Making a Turner Syndrome Educational Video

NEED PHOTO AND INFO SUBMISSIONS!

IF YOU FOUND YOUR WAY HERE BECAUSE OF TURNER SYNDROME INQUIRY PLEASE READ!!

I am making an educational video about Turner Syndrome to place on Youtube etc also a site where it will be able to be ordered on DVD for yourselves and others (friends, family and doctors) It will also be shared with the TSSUS and Magic Foundation.. and it will be based on the A-Z format and I need photos and information that anyone can conjur up that fit any of the following. I will let you know when I am finished so you can share it as well. Please email to me directly at Crystal42683@aol.com ATTACHED as well as permission to use them in the body of the email thanks! Also if you have any reccomendations on important things about TS that won't fit in any of these categories. I am looking for adults and children with TS and even ts women while pregnant, women pregnant with baby with TS etc.. Baby with TS ultrasounds. For the physical appearance category no photo will be shown in the category unless I am told you would like it shown there. If no photos are submitted for a category it will show commentary and fact info only. No photos will be identified with names or contact info unless submitter request that info be included (only info will be with fitting category, explanation of photo).


A is for Appearance (will be about physical appearance webbed neck, hairline etc. so any photos showing physical appearance traits would be appreciated.. )
B is for Bones (scoliosis, short 4th finger etc.)
C is for Celiacs (Obviously you cannot show me a photo of this but maybe a photo of you if you have celiacs or information on celiacs!)
D is for Diabetes (information or photos of you if you have diabetes, photos using diabetic equipment etc.)
E is for Ears (photos of hearing aids, getting tubes placed in ears anything related to the ear parts of TS)
F is for Friendships (photos of child at social functions, TS functions, school, etc.)
G is for Growth Hormone (photos of child getting GH, or an adult that had GH as a child etc.)
H is for Heart (photos of child before, after surgery anything that relates to heart)
I is for Incidence (maybe a large group photo of girls and women with ts)
J is for Just Us (any and all photos with girls and women with ts)
K is for Kidneys (same as heart any images you have related to kidneys)
L is for Lymphadema (images of swollen feet etc.)
M is for Mosaicism (karyotype images of mosaicism or a photo of your child and information on her type of mosaicism)
N is for NLD (facts and maybe NLD testing info etc.)
O is for Oral (pics of braces, small jaw, palate etc.)
P is for Puberty (pics and info relating to HRT, etc.)
Q is for IQ (school photos, report cards, anything relating to education and learning etc.)
R is for Reproduction (anything related to IVF, infertility, ovaries, pregnancy, pregnant women with TS etc.)
S is for Skin (photos of moles etc.)
T is for Thyroid (info on thyroid or a photo if you are affected with thyroid problems)
U is for In Utero (women pregnant with baby with TS, Ultrasound photos, this includes info and retouched photos, memorial pages etc for those babies who have passed because no matter how difficult it is its a huge reality that should be shared, also pictures of newborns with TS)
V is for Vision (Pictures and info depicting vision issues)
W is for Well being (pictures of adults and older women with TS showing the life expectancy and also quality of life)
X is for X Chromosome (pictures of karyotypes, etc.)
Y is for Y Chromosome?? (pics and info of those with Y material and ovary removal etc,)
Z is for Zzzz's (sleep studies, sleep apnea etc.)

Bill of Rights for Parents of Kids With Special Needs.

I am stealing this from Bethany, whole stole it from Michelle who asked nicely for it from Ellen.

Just an FYI :-D!

We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.
* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.
* We have a right to trust our instincts about our kids and realize that experts don't always know best.
* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.
* We have a right to choose alternative therapies for our kids.
* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.
* We have a right to wonder “What if…” every so often.
* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.
* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.
* We have a right to react to people’s ignorance in whatever way we feel necessary.
* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.
* We have a right to go through the grieving process and realize we may never quite be "over it." * We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.
* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.
* We have a right to have yet more Pinot Grigio.
* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.
* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”
* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.
* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the butt.
* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.
* We have a right to talk about how great our kids are when people don’t get it.
* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.
* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.
* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.
* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."
* We have a right to wish that sometimes things could be easier.
* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.
* We have a right to push, push and push some more to make sure our children are treated fairly by the world.
(Compiled in honor of her little boy, Max, and all of our beautiful children, on June 17, 2009.)

