my butterfly and my doctor

Halloween started yesterday at Reese's school. They had a party and a parade and she had so much fun. Tonight was trick-or-treat and although it was very hot and humid, the kids had a great time. Reese has learned this year that the stuff they put in her bag is CANDY. She was very excited. Noah still tries to get into everyone's house! The butterfly...at Reese's school, before the parade.

The parade. It was hilarious! She loved it.

After the parade was over, Reese continued to march around by herself.

She felt that it ended prematurely!

Mommy & Reese.

Reese and her fangs. Scary!

Dr. Noah

He looked adorable!

Our friend Isabela with Noah & Reese, getting ready for trick or treat.

Noah dug the pumpkin flashlight.

You can see part of the "Dr. Noah" on his scrubs... so cute!

Let the pumpkin lead the way!

They ring the doorbell and then start banging on the door. Nice.

After 30 minutes-- "mommy, can we go home now?" Noah & daddy stayed out so Noah could continue trying to bust into all the houses when they opened their doors. :)

Reese absolutely loved passing out candy. Each time the doorbell rang she would scream "GUESTS!!!" and run to the door. But if it was a scary costume, she would hide. :)

loot.

And she was not sharing!

HAPPY HALLOWEEN!

goodbye.

Reese is completely potty trained. She did it herself about two weeks ago. She decided one day and hasn't worn a pull-up since. She hasn't even had a mistake at night. She's just done.

Goodbye pampers and pull-ups and wipes. I won't miss you.

YAY Reese! My baby is growing up....

36.

"stop kneading me!"

sleeping in and complaining about work...ugh. "i am not a chili head!"

hazing... sorry!

"please go to burger king with me... um, Kim are you awake??"

cold spag.

psycho stalking.

dialing.

gree-phun & cell-u-lite. meow.

"the party" on fessenden and the booty.

amatos...when you used to like it as much as me.

Pushing Fern into the room upstairs... hee-hee. :)

"we should walk the bay... maybe tomorrow"

sketchy melrose..."um, I think the cat just fell out of the screen."

80s music and the adam sandler movie.

"nic, are you drowning again?" NO!

flash.

dippy eggs.

working at the track.

the litchen.

your rock solid, honest dependable advice.

moving away. :(

missing your wedding shower... :( I was so upset.

your beautiful wedding.

waking up in my darkest hour and seeing you there, next to me.

i will never, ever forget.

you have given me some of my most favorite memories.

happy birthday,

my forever friend.

tutu in the corner.

Had a "parent/teacher conference" at Reese's school the other day. She's three. She goes to school three days per week for three hours each day. And she is there to have fun and socialize. She loves it. And unlike how I always feel about Noah's schooling, I know I picked the best place for her. The staff is AMAZING and it has been a positive experience for her and for us.

We went in for the meeting with the teacher and she went over everything she's doing. There are certain criteria children should be meeting at this age and they look for these things. Reese is doing really well. She said she is very clean-- always picking up, following the rules and never needs to be reminded to wash. Aww... that's my child! She hasn't met only a couple of the criteria. One was expressing feelings-- she tends to just walk away and sit in a corner if she is upset. The teacher said that Reese picks a tutu out of the dress-up clothes everyday. She wears it almost every morning she has school. So when she is upset, she goes in the corner, in her tutu and puts her head down. Teacher said it's cute, but obviously she needs to learn to express how she's feeling. The teacher said "I feel so bad, but I do chuckle inside because she looks so cute in that tutu pouting in the corner!" :)

One thing is for sure--this school experience has been so, so different. It's just so very easy.

letter to a DJ.

Todd,

I listen to both of your radio shows fairly regularly. As a politically liberal person I don't always agree with your point of view, but I respect what you think. I respect you because overall I think you're a fair person. Until today. I guess that's what brings me to my note today. Let's be honest, I know you probably don't read your emails, that you get several and I know I won't hear back from you. But I felt as though I owed it to myself and my little boy, Noah, to write this.

Without quoting you, I heard you talking about the word "retard" this morning and how you believe it's blown out of proportion-- that people are too easily offended. Ten years ago, I probably would have agreed with you. I would have thought "what's the big deal?!" That all changed when I had Noah (now 6 years old). He was a 26 week preemie that was just one pound at birth. Due to his prematurity he has Cerebral Palsy, Asthma, Sensory Integration Dysfunction and didn't speak his first word until he was almost five years old. I pictured my pregnancy and my new baby to be what every other mom thinks...but it didn't work out that way and I look at everything differently now.

