones and organs.

According to the Chicago Tribune, Mark Geier and Eisenstein are physicians, but neither is board-certified in any specialty relevant to autism and the use of Lupron, including pediatrics, endocrinology, psychiatry and neurology. Geier is a geneticist; his son has a bachelor's degree in biology. Eisenstein, a family doctor who preaches a message of home birth, vitamins and vaccine safety, said he treated "virtually no" autistic children in the past.

This is one of the more dangerous stretegies of the alternative autism treatments community. Parents of autistic children, desperate for help, often grasp at straws, clinging to anything or anyone that promises hope. But with absolutely no tests or studies at all on the use of Lupron in children, much less autistic children, this is just too dangerous. It's one thing to try mega vitamins; quite another to allow one's child (pubescent or pre-pubescent) to be injected with a pwerful sex hormone that is normally used to castrate. Somehow parents must get past their despair and their frustration and stop allowing the use of their children as guinea pigs.

Drugs to treat autism found ineffective

A drug that is used to treat children with Obsessive-Compulsive Disorder (OCD), Citalopram (Celexa), has been found ineffective in treating children with autism. The drug proved no more effective than a placebo when given to autistic children.

Many autistic children exhibit behaviors that look like OCD, repeated and ritualistic behaviors from hand washing to touching the same spot over and over. In addition, repetitive (stereotypical) behaviors such as rocking occur in most autistic children.

AND TO READ ABOUT HOW AN AUTISTIC MAN WAS RECRUITED INTO THE MARINES FROM A GROUP HOME PLEASE GO HERE AND READ...THIS WAS ALSO A BIT DISTURBING!

AUTISTIC MARINE THAT SHOULD HAVE NEVER BEEN

Thursday, July 16, 2009

Dear Noah: "BAM! Oh yeah baby."


You love Emeril. You have been watching him a lot again and you came up to me tonight and told me you LOVE him and wish you could go see him in person. I asked you what you like about him and you said "because he says 'Oh yeah baby,' and 'BAM!' and makes sound effects when he is cooking!"

Yes he does that. We watched one of his shows together tonight. You laughed and giggled with delight throughout the show. It was all about "tomatoes" and I have to say the recipes all looked pretty good.

I may have to try one or two...

oh yeah, baby.

BAM!

Mommy
XOXOX
(I LOVE YOU!)

An interesting article I thought I would share....comments are welcome at the end


Why Is Autism Stressful for Parents?
Thursday July 16, 2009
by Lisa Judy Ro

(Lisa Jo Rudy is the mother of Tommy, age 12, diagnosed with PDD-NOS -- an autism spectrum disorder. She is also a professional writer, researcher and consultant. Lisa and her videographer/photographer husband, Peter, live in Massachusetts. Their son, Tom, is homeschooled and their daughter, Sara, attends public school. Lisa is working on a new book, entitled, "Out-of-School Learning and Your Child with Autism," due to be published by Jessica Kingsley Press in March, 2010. She is available as a speaker for conferences and events, and may be contacted at lisa@lisarudy.com for specific details.)


On Saturday, I wrote about a new study that finds that raising kids with autism is more stressful for moms than raising kids with other developmental issues (dads were not included in the study). The researchers suggest that the "special" issue involved with autism relates to "autistic behaviors," which can really send parents over the edge.

Today, a Q&A with the researchers on the New York Times site adds a little more grist to the mill. After reading the article, though, I had to think that the researchers asked the wrong questions.

What's stressful about raising a child with autism in 2009? Sure, raising a child with a disability is hard and thankless work -- and that, in itself, is stressful. But here's my list of what REALLY causes stress for parents with kids on the autism spectrum:

* MONEY!! Even as some insurers are stepping up to the plate with some support for some treatments, others are running as fast as they can in the other direction. Families are spending far more than they can afford on autism treatment. That's stress for you.
* GUILT AND ANXIETY. There's plenty of info on the web that suggests that parents are in some way responsible for their child's autism, could have prevented, could cure it, or should provide more and more and more treatments for their child. No one can do it all -- but that doesn't mean you don't feel you should. Talk about stress!
* RED TAPE. If the researchers have never dealt with the special education system or state healthcare systems, they have no clue what stress looks like.
* OTHER PARENTS. Every support group for parents of kids with autism includes at least a few vigilantes who are determined to indoctrinate all the other parents in their point of view on autism. Just coping with their onslaughts is tough enough -- even tougher is resisting their sales pitches and guilt trips.
* THE MEDIA. Every day there's a new story about causes and cures for autism. Which bandwagon should you jump on? Is there a conspiracy to injure your child? Should you sue the vaccine courts? Will this or that new finding change everything? There's nothing like uncertainty to induce stress.
* LONELINESS. Parents of kids with autism are forced to the sidelines in so many ways. No, their kids aren't on the soccer teams, performing in the dance recitals or inviting friends for play dates. No, they can't hang out with other moms while the kids "play." No, they can't attend big, loud family events and expect a fun, low-key experience. In short, it's lonely and alienating to be the mom who is never able to just say "yes" to fun and friendship.

