Camp Twitch and Shout

Camp was always my favorite season. As a seasoned overnight camp camper and counselor-summer for me IS camp. When Z was diagnosed with TS I thought this part of life was just one of the things we would have to give up. Boy was I wrong. After Zl watched Front of the Class I googled Brad Cohen and stuff about Camp Twitch and Shout came up. My jaw dropped and I got giddy! Z was going to camp. Only thing- as an Orthodox Jew, how would this work? So I facebook messaged Brad and asked him, could we make this happen? He responded that I should contact the director. Hailey is a special person who to me is a superhero. She brought the magic of camp to my child. 
Sending him on a plane all by himself last summer was one of the hardest things I have had to do. I put him in the hands of people I didn't really know. He came home and said something very simple but powerful to us, "I was normal at camp." He had had a devistating year in school and my happy and full of life child was lost. Camp gave him back to me. So, the day applications came out, Z insisted I send it in. His teachers said that week was one of his best of the whole year. This year three Philadelphia area kids were going including a boy close in age to him. 
Facebook and twitter have been a real treat as this year the staff has given us a window into their week. So as the kids are fishing, boating, swimming, having OlympTics, talent shows, dances, and more we have gotten to see pictures posted soon after. I get to see the huge smilies, the action pictures of him interacting with his peers, and him just getting to be a "normal" kid. I get to see my child who I know and love being seen the way I see him by others. Something that doesn't seem to be usually. 
Camp has truely become a family. This year other moms reported back to me after they dropped their own children how he was doings- he was being outgoing, charming, and helpful!!! His bunk, Blue-1 even won cleanliest bunk twice this week! As I told his doctor,what nachas (joy).
Next summer F is supposed to go as well.  The day she got her diagnosis she didn't get upset or scared, she asked if this meant she would get to go to Camp Twitch and Shout as well!  She can't wait to go.  She has already started counting down to next summer when she will be 7 and old enough to go.  G-d willing, there will be camp- funds are short.  Z and his bunkmates are trying to raise funds.  If you can, please help them out!  http://www.gofundme.com/camptwitchandshout

ML's upshern is coming!

I have to admit planning for ML's upshern has been so much fun.  We are doing a night dessert upshern for logistic reasons. ML has EE- better known as eosinophilic esophagitis. Right now he is stable on an elimination diet so he can not have a number of foods.  He avoids all the top 8 allergens (dairy, soy, wheat, tree nuts, peanuts, fish, shellfish, and eggs) as well as barley, sesame, and white potatoes.   ML has never had a safe cake. I have tried and failed so many times!  So, I was able to arrange the bakery Heaven Mills in Buro Park to make a safe cake, cupcakes, and choc. chip cookies. I am doing all the other desserts. We are not expecting a huge crowd but a nice sized crowd. Maybe around 60. So far I have blue cotton candy (ML's favorite!), choc. covered marshmallows on sticks (all homemade), apricot quinoa chews, blueberry spice crumb bars, spiced sweet potato blondies, pumpkin pie brownies, rice crispy bars, cookie dough scoops dipped in choc. on sticks, and cut fruit. I think its plenty. At least I hope so! 

Shavous

One big custom on Shavous is to eat dairy meals.  In a family with 2 kids allergic, 1 lactose intolerant, and 1 who dairy is an EE trigger thats almost a joke.  Oh, and mommy avoiding it cause of nursing.  Over the years I have gotten good at faking it.  For the first time ever we decided to attempt the dairy meal at shul once the Rabbi told me I could bring food for the kids.  This is the one community meal that has scared the daylights out of me.  Hot dairy, cold dairy, frozen dairy, melting dairy, dairy all over little kids, dairy all over adults.  EEEKKKS!  Let me run and hide my daughter!  

