"The Class List" ...What If A Child with Special Needs Is In Your Child's Class?....

This post is something that has been rattling around in my head for the last week....

For the last week I have been thinking about "The Class List...."
It is almost time for school to resume...all the back to school commercials are playing round the clock, new clothes and backpacks and folders are being bought...and the ever exciting day that the "class lists" will be posted up on the office windows are soon to arrive. I don't know about you but I LOVED that day...COULDN'T wait for that day. I'd roller skate up to the school to check out the lists and hope that at least one bestie was in the same class as me...then I'd dream of what the new school year would hold.
The class list held a lot of weight as to what kind of year it would be for a kid... Spot the school bully on your list? Well, you knew you'd have to watch your back.... Spot the booger picker? You made a mental note to sit on the far side of the room away from them... Spot the cute kid you'd had a secret crush on on the list? ...You went home to spiff up your wardrobe. Yes indeed, it held a lot of weight, that class list.
But, WHAT IF you were a parent standing there next to your child scanning the lists with them and you notice a name...and know it to be of a child with special needs. What would your initial thoughts be? ..I'm talking your true, honest, quiet thoughts in your head that you might not share out...

Would it be, "Good for them for "Fully Including" their child"?
Would it be, "I think this is good, my child will learn from this experience".
Would it be, "Oh yay, we love __insert child's name___!"

Or would it be......

"This is terrible, kids with special needs belong in special ed classes!"
"Having this child in class is going to rob my child of their education because the teacher is going to have to spend so much attention on them!"
"I'm going to complain, I don't want that kid in class with my kid!"

One if not all three of those last responses belong to an entire group of parents in the next county over from me. A few years ago there was a situation where a little girl with Down syndrome was going to be fully included into one of the kindergarten classes on campus. "Fully Included" means she would school the entire day in a "general education" class from beginning to end just like everyone else assigned to that class...whereas if someone were to be "Mainstreamed" that means that for part of their day they would mainstream into the general ed class setting say for art or science or some subject but the remainder of their day would be with a special ed class. At any rate....this little girl was going to be fully included into the kindergarten classroom... and she showed up on the "class list".
In response, the parents of the children who would also be in that classroom were upset....felt their child's education was going to be harmed and started a petition NOT to have her allowed in their child's class. This is seriously what happened, parent after parent signed their name to that petition... just down the road from me a hop and a skip and just a few years ago. The school got the petition, the school buckled under the pressure....and the parent had to fight for her to stay on that class list. Her parents had to take it to the district level, argue their case, and remind them that their daughter had a legal right to school in that class. Their point was made and the little girl was allowed to remain in that class.
As I type... I can just imagine that confrontation this family had to face with essentially their own "neighbors" in the neighborhood who were rejecting their child.... I would feel so kicked in the gut by my community. I am proud of the little girl's parents for holding their head high and fighting for what was right for their daughter. In the end, the family did not start her in that particular kindergarten...where her parents would need to stand shoulder to shoulder at drop off and pick up each day with all the parents who signed the petition not to allow their child in class... They fought their fight, made their point, and then enrolled their child at a different school where she was embraced. I can't say I blame them under the circumstance.
Grown adults can be cruel, we can be uninformed, we can hold onto harmful biases, we can be arrogant and seclusive and insensitive. ....and sometimes we don't even realize we are being this way.

For those of you thinking... maybe those "petition" parents were right...maybe she would of robbed the other kids of their education". My response would be.... "Where is the evidence of that?"...they never gave the little girl the chance to prove her abilities...she was shot down because of unfounded parental fears before she even got to start her first day of school. In many cases children who are Fully Included are given full time aides beginning in kindergarten, so had she needed extra assistance she would have had her aide. This little girl would not have robbed anyone's child of their education. The thing however that most certainly was robbed was for the opportunity for "their" children to learn about acceptance and compassion and differences in a very real way..lessons that cannot be taught from a text book the way loving and accepting a peer would.
What about the response... "Kids with special needs belong in special ed classes?" My response would be, "Not necessarily, depends on the child and the child's needs...". To say they should ONLY be in special ed classes would be putting a child in a box and dare I make the comparison would be like me telling you your tall, skinny kid belongs only on the basketball team. What if baseball was actually a better fit for him, far be it from me to deny him that....nor the room to allow him to grow in that sport. There are beautiful special education classes and there are beautiful general education classes with teachers who welcome working with a child with special needs. Each special needs child has different needs and believe me, parents think long and hard about the choices for their child's education..... and those decisions are best placed in the hands of the parents who know their child best and the team of specialists and school administrators who form his/her team....not insensitive petition signing parents, that's for sure.
Why do parents choose to Fully Include? ....Sometimes it is because they feel their child would benefit from the role models their "typically developing peers" would be for them, sometimes it is because they feel their child can learn right along with the other children (and they can), sometimes it is because they feel that the high expectations that would be held for that child would motivate them to reach beyond their limitations, sometimes it is because their typically developing peers would be hugely beneficial for them in regards to speech modeling or perhaps even social modeling.

