Wednesday, August 30, 2006
I am feeling a bit overwhelmed.....wondering how it will happen. Right now I have more time cause I am only working part-time. THAT has to change in the next month.......to FULL TIME. I cannot imagine what I will be doing then.
Something will likely have to suffer. In the past it was my sleep. I tried getting by on 3-4 hours per night. I have discovered I just cannot any longer physically do that. I now aim for 5 to 6 hours per night if I am lucky. I do better on at least 5 hours....though there are days when sleeping in sure would feel good!
I guess it will all work out. Just not sure how right at the moment.
I love you Noah.......:X
but I don't want you to think I hate your grandpa...so I am taking at least that portion back.
Tuesday, August 29, 2006
I am not even going to get into it all today. I feel so badly cause I ended up screaming and yelling at you.......swatting your butt even....first time I think since living here in Ohio. I DO NOT like myself when I end up having a reaction I try to teach you to NOT have. I was at my limit I guess...though that is no excuse. You hit me.....just cause you did not want to do something we need to do. I am tired of that. It does not happen often but if something startles you or scares you or if I raise my voice too high or you THINK I am not listening to you....lately your first reaction has been to try to SLAM a door...STOMP those feet on the floor.....(which is usually followed by an immediate calm down so I allow it)...or MOST recently swatting at me. You are going to be 8 years old at the end of December. I have to NIP that behavior in the bud now....cause as you get bigger and older and LARGER it will become too dangerous. I KNOW swatting you back is not the answer...but then again it got your attention. NOT that I want to scare you to death to get your attention. I had to LIVE MY ENTIRE freaking ass life at home like that around MY dad. What an asshole....we had to walk on eggshells....scared to death we might breathe the wrong way and he would not like it and we would get the shit beat out of us or he would scream and yell and work himself up into such a frenzy he would HIT anything or anyone in his path!!!!!!!!!!!!!!!
sigh..............I SWORE I would NOT be like him ever...I MADE A VOW TO NEVER BECOME HIM....not ever with a child....or anyone else. I have times however, when I realize I DO struggle with it. What crap. THANKS so much dad for that shitty legacy.
I have explained to you that if you hit the wrong person one day they will likely beat the crap out of you. How you cannot just go around because you don't want to do something or are unhappy about something and stomp (though that is the least threatening bad behavior)...slamming doors or hitting people. You have come such a long way I am not sure why you are reacting this way lately. You did so well at aunt Angela's on Saturday. You have been doing so well. And then this.
I too am just too stressed out. Maybe you are picking up on it. I have made a wonderfully stress free environment here at home for us...though in reality how stress free can it really be if there are things piled around needing addressing? HOLY FUCK I have not even been able to get us any furniture yet. How can this possibly seem like a real home to you? We are living on carpet and lawn chairs amidst boxes!!!!!!! We are still sleeping on air beds. Don't get me wrong. I am thankful for all we have...and for a roof over our heads..for our privacy by living in our own home and not an apartment.
WHEN will I ever have the time unless I do what I preach to you and JUST DO IT?
NO one comes by...even when they know I am off work. NO ONE EVEN FREAKIN CALLS. NO ONE OFFERS to help...except grandma C. and Angela... NO ONE. What the shit does that mean? Have we become "invisible" to our so-called family? I don't get it. Have not gotten it since we moved back here...and still don't get it. We can go to someone else's house like Angela's house and if others are there they seem to be okay around us. BUT that is where it ends. NO emails....no calls.....no visits....NO DAMN INTEREST IN OUR LIVES AT ALL....and FINE if they don't want to be interested in MY life but what about yours? DON'T YOUR GRANDPARENTS WANT to be a part of your life? Doesn't anybody else? I wish I had the money to pack us back up and move somewhere...anywhere.....away from this crap. BUT is there such a place?
I have treated you in a way that is unacceptable. I KNOW screaming or yelling at you does NOT help...you get too scared...it hurts your ears...it makes you even more mad because you don't know how to deal with all the emotions inside of you.
SO....we talked. We said we were sorry to each other. We hugged a lot...kissed and cried. We talked about us BOTH using the calm down book. We talked about putting a DO NOT YELL sign on the doors. We talked about LISTENING and doing things we are supposed to do whether we want to or not. NO MORE excuses. You expressed your concerns very well. You came in crying and told me to stop talking so loud and yelling cause it hurt your ears and you just got upset and then mad at me.
holy fuck. No county help. Likely NO SSI help. Just you and me kid....and it feels like us against the whole FUCKING ASS world.
sorry for the potty mouth...sometimes it just feels better to CUSS to express how you feel.
Mommy is very sorry for the way things ended up today. I should have known we would be tested on our so-called STRESS free environment and calm.
Holy fucking crap!
I am so sick and tired of the crap.
A syndrome beginning in infancy and characterised by a lack of responsiveness to other people, gross impairment in verbal and nonverbal communication skills, and bizarre responses to the environment.
guess that pretty much sums that portion of it up
The findings, appearing in the August Child Neuropsychology, strongly suggest that autism is a disorder in which the various parts of the brain have difficulty working together to accomplish complex tasks.
The study was conducted by researchers in the Collaborative Program of Excellence in Autism (CPEA), a research network funded by two components of the NIH, the National Institute of Child Health and Human Development and the National Institute on Deafness and Other Communication Disorders.
"These findings suggest that further understanding of autism will likely come not from the study of factors affecting one brain area or system, but from studying factors affecting many systems," said the director of NICHD, Duane Alexander, M.D.