When F was about 3 she was at shul one Shabbos and she was playing with a little baby.  She has been very allergic since an infant but that day we learned how beyond sensitive she was.  I was home with baby ML and my husband had taken the boys and F to shul with him.  The baby had drank a dairy bottle of formula which we did not realize was dairy.  His mom had cleaned him up afterwards as well.  Half an hour or so later F was playing with him.  The mom noticed her hiving up and got my husband right away.  I was gotten and she was epied.  We called 911 and were whisked away after 2 epis, prednisone, and benadryl when the ambulance finally arrived.  An amazing neighbor later brought me ML to nurse.  They had her on oxygen to help her breath, ivs, and she was puking.  The reaction started in her eye.  After playing with the baby whose hands were dry she had rubbed her eye. The dairy protein got into her eye's mucous membrane.  Her eyes rolled back a few times but thankfully she did not loose conscientiousness.  So a Shavous meal we thought would never be possible.

MEB as well is allergic though we don't know if she will be as sensitive as F.  We eliminated it at 10 days old as a suspicion.  Two weeks later I slipped and had pizza.  Our wonderful allergist Dr. W at Hopkins told me to eliminate it for another four months and try again eating it with high hopes that she would be fine by this point.  

T loves dairy!  LOVES it.  As a baby couldn't get enough of it.  We had him scoped for other reasons, thinking he had EE like MEB.  That came back negative however the test DID reveal that he is extremely lactose intolerant.  UGH!!!!!!!!  The one food group I could count on.  

ML for now is not allowed to have dairy.  We don't know if it is a true trigger for his EE but it was on the list of things we had to eliminate and eventually one day might get to trial back in his diet.  For now though we have to strictly avoid it because it could be a true trigger.

So, I made non-dairy mac and cheese with my daiya pareve cheese, pareve cheesecakes galore with toffuti cream cheese, ML safe lasagna, and lots more.  The kids were so excited.  As well I got them bagels from Heaven Mills in BP, NY.  Boy were they excited.  For the ice cream party for the kids after the 10 commandments we brought our ever so amazing SoDelicious vanilla coconut ice cream.  The one and only ice cream F can have not homemade.   

Off we went to shul.  We sailed through the ice cream party.  No reaction despite the loads of ice cream clad kids.  Double wammy for F as she is also deadly allergic to chocolate.  They had their ice cream slightly away from the rest of the group and off they went to the playground.  Kids were wiped down before they went off to the playground.  Epis were kept close.  Not taking to many risks!  The meal came.  We put the kids at the end of a table.  We decided it was the best time to trial dairy with MEB.  It had been 4 months.  So, I made that one dairy meal worth it!  Boy did I enjoy it.  Not a single hive showed up to play, no breathing issues, no swelling, no eczema flares, no reaction with F.  Amazing!  Even a year ago I never would have thought to attempt it.  In part she has grown and matured so much.  In part the shul has become to amazingly careful and understanding.  MEB did react.  Congestion and more.  A clear cut fail.  

It was an awesomely successful day though even with MEB reacting.  F was able to navigate the real world- people will be eating her allergens around her for the rest of her life.  She was able to do it safely and with maturity.  MEB gave us an answer.  No more, is she really or isn't she.  Yes, she is.  She still has time to outgrow and maybe she won't be as bad as her sister.  But hey, answers we can work with.  ML was a mentch and didn't try to sneak cheese or other dairy which is becoming a problem with him- sneaking foods he can't have.  T while sad didn't have a panic attack nor did he break down in tears which has happened before when he feels left out.  They had their food which they declared Top Chef worthy and had a grand time playing in the playground with their friends.  

We can do this.  

Reading

I am a bookaholic.  I read through books faster than my husband can buy them for me.  I read nursing, cooking, in the bathroom, when I should be sleeping, etc... basically I spend a lot of time with a book in my hand.  I love learning about others, creating imaginary worlds, and having friends who I can rely on.  Its been an interesting ride with the kids so far considering reading is so much a part of my life.

