An open letter to Colin Brewer

Dear Mr. Brewer,

I just read an article about you and your feelings about my child. Apparently to you, my 9 year old daughter's life is not one who is worthy in your book. In fact, you equated her to a deformed lamb and said she should be killed by smashing her against a wall. Did I get that right, or did I misunderstand?

Let's see... yes... "Brewer said that perhaps we should be treating disabled children like the runt of a litter of lambs which are often disposed of by smashing them against the wall. 'If they have a misshapen lamb, they get rid of it. Bang.'"

So now that the string of ugly words that I really wanted to say are pushed down into my gut, I have decided that you should meet my little lamb. Who you wish to smash against a wall.

This is Kennedy. She just turned 9 years old. Like many other 9 year old girls, she goes to school every day. She whines about doing her homework every day. She loves spelling and gets 100% on her spelling tests every week, but she hates math. She loves to read and hates to clean her room. She adores the color pink and anything that sparkles. And like many other little girls her age, she dreams of one day marrying Justin Bieber. You can often find her sitting with her iPad and headphones listening to music, or dancing around our living room. And when she's not home, you can find her working hard at the dance studio - the place she'd rather be more than anywhere else in the world. When she gets on stage, everyone sees her shine.

When Kennedy grows up, she wants to drive a pink car with no roof, and she wants to work at Claire's or own her own flower shop. No matter what she ends up doing, I know she will work hard and do her very best. She is the most determined kid I know.

Kennedy has a lot of friends (some of them you would consider "deformed lambs" like her) and she lights up the room wherever she goes. She has not ever been a burden on her family or her community. She may have to work twice as hard as her peers to accomplish what they do, but she does so with a smile and she keeps moving forward.

In her nine years she has fought more battles, shown more love, and changed more hearts than most adults ever will, and I have no doubt in my mind that no matter what she decides to do with her life, she will do it well and give it her all.

As Kennedy's mother, I am so thankful that a politician such as yourself has no say in my daughter's life or her future. What a horrid loss it would be to the world to not have Kennedy in it. It makes me so sad for you that you have not had the blessing of knowing and loving a child with a disability. You are missing out on one of the greatest joys in life... the sweetest, purest and yes, sometimes the smallest little lambs.

HAPPY BIRTHDAY KENNEDY!!!

Happy Birthday, Princess! Today you are NINE!! You've been waking up every morning for days asking, "Today's my birthday??" And we've had to keep saying, "Not yet..." But now, finally, TODAY is your birthday! I can't believe you are nine years old. You have come so far sweet girl and I so enjoy watching you grow in every area of your life, whether it be your school work, your dancing or just watching you mature into a beautiful young lady.

Kennedy I love that you befriend everyone. You have a unique gift to look past outward appearances and look at the heart. I have seen you form some unlikely friendships this year that have made everyone around take notice as you reach out to others with an open hand and your beautiful smile. I know that so many people now and in the future will be so blessed by the gift of your friendship.

I can't wait to celebrate your special day with you, sweet girl! I know you'll love your Justin Bieber cake that I'm bringing to your class and then we'll all go to dinner tonight. I hope this is your best birthday yet!!

I love you a million, billion, trillion!

Love,
Mom

IEP Day

Today was Kennedy's annual IEP. It also happened to be Field Day thanks to the original Field Day being rained out, so that made for kind of a crazy, busy day! I think everyone will sleep well tonight!

Kennedy has made SO much progress in 2nd grade!! She mastered almost every one of her goals and has graduated from Occupational Therapy! :) I never thought that would happen! LOL Her handwriting has really come so far this year and we are all so proud! Of course her OT said that she would be around if anyone needed her and we'll all say a little prayer that Kennedy doesn't cut her (or anyone else's) hair off next year. *ahem* :)

Kenn has come a LONG way with her reading... she has progressed an entire year since her last IEP meeting, which is fantastic! She met all her sight word, reading and writing goals and is now working on writing longer sentences, forming paragraphs, and working on capitalization and punctuation (which she already has a good understanding of, but we still have to remind her sometimes.) They said she's doing a great job with her comprehension and being able to listen to a story and tell the main idea, setting and characters and other details about it so they're going to work on expanding that next year. I am excited to see her continue to progress with her reading and writing. I love to hear her read little stories to me and see the little notes she writes in her notebooks.