What do you think? Am I on track with these thoughts? Or is it really the kids with autism who are causing all that parental stress? Let me know your thoughts!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I agree with her on all her points except the guilt one. I have never really felt guilty for Noah having autism or felt I "GAVE" it to him in some way.

I think her last point about loneliness is the biggest one (other than money) that most parents and autistic kids face today. She was right on the target with that one.

Tuesday, July 14, 2009

Dear Noah....Sunday was a little overwhelming for you....


I called up my sister and asked if she would like to bring Audrey over so she could go swimming with you and play with you for the afternoon. They came over....you both swam for a little bit and played restaurant for awhile. I had already told you ahead of time that they would have to leave between 6 and 6:30 p.m. because Melissa had some things to do at home.

Then my uncle stopped by too and we all were there at the same time. When it came time for your cousin to leave...our uncle also decided to leave....everyone was leaving and you had a fit. Well you started crying...but it was a LOT of crying and it turned into you having a hard time handling the crying and handling the disappointment. You have done very well for so long....but this got out of hand. Audrey went over to say something to you at the door where you were trying to block anyone from leaving and before I could turn around I could hear you raising your voice and also grabbing her arm. It all happened so fast and I thought you bit her arm. Audrey turned around holding her arm and went to walk back to her mom and I asked her if she was all right and if you had bit her but she said you only pulled her arm. BUT you pulled it hard and I know it had to hurt her because of the shocked look on her face and the fact that she was holding her arm.

I sent you to your room and had to really raise my voice to get you to even hear me. They all left and you got even worse for awhile before you got better. FINALLY after telling you we were NOT going to go anywhere else that night after you acted like that.......you finally started to calm down. You told me you would calm down better driving in the car but I said no you would have to find something else to help calm you down here at home. You could not possibly go anywhere in the shape you were in!

You just wish someone were there all the time to play with you. Another kid. You wished Audrey could live with us. You wished all sorts of things. I felt totally inadequate...but also realized I am not enough for you. Not that I ever thought I was or would be. BUT I know you need more...more than just being around me all the time or in your room all the time or even in this house a lot of the time. More than just being around family from time to time....a lot more. SO I need to work on that and find some solutions and slowly transition them into your days.

I gave you a nice bath and washed your hair later....that helped calm you down. I fixed you something to eat and you watched a favorite movie. At bedtime you went to your own bed to sleep a bit better but still not great.

You slept for over 13 hours.

I know your body is changing and your hormones are also starting to show their presence which I am sure also adds to the mix. Tonight you came up to me to inform me you are getting hairs ....DOWN there (well you specifically said matter-of-fact where but I won't here). It was sorta cute and funny....and I said yes you would get more hair as you grew into a young man. You then showed me all the hairs on your arms and legs...but remarked about how they were all still very blond.

So we had a very exhausting Sunday night...Monday you slept in. We then went and spent the day with grandma C. in the afternoon. She took us to Captain D's for supper. You actually decided you would TRY their chicken and fries and you actually did and LIKED IT ALL and ate every bite! You even said you could have eaten another piece of chicken. Back at her house you had a bowl of strawberry ice cream!

So more new things you are trying and actually like. This is good and just reinforces what I continue to tell you....you never know if you will like something or not unless you try it!

I am going to bed. I am tired. I also need to get YOU in bed.

I love you Noah!

Mommy
XOXOXO

Sunday, July 12, 2009

Dear Noah.......hand prints on the ceiling?????!!!!!!

Last night before bedtime you told me you had something to tell me I would not be happy about.

You then proceeded to tell me that you happened to notice what looked like YOUR hand prints on the CEILING in the living room. I asked you what you meant and how your hand prints could possible get on the ceiling. I mean "were you standing on something to reach the ceiling?"

You answered, "Yes."

Okay.....like "what were you standing on?"

You said, "the coffee table."

I told you I would check for hand prints and fingerprints today when the sun was shining in the room.

Sure enough....I looked up this morning on my way through the living room...and there were your little hand prints and fingerprints all over the ceiling! (CLICK TO ENLARGE IMAGE)



NOW if this were my house instead of renting it...I would have probably just left them there....but I tried washing them off with my mop...which probably only made it worse as now it is a bit streaky and I still think you can see the hand prints.

So......I told you to NOT EVER stand on anything like that again...you could get hurt...etc.

You said you had always wanted to know what it would be like to "touch the ceiling."

So now you know...and until you get tall enough to do it all on your own again one day.....hopefully with cleaner hands.....I want you to stay DOWN off the furniture and other objects to try to reach that far up!

you are incredible......and I still love you.

Mommy
XOXOXOX

Friday, July 10, 2009

Dear Noah....update on those books you saw at the bookstore.....

they were steamy ROMANCE novels!!! Sorta like this one:




You were talking about those racy images on the COVERS! You said this one author had so many books......all covering these shelves.....and ALL the covers had half naked men and women on them......

and you of course.........want to go back and see more!!!!!! haha

this makes so much more sense......and I figured it would be something like this.

Noah......yeah.......you are such a boy.......which is a "good" thing as Martha S. would say.

I love you!

Mommy
XOXOX

Thursday, July 09, 2009

Dear Noah.......our trip to the used bookstore.....