Turner Syndrome Class Presentation and Fact Sheet

A fellow mom of a daughter with Turner Syndrome shared a class presentation that she gave her daughters school and I would like to share it here as well and she has given me permission to do so.

_________________________________________




Below is the presentation we shared with the 3rd grade classes at Madisyn's school. If you think this is something that may help your child, feel free to copy and paste and edit as needed. This was a long thought out process. We knew when the time was right to share....Madisyn's teacher was very supportive feeling it would be beneficial, and it was. It may not be for everyone, but it was a great experience for Madisyn and her classmates.

Blessings, Jen Campbell

(Jen)
Raise your hand if you or someone
you know has allergies?
Raise your hands if you or someone
you know has asthma?

(Madisyn)
Raise your hand if you or someone you know wears glasses or
has braces on their teeth?

We all know someone who has something right?

(Jen)
Raise your hand if you know someone
who has Turner Syndrome?

(Madisyn)
My name is Madisyn, and if you know me you do know someone
who has Turner Syndrome.

(Jen)
Madisyn was diagnosed with TS when she was 2 days old.
Not only am I Madisyn and Blakes mom, but I am the President of the Chicago area TS Society. Several families and I are publishing a book. Boys can not have TS, so this is why we decided the name of the book would be called "The Turner Girl Club.

(Madisyn)
I have many friends who also have TS just like me. We just had a spa event where we got to have our nails and make up done with our moms.
I brought some pictures of me and my friends and our moms to show you.

(Jen)
When Madisyn was born her cry was not very loud and her feet were swollen. This led doctors to check her blood pressure and do tests on Madisyn's heart. Doctors noticed Madisyn has 2 valves in
her heart valve instead of 3 like you and I have.
She also had a narrowing of her aorta (our Aorta is the
main vessel of our heart). (Bring a visual picture of heart)

These heart findings led doctors to do a special blood test which told us Madisyn had TS.
Madisyn is our miracle.
TS occurs in 1 out of 2000 baby girl births. (show bowl of 20000 pastel M&M's. "if all these m&m's were girls, only one would have TS )
(4 bags = 2000)

Some of you may notice Madisyn does not hang from the monkey bars outside, or that she may not keep up during running activities in comparison to classmates or that she has a water bottle with at her desk. Her doctor wants Madisyn to stay hydrated which means to keep enough fluids in her body to prevent fainting episodes. He also does not want her to do activities that cause extreme exhaustion or lift really heavy things. It might put too much strain on her heart. Instead of doing really strenuous activities, Madisyn does get to ride horses once a week at a place in Maple Park.

Madisyn sees her cardiologist(can you guys say cardiologist?) This is Madisyn's doctor who monitors her heart, once a year. He says she is doing great. She can run and play just like other kids, but knows when she needs to rest. Madisyn takes a pill every day to help slow her heart rate down, and keep her blood pressure in check.

(Miss Terry) (Ms. Lewis or Ms. Ricker)
How many of you know different kinds of language within the English language? Ie. Sign language, brail.
Does anyone know what non-verbal/body languag is? Mrs. Campbell and I are going to show you examples of non-verbal/body language.

(Miss Terry) (Ms. Lewis or Ms. Ricker)
Many people who have TS are very good at reading and comprehending books, and excel at vocabulary words. In fact, Madisyn's mom told me Madisyn can be listening to a book in her CD player and physically read a different book at the same time, and know everything that is going on in both. Pretty amazing huh?

(Jen)
Sometimes girls who have Turner Syndrome have difficulty understanding body language and peoples facial expressions. Things like crossing your arms, rolling your eyes or making a face at Madisyn can be very hard for her to interpret. It is best to use nice words and talk to Madisyn since vocabulary and verbal language is one of her strengths.