People with autism tend to display 3 characteristic behaviors, which are the basis of the diagnosis of autism, explained the study's senior author, Nancy Minshew, M.D., Professor of Psychiatry and Neurology at the University of Pittsburgh School of Medicine. These behaviors involve difficulty interacting socially, problems with verbal and non-verbal communications, and repetitive behaviors or narrow, obsessive interests. Traditionally, Dr. Minshew said, researchers studying autism have concentrated on these behavioral areas.
Within the last 20 years, however, researchers began studying other aspects of thinking and brain functioning in autism, discovering that people with autism have difficulty in many other areas, including balance, movement, memory, and visual perception skills.
In the current study, Dr. Minshew and her colleagues administered a comprehensive array of neuropsychological tests to a group of children with autism. The researchers tested 56 autistic children, and compared their responses to those of 56 children who did not have autism. The children with autism were classified as having higher functioning autism--an I.Q. of 80 or above, and the ability to speak, read, and write. All of the children in the study ranged in age from 8 to 15 years. The purpose of the test array, Dr. Minshew said, was to determine whether there were any patterns in mental functioning unique to autism.
"We set out to find commonalities across a broad range of measures, so that we could make inferences about what's going on in the brain," Dr. Minshew said.
The researchers found that, across the entire series of tests, the children with autism performed as well as--and in some instances even better than--the other children on measures of basic functioning. Uniformly, however, they had trouble with complex tasks.
For example, regarding visual and spatial skills, the children with autism were very good at finding small objects in a cluttered visual field, on tasks like finding Waldo in the "Where's Waldo" picture books series. However, when asked to perform a complex task, like telling the difference between the faces of similar looking people, they had great difficulty.
Although their memory for the detail in a story was phenomenal, the children with autism had great difficulty comprehending the story. Many were highly proficient at spelling and had a good command of grammar, but had difficulty understanding complex figures of speech, like idioms and metaphors.
"We see this with our patients," Dr. Minshew said. "If you use an expression like 'hop to it,' a child with autism may literally hop."
Other complex tasks were also difficult for them. The children with autism either had poor handwriting, or wrote very slowly. Many had difficulty tying their shoes and with using scissors.
"These findings show that you can't compartmentalize autism under three basic areas," Dr. Minshew said. "It's much more complex than that."
Dr. Minshew explained that the major implication of the finding is that when seeking to understand autism, researchers need to look for a cause or causes that affect multiple brain areas, rather than limiting their search to brain areas dealing with the three characteristic behaviors involving social interactions, communication, and repetitive behaviors or obsessive interests.
"Our paper strongly suggests that autism is not primarily a disorder of social interaction, but a global disorder affecting how the brain processes the information it receives--especially when the information becomes complicated."
In previous research with an imaging technology known as functional magnetic resonance imaging, or fMRI, Dr. Minshew and her coworkers determined that adults with autism have abnormalities in the neurological wiring through which brain areas communicate. In those studies, the researchers found that people with autism had difficulty performing certain complex tasks that involved brain areas working together. (This research is described in previous releases, http://www.nichd.nih.gov/, and http://www.nichd.nih.gov/new/releases/autism_brain_structure.cfm.)
Dr. Minshew said that such abnormalities in brain circuitry provide the most likely explanation for why the children with autism in the current study have difficulty with complex tasks that require coordination among brain regions but do well on tasks that require only one region of the brain at a time.
The researchers undertook the current study as a follow up to an earlier study they did of adults with autism. The researchers studied children to determine if the features of autism were consistent throughout life, or changed as people with autism grow older. For the most part, the current study revealed that both adults and children with autism experience the same kinds of difficulties with complex tasks.
One difference is that adults with autism appear to score higher on tests involving sensory interpretation than do children with autism. Such tests would involve identifying a number traced on a finger tip, or identifying an object placed in one's hand without looking at it. Dr. Minshew said that as people with autism grow older, they may have less sensory difficulty than they did as children.
Still, adults with autism fare much worse on tests of complex language and reasoning than do other adults. This gap in complex language and reasoning ability between the two groups is not as pronounced when children with autism are compared to other children. This is because children's brains have not yet developed these skills, Dr. Minshew said. However, the gap widens with time. As typical children get older, they develop these higher order language and reasoning skills while adolescents and adults with autism do not.
The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; and medical rehabilitation. For more information, visit the Institute's Web site at http://www.nichd.nih.gov/.
The National Institutes of Health (NIH) -- The Nation's Medical Research Agency -- includes 27 Institutes and Centers and is a component of the U. S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical, and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit http://www.nih.gov/.
Contact: Robert Bock or Marianne Glass Miller
NIH/National Institute of Child Health and Human Development
Sunday, August 27, 2006
We celebrated your cousin Alex's 14th birthday yesterday at aunt Angela's house....we took grandma C. along with us. We had a great time. This was the first time you said you would see grandpa Lincoln since you "accidentally smelled Autumn" their dog which made grandpa L. get mad at you. You originally said you hoped he was not going to be there cause you did not want him to get mad or you mad at him again. ONCE there however and you realized he was there you were happy to see him and hugged him and now you are saying you want to go to their house and you "promise to never go up and smell their dog again" to make anyone mad. That you will be very careful to be good. ALL in all you did very well. You were very polite.....played well with Audrey and without her. You minded your own hands and body to yourself (minus one time when I guess you touched your cousin Audrey's butt). You did not have any fits. You told everyone you loved them all very much. You talked sweetly. You posed for pictures. You did not have a fit when it was time to leave. You told Audrey when she got scared because of the thunder that "it is okay..it is just a storm...and Jesus is with us...don't you know that? He is with you all the time and he is a good man...a nice man..he will always take care of you". I just stood there mouth open. You amaze me with the things you say and just instinctly seem to KNOW. You are wise beyond your years without any additional help from me!