She will continue to get speech therapy, but her ST was very happy too with her progress this year. Kennedy mastered her speech goal from last year... and I can't remember exactly what that was, but it had to do with retelling stories, so they're going to continue working on intelligible speech. She's come a long way, but she has a long way to go... When she knows exactly what she wants to say, her speech is VERY clear, but when she is not quite sure what she's trying to get out and needs to think and speak at the same time, it's still hard for her. Her classmates have been fabulous this year about asking her to repeat herself if they don't understand something, and usually they will understand her the second time. :) I have more to say about speech stuff that's not really school related, but that's another post for another time.

Math is still slow going... she did meet almost all her math goals for the year, but it was a struggle. About the end of the 3rd quarter we decided to try her with a calculator and things got SO much easier for her and she actually started to enjoy math a little bit. I think things will pick up for her next year with this modification written in. I figure at this point, it's function over form. I realize that (most) math is important, but I also realize that in today's world she will probably always have access to a calculator, so let's just get her REALLY good on a calculator. She loves any type of technology so she's much more willing to play with numbers if she can push buttons to do it. Thankfully her team is totally on board with that idea. :) They'll also be working hard on money next year which will help finish up some math goals from this year that she didn't quite finish. I hate math... it makes my eyes glaze over. LOL

So... we're moving onto 3rd grade... we talked a little bit about her inclusion time which has been right around 90% still. They pointed out that 3rd grade is a lot different... a lot more writing, a lot harder math, and, oh yeah, those pesky TCAPs (bleh!). We all know how much Kennedy loves to be in the classroom, but we talked about making sure we weren't letting her education suffer at the expense of her being "included" and I agree. I think that A LOT of what the 3rd graders are going to do next year can be modified to fit Kennedy's educational needs, but I certainly don't want her to be sitting in the classroom staring at the ceiling if the content is just way above her head. Thankfully I already met with her resource teacher and we came up with some great ways to modify different things like long writing assignments... she has the calculator for math and we have a few other things in place, but for those times when modifications won't work, they'll pull her out and work on other areas where she needs more help. Right now it looks like this should still keep her inclusion time in the 80-90% range, which is great because socially, she does love being with her friends... but if we see her slipping academically, we'll regroup and figure out a new plan. She came so far this year and I don't want to lose that! As for those pesky TCAPs? Ain't nobody got time for that. ;) I'll just opt her out and be done. Too much stress! haha

And that summed up our IEP meeting... short and sweet... and then we ate cake! :) Here's hoping they'll all be this way! :) I'm so thankful for her amazing IEP team and a fabulous 2nd grade year!! Onward and upward!

Remembering Emilie

Today is Mother's Day... it's also Emilie Parker's 7th birthday. After the shooting at Sandy Hook hit the news, Emilie's face was the first one many of us saw. She made it very real for us and she stuck in our minds as the tragedy of that day unfolded before our eyes.

Emilie was the oldest daughter of Robbie and Alissa Parker. She had two younger sisters, Madeline and Samantha, who she loved to take care of and watch over. She is remembered for always thinking of others before herself, and helping wherever she could.

Emilie loved art and collected colorful pens so she could draw and color wherever she went. She knew that when she grew up, she wanted to open her own art gallery. With that in mind, her parents decided to help other young artists realize that dream in Emilie's memory. They created The Emilie Parker Art Connection where they fund art programs in the community and schools. You can see a some of Emilie's art work here.

In order to honor Emilie's memory today, her family is asking that you share some daisies today... you can plant them, send them, or give them to someone who would love them. If you choose to take part in this event, please take a picture and share it with Emilie's family on her facebook page. Mostly, remember the Parker family in your prayers today, especially Alissa as she spends her first Mother's Day without her Emilie.

Happy 7th Birthday, Emilie! We will never forget... 

Remembering Jessica

Today is Jessica Rekos' 7th birthday. I've done several of these memorial posts now and I've read about each child. I've learned about their lives and their interests and what they loved... and little Jessica seemed to hit me the hardest of all so far. I'm not sure why. Each child has something so special, each child has something that I try to remember about them... their smile... their passion, even at 6 years old... but maybe it's just today.

Anyway, Jessica is the daughter of Richard and Krista Rekos. She has two baby brothers, Travis and Shane, who she loved dearly. Jessica was known for leaving little notes hidden around the house, sometimes just saying, "I love you so much." Her mom said they were still finding them weeks after she was killed at Sandy Hook Elementary School on December 14, 2012.