I don't have time to sit here and write this email, just like you don't have time to read it. You work two jobs after all. And my job is not only being a mother to my two kids but being an advocate for Noah every day. Noah can't just go to school with his typically developing peers--schools segregate these children. I had to fight to get him into a typical classroom. Seems silly, huh? I fight for Noah to get an education right here in Pinellas County. I spend my days taking him to speech therapy, physical therapy and occupational therapy. And on the days we are not doing that we are seeing a recreational therapist to work on swimming to help with sensory issues. And Noah is smart-- tests higher than any child in his class of typical peers. But because he is "different" he is pushed aside and made fun of.

So you see, my plate is full. For me it's not about soccer and baseball. It's about just getting him to go to school with his peers, helping him talk, getting MRIs & doctors appointments, enduring endless medical tests, going to therapies and trying to get a couple of hours of sleep at night (which is the time I cut into to write this email!!). So I don't have time to tell every person I hear say "retard" that they suck. For all the fights I have to fight this one SUCKS. I hate when someone says "is he a retard??!!" or when I hear someone say jokingly "you're so retarded" (implying that they are stupid). You have kids-- you have to know how it pains you to hear someone hurt your child.

So, I am asking you to just take a second look at this. Because, after all, I have always believed you to be a fair, reasonable person. Those of us that have kids with special needs are so very tired. We fight for things that most parents just take for granted and we work tirelessly for those first steps and those first words. So at the end of the day our lives could be much easier if words like "retard" not only weren't used, but weren't supported by the media.

I was disappointed this morning. I have heard you say the word before and yes, I probably did growl at my radio. But this morning was different. You defended every person that makes life for my little guy just a little harder. He has so many hurdles already. All I am asking is to think twice before you use that word. You may think it doesn't matter to anyone. But it does matter to this one.

previous listener,
Nicole Harrison

helicopter mom.

The past month has been tough. When I am overwhelmed with all that's going on I either write a ton on the blog or nothing. This month has been more of a "nothing" kind of month. It started with a phone call from the school telling me I had to pick up Noah. I won't get into the details of it, but it was frustrating for all involved. But most of all, for Noah. He puts his fingers in his mouth to self-regulate and they (an SLP that claims to know what sensory integration is, but clearly does not) don't allow fingers anywhere but on the table. He needs something to chew on. Yes, I mean NEEDS. So one small misunderstanding SNOWBALLED. The next thing you know I am at school very flustered and very, very upset (keep in mind, by upset, I mean ENRAGED). After that there was another incident at school that made me feel like they (teacher, aid) are trying to fit a square peg into a circular hole. He may be smart, but he does things differently. They need to accommodate his needs. Period. Ughhhh....here we go again. She seemed frustrated that Noah won't sit still, hates to glue, etc. Things that seem very trivial to me. Let's talk math, reading and science! She told me he was testing not just above his peers in every area, but way above. She said without a doubt he is leaps and bounds ahead of them. But (isn't there always a but) because he won't sit still and because he hates the ridiculous (meaningless) crafts that she wasn't sure he was a fit for the class. I'm sorry, WHAT??? Did I just hear that correctly? After one month of school you are giving up on him? Really? REALLY??? My heart sank. I know he belongs with his peers and I know he can do the work. But it broke my heart that this person that I believed in gave up on him. She told me he is the smartest kid in the class, but he is easily distracted and can distract others. So I asked one final question-- if you don't think he "fits" here, then where? And she said she didn't know... but he didn't seem to fit there or in his IVE class. He just didn't fit. And that was it. For about 48 hours I sank. I thought about it nonstop. Repeating the conversation. Thinking through every scenario. Contemplating what to do next. Thinking of homeschooling. Special diploma at this point is not a consideration...not even an option. I know what he can do and I won't let him go down that path. So after about two days I picked myself up and got really, really mad. This is not going to happen. Made some calls, set up some meetings. I am now officially the helicopter mom. I am hovering. Hovering in the classroom, monitoring things. Meeting with all therapists and every person that works with him. Setting up an IEP meeting. Calling the principal. Becoming more "involved." Time will tell how this will play out. It has taken so much out of me. I feel like I left Holland to go to school in Italy and I'm not sure Italy is a nice place. :(