We got caught in a bad storm on the way down but it did not last long. Rained a lot while there but not during the drive home so that was great! I LOVE storms but don't want to be driving in them!
We had a great time. The food was superb from PF Changs...and she got the best cupcakes and ice cream! YUMMY!
It was an ORIENTAL/DRAGON type theme....such cool decorations. We even got the coolest party bags to take home with little gifts inside!
She is so creative and talented....always has such great ideas for entertaining and celebrating things with people. The decorations created a wonderful ambience. We really enjoyed ourselves a lot.
Today was a lazy day. I did not have to get up to work so Noah and I slept in which is such as treat now that I finally seem to be able to do it!
Followed by lazy morning...coffee....sitting at the kitchen table together checking out the ads in the paper while looking out the window and talking.....about everything. We were watching it rain.....saw the hummingbird come up and eat out of our feeder....he even few close to the window. We did some school....I introduced multiplication to you. We talked about some upcoming school projects we will work on this year.
talked about money....presidents on the money.....you got to talking about GEORGE W. BUSH....said he was our president. Said he was George WASHINGTON Bush..."he has that BUSH added onto the end of it"..you said. I told him that many did not think GWB was a very good president and did not think he should be president any more. I asked you what you thought...you said "well I think he is a good president....except when he goes to other countries". I asked why he was bad then and you said "cause when he goes to other countries he kills people".
wow....pretty much sums it all up.
We discovered a cool art teaching program which you are still working on your PC with......
I made us breakfast and you lunch. We played some games......talked a lot....you asked me how you could possibly see all the interstates in the United States since you were only a child and could not yet drive. I said someone would have to drive you or you would have to wait till you got old enough. Your promptly gave me your opinion on it....telling me "well I could get a truck driver to drive me" so that started another entirely new topic on STRANGER SAFETY.
Then the birds and the bees.....things we would be studying and doing in school this year. ON AND ON. I popped popcorn in our new popcorn popper and I LOVE IT!
I experimented. Do you know you can take BUTTER flavored cooking spray like Pam and spray on your popped popcorn to make it taste like movie popcorn minus all the fat and calories???? SOOOOOOOO GOOD! You can sprinkle cheese or parmesan cheese on top of it too......all sorts of things.....with or without the spray. I loved them all. I bagged up all the extra corn to eat off of whenever I get the urge to have some as a snack.
I made me some spareribs and baked sweet potato for lunch. Small pan of brownies for dessert and snacking (though after seeing some of my pics taken yesterday I obviously could pass on those!)
Anyway...life is sweet.....love the new place and the STRESS-FREE environment. SO nice to just be able to GO with the flow!
Today is an official PJ day for me and Noah. We have and will not even get dressed.
I just made a pot of fresh coffee...checking out the pics from the party yesterday.
I heard that my old place in Colorado got some SNOW! wow...hard to believe though it will be here too before you know it.
still lots to do....but I am just skating today......taking it easy..........
Friday, August 25, 2006
You finally got diagnosed. YEAH....now you could get the help and therapies and other aid you needed right?
WRONG! Not so fast. ...it does not work that easily. I have gone from making decent money with my husband to divorcing my husband and losing my job and now only working part-time making less than HALF of what I made before. NOW yes...I CAN start earning more money but I had specifically chosen to NOT work full time yet in order (I THOUGHT) to allow you to qualify for more helps/therapies/aid. I was wrong again!
In order for you to qualify for much of anything we would have to be pretty much destitute. We would basically have to get on welfare. Then sure you could get some aid, Medicaid too...possibly help for us with housing and a food stamp card...etc. THOSE are BIG IFs as everything is based on NEED and if I make a dime more than I should YOU would be tossed out of the loop altogether anyway!
Same for SSI. NOT Social Security..SSI. I have gone through the process. You have been determined to be "disabled". However......SSI is NOT based on what I have paid into Social Security. It also is a NEEDS based program...meaning NOT determined on what YOUR NEEDS might be...but what OUR total FINANCIAL needs might be. SO again if I make TOO much money...you would be tossed out of the loop altogether regardless of whether or not you have been determined disabled. This is confusing because I think most parents (myself included) thought it was based on YOUR NEEDS. If you were determined to be "disabled" you got X amount of money per month regardless of what I made or did not make....you know...to help PAY for YOUR NEEDS....TREATMENTs....THERAPIES....etc. I guess someone forgot to let SSI know how expensive treatment can be for a child with autism.
NOT true. It is ALL based on what I make or do not make. IF I make too much money....you would not get anything per month. If I make under 1331.00 per month GROSS.......you would qualify for perhaps something around 337.00 per month (as I am also getting child support from your daddy every month and ...in their eyes..that is also INCOME and a RESOURCE and HAS to be considered). If I make 2000.00 per month you will get nothing. So basically you are screwed.
You can only receive HELP from THIS county if you attend public school which I am not doing. SO as far as speech therapy or occupational therapy etc...you will not get any of those by this county unless you attended a public school.