(Miss Terry, Ms. Lewis or Ms. Ricker)
Some girls and women who have TS have difficulty with balance
and judging how close or far they are to someone or something.
If Madisyn is standing too close to you and you would like her
to back up, how would you let her know what you want? Would you back away from her crossing your arms, or rolling your eyes? Or would you let her know what you want by asking her with nice words if she can back up a bit?

(Jen)
Sometimes girls who have TS feel awkward in social settings…..like when its appropriate to join in a conversation, to be careful not to interrupt in a conversation. It is admirable if you are able to notice when someone may be feeling awkward and to try to talk them through a situation and include that person.

(Jen)
When Madisyn was born she was 18 inches long. This is a bit smaller than
most babies. Madisyn has consistently been smaller than other kids her age.
Girls who have TS have trouble growing on their own. Every three months, Madisyn see's a doctor called an endocrinologist. Can you guys say Endocrinologist? This is a doctor who tells her how much medicine she needs to help her grow.

When we were very first informed of Madisyn's diagnosis after the doctor fully explained what TS was all about, he ended his conversation telling us the key to Madisyn's life will be unconditional love and acceptance. Isn't that what we all want? Whether we wear glasses or braces, whether we are tall, short, heavier or skinny and no matter what the color of our skin, we all just want to be accepted.

(Madisyn)
Every night before bed my mom or dad give me a shot. This medicine goes in my leg or hip. Some times it stings, but I count through it, stay brave and don't cry. I know it is helping me grow.

My mom and dad have taught me we are all different. It's what
makes life interesting. If everyone were the same, it would be boring.

My parents teach my brother and I that it is what is on the inside that really counts.

((((at the end of our presentation, we asked questions to see how much the students took in....it was amazing how much they understood. We handed out a small piece of candy to each student and a feathered butterfly - TS logo. We also gave each student a paper summerizing our presentation to take home and share with their families - all 3 classes were very accepting and Madisyn's teacher said she has noticed a difference in how students communicate with Madisyn. The school would like us to share this with all of the 4th grade classes at all 4 schools next year if Madisyn is okay with that.....this might be a good thing since they will all be together in junior high which are the toughest years in my opinion))))

And the fact sheet that they passed out which of course doesn't list everything or in detail as it is for children who dont need to know certain facts that may cause teasing (such fertility, menstruation etc.)

Turner Syndrome - Some Facts

Turner Syndrome = girls only. 1 out of 2000 girls has Turner Syndrome.
(this means that one m&m out of 5 huge bags of m&m which would have to be all girls would have TS)

Madisyn has many friends who have Turner Syndrome just like her.

Some characteristics of Turner Syndrome include

Specific heart problems - Madisyn has a bicuspid aortic valve instead of a tricuspid valve. (2 valves instead of 3) Madisyn sees her heart doctor (Cardiologist) to monitor her heart. Girls who have TS have an increased risk for high blood pressure. Madisyn takes a pill each day to keep her blood pressure and heart rate in check. No monkey bars or heavy lifting. Madisyn knows when she needs to rest.


Slow growth and/or short stature - The most common feature of TS is short stature. Madisyn just started taking medicine to help her grow. Her mom or dad give her a shot every night. She is brave and knows it will help her grow taller like her classmates. Madisyn sees a doctor called an Endocrinologist who helps monitor her growth.

Excellent verbal skills and reading abilities….Girls who have TS usually excel in their verbal skills. Madisyn can read one book and listen to a completely different book on CD and know what is happening in both.

Non-Verbal Language Difficulties - Non-verbal language poses a challenge to many girls who have TS. Madisyn has difficulty understanding people's body language and/or facial expressions. This can cause problems in social settings. Sometimes it is difficult for girls who have Turner Syndrome to join in on a conversation or they may interrupt a conversation without meaning to. It is best to use nice words to communicate with Madisyn since verbal language is one of her greatest strengths, and help them feel included.