Noah was scheduled for an MRI weeks ago. They did oral sedation and it did not work. What it did do was make Noah so tired, unable to walk or clearly talk all day. It was a long day and a waste of time. We had to schedule it again with IV sedation. This time it worked. And we got the results today. Nothing has changed. His cysts, fluid, etc. is all unchanged. This is good news. If the fluid increases or the cysts change it would be cause for alarm. So we are pleased and relieved.

We are waiting on more blood results and I am hopeful to have them tomorrow.

In the meantime I will keep fighting the good fight at school. They are just starting to realize how I operate and I'm sure they don't like it. And thankfully, I don't care.

basketball.

Inclusive Education Nurtures Respect for Human Dignity

http://www.mcall.com:80/news/opinion/anotherview/all-yv_rudski09212.7028963sep30,0,6914574.story

Morning Call columnist Paul Carpenter writes ''all the world is a basketball court, and we are just players,'' or something along those lines in his latest column complaining about inclusion of special education children in regular education classrooms (Sept. 13).

His basketball metaphor is as follows -- mandating special education children in regular classrooms makes as much sense as mandating short kids to varsity basketball teams. Unfortunately, his metaphor completely misses the point of inclusion, education and life in general.

You see, life is not basketball. Basketball has very specific rules and objectives: Get the ball in a 10-foot-high basket, prevent the other team from doing so, don't foul, don't travel, game over in 48 minutes, etc. Obviously, to succeed in this system, being tall, quick and coordinated is an advantage, and no amount of coaching will add height.

But life's rules and objectives are a bit more complicated. There are virtually limitless possibilities combining interests, hobbies, relationships, careers, priorities, etc., and no one set of rules defines success or how to and who can achieve it. On this court of multiple possibilities, you get points for making people cheer, hand out popcorn, and nets can also be placed 2 feet off the ground allowing short people to be advantaged as well.

Let's address some of the tired and discredited arguments against inclusion provided or those implied in Carpenter's column, which includes the opinions of a recently retired teacher, a professor no less.

Intelligence is presented as a unitary construct, fixed at birth, unchangeable by education or exposure to smarter kids. Moreover, inclusion slows down the ''better'' students, and is a wasteful cost to taxpayers since these kids, are, in Carpenter's words, ''dolts'' (e.g., Helen Keller, or the dyslexic Thomas Edison). Where to begin? Most scientists studying intelligence ascribe to the notion of multiple intelligences, and adoption studies show dramatic changes in IQ following changing environments.

As for taxes, one study reported that over a 15-year period, the employment rate of special education students in segregated settings was 53 percent while those in inclusive settings was 73 percent.

Finally, Meta-analytic studies (which average out the findings of dozens of studies to reveal patterns instead of relying on anecdotal exceptions) have unequivocally shown that the learning and performance of children in regular education are not hindered by inclusion, and these children reap benefits of increased empathy and respect for different people.

Education that does not nurture respect for human dignity is hollow. In basketball, you win if you score more points than your opponent -- character doesn't count. Applying such a philosophy to life is frankly sad. Carpenter's source wrote ''there are always those who are hewers of wood and carriers of water,'' while alluding to one's station in life being fixed by IQ, and stated ''you cannot make a rocket scientist from an individual with a special ed IQ.

''While it troubles me to respond within such an elitist framework, it should be noted that inclusion is not about altering every water carrier into a rocket scientist. Rather, it is about giving children every opportunity to develop into the person they can be, as professionals, as water carriers, as people, and as members of society.

Truth be told, inclusion will not guarantee that children with disabilities will be able to be caught up to grade level in school work. Some will and some won't. But making that the main objective misses the point. Inclusive education means that children will be included, made to feel valued and provide others with the opportunity to appreciate those who are different from themselves.

I would hope that hewers, haulers, teachers, newspaper columnists, doctors and rocket scientists are all valued as being fully human, contributing to their families and society in diverse and interactive ways, with each adding value to the existence of others.

Segregation robs us of the opportunity to develop this shared sense of humanity.