As far as FOOD stamp card and Medicaid I would be extremely limited in my income total or you would be out of the loop anyway ....and I would not be able to pay bills here....so we lose it all including a home to live in.
I am thankful I had paid my rent in advance for 4 months. I wish I could afford to pay it for the next 8 months to complete my 12 month lease in advance. That would alleviate some pressure from me.
SO county helps seems OUT of the possibility now as I will be forced to return to full time work once my unemployment runs out...which is likely within the next month.
Of course this then means you will also be OUT of the loop for the 337.00 per month SSI help.......as I will then be making TOO MUCH money and have too much in RESOURCES for you to get any monthly money.
The money I will be making will and only has been paying for us to keep a roof over our heads and food on the table...gas in the car.....BASIC LIVING expenses everyone has to pay for. I have no extra left over to fork out for additional speech therapy, occupational therapy, any extra educational aids, respite care....crap I will not likely even be able to afford to pay out every month for some sort of HEALTH care coverage that is accepted in this area. AND dental or vision.
I suppose if I moved BACK to Colorado you could at least continue on your daddy's health coverage and use it out there.
I cannot believe I have spent all this time and energy...basically wasted it....to in the end find out the same things I have been finding out regularly anyway. EVERYONE is a big talker....telling us there is HELP and "oh Noah qualifies for this and this" and "you can continue to work part-time and use all the extra aid and money Noah qualifies for to live and provide for him" ALL crap.
In the end nothing has changed. I, as your parent, still have to find a way to provide for you. I have to find the way to magically work full time as a single parent here from home and also homeschool you and now also provide all your needed therapies myself.....find some way to make sure to always pay all our basic living expenses and additional medical care you may need (let alone I may need). I guess it is possible...if I maybe let's see...give up sleeping for the rest of my life?
Not to worry...it will somehow work out. I will have to work more.....and I can find ways to provide the cares you need and the education you need. We have done pretty well so far in these areas.
I am mad however that the SSI lady has basically SAT on your case for months now and only because I called AGAIN is she OFF her butt to start payments now. You will likely only receive 2 checks before I have to call and tell her I now make X amount which will STOP the checks from coming in.
I asked about you in the future. I told her I had to start thinking about things like that. You know..the what ifs......the things no one wants to ever contemplate let alone imagine as a reality one day.
BUT..what IF you are not able to live on your own or work outside in the real world one day. I asked her what if....what if...what can you count on then to help you make it in the world?
She said you would qualify as an adult then for SSI but the MOST you could ever get monthly would be 603.00. NOW you can also qualify for housing.....Medicaid...etc.....same crap...different time......but as an 18-year-old if you could not provide for yourself....you would qualify for these things based only on YOUR information and income..etc. SO you should qualify for more as you would have no income.
You could get a portion of Social Security too from mommy or daddy but we would have to be either DEAD, DISABLED or RETIRED before you could.
My hope however is the same it has always been. That somehow magically I can provide all the things you will need as you grow up beyond the basic living stuff.....so you have the BEST POSSIBLE chance at making it one day in the future and doing what you love and making good money to support yourself!
A dream.....something I want to make a reality. I don't think any parent wants to imagine their child not being able to take care of themself one day or make it on their own.
so................lots to think about on my end as usual. Problem is...I have even less time now to think....work calls.
i love you....and have NEVER regreted having you for my son.
Wednesday, August 23, 2006
You have now expanded to more than just the U.S. traffic lights. You are studying the WORLD's traffic lights. You even found a program to MAKE YOUR OWN traffic lights and highway signs.
what more can I say? You are amazing. Last night you discovered you could make traffic lights with your LEGOS! so now you are making 3-dimensional models of all the different types of traffic lights.
incredible......it truly is......all the information you know blows me away!
i love you
Tuesday, August 22, 2006
AMAZING. Almost 8 and you can now finally do it! YEAH!!!!! I am so proud of you. You are also doing very well wiping your own butt. You wipe at least 2 times on your own again and most times get it clean. This is HUGE progress.....I really believe using flushable wipes has helped tremendously with that!
Yesterday you also took it upon yourself without asking...to help do things you saw needed to be done. Like I had not yet put the sweeper away after sweeping the kitchen floor....(vacuum) so you DID THAT without me even asking or suggesting it. When I forgot to turn the TV off you did it. You are really trying to be helpful and that is HUGE progress for you!
I still feel sort of crummy today. A bit better I think but crummy nonetheless. Hopefully I will feel better tomorrow even than I do today.
I love you Noah. FOREVER I will!
Monday, August 21, 2006
today you have been coming up...telling me you hope I feel better while you hug me or hold my head...telling me to take some medicine.
THESE are such simple things...phrases we all say to each other often and take for granted......but for us...for YOU...they are HUGE! NO prompting.....you are showing concern for another.......reaching out to express it as well......and even physically trying to comfort someone else.