Jessica adored horses. Her love for them came only second to her new found love of orcas inspired by the movie "Free Willy". After visiting Cape Code with her family, Jessica's love for orca whales grew, and last weekend, her mom and dad ran the 2013 Ragnar Relay on Cape Cod in Jessica's Memory.

If you would like to keep up with Jessica's family and help honor her memory, you can find her Facebook page here. The family also suggests donating stuffed horses to the police department for children in Jessica's memory. They talk more about that here. Jessica will live on through her family and through those who remember her...

Happy 7th Birthday, Jessica! We will never forget...

Mother's Day Tea

This afternoon I went to a Mother's Day Tea in Kameron's classroom. It was so much fun! They served us our choice of tea, and then we got to listen to poems that they wrote for us. Some were really sweet and others were hilarious!! They've been working a lot on writing this year... in fact, each student published two books!! I just got Kameron's last week and haven't had a chance to read them yet, but I can't wait!! I love his teacher! He's done so much with his class this year. :)

Anyway, here is the card that Kam gave me and the poem he wrote. I thought it was so good! (Though a tissue warning may have been nice...) I love my little creative writer! (He did all the cross stitching on the front of the card, too... he's a boy of many talents.) ;)

Mom
By: Kameron J. Garcia

Darkness surrounds, I am filled with fright, 

But in all the horror you are my shining light.

I am happy to have you as a mom,

You're my comfort, you're the bomb!

Life can make me turn and twist, 

When I want to give up, you make me persist. 

You are my shelter in the giant storm,

In the cold hard world, you keep me warm.

You are the sun, lighting the way,

You are the sea, pushing me to bay.

I am the boat, sailing for land,

You are the wind, giving me a hand. 

You are the lioness, protecting your kids, 

You tell me what to forbid.

My sun, my moon,

Leaving, then coming soon.

You gave me food, you gave me a house,

You are my shelter, I am a mouse.

I am happy to have a parent like you,

I couldn't find a better mom from here to Timbuktu!

We have our arguments, we have some fights,

But you are still more awesome that hot air balloon flights!

Though that would be a delight!

Moms everywhere get their special day, 

But I just can't say,

How awesome you are,

You are my shining star!

Nothing could compare

To any mom from anywhere.

You make me feel great, 

Especially when you put food on my plate.

You may not be that strong,

But I still love you lifelong.

You guide when I'm lost,

You warm me from the frost.

To me you have been the best,

You're a cut above the rest!

You make me really happy,

Now I'm not going to get sappy.

But I have a few words that will blow your mind,

You are one of a kind!!

Aww!! I'm definitely keeping this card forever and ever!! :) 

The Book

Remember last month when I was talking about Kennedy being diagnosed with cancer and the doctor handing me a huge book called "Your Child and Cancer"?

Yesterday, Kennedy had her first appointment with The Hope Clinic. It was a three hour comprehensive overview with a bunch of different doctors with really long titles who talked about what comes next. Some of it I already knew, other stuff was great info to have and prompted a lot of new questions. The last doctor who walked in, had a great big book in her hand and I kind of cringed as she handed it to me... it flooded me with memories after a long day of new information being thrown at me.

And then I read the title.

That's definitely a better book than the first one. 

Maybe I won't even throw this one in the trash. ;) 

Remembering Jack

Today we remember Jack Pinto on what should have been his 7th birthday. Jack was your ultimate athlete... he is remembered for being good at almost every sport... football, baseball, basketball, wrestling, skiing, he did it all. He loved being outdoors more than just about anything.

Shortly after the shooting at Sandy Hook Elementary that took Jack's life, amid all the crazy news reports that poured in with details of that day, one of the stories that I remember hanging onto was the story about Jack's love of Victor Cruz, a football player for the New York Giants. I've never heard of Victor Cruz before. I can't tell you what he looks like or what position he plays, but I can tell you that when he heard about Jack Pinto, he played his next football game wearing his name on his cleats, in his memory. I know it may not seem like much, but in the middle of the horror, I think that was pretty awesome. And I hope it brought a little smile to Jack's family.

While reading about Jack today, I also learned that through his wrestling, he was also remembered in Colorado Springs by USA Wrestling. They actually went to Newtown and hosted a night in Jack's memory for his team there. Even more recently, was a groundbreaking for a new park named in Jack's memory in New Jersey as they rebuild after Hurricane Sandy. Jack's brother Ben was the project's honorary foreman and his parents, Dean and Tricia were able to speak about Jack. They were excited to have something like this to honor their son's memory and help the victims of hurricane Sandy at the same time. Jack's family does have a facebook page up in his memory if you'd like to visit and leave him birthday wishes... please remember to keep Dean, Tricia and Ben in your prayers today.