Wednesday we went to the graveside services of my great uncle who had passed away....and your cousin Audrey was also there. She went home with us to spend the day with you while I finished work.

Before going home I took you both to the local used bookstore. Stepping inside the door you blurted out in front of the owner "Boy this place gets messier and messier each time we come!" (because this particular used bookstore she does not have everything on the shelves and some books are just in huge piles on the floor...tossed here and there).

We all really enjoyed that immensely and all took home some treats.

While standing in the checkout with Audrey....you Noah disappeared back into the side room to look at more books. I kept telling you we were getting ready to leave. Finally it was time to go.

Once outside the store on the way to the car you proceeded to tell me about some author who had written all these SEX books which had pictures of men and women doing "sexual things."

I flipped around quickly and asked you "WHAT??" I started asking the million mom questions and asked if they were men and women and you said yes. I asked if they were naked and you said only on the top. I asked if you if they were doing anything and you said "sort of." I am not sure what sort of meant and I am not sure what type of book you saw....whether it was an art book or something else entirely. This is not a bookstore that carries porn of any kind so I have no idea...yet.

You then told me you wanted to come back soon because you wanted to "see some more" and "look at them all!"

OH YES...you are very much the boy with hormones. Once back home apparently you also pulled your cousin's top of her dress out and said you could see her boobs.

sigh...........haha

well....next time I am going to have you show me what books you were looking at in the bookstore so I can see for myself exactly what they were. I cannot imagine it is anything too bad....but....who knows. We are pretty open and up front in our discussions about the human anatomy and sex so it should not be a big deal. I did find it funny that you were so excited about the books and wanted to go back and see more. Typical 10-year-old boy stuff I think.

You did well at the funeral...this was the first one you went to. We walked over to see grandpa C's grave first....and I told you that is where grandma C. would be buried too one day if she passes on. You said "if she ever dies I will really cry a lot!" I told you everyone would.

I love you Noah. I have had a migraine for 2 days...but think tonight it is finally starting to clear up. Thanks for letting me take a nap today!

Mommy
XOXOXO

Tuesday, July 07, 2009

Dear Noah........we have been busy!


We had a very nice 4th of July holiday weekend. My birthday was squeezed in on Sunday. We shared a piece of a tiny birthday cake I had purchased at our local store. It was so yummy. Of course you only ate the icing!

Ever since Michael Jackson died you have been thinking a lot. The other day you came out and asked if your daddy was now 55 years old since his birthday on June 2. I told you yes he was....to which you replied "I need a younger daddy!" When I asked you why you said "well what is he dies early?" I think the Michael Jackson death has made you think about things like this. I told you that you cannot change the age of your dad...and we talked about it for awhile.

Monday when we talked about it again.....you said his age was now fine and you did not need him to be a different age.

Saturday we went to grandma and grandpa L.'s house for a big birthday/Father's Day/Fourth of July party/cookout. We had a good time and lots of good food. You really enjoyed playing with Audrey like you always do.

Sunday was my birthday and we spent a quiet time here at home. It was a time of reflection for me since my great uncle passed away Saturday night at 10:30 and my aunt is still not doing well in the hospital. We will go to the services at the cemetery on Wednesday and this will be the first thing of that sort you have ever attended.

Monday you did not want to venture too far from home so I got a lot done around the house. You have apparently set personal goals for yourself to record exactly 25 videos per day and if you don't...well.....you can barely go to bed and sleep.

I cannot believe it is already July......the first week into July. I have still made no real time to sit down and make up a schedule for you this summer and I need to seriously do that this week.

Otherwise though...all has been going pretty well and smoothly this summer. I love you Noah...very much!

Mommy
XOXOXOX

Wednesday, July 01, 2009

Dear Noah........I cannot believe it is July 1 already!

Monday we were super busy! We spent all day running around. You were exhausted by the time we got home.

We started off with breakfast at Cracker Barrel. Then to the mall. While at the mall we came across these 2 photo booths and I asked if you could sit down and have your photo taken at this one where after your photo was taken the machine then sketched out the photo into a drawing. You were NOT wanting to do this...but I said look..for 2.00 this could be my birthday present from you to me. SO you sat there.

I then found a booth where we could both squeeze in and have little snapshots taken. You did that too. You enjoy the end results now back at home more than you did the actual process.

After the mall we went to Home Depot as you wanted to see one since you had not seen one since we lived in Colorado. Then you wanted to check out a different Big Lots.

Then lunch at Long John Silvers...and Wal*Mart...then the Goodwill. FINALLY home after hitting up Walgreens for these amazing sparkling balls......among other things.

Last night on the way home from grandma C's house you saw a man walking down the street and said "look mom....he is wearing a girl's shirt!" I glanced over and it was a man wearing a muscle T-shirt.....sleeveless tank type kind. I had to laugh...and tried to explain that to you.

Cousin Audrey came over with Aunt Melissa on Sunday for a cookout and swim in the backyard pool.

Time is getting away from me and I realize I am not always updating this as often as I want to or should.

Regardless Noah you are changing.....growing up....and I love you very much.

Mommy
XOXOX