I keep reminding myself....you always come around.......and eventually accomplish those milestones...........in YOUR OWN TIME.
mommy loves you so much..........I will forever
Saturday, August 19, 2006
In the early rush of morning
Trying to get the kids to school
One's hanging on my shirttail
Another's locked up
In her room
And I'm yelling up the stairs
Stop worrying 'bout your hair
You look fine
Then they're fightin' in the backseat
I'm playing referee
Now someone's gotta go
The moment that we leave
And everybody's late
I swear that I can't wait
'Till they grow up
(Chorus) Then they do
And that's how it is
It's just quiet in the morning
How much you miss
All they do
And all they did
You want all the dreams
They dreamed of
To come true
Then they do
Now the youngest is starting college
She'll be leavin' in the Fall
And Brianna's latest boyfriend
Called to ask if we could talk
And I got the impression
That he's about to pop the question any day
I look over at their pictures
Sittin' in their frames
I see them as babies
I guess that'll never change
You pray all their lives
That someday they will find happiness
No more Monday PTA's
Or soccer games
Your work is done
Now you've got time
That's all your own
You've been waitin' for so long
For those days to come
Thursday, August 17, 2006
I said we should probably get you up in the morning no later than 7:00 a.m. but if I did not wake you right at 7:00 to not worry. We had plenty of time. I decided to let you sleep in for about 15 additional minutes and at 7:15 I heard you come running out to the kitchen where I was as fast as you could....you looked half scared and pale and worried and very sleepy still but said "Mommy.....I am very sorry that I am running a little late today!"...so very very proper....I got to chuckling. You were soooo cute and so worried I guess I would be mad. I said it was fine that I had decided to let you sleep in a bit longer as I was not quite ready yet anyway. As long as we got to grandma's by 8:15 we would be fine. You immediately got yourself all ready to go......and COMPLETELY dressed and teeth brushed and hair.....everything...all by yourself!
We stopped and got you hashbrowns and orange juice from Burger King. You should buy stock in BK....you eat there as often as you can get away with it! You ate breakfast on the way to her house. You got there and could care less I was leaving. I was so worked up and anxious about it I about puked on the way back to town to take the class. Grandma said you would be fine and "don't worry"....but I did a bit anyway. I figured you would be fine...especially if no one else came around to COMPETE for grandma's attention and time. As long as she was your captive audience you would be in HEAVEN as you say.
I don't think you even came to wave goodbye to me at the door when I left. Now you have to understand this was also a huge emotional milestone for me too. You are going to be 8 years old in December and I have NEVER left you with anyone else other than me or your daddy (ONLY a couple of times) since you were born. NO one has ever watched you as a babysitter in any fashion even a family member. SO this was huge for me and you though I was sure you were going to handle it much better than I. You have always cared less if I am around or not....which is really a GOOD thing I think......that you are independent in that way albeit a bit aloof.
The 3-hour class was slower than molasses and such a waste of time. I had to pay 35.00 for this?? WHAT a waste truly and nothing up to date or current and all to get a piece of paper that said I completed the class so I can get my divorce. Another way the state can make money. I won't even get into all the negatives about the class.
I was so anxious to get back to grandma's house to see how you did. I was just hopeful you did not chase after her or fall down in front of her like you sometimes do thinking it is funny but she is too fragile and old for you to get away with it now. I worried. BUT I got there...you opened the door....and worried I was going to want to leave right away. You kept saying you needed more time with grandma. For me to go away so you could have her to yourself ALL DAY LONG. For me to leave you all day and come back at night to get you. Grandma C. said you did great. Were no problem. Listened really well. DID very well. Were a joy to be around as she has missed you a lot since we moved out. I asked you " did you miss me even a little bit?" to which you so eloquently said:
"Mommy.....now I still love you.......but no......I did not miss you at all!"
I got to laughing....way to go Noah! We ended up spending the rest of the day there. You still did not really want to leave then. We had a great visit and grandma C. made a great meal. She taught me how to knit on this new circular loom so I made a baby cap in about 30-45 minutes...it was great. I will have to get me some of those and try them out! She then sent home a loaf of homemade zucchini bread...some leftover chicken and noodles and coleslaw and some popcorn. I love my grandma C. so much.
Well..I am exhausted. The county fair starts tomorrow. I have work to make up now from today that I missed. I am too tired to do it tonight. I also had to buy yet ANOTHER air bed as the one I was sleeping on was leaking again. You said to me "mommy......we need to get REAL beds"....and you would be right Noah.
I brought in some boxes from the garage. You wanted to play with your diggers and stuff in dirt but we don't really have any areas outside to dig in dirt. I suggested I fill up this huge box lid full of bird seed. Now there was a time you would never have dreamed about sticking your hands in bird seed let alone playing in it. BUT they worked on that in occupational therapy and you now LOVE to play in stuff like that. It seems very soothing to you. SO you are playing in the bird seed in the living room watching Emeril Live one of your favorite shows.
The locusts are chirping outside. I can hear them even through the closed windows and air conditioning. My make up is about all rubbed off my eyes and they are burning. I am tired but it is a good tired. This weekend on my days off I want to try to get some shelves up and put some things away. I need to get this office in order and your bedroom .....it is past time to make this house a HOME.
I also need to start planning on homeschool curriculum or figure out what we will do about school this year. Looks like we will do homeschooling again for sure. I have to send a letter to the new school super about that.
Okay...I need to get my PJs on.....i love you Noah Wesley and am SO VERY VERY PROUD OF YOU! Oh....you even told me once....that you should have used your CALM DOWN book as Grandma C. had put a plate and silverware at the dinner table for your lunch but you promptly took them back to the kitchen and told her you did NOT NEED them. I asked if you said it snotty to her or was mean/mad. YOU were not sure....said you should have probably used your book. You have been so very polite around others and me lately. I am so impressed. You are also getting very very smart in areas of social skills. Perhaps it is as simple as just not worrying so much....as all things seem to eventually come to pass in their own good time.