Z we were told when he was five has a language processing issue.  Basically it all goes in and gets locked in his brain and we haven't really found the key to help unlock the amazing amount of knowledge he has.  With four years of language therapy he is making amazing process.  When we had that first meeting after testing we were told he might never read.  It was devastating news for me but I knew he was a hard worker and lets show them how wrong they are.  He slowly DID learn to ready but it was frustrating.  A lot of tears and a lot of rages later he discovered Out Of Egypt which is a graphic novel about the Passover story.  He fell in love.  He found it soothing so when he felt out of control, he would take it and start reading.  Our copy has been read so many times its about to fall apart.  We have now gotten him the other two books by the company which are getting just as much love.  Still, while he was doing better he was not reading on grade level.  He also had a huge anxiety attack when a book had chapters.  So, right before Passover this year I took a gamble.  I noticed he liked the simple children's books I had put on the kindle we had gotten for Channukah.  So, for his last book report I put the book on the kindle instead of getting him a regular copy.  They were reading historical fiction so I put All of a Kind Family on the kindle and let him know it was one of my all time favorite series of books.  He was so excited as he read more and more of it because it was about a Jewish family and he could relate.  Before he knew it he was half way through the book!  Only at this point did I get a copy through our public library so he could read as well on Shabbos and at school.  It was the hammer than broke the brick wall that was stopping him from reaching grade level.  Today Z came to me and asked if I could put Harry Potter on the kindle.  He knows its a hard book but he is excited to ready it!  So I did and he is two chapters in already.  Amazing!

T took naturally to reading.  Despite what his teachers say, he has been reading since mid-K at home and loves reading.  The only thing is, T only loves reading Dick and Jane.  He is completely capable of reading harder books.  He does at home because I don't let him have the Dick and Jane books until he has read a bit of a harder book.  Who knows why he is stuck on Dick and Jane.  It could be because he does not like to work hard and it is a bit of work for him to read other books.  He is jealous of Z though reading on the kindle touch given to us by an amazing family friend.  So, I am fully taking advantage of it and made him a deal.  If he reads harder books, he too can read on the kindle.  He did follow through a bit in the car on the way back from Chicago.  We shall see if it continues.  Will he be reading Dick and Jane for the rest of his life?!

F is a completely different character.  She loves books as much as me.  She never can get enough when I read to them. Since she was  tiny she would take books in her room and look through them pretending she is reading them and making up stories.  When she got a little bigger and knew some letters she would sit and point out the letters.  Now that she knows all the letter sounds she is desperate to ready.  So, Passover I took one of T's Dick and Jane books despite his screaming and crying and sat down with F.  She rocked it. F though has a tic where she gets stuck on words she has heard or is saying and repeats them over and over.  Never in a million years did I see what was coming next.  She was sounding out a word- c-o-m-e, come, and repeated it.  I told her F, its good, you said it correctly.  For over half an hour over and over c-o-m-e, come.  When she finally got out of the tic she still kept going.  Until the next time it happened.  She has tried reading a number of times and this tic is front and center.  She is frustrated beyond.  She is determined though- she loves books way to much.  For now, the text to speech on the kindle is her new best friend.

Bullying

     Bullying has been a hot topic and big buzz word lately. Everyone is discussing it and has an opinion. I wish I didn't! I wish it was a subject I never had to think about or know so much about. Why do I? As I have said before, Z has Tourettes Syndrome (as well as F but we have yet to have an issue with her so far). You might be thinking- oh, the swearing thing. Less than 10% of those with TS have this tic called coprolalia. Z's tics are things like quacking like a duck, he will do this wicked laugh, screaming on top of his lungs for a few seconds, his head with move in different ways, and more. Because of this he has been the target of a bully. Thank G-d, we are working with the school now but when your seven/eight year old tells you he wants to die because maybe the bully is right and his life isn't worth living, its heartbreaking. We are blessed to have an amazing team of doctors who have helped us through this rough period and are working with him on moving forward. Unfortunately, in today's world bullying is an issue which we will have to address over and over as kids with TS are targets with a big bull's eye right on them. In my time on TS support boards, the majority of families report bully situations. Last I read kids and teens with TS have a higher rate of attempted suicide than kids who are gay largely due to bullying. Last week I believe an 11 year old boy with TS killed himself due to being bullied.