Happy 7th Birthday, Jack... We will never forget... 

Inclusion 101 - Day 3

I've been sitting on this blog post for a couple days now, trying to figure out what direction I wanted to go with it. I had a few different ideas in mind, but I couldn't quite get it all together. A lot of schools do inclusion well... or at least they try. I've always loved this graphic showing the different types of school environments...

Inclusion is what we want for our children, and many schools THINK they are doing inclusion, when many times they're not... even in Kennedy's case there are times that I've walked into her classroom and found her working off to the side with her para on something different... so is that inclusion? Or is it integration? There are other times that she is pulled from the classroom entirely for things like speech therapy or extra help for math, so is that exclusion? Segregation? Is it irrational of me to expect for her to be fully included in the classroom all the time? Maybe.

The truth is, at least in Kennedy's school, every classroom seems to be a revolving door these days. Children are being "pulled out" for all sorts of things. Extra help with different subjects... smaller reading groups, the gifted and talented program, social groups, therapies and much, much more. So when Kennedy is pulled out of the classroom for 20 minutes of her day, no one really blinks an eye, including Kennedy. However, when the bottom 3 circles become the most hurtful it seems, is during the social times... it's the times where school might still be in session, but friendship comes more into play... feelings get hurt... and then that graph up there really becomes important.

Fostering friendships for our kids with special needs can be so hard at times. Many times typical kids view children with special needs as younger siblings (even when that child may be older than them). I overheard a very well meaning child in Kennedy's dance studio say one day about Kennedy, "Don't worry, I'll babysit her!" This girl is a few months younger than Kennedy... and while I did appreciate the sentiment and I absolutely knew her heart was in the right place, I know that all Kennedy wants from this girl is to be her equal. Her friend. She wants to talk about dance, share her new apps on her iPad, and talk about girl stuff. Kennedy will be the first one to tell you she doesn't need to be babysat. She may need a little more direction than other kids her age and she may need to be reminded when she needs to do some things, but more than anything, she needs people to see her as an almost 9 year old girl. She needs to be included.

There are SO many examples of where a little bit of help from teachers could have gone a long way to foster inclusive friendships and prevented some heartache. I'm going to share a couple with you today to show the difference between inclusion and integration.

Example number one...
Today I Cried... Go read my friend Linda's blog post. I can't tell her story like she did. Her story has been the story of every parent of a child with a disability at some point, in some form. Eventually. our children will be left out. And our heart will shatter. Our child will become one of those 3 bottom circles, like Lila was in PE class. So in that instance, what could have been done to prevent that situation from happening? Granted, they are kindergartners, and all kids at some point in their lives will be teased, right? Everyone at some point will be left out, right? But will your child be left out and teased because their classmates cannot understand them? 
Parents, How will you respond when the time comes that they are not treated like equals by their peers and don't understand why? Like Linda said in her post, when that time comes, we will have to think fast to respond to our children when they're hurting... We will have to make the choice to respond out of our own pain or help our child understand the best that they can and move forward.
Teachers, if this had happened in your classroom, what do you think would have been a good response to make this a learning moment about inclusion for Lila's classmates?

Example number two...
I vaguely remember hearing about this boy last year. Alex Pollard has cerebral palsy and is in a wheelchair. After the premier of the hit television show Glee, he was thrilled to join his middle school chorus, because he knew that would be an opportunity for inclusion. However, when it came time for the big performance, inclusion did not happen.

Because of the bleachers, Alex was unable to join his classmates and was forced to sit off to the side. Of course his mother was upset and she did what any of us would do - she posted the picture on Facebook. The picture went viral, but the school refused to really say much... only that the situation was "regrettable" and that the choir director didn't see him there. Really?! So why didn't one of the other students roll him over and include him? Why didn't another teacher sitting in the audience make it right? Heck, maybe his mom should have stormed up on that stage and moved him over. I don't know WHAT the answer is. What I DO know is that the choir director KNEW Alex was in that concert and he KNEW those bleachers would be there. He taught those students that night that Alex was not as important as the rest of the kids on that stage. That was a very important lesson that they should have never learned.