Now if we can get you to get those top baby teeth out so the new ones that have already come in will have a better chance of dropping down into place and not turning into buck teeth we will be set!
i love you my noah wesley.........forever
Tuesday, August 15, 2006
We went to the library yesterday and I have noticed that you do much better than in the past now while there. They changed the library around from the last time we were there which sort of upset you a bit but only briefly once I explained to you that it was something the library would do depending on the time of year, seasons, holidays, etc. It was a GOOD thing.
They now had tables and chairs in the kid's section and you immediately went and pulled books off the shelves and started to read them on the floor. I then told you that you could take the books to the table and chairs if you wanted which you did. You sat so quietly and read for a long time. I would say at least 30-45 minutes. Some rowdy kids came in and I was apprehensive about how you might react as this has many times upset you before. In fact during our last library outing a rowdy child came in and wanted to sit in an area you were. You were extremely upset by this...and proceded to voice your displeasure but a high-pitched wail with your head tilted back AFTER you tossed the book you were looking at onto the floor. I talked "calmly" to you and explained this was not just YOUR personal library but everyone's and we shared it with others. AND that was "okay". They had a right to sit there as much as you did. If you wanted to go someplace quiet to read to find a corner of the room off to yourself and read. I made you take a time out...and you did...and you quieted down very quickly. THEN off to read some more...but you became obssessed about sitting in the area you had been before...GUARDING it from anyone else sitting there.
SO the last couple of times has gone much better. I am so happy you love to read so much and do it so very well. This opens up an entirely new world for you...in fact MANY worlds...ANY world. Before when you could or would not even sit ...even for story time to now where you walk in and immediately sit down and get absorbed in good books...is a HUGE milestone for you!
I love you Noah...to the moon and back again! :XXXXXXXXXXX
Friday, August 11, 2006
Your door was shut as you now tell me all the time "I want some privacy" so I could not hear you well when you apparently were answering my yelling in at you "did you turn off your computer yet?". This frustrated you....as I guess you were telling me you already HAD turned it off...and you were already even IN bed! You were almost scream/yelling this to me but I could not make it out as your door was shut. I said you needed to get up and pee one more time before going to bed. SO you did but when you came out you were so frustrated and crying.
"DIDN'T YOU HEAR ME? I ALREADY TURNED OFF THE COMPUTER AND I WAS IN BED". I said no I did not hear you as the door to your room was shut...and you just got madder and madder and more frustrated. You then lost it at least momentarily. I could see the anger welling up inside you and you just had to let it out. Now we have worked on HOW to release this frustration for over 3 years now. You still have your "CALM DOWN" book that you used for a couple of years which basically taught you to stop....take 5 deep breaths and calm down.........then to think of something else you could do instead to rid yourself of those bad feelings. We used pictures with velcro backs ......the book was not long and easy to read. You could read it and look at the pictures and work through it and it did work wonders with you. SO NOW finally it comes almost naturally to you as to what to do.
You immediately KNOW you are not behaving in an ideal manner or reacting OVER THE TOP....so you JUMPED UP AND DOWN and stomped on the floor really hard 5 times in a row and tossed a book down hard on the floor and then dropped to the floor in a fetal position as you usually do and you covered your head and face so I would not see you (even though I still really can). You took a few moments and I went about my usual business not placing too much attention on all this. I have found recently if I do not place too much attention on these temporary outbursts you get over them quicker. SO I said that everything was fine...and that you would need to pee before bed....and I picked a few things up in my room and went about my business......you then just came over and started to hug me and cry and cry....hugging me so tight. I imagine your world is extremely frustrating and confusing and over-emotional most days and nights.
I said it was OKAY that I could not hear you cause the door was shut and I was sorry I did not hear you but that everything was fine now.....you still had to come out of your room to pee....so it did not matter....no big deal.....and to always remember to CALM down first when you get angry or frustrated about something...and not to yell...but to TELL me things. You were very clingy but soon recovered...in fact this entire episode did not even last 5 minutes....far far less time than a few years ago when this could have gone on for a long long time...I mean hours...or you would rehash it all day long.
SO yes....you are growing up...becoming more mature....handling your feelings a bit better even though many things in our environment can still be triggers for you.
I love you my little man.....always have....always will.
Thursday, August 10, 2006
Wednesday, August 09, 2006
So. We had to run to Lowes last night..one of your most favorite stores. You always have to check out all the appliances when we go and last night you also had to check all the riding lawnmowers out. Back in the plumbing section this man came up to you and said "are you causing trouble" while you were checking out the toilets on display. You acted sort of shy about this and a bit anxious. You immediately covered your ears with your fingers and came running over to me. The man of course not knowing any better came over and tried to talk some more saying he was only kidding. Next thing I know you are IN the shopping cart...wanting me to push us away from that area. Here came the same man....trying to blow up a yellow balloon to give to you. Now normally you like balloons and take them but there was something about this man and the balloon you wanted nothing to do with. He asked me if you would like a balloon and after I asked and you said NO I said to the man "no but thanks anyway".