Luckily, life is not basketball. The rules of basketball ultimately require winners and losers. Inclusive education helps ensure that life provides fair opportunities, bounces and the appreciation of multiple kinds of successes.


Jeffrey Rudski is a professor of psychology at Muhlenberg College.
Copyright © 2009, The Morning Call

no wonder she left him.

"I still love her, but she's retarded, too." -Guy Ritchie on Madonna (Nov. Issue of Esquire)

I am taken back--he's an educated adult and father he would choose these words, especially for a press interview when he knows it's recorded and will go to print. An offensive choice of words. Not only for Madonna, but for his kids to someday read and for the entire special needs community.

thank you Jess.

I got this message from my dear friend Jessica. She is writing to the JCC (Jewish Community Center) to convince them that pulling the camp for special needs children, due to lack of funding, would be a huge mistake. Keep in mind, she does not have kids with special needs. She is simply an angel to those of us who do.

Please help. If you live in Columbus, or even if you don't, reach out to the JCC in Bexley and help. I can also connect you directly with Jessica.

Perhaps if we all had a little fire in our bellies, big things would happen.

Here is the letter:

I left our meeting yesterday with a fire in my belly. This is not uncommon for me. I was not blessed with the gift of quiet or realism. Years of experience should have taught me otherwise, but unfortunately I remain an optimist. Injustice, however big or small is hard for me to swallow.

With that said I am very aware of the economic situation in our county, in our city and at the JCC. I understand full well that the JCC is at the end of the day a business who has to be able to make ends meet just like the rest of us.

And yet we are faced with a crisis of epic proportion. We were informed last night that Camp Arye lost $75,000 in United Way funding. There is no denying that this is significant, but it is by no means insurmountable. We should be looking at this, not as a challenge but as an opportunity. An opportunity to inform our community about this amazing Camp - it's history, it's mission, the lives it touches and most of all it's uniqueness. An opportunity to allow people to become involved in bigger than they are. Something that impacts the life of a child.

There were many fantastic suggestions made at last night's committee meeting and there were less than 20 people in attendance and the ideas all took less than 5 minutes. Imagine what we could come up with if we really took the time really sought out the right resources.

I am suggesting that we CAN NOT DO NOTHING. Think about how many times in history people have chosen the path of least resistance and how deep the regret now runs.

There is clearly the need for both short and long term plans. I understand that even with all of our best effort we might not succeed. But we will know we fought the good fight.

In the short term we need to come up with $75,000 between now and the end of 2009 to allow parents to register their children for Camp Arye early in 2010 as has been the practice. It is clear that most of the non-profit and federally funded programs are tapped out. That is why we need to turn to our members, our community etc. and make the ask of private funds. The idea suggested last night to "sponsor a child" was an inspired one. One that would allow donations of all levels and creates a potentially ongoing source of funding.

If we can raise the $$'s needed to keep the program running for 2010. We buy ourselves 18 months to seek and apply for funding from a wealth of other agencies for 2011. One of the parents suggested that we might have more success if we broke down the needs of our camp attendees and sought funding by type of disability - i.e. funding agencies involved with Autism, Down's Syndrome, MMRD etc.

Clearly we would need a well defined plan, one that while aspirational, was grounded in reality. I am willing to work with other of the development of such a plan. However, there seems to be a deeper issue. It became clear at last night's meeting that maybe the JCC did not to want to ask it's members for support. That it might just be easier to reduce the camp to members only. Is that really our way? Is that really what we want this incredible community of families and children to take away from this - that we did not even try, that we walked away from 25 years of making a difference? As Jav Ruderman says (News Jersey Jewish Standard) "Special-needs children are our children. There is hardly a family that doesn’t have or know a special-needs child, grandchild, niece, nephew, cousin, or neighbor’s or friend’s child. Statistics confirm that one in every 100 children born in the United States has autism. Currently, 14 percent of the children in America are defined as special-needs children. As Jews, we have the obligation to care for all the children in our community."