Teachers: What would you have done differently in this situation to make sure that Alex was accommodated for this performance? Knowing that he would be there in his wheelchair, even if removing the bleachers was not an option? Parents: If this had happened to your child, how might you have handled the situation when you realized what was happening, and afterwards?  

Friendships for any child, typical or those with special needs, can come and go and take lots of tender loving care. Each child has their own personality, their own temperament, their own strengths and weaknesses that they have to offer to each friendship that they enter into. When they develop a close friendship, that is something to be cherished and cared for, and when children are young, sometimes parents and teachers need to help make sure that happens by guiding the children in the right direction. I am thankful for the friends that Kennedy has made who love her and accept her for who she is - not as their little sister, but as their equal. I am thankful for the parents and teachers who have worked hard to help foster these friendships with Kennedy... I realize these friendships may be few and far between, but I'll help her hold them close and cherish them however I can.

Inclusion 101 - Day 2

This is a series!! You can read part 1 here.

On my last post, I had a comment from a special education teacher who talked about co-teaching, which is perfect, because I am going to touch on that today! She was talking about co-teaching as a special education teacher with the regular classroom teacher and you can use the link above to go see how that is successful in her classroom. I really appreciate that feedback!!

In our school, we have two different classes (though none of my children are in them this year) where teachers co-teach. I won't speak too much about this because I'm not 100% sure how this is set up. I DO know that one teacher comes in the first half of the day and the other teacher comes in the second half of the day. I don't know if each teacher sticks to different subjects or how that works, but I will admit that when we came to the school last year and I learned about this, I kind of balked at the idea. I thought it would be harder for the students to focus with the teachers constantly changing. However, the parents that I've talked to over the last two years who have had students in their classrooms have loved the outcome of this teaching style and have chosen to have their younger children go into these classes as well. So, my mind has been changed! ;) I definitely think that co-teaching, when done right, can be a good option - when students with special needs are in the classroom or not. Has your child ever been in a classroom with co-teachers? How has that worked for them? 

What I REALLY wanted to talk about today though was co-teaching with the class. I am going to refer back to the book, "Don't We Already Do Inclusion?" And the author talks about how, in an inclusive classroom, the students do more than function as learners. They also have opportunities to share what they know and get and give support. This is very evident in Kennedy's classroom. They do a lot of "center time" in her class and they do a lot of group projects. When they break into groups, in order to keep Kennedy included, she is usually assigned a buddy. This buddy is chosen carefully for her, because there are some kids who still like to baby her and do everything for her and this makes her ANGRY! She is, after all, a big kid! She wants to be able to do what her classmates are doing, and most of the time she CAN, but sometimes she needs to see her classmates model what needs to be done first... for example, if Susie first shows Kennedy how to punch holes in the side of the book they are assembling and then thread the yarn through the side, then Kennedy can probably do her part all by herself. Susie then has become a co-teacher, essentially. Kennedy learned how to help with the group project and was able to do her part and Susie learned a great lesson in leadership while still getting her part in the project done as well. Susie can then go home and say, "Mom, I helped Kennedy today!" While Kennedy will probably come home and tell me, "Mom, I did it all by myself!" or "Mom! I did a project with my friends and Susie showed me how!" but she won't say, "Susie did my project for me..." because she didn't. Both girls learned, did a project and left with a feeling of accomplishment.

The trick is, to find which students have the experience and skills to help those students who may need the extra help... You can expand on some student's strengths by having them help others in the areas where they may not be so strong. We do this in our own home... Keeghan is an expert at cleaning his room. He has a place for everything and everything goes in it's place. He will get his toys out and make a mess, but when I say, "Clean up!" Everything is put right back. Kennedy, on the other hand, will make a mess, and despite having a place for everything, can never seem to remember where anything goes at clean up time. So, Keeghan will usually offer to help her clean up her room (which is nice since he usually helps make the mess!!) ;) In return, Kennedy is GREAT at helping me load the dishwasher and getting it all organized and ready to turn on - a chore Keeghan strongly dislikes because "dirty dishes are gross!" so Kennedy will usually volunteer to do that job for him. It's all about finding the strengths in each child and finding where they can help out and where they need to be helped.

Teachers - do you let your students "co-teach" in your classroom? Why or why not?
Parents - do your kids ever talk about other kids helping them with tasks at school or do they talk about helping others with tasks? Do you think this is a good idea or do you think ever kid should fend for themselves?