I guess that did not REGISTER with this man as here he came....kept following us.....still stretching the balloon and trying to blow it up to give to you anyway. I went on down to the furnace filter section.....and you were panicky. Said he was coming after us to go away and go away NOW. You had your fingers and hands OVER your ears and head down in the cart trying not to be seen. Here came the man who had no clue once again. He made a big mistake then when he shoved the blown up balloon down into the cart WITH YOU as you looked up and smacked the balloon back out of the cart....held your head backwards and screamed and started to cry.........still with your fingers/hands over your ears. The man ONLY then finally acted like he "got it" that you did NOT want a balloon said to me "oh I am sorry" as you sat there and cried....sobbing...I kept on talking to you about furnace filters trying not to place too much emphasis on you crying or why. I KNEW why....you had told the man NO...I had told the man NO....and he still kept at ya. Course I LET you experience all that as a SOCIAL SKILLS lesson.......to see how you would respond and how to redirect you if you responded improperly. In this case I say you did everything right but you encountered one of countless others in the world who choose to ignore what you say and do what they want regardless...almost like they are trying to set you off and make you mad. EVEN once he upset you....and I sort of ignored the whole thing and kept talking in a peaceful voice about something else.....you settled back down pretty quickly. I was soooooo thankful though this episode was one of many and not totally surprising. It has been a long time since this type of thing has happened though they still do from time to time.
Anyway.......we got new furnace filters and a hose to add onto the PVC pipe outside by the air conditioner at home to drain the water away from the house's foundation. YOU did great and came out and helped me. Helped me water the plants again too. I have tried giving you chores here at home and you are eating that up. You go on and on about how you are getting to be a big boy and stronger and can do more! You will many times tell me "let me try"..."I am stronger now" and I do. This is all great!
Today I mowed the yard......had to practically run with the battery mower to get the entire yard mowed on one charge but I did it. Today is a pretty nice day...much cooler and not as humid outside.
I got your piano out today and let you play with that. It has been a long time since you got to play it. I need to concentrate this next week or so on getting your room together and the office area together and ready for school! I told you if you wanted to be an engineer and design houses and roads one day you needed to do very very well in school! ONCE I said that...it was like that was all it took. NOW you are wanting to start school as soon as possible and start learning.
YOU are like a sponge and soak up stuff so quickly...it is simply amazing.
Anyway...I have some work to finish. I love you so much Noah!
Friday, August 04, 2006
Sorry...something about this did not seem quite right all along. I had studied this bill over and over many times trying to read between the lines. I feel like such an idiot for not taking the time to DO my homework on this and find out all the facts.
The fact that the "Autism Speaks" organization supported it bothered me a good deal because I do know how they feel about "ethnic cleansing of autistics" for lack of better wording. BUT they have done a few things out there for awareness of autism albeit usually very very extreme negative awareness reflecting a bad light on kids with autism as something you DO NOT want...again to support their stance on just eliminating the possibility of any kids being born with autism or sterilizing those already diagnosed so they one day would not be allowed to have children of their own because the risk of them possibly having another child with autism would be "too great".
Same for me...would I even be able to get coverage if I became pregnant now? Because I have one child with autism already? I may be forced one day to become sterilized (if Mother Nature doesn't take care of that on her own before then) so I could not possibly have the chance at having another child for fear I may have a second autistic child and the cost of that child would outweigh the so-called benefits of having that child?
WHO gets to decide this crap? Who gets to determine MY fate let alone my own son's fate? When I was pregnant with Noah I was told to get an amniocentesis. I asked why. I was told to determine if the fetus had any abnormalities, anything "wrong" with it. I promptly told the doctors and nurses I had NO desire to risk the well-being of the fetus by performing an amniocentesis. I would accept the child as they were regardless of whether or not it had Down syndrome or any other disability. Noah was born. What more can I say? I love him more than humanly possible. He has been one of the very best things that has ever happened to me. He has changed me forever and transformed me into a more caring and compassionate and ACCEPTING person.
Who gets to play GOD in deciding who will or won't be born? What is best for us all? for me? for Noah? for all the thousands of other Noahs out there who are not even born yet??
Sorry but I cannot and will not support anything that may even remotely allow these things to come to pass in a HIDDEN meaning in a fine line sentence in a bill purporting to be GOOD for our autistic kids. Yeah they almost had me going too. I will beat myself up for this for many weeks to come. BUT I am now smarter and will be an even stronger ADVOCATE for my son's acceptance by hopefully increasing the AWARENESS of autism in our limited society. I will no longer rush into things quickly and grab for the quick fix. Hell I am not even looking for a FIX of any sort. I don't want to FIX Noah. I want people to ACCEPT him. To allow him into their worlds.....to do things with him...to allow him to learn things HIS way....to not be made fun of by others or shunned. AND some increased RESPITE care to the parents of autistic kids would be a huge plus!
anyway.......yank my name please. I am on the other side of the fence now.
I do appreciate all your concerns and helps.
yes I truly am just striving for acceptance and awareness...I have never sought a CURE for Noah's autism. I feel like such an idiot....I came so very very close to supporting something that says it like it does in the title...COMBAT AUTISM...what do you think when you read that? I see FIGHTING against autism...stamping it out! A big SOLDIER SHOE coming down and STAMPING/eliminating anything and anyone to do with autism. NOT what I wanted to do......and after reading some disturbing articles and findings some supporters of the bill that I already KNOW DO support eugenics....I can no longer support this bill. If you would like to strive for AWARENESS and ACCEPTANCE of our autistic kids "just the way they are" please use this convenient link and send a letter to your senator to vote against this bill.
There is no in utero test for autism as there is for Down syndrome. As I have previously told “BreakPoint” listeners, that testing, combined with abortion-on-demand, has made people with Down syndrome an endangered population. By some estimates, 90 percent of these people—who, if allowed to live, can live happy and healthy lives—are aborted.
In the absence of such a test for autism, researchers at University College Hospital London are settling for what they call a “close enough” solution. They have applied for permission to use pre-implantation genetic diagnosis, or PGD, to screen out male embryos in families with a history of autism.