One of my dearest friends has a child with special needs. He was born at 26 weeks gestation and on that day she became an advocate. And every day since she has had to fight for all of rights and services we take for granted for our typical children. She fights with the public schools, with local, state and federal agencies and with herself every day. She has a strength that is tested again and again and a resolve that is unwavering. But she is not a saint. She is a mom. She does what all of us would do in her shoes. Isn't it our duty to make day camp one less thing to fight for. She once shared this story with me and for me it has made all of the difference. I was landed in Italy twice. But I could have just as easily landed in Holland. And if I had, I'd want to know that Holland had amazing camps too.

When you are going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, The Michelangelo David, the Gondola's in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland". "Holland?" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy". But there has been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will always say, "Yes, that's where I was supposed to go. That's what I had planned". And the pain of that will never, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

The note has become long so I want to close with this - I clearly feel very passionate about this and am willing to devote the necessary time and energy. But my question is can we? Will the committee and the JCC board allow us to present a short and long term plan to keep Camp Arye as it was intended to be? This morning another dear friend listened to me thinking out loud about this and her response was immediate - "If I got a letter about this, I'd donate in a heartbeat and if it was a personal one I'd probably double it and if it was done in person maybe 4 times that." This reminded me that it is not just the Arye campers that benefit from this program. All of our children learn about differences and humanity and humility from the gentle immersion the get by having the Arye Campers in their midst I realize that not everyone will respond as such, but if we let the community know about this, many, many will.

Thanks,
Jessica Kahan

oink-oink.

I know many get pretty passionate about the great vaccine debate. For the record, I think traditional vaccines are a good idea; however, they should be given on a slower schedule (not 2, 3 or 4 shots at once), kids need to be older, they need to always (ALWAYS) be thimerisol free and I think pediatricians need to be more aware before sticking these kids--are they healthy, symptom free, strong immune system and haven't been injected in at least six months. But the flu shot, that's a different story. But this year is an even bigger issue; there is a seasonal flu shot and H1N1 (Swine Flu) shot. There are many views on this. Some are so scared of the virus they don't care what gets stuck in their arm if it means they won't get it. And it's those folks that scare me most. The H1N1 vaccine has not been tested. Our government skipped all testing to get it released as soon as possible. Although that may make it seem safe, that testing is needed to know how these vaccines can have life long effects. It's a bigger decision than just a seaonsal one. Be informed.

Here is the insert that the doctors get when they receive this vaccine:

http://preventdisease.com/news/pdf/CSL_A-H1N1_2009_fluria.pdf

One statement that scared me (outside of thimerisol and the many disorders that this can cause) was:

"Neither Influenza A (H1N1) 2009 Monovalent Vaccine nor AFLURIA has been evaluated in children. Safety and effectiveness in the pediatric population have not been established."

yikes.

The Washington Post also confirmed last week that the H1N1 flu vaccine will contain mercury, a toxin linked with autism and neurological disorders. Epidemiologist Tom Verstraeten and Dr. Richard Johnston, an immunologist and pediatrician from the University of Colorado, both concluded that thimerosal was responsible for the dramatic rise in cases of autism.

The H1N1 vaccine also contains Squalene Adjuvant-- this is oil. Here's what PreventDisease.com states regarding this:

Oil-based vaccination adjuvants like squalene have been proved to generate concentrated, unremitting immune responses over long periods of time according to a 2000 article in The American Journal of Pathology. The study demonstrated that a single injection of the adjuvant squalene into rats triggered a chronic, immune-mediated joint-specific inflammation, also known as rheumatoid arthritis. The researchers concluded the study raised questions about the role of adjuvants in chronic inflammatory diseases.
The difference between "good" and a "bad" squalene is the route by which it enters your body. Injection is an abnormal route of entry which incites your immune system to attack all the squalene in your body, not just the vaccine adjuvant.
Your immune system will attempt to destroy the molecule wherever it finds it, including in places where it occurs naturally, and where it is vital to the health of your nervous system, according to award-winning investigative journalist Gary Matsumoto, who explains there is a "close match between the squalene-induced diseases in animals and those observed in humans injected with this oil: rheumatoid arthritis, multiple sclerosis and systemic lupus erythematosus."

I could go on and on. It's a personal decision. Just do your research. And for the love of cheese, do not allow you or your children to get stuck with anything containing Thimerisol.

And my kids...well, they will not receive the pig shot. Docs can keep the mercury filled, oil-based, full-o-risks, toxic syringe for someone who really thinks they need it.