Spatial-Temporal Processing Difficulties - imagining objects in relation to each other is often difficult for girls who have Turner Syndrome. This can cause problems with balance, solving some math problems as well as understanding a persons personal space. Sometimes Madisyn may stand very close to you without realizing she is in your space. It is best to ask her with nice words to please step back a bit.

The Butterfly is the United States Turner Syndrome Society logo.

Madisyn's mom Jennifer was the parent chair of the TSSMC. (Turner Syndrome Society of Metropolitan Chicago) She is proud of Madisyn. She and other families are in the process of publishing a book called "The Turner Girl Club".

Madisyn, her parents and members of the Turner Syndrome Society of Chicago thank you for helping us bring awareness to Turner Syndrome by sharing this paper with your family.

Our First Communication to Veni our Sponsored Child Through Compassion

You see here the folder that they sent to add 1 photo and basic information about us (names, birthdays etc). This folder is for our sponsored child and more often then not is the only correspondence if any they get from some sponsors. I appreciate the fact that they are donating financially but to me being a sponsor is more then just sending money and I want to be the sponsor that has a connection with their sponsor child and I hope to travel there one day! The papers are the stationary they use that has the right side available for translating. On those I wrote more in detail (more space then the folder) about our family and asked her questions about hers.

I did not ask her if she has Turner Syndrome or say that she should see a doctor and be tested because I want to see if she tells me first without me asking, if not I want to build a relationship with her before I get that personal. I did tell her that Alana had Turner Syndrome and Autism and went to a special school, was special and unique and had alot of doctor visits. I then asked her if she sees the doctor there and asked her how tall she was.

There is 5 photos (besides the one in the folder) to go along with the letter, you can send paper things like coloring sheets, bookmarks, stickers, cards etc. as a little "gift" so I took one of the sheets I use with Alana that any kid would have fun with it is a butterfly that you use dot stickers to decorate and color the rest and sent that along with stickers to do it.

Looking forward to getting our first letter from her, it can take a few weeks to a few months but I will surely blog about it when we do!

Compassion: Sponsoring a Child

Today I came across the blog of Angie, she is in INDIA right now with compassion. I have read her blog before as I am sure most the blogging world has.. Her blog led me to other compassion bloggers and I felt pulled to sponsor a child the more I read and the more pictures I saw. I chose India and decided I wanted to chose a girl because I thought that might interest Kaila more. When I saw this photo of Veni I didn't have to think twice about picking her. Why you ask? this may sound silly to some but I have become pretty good at identifying physical features of Turner Syndrome.. which this girl exhibits some of those features. Does she have Turner Syndrome? I don't know. I think there is a very good chance she does though. I have asked if she has Turner Syndrome and told them I do see signs and it should be brought up in her next medical exam just as a precaution. I will update with any further information I get about that. It is 32$ a month to sponsor a child and if you go to Angie's blog and the others she links to in her posts you will see what compassion is all about firsthand.

Child Biography

Birthday: October 13, 1999
Age: 9
Gender: Female
Region: South Asia
Country: India
Program: Bethesda Child Development Center

Personal and Family Information:
Veni lives with her father and her mother. Her father is sometimes employed as a seller in the market and her mother is sometimes employed as a seller in the market. Veni works at home carrying water and cleaning. There are 2 children in the family.

Hide-and-seek is Veni's favorite activity. In primary school her performance is average and she also regularly attends church activities and Vacation Bible School.

Your love and support will help Veni to receive the assistance she needs to develop her potential. Please pray for her.

Even more proof I am a soccer mom..

Alana started soccer on Saturday! She plays with "TopSoccer" it is a program through the youth soccer association for special needs children and young adults.

She was so excited to put on her jersey :-D.

The girl in the white sweater was her buddy for the day. She got the joy of chasing Alana up the bleachers around the track... etc. Fast course into the world of autism.. in a little short hour. The kids if needed have a buddy because they want the parents to be able to watch from the sidelines like a parent would for any other typical sports activity. I had to intervene a few times but for the most part her buddy did good and got more comfortable towards the end with having to be physical with Alana like say to get her off the bleachers!

It was cold.. and Donni was not happy about it!