Their “logic” is that since 90 percent of all autistic people are males, their testing would allow families with autistic children “to have a daughter free from the condition.” Of course, they would have also killed males who were not autistic. Talk about wholesale gender cleansing.
The critics are not convinced. Simone Aspis of the British Council of Disabled People drew the what-should-be obvious inference: “Screening for autism would create a society where only perfection is valued.” In the brave new world of the researchers, it is reasonable to fear “that anyone who is different in any way will not be accepted.”
Here in the states, bioethicist Ben Mitchell said that “if unborn children are being eliminated for a genetic disposition to autism, no one is safe . . . Today autism, tomorrow intelligence below 70 I.Q., the next day male pattern baldness. When will this madness stop?”
The only way to avoid this is to understand that we have no business deciding “who should live and who should die.” And that’s exactly where proposals like this are leading us.
Once a disability is “diagnosed” in utero, women are subject to enormous pressures to have an abortion. According to a recent Business Week article, there’s even a name for women who refuse to have an abortion in these circumstances: “genetic outlaws.”
Despite all the rhetoric about “alleviating suffering,” the bottom line in targeting the disabled in utero is the bottom line. As Business Week puts it, “the social cost of accommodating [their] birth is increasingly being seen as exceeding [their] worth.”
Oh my! This utilitarian view of life inevitably leads us exactly where the Nazis were creating a master race. Can’t we see it?
My heart goes out to parents who are raising autistic children. I know what they face because my daughter is raising a 15-year-old autistic son. But I also know firsthand the joy and blessing these children can bring into our lives. The answer is not to play God and keep them from being born—rather we need to help them and their parents. That’s what “alleviating suffering” really means.
For further reading and information:
Human Dignity in the Biotech Century: A Christian Vision by Charles Colson and Nigel Cameron, eds.
Tom Strode, “Bioethicist: Not just autistic at risk if sex screening approved,” Baptist Press, 29 June 2006.
Virginia Bovell, “We don’t need to wipe out autism . . . we need to care more,” Daily Mail (London), 19 June 2006.
Tuesday, August 01, 2006
1. Be encouraging. When you visit, say positive things like "You are such a patient parent."
2. Offer to baby-sit. This means learning the family's routine and developing the skills necessary to care for an autistic child. Consistency is necessary to make the transition between parent and baby sitter an easier one.
3. Assume the role of advocate. Help the family find educational and respite resources in their area. Follow up with necessary paperwork and appointments, ensuring that the child receives whatever benefits he or she is entitled to. Bring additional resources to the family's attention.
4. Help with the mundane, everyday chores. Doing laundry and making meals can become stressful for a mother who is home all day, every day, with an autistic child.
5. Pay attention to the autistic child. Develop a relationship with her. Often, people outside the immediate family tend to ignore the autistic child because of his or her special needs.
For more information about how you can help a family cope with the challenges of raising an autistic child, call (800) 3AUTISM.
Tips from eHow Users:
Comments by Meghann Arnold
Don't say things like "God puts kids like this in situations like this to teach people" or "You must be such a special person to be able to cope with this". Parents of Autistic kids don't have the option of whether they can cope with it or not. They are parents, just like everyone else who has kids, and they go through the same feelings as other parents, so saying things that make it seem like they're different in some way to average parents just makes it even more obvious how isolated society has made them. Say things like "When Timmy was potty training, we had problems with this and this and this." It makes things look a little more in perspective. A parent is a parent, regardless of the child's situation, and they all love their children.
How to deal with an autistic adult by eHow Friend
Autism is not a childhood illness, it does not fade away. As a high functioning autistic adult -Asperger's Syndrome/ASHFA, with an autistic nephew, I find that I need all the help, support, and research materials I can find. But I am 28 and my nephew is 15 and a lot of what is out there is for children.
As to helping autistic adults, perhaps it is helpful to first understand that we never really socially mature but that does not mean that we are intellectually stunted. Many of us have normal or higher than normal IQs and so of us are even of genius level, despite our social failings. This can be misleading because if one of us functions as an architect, that does not mean that we can go out and shop for ourselves. But, this is nonetheless expected.
Relationships, be they familial, interpersonal, or intimate are especially difficult since many of the things most normal people take for granted such as saying "thank you", eye contact, physical boundaries, and so on are frequently foreign to us.
So, the best thing you can do is to become as familiar as possible with how autism manifests in both adults and children, and with how it affects each autistic as an individual. And there is a lot of variance from type to type, ranging from the popularized Rain Man symptoms of Kanner's autism to the far less extreme social awkwardness of ASHFA. I am a published writer, and my nephew is a computer technician, but I cannot leave my home unescorted and my nephew cannot ever be left alone.
The next best thing is to remember that we are not normal. No matter how well we cope, we do not see the world as others do. Be very patient with us, communicate in a clear and simple fashion, and above all know that although we are largely oblivious to body language and most other socio-cultural gestures we are not unfeeling.
Prompt treatment is also important as the sooner the individuals needs are recognized and met the better off their chances of functioning in society.
Some autistics will never advance, some will learn to cope, some will even excel but all depends on prompt recognition of their personal quirks and desires. So if you think you may be autistic, know you are autistic, or suspect that someone you know is so blessed (or cursed depending on your point of view), then learn all you can about the disorder and the person, seek professional help from someone who is trained to aid such individuals, and try to be as patient and supportive of us and our families as you can be.