     What has bothered me in our journey to deal with the bullying issues is how people always focus on the victim- they should have tougher skin, nobody can make you feel bad about yourself so stop giving away the power, well the tics ARE annoying, etc... it always gets turned back on the kid being bullied. Heck, they should stand up for themselves we are told but in the end it only ends up worse with today's no tolerance policies in schools. Either the bully goes under ground and just gets smarter about when they bully or the victim fights back and ends up in trouble. So far, I have yet to see any policies which actually target the real issue- why is this child resorting to being a bully? The vast majority of these kids are screaming for help and don't know any other way. It is NOT a natural state for a child to be a bully despite the fact that our society treats it like it is. Instead of focusing on the child bullied and turning it on them, schools and parents should be saying, why is this child bullying and how can we help them be productive members of our society? The reason is not the same for every bully but what is the same is that they are trying to get people's attention in all the wrong ways.
   
    Today I read in the paper that President Obama is backing our very own senator, Senator Bob Casey Jr. and his Safe Schools Improvement Act. I like where this legislation is going honestly. http://www.casey.senate.gov/newsroom/press/release/?id=9c23683d-5ebe-4459-a205-f86f6a4720a0 "The Safe Schools Improvement Act would require schools and districts receiving designated federal funds to adopt codes of conduct specifically prohibiting bullying and harassment, including conduct based on a student’s actual or perceived race, color, national origin, sex, disability, sexual orientation, gender identity or religion. The Act would ensure that schools and school districts implement effective prevention programs in order to better prevent and respond to incidences of bullying and harassment and would require that states report data on incidences of bullying and harassment to the Department of Education." Its a good start. At least it is saying, hey, bullying isn't okay and we need to do something about it, we need to work on prevention. I am all for this! It doesn't go far enough though as it leaves many many kids in private and religious private schools without any protection. Senator Casey said, " This bill is a crucial step towards ensuring that no child is so afraid to go to school that he or she stays home for fear of bullying." No child means ALL children in my book. One can not assume just because a child is in a religious school that they will not have to encounter bullying. One can not assume because one pays tuition their child will not have to encounter a bully. They are there and even more so in the public schools they kids need protection under the law.

    Z's birthday was last week. He turned nine. F's birthday is this week. In their honor- call Senator Bob Casey Jr. and ask him to not leave behind millions of children in private or religious private schools to be bullied and unprotected by his legislation. http://www.casey.senate.gov/contact/

What a day!

Today is Z's 9th birthday according to the Jewish calendar.  As we celebrate our Jewish birthdays, its been a day of celebration.  The Jewish day starts at sundown.  Last night at dinner since the sun was down Z went around the table and gave us all blessings.  He gave extra tzedaka (charity).  In addition this morning he read his new kapital (chapter of tellhim/psalms) which relates to his age (so psalm 10 he started today since he turned 9 and is starting his 10th year of life). We also did cupcakes and sang happy birthday.

This morning he woke up in a great mood.  We all were.  My mom even called and sang him happy birthday which made his smile so wide.  I even arranged for him to bring cupcakes for his class since we can not make him a big birthday party (catch 22 of the bully situation- birthday parties you have to invite everyone if you are making and there is no way we are inviting the bully so no birthday party).  We had arranged to take two of his friends for dinner but had to do a rain check (this is a lucky thing which you will understand why in a minute) because T got sick.

We never take the kids out.  Between a lack of kosher places to eat, the ones there are usually are expensive, and the kid's food allergies we just don't go out.  A new burger place opened up... at least its new to us since we only heard about it two weeks ago.  http://burgerorg.com/website/  I decided to try and salvage the birthday dinner and see since they do take out, if we could get anything safe for the kids.  With their allergies its almost impossible.  We have only found one other place which is in NY which we could safely eat out.  They were beyond amazing.  So understanding over the phone and answered all my questions.  I took a leap of faith and made an order- Burgers for everyone but the birthday boy who wanted chicken fingers and since he isn't allergic, he got what he wanted!  The person over the phone carefully took down the details needed to make the food safe for the kids.  My lovely husband on his way home headed there to pick up the food and got home right as I was finishing up the kid's french fries (their fries are fried with foods my kids are allergic to fries could not be made for them).