She didn't want the ball in the goal she went all around it avoiding it like the plague LOL.

Making an icecream cone.. they do this at Kaila's soccer too not quite sure why again lol. I think she was pretending to eat it too in this picture.

Special Families Easter Egg Hunt and More!

Amid the chaos that was Thurs and Friday.. on Saturday it was an absolutely awesome day. Just what we all needed.

First...

We had our local monthly meeting for the Snohomish County Mother's Network, every first Saturday of the month and I wait for that day as if I was pregnant and it was my due date. A support group made up of mothers of special needs children, all abilities, all challenges, all diagnoses, all ages. This group I have been a part of since its conception 4 years ago. I have been to other support groups but none are like this one.

This one is very intimate, very private. We cry some, but we laugh more. At alot of support groups all you hear is crying, it's great to get it all out but you can only take so much sorrow, this is one thing that I feel makes me keep coming back to the Mother's Network because we do have fun, we do laugh, we do craft nights and mom's nights out, we also see each other at family and kid activities its more then just a monthly support group. In fact we are playing Bunko Friday night! We talk about our kids with special needs, we talk about our husbands, we talk about work, we talk about anything and that is unique. It is actually being fully supported, in the ups and the downs of life as it relates to our child with special needs and as it doesn't too!

While a majority of the group is children with Autism since well let's face it, it is very common. But we have other diagnoses and welcome any mother of any special needs child we even have a few that their "child" is over 18.. they can be 30 and you are still very much welcome in our group which is also a rarity in a support group! What we say stays there, no one judges us, we share things that we share with no one else but that group. We all get out what we need to, making everyone cry but at the same time we also have great senses of humor and get jokes that no one else but our group would think was funny and we laugh too. I cried, I laughed, I cried, and I laughed some more. Therapy at it's best.

Childcare is provided which makes it accessible to most mothers if they chose to seek out support. This is the main reason I wrote that letter to the "big dogs" a few days ago.. because this program and many others that are through the ARC are at a huge risk for budget cuts. Senate, House and Governor have all planned to take away the funding for a wide range of all the activities I speak of under their budget plans this year. It isn't final however until it is voted on and agreed on.. hence the reason for the letter I wrote.


THEN..

me and 3 of my other rock star moms took our 7 kids to Burger King (we were missing 1 kid too) to let them play in the play area and get a quick bite to eat.

THEN...

A local storage facility owner/manager not quite sure which.. (heard through the grapevine) has a grandson with special needs and decided to put on an egg hunt specifically for those with special needs only and their family members.

Intriguing..

You mean my daughter won't get one egg when another larger, faster.. not distracted by Easter "grass" kid gets 20 eggs? People won't look at me like why on earth is that adult helping a 7 year old get eggs? She's cheating! Adults can't help! Or if by any sort of luck it is agreed upon that she should in fact be in a younger age bracket because of her ABILITIES.. that another parent won't say why is that big kid in with the little kids.. she's cheating! sigh.

Say What?? Who's smart idea was this?

Oh yeah it was theirs. right.. got that? K good.. because you might want to send a proposal to your local storage facilities for next year.

So they had near the entrance 3 large storage "garages" open. One had an Easter bunny for a photo. They snapped the pic (as did most everyone with their own cameras.. which you cannot do at the Mall Bunny!) Then they very smartly got your address and email address so they could send you the picture.. hey you marketing reps .. if you are proposing this to a storage facility next year.. and they are not biting.. point out this is a great benefit! Getting addresses for mailing lists etc.

The next garage had regular white plastic bags and stickers! Decorate your bag with stickers anyway u want and then you get to proceed inside to find eggs!

Inside we go with a "helper".. and a list.

The list had numbers on it.. of storage units, big ones, small ones, tiny ones, medium ones. You found the storage units on the list and opened them and there was a basket of eggs in the back, each kid went in got one egg and came back out.. onto the next unit. 15 units later every kid has 15 eggs!

It was fair for everyone, but still a fun "hunt" finding which units, and the kids of course all wanted to be the one to open them up and lead the way in!

Alana did great, she went in every unit grabbed one egg. Brought it to me, then proceeded to go back in the unit.. but not for another egg. Just because she wanted to go in again lol. Not once did she try to grab more then one egg. She listened VERY well.

We did crack a joke that if our kids go to any storage facilities in the future they are going to be opening units looking for eggs.. ha ha

Donni didn't really participate because he has huge stranger anxiety lately and if you put him down he screams and doesn't move. Even at the park he stays in his stroller mostly or the swing or else he is NOT HAPPY. But Kaila got him an egg at each unit for him to enjoy at home.

It was/is a great idea and rumor has it, it will be an annual event. YEAH! Now onto picture overload...

The sun was in her eyes but it's still a cute pic!

My favorite pic of the day! She loves any full costumed thing.. as long as there is no face.. like Santa Claus.

Making her bag

Oh a pink egg! Left to right Alex, Kaila, Alana and Timmy

yellow!

Oh a tiny unit! Left to right: Jackson, Alex, Timmy, Alana and Kaila

orange!

In this picture is Hazel, her dad and Kaila.

In this picture is Rebecca and Caitlyn, Hazel & dad and Alana.

On the way out she had to say hi to the bunny again!

THEN...

I went to work.. how anti climatic right.

World Autism Awareness Day ~ disAbility=ABILITY Deep Thoughts for me.

Today is World Autism Awareness Day.

What does that mean to most? Nothing.

What does it mean to me? The world.

I don't have much to say about autism because tonight has been rather eventful...

Alana had an anxiety attack / meltdown

I am having bad anxiety all day but I have no insurance to get back on my anxiety meds I was on before I had Donni.

Someone came to our home during Alana's meltdown. I said I just got home from the grocery store (car was still on, groceries in the car, pouring rain, door open) and was dealing with a major meltdown.. he stayed outside until I told him I couldn't talk right now so I doubt he was a salesperson etc (plus he only came to our house) because our door was open and it was obvious it was beyond chaotic at that moment, any normal person doing something un important would have bolted and he remained on the walkway. He wasnt a "church person" because he was alone and only came to my house, wasn't yeilding a bible or the watchtower. So my anxiety arose that what could this person possibly want? He had a paper in his hand. Did someone call CPS on me, because if I heard some of Alana's screaming especially in the middle of the night sometimes I would be worried as a neighbor. But the autism bumper stickers and the special needs bus that comes to my door should be enough to let everyone know that if things are not normal there is a reason. Did someone see her eating ice/snow or dirt in the yard? because well with autism that can be an all to regular occurance. I could barely hear the guy but it sounded like he said I am looking for the priest family? which im sure he didn't say that.. but with all the screaming who knows I just told him to come back later because I couldn't even hear him speak. Was he someone serving me legal papers? Was he from a government agency like SSI? I highly doubt that but ya know.. He didn't come back tonight so maybe I scared him off, maybe he will be back tomorrow but if he is he better be back before 5:15 like today because I leave at 4:30 for work.

Now I am sick or having a panic attack , hot flashes, diarrhea (TMI), body freezing / shivering, head on fire.

Daddy woke Alana up to change her diaper because she fell asleep pretty early (meltdown wore her out and she didnt nap during her nap/relax time so she fell asleep right after dinner, was awake this morning at who knows what time I woke at 8 and she was awake in her bed) and he hadnt changed it before she fell asleep because she was dry but the flood gates opened when she fell asleep as usual. And he seen a huge mark on her leg and called for me to come to the room and asked what it was. I said I didnt know, but it looked like a huge dotted, lacy bruise hickey looking mark.. Not a bruise bruise but like a compression mark if that makes any sense. Then he rotated her to put her diaper on and her other leg had a mark in the same spot! I immediately thought well if that guy was CPS this surely isn't going to be a plus..then quickly realized that isn't the point.. needed to figure out what happened to her. I emailed her teacher to see if she fell (doubtful doesnt look like a fall mark unless she fell on one side then fell on the opposite side... yeah I don't think so) or if she might have been buckled/restrained in a seat or something and it was too tight across her legs?.. she actually was checking her email and said Alana was in the net swing several times today and maybe that caused it (the net swing clings to your body but like all swings it has an edge on it that might have dug into her legs?). That sounded better then my thought of maybe her nap/relax time in bed she got caught in between the rails, causing the meltdown or tight seatbelt on bus?.. but her meltdown wasn't an owie meltdown she will normally tell you if she is hurt because she likes me to kiss it. This just wasn't a hurt cry it was a pissed off for some damn reason scream. Plus with the dotty/lacy appearance the net swing seems to fit better, and the fact that her and daddy both mark easily. Daddy has frequently come home with a straight bruise looking mark from one shoulder to the other from lifting weights and letting the weightbar relax gently on his shoulders. And the mark stays for at least a day but is never ever painful, just a skin reaction.