I was already flying high before the burger place agreed to make the kids safe dinners.  I had called an amazing bakery in Brooklyn, NY about arranging for ML a upshernish cake.  An upshernish is when a boy turns 3, we cut their hair for the first time.  This is a very big deal as its the start of their formal Jewish education.  The boys start wearing tzitzis and a yamulka as well.  ML's is in about two months and with his EE trigger list, arranging food for the event I was getting worried about.  We had decided to do it in the evening and do dessert.  I was going to have to do dessert if it was a meal event or not a meal event, so I figured since dessert was going to cost a fortune lets cut out the second fortune which a meal would have cost.  I called Heaven Mills and today they called back saying they could in fact make him a safe cake!!!!!  Also, they will be making some safe cookies in addition to the cake.  YAHOO!!!

So, I am flying high all proud that we could finally have a meal I didn't have to cook.  I am watching them eat and enjoy.  T looks at me and tells me it tastes off.  Well, I knew it wasn't an allergy thing because he told me everything he ate today tasted off.  He has been sick since Tuesday and hasn't kept much down so this didn't throw me.  F is oohing and ahhing with delight.  ML is clapping.  My husband is enjoying his burger on a lettuce wrap since he is gluten free right now.  MEB is giggling and playing with her toes.  The birthday boy looks green.  He got maybe one bite of his chicken fingers.  Oh no- not him!!  I give him his meds and send him off to bed.  Disappointed since I just wanted to make his night great.  As soon as he makes it upstairs he is throwing up.  What a way to end a birthday!  He is now tucked into bed, feverish, and sleeping.  Looks like F is the only one going to school tomorrow.

But hey, we have a new place to eat out for ALL of us and M will have his first cake ever at his upshern!  What a day!

Lists

Just looked over the lists from Passover so I can take notes on what worked, what didn't, and just an overall assessment.

grocery store 

- romain (15)  ended up getting from costco but to much.  Need like 2-3 of the romaine head bags.

-kosher salt

-disposable table cloths

-quinoa (10 boxes)  had just enough.  Need more for next year so we can do pancakes as well.  Huge hit was the popped quinoa on the salads

BJs

3 things of foil pans    Surprisingly only used 1 pack

cups,

forks,

knives,

spoons,

bowls,  ran out of bowls, need 2 next year

plates   ran out of plates on the last day.

BJs/Costco

-avocados (60)

-strawberries (8 pints)

-watermelon (2)   Need 2 big ones, not little ones

-tomatoes (60)   Didn't use them all this year but have in years past

-cucumbers (10)  Had to buy 12 extra in the middle.  Not enough for cuc. salad, Israeli salad, and cut up on romaine salads.

-red peppers (24)  In past years used them all.  Would cut it in half

-pineapples (8)

-zucchini (20)

-potatoes (20lbs)  Ended up getting an extra 10lbs Mashed potatoes never got eaten but they loved my french fries

-onions (20lbs)  Most were rotten.  Not sure if its a bad year or the kind.  The sweet onions were all good though

-bananas (50)  had to get WAY more cause of the yonana machine

-apples (2 bags)  ended up getting 1 bag plus 3 costco packs

-pears (1 bag)

-celery (1 hearts)

-carrots (10lbs)  perfect amount.  Not to much but not to little.  F loved the carrot salad with pineapple and apples.

-sweet potatoes (1 box)  perfect amount 

-sugar (2 bags)  Almost all gone between cooking for us and a friend sugar water.  Also the cotton candy machine ate it up.  Cotton candy machine though was kept out for year round which makes so much more sense.  It took so much time making enough which could have been used for more productive things.  Was fun however.

meat order

-case of chicken bottoms  everyone loved the chicken made with lemon juice, salt, and white wine

-case of boneless skinless chicken breasts  chicken ball soup was a huge hit as was quinoa crusted schnitzel and chicken latkes/nuggets

-case of roast  F loved roast made with white wine and apple sauce

-case of wings  never arrived!

I am sure I am missing something and will remember later.