So let's hope hers goes away in a day? and is not painful..

Mother of the year for me..

At least I had a chance before all the anxiety to print out a bunch of dot to dot sheets, cut and paste sheets, shape puzzles I am going to make into folders (got some more folder making supplies!), tracing object sheets, teacher sent home some cut and paste stuff, cutting practice sheets with bold border to cut, sticker dot letter sheets and picture sheets. Will share more on the worksheet type tasks for her desk at a later date.

What did you learn if you read all this?

Autism Lesson # 1:

We have to guess what is wrong with our kids because normally they cannot tell us where a bruise came from. Most people take for granted that their 7 yr old can simply say mom I fell at school and got an owie.

Autism Lesson #2:

It's a reality that you may get CPS called on you because of your child's behaviors, screaming, pica (eating non food items). Some of this can look like abuse or neglect from outsiders.

Autism Lesson #3:

Anxiety ranks high in priority in a house with Autism.. mine anyway.. lately.

Autism Lesson #4:

Even kids with Autism can want their owies kissed.. a very very typical thing. Praise god for those few oh so typical things that make it all better in the grand scheme of things.

Autism Lesson #5:

Be aware because its World Autism Awarness Day, okay the days almost over be aware whenever you read this post! That World Autism Awarness Day is April 2nd, and the entire month of April is Autism Awareness Month.

Autism Lesson #6:

I wouldn't trade it for the world, suspicous markings, dirt eating, wall licking, jumpin, spinning, swinging, screaming, anxiety, isolation.. Its a part of me now and will forever be and it has changed me for the better and for that I am eternally greatful.

Autism Lesson #7:

You won't get this from reading this post but if you read this at all or know me the least bit you will know I stand up for disAbility rights. If I have to write a letter to the "big dogs" by all means I will. If I have to chastize a co-worker for making fun of special needs with a special olympics crack similar to Barack Obama's, then by all means I will. Even if it risks being ousted at work.. even if he makes an ass of himself then later apologizes to me. If I have to explain for the millionth time that my child has autism and is not simply a brat, I will so I can educate those who are not as lucky as me to be gifted with the most loving child on earth. If I have to make a status post on facebook for friends to stop taking an offensive quiz then I will, because if they are friends they would apologize and think twice next time which is the whole point of disAbility rights is so we can change the way people think and act towards people with disAbilities. It's worth me standing up for, I am not talking just Autism, I am talking about all kids with special needs. It is worth everyones time. Please think about this next time you see someone in a wheelchair, having a major meltdown in the store, licking the shopping cart, flapping their arms, screaming, blowing raspberries, doing anything out of the ordinary that they are human, they are not animals and we should not treat them as such. They have thoughts, they have dreams, they notice when people are staring, you CAN talk to them.. you won't get their disease trust me. Just treat them like any other human being.. They might ignore you.. they might not even acknowledge your presence but I will say there's no way you can tell me they can't hear you.. even if they are hard of hearing.. they hear your compassion, they hear your thoughts.. They also hear those who walk by with stares and glares and comments and general disregard. Which do you want to be? the compassion or the stares?

disAbility = ABILITY

It's time to end the word..

My Letter to the "big dogs".. about budget/funding cuts.

Crystal Peek
Crystal42683@aol.com


March 30, 2009




To whom it may concern,

My name is Crystal I am a mother to three wonderful children. My oldest daughter Alana, age 7 has Autism and Turner Syndrome. We get a lot of support and beneficial information from the Parent to Parent program which is why I am writing to you today so I can explain on my behalf and others as well, how important Parent to Parent programs are the best way I can since the worth of this program is beyond words. They can not survive without funding, if that funding is lost many families including mine are losing an invaluable resource for our family and especially for our children. We do understand that there is budget cuts that need to be made but we also believe there is other programs not as vital and/or other options that can be utilized such as a state tax to resolve these issues. The special needs community is already facing budget cuts in other areas. Most likely my daughter will no longer be provided incontinence products through Medicaid. The school system including special education is taking cuts. Medicaid Personal Care may be facing cuts as well. How many cuts does it take before a better solution is found? We are already 39th in the country for our disAbility services and will only get worse. Cutting funding for our community surely isn’t the right answer.

I attend monthly support group meetings through Parent to Parent that I truthfully count as an intense therapy session, without those meetings I don’t know where I would be right now. I surely would be seeing a counselor at the very least. Without being able to afford medical insurance the only way I would be able to do that would be with the states dollars. The meetings not only help me but they also allow me to help other parents, who without parent to parent would probably never even know I existed. The networking that happens through parent to parent is like a second family to all involved, it is something that we need. It is not a want, it is a requirement we need in order to keep going some days.

I have also learned a great deal from speakers that present through Parent to Parent programs. I have learned about resources I can utilize to better our family and our child’s life. I have learned about countless treatment options for me daughter.

The activities that are sponsored through Parent to Parent such as the end of the year Special Connections Carnival are some of the only times my daughter can participate in an activity with peers, without stares and judgments and she can actually enjoy it. Her public school holds a carnival as well but she is unable to participate for many obvious reasons such as long lines, bigger more aggressive children, stares, other parents wondering why my child is shoving through the line and touching people in inappropriate places, over crowded, loud noises and most of all the safety of my daughter. All issues that are overcome or at least understood when we attend an activity through Parent to Parent. The program gets my daughter out of the house, without it the activities and places we go would be very limited. Even more so then they are now.

The Sibshop program through Parent to Parent gives my other children a chance to connect with friends that will know and understand them more then their friends from school. In the future they can invite those friends over and not have them stare and wonder why their sibling is licking the drywall. Maybe even turning them off as friends, friendship is hard for siblings of special needs children which is why this program is vital. Not only for friendship building but it is also vital because, most children with special needs siblings feel some sort of isolation and neglect. The reason being a lot of attention and activities revolve around the child with special needs. My typical daughter gets dragged along to therapies and doctor visits. I cannot take my typical daughter to the movie theatre because her sister will not stay in her seat. She doesn’t get all the same opportunities that her peers get and the Sibshop is an activity she gets to do alone. Her sister is not there, therefore she is the focus even if it’s only for an hour.

PARENT TO PARENT IS VITAL TO HER..

AND MANY OTHERS!!!

Sincerely,

Crystal Peek
Crystal42683@aol.com

It's a party, It's a party,.. stomp your feet.

First off do you know what my title is from??

Alana's birthday party was today and she had a blast. My neighbor asked the pony people for their business card, and when the trailer first got here kids came out of their houses to see the ponies but then the ponies disappeared into my backyard! Thanks to everyone that came! I took TONS of photos it will be hard choosing some to share so as usual these will be repetitive but cute nonetheless..

CLICK ON PHOTOS TO VIEW LARGER!!

Feeding a pony yummy carrots, they love carrots and apples!

Donni with Daddy.

Hitching a ride w/sis

"Party friends"

Janelle

Megan

Caitlyn

Michael

Jada

Lexi

Brytt

Kaity

Nito

The cake


Donni and Daddy again.. thats Donni's normal face...

Janelle with Donni

Opening gifts

New bike!

She got a "Donni" too!