So, we take that step for our child and hope that we are not met with parents who respond as the group I had mentioned above. And as we stand there shoulder to shoulder at pick up and drop off and we see parents smile lovingly at our child... or they comment about how glad they are that our child is in class with their child... or comment on how well they did something.... or reassure you when a naughty incident happens that all kids have naughty moments.... I cannot even begin to tell you how much those words mean, truly....... they. mean. so. much!
So IF a child with special needs does indeed end up on your child's class list and you have reservations about it.... please watch and see, you just may be surprised, your pre-conceived ideas just might change.... and the words of encouragement you might even find yourself sharing with the child's parent... will make you both feel great. And... if all those things just mentioned do occur, well then I hope your child ends up on MY child's "class list"!


** Disclaimer: Sometimes, we as parents feel that mainstreaming might be better for our child, or it might be better for our child to school solely in a special ed class..... all those options are beautiful options if and when it is the right fit for our child, and we'll know when it is. I don't want anyone to get the impression that I am saying we as special needs parents are failing if we choose not to "Fully Include", that is not what I am saying or how I feel at all.

Deedah and Me (a short film)

I recently became aware of this documentary called Deedah and Me about a big sister and her little brother who has Down syndrome. It struck me for a few reasons...one, obviously I love to see real people doing real life with Down syndrome sprinkled in because of course that is our life too and it is encouraging to me, you guys out there are encouraging to me...and it spurs me on to do better and to fight harder and to love deeper.
But it also struck me because Charlotte, the big sister, who is only in 2nd grade mind you is so articulate and so good with her brother....reminds me of a big brother in our house! I also found it funny that Deedah is her nickname given to her by Jonathan, the little brother, as a result of him attempting to say sister.....and the nickname over here given by Reid, the little brother, is Dah for Luke as a result of him attempting to say brother (or at least that's how we think it came about) ;).
Lastly I was also struck by how articulate Jonathan is with his own words and clear thoughts especially being only 2 years older than Reid and it makes me wonder if Reid will make that much growth in the coming years....it made me happy to see Jonathan just being a little boy, and what a darling little boy he is!!
The vision of this video is to help promote Down syndrome awareness in the community, for expectant parents, and for schools as well. I think showing this in classrooms is a great way to start the conversation regarding special needs and addressing the issue of bullying in school. If you wish to sponsor a school or Dr. office or even a library you can go to their website and buy it at their cost which is $6.00 + SH or get your own copy right now for $9.95.

**Before watching the trailer be sure to pause my music at the bottom of the blog.

Deedah Trailer from Philip May on Vimeo.

Eating Your Science....by Luke

Luke was given a science project assignment to complete over a week ago by his teacher, but unfortunately it needed sunshine to work...and sunny southern California has not been so sunny lately....we've had some pretty stormy days including a tornado warning (secretly I have LOVED it.....I love the drama of thunder and lightning as long as I can be indoors). Anyway..........back to science projects 101. Since Luke's given experiment was not to work we had to figure out an alternate. He came across an experiment that entailed discovering whether ice cream could be baked without melting in a science book of his, pictured above. I decided to do a google search to see if I could find any more information on the subject....and actually found a blog that showed the same science book and same science experiment....which unfortunately flopped. I left her a comment that I wasn't sure whether to laugh or cry that I found her blog because Luke was so determined that this was the project he wanted to do. Well funny how things happen but it actually became very fortunate we stumbled across her blog post to help us navigate around some pitfalls. The original experiment in the book wanted you to bake the ice cream for an hour at 225 degrees and her pictures and description showed that to be a mistake....so I found another recipe that said to bake it at 500 degrees for 3 minutes...worked like a charm (well....at least the second time around...our first attempt we did not make our meringue "tough" enough). In short, to conduct the experiment you place cookies on a cookie sheet, place a scoop of ice cream on the cookie, and cover it with meringue and bake. Anyway......I think we passed, little Mr. Luke and I......I do believe we got a passing grade on what he wanted to title, "Eating Your Science".....I think because that was his favorite part of the whole thing!! But, we shall see... he turns in his project in the morning and has to present his findings to the class....which for any curious scientists out there, "Yes, you can bake ice cream without it melting"...the cookie and meringue act as insulators for the ice cream.

Aghhhh, the joys of motherhood...so many, many hats one must wear...I can now add scientist cap to the list. I love it! ;)

Foam Yoga Blocks...for Our Little Ones with Down syndrome

In the effort of Down syndrome awareness I wanted to share something that our fabulous occupational therapist, Karen, introduced us to that has helped Reid tremendously with his sitting posture both during therapy but also at preschool. As we all know low muscle tone is something to contend with for our little ones with Down syndrome and it is not rare for me to find Reid sitting on the floor with his back hunched over, looking up at Sesame Street with his chin down but eyes turned up and tongue out or head way back resting on his shoulders with tongue out. Karen started using a foam yoga block with Reid during therapy about a year ago and explained that this helps tilt his pelvis forward and realigns his shoulders, neck, and head. This in turn changes his visual perception of things, seeing them at a different level and helping him to be more alert and engaged. It totally works... and I have noticed less open mouth and drooling from him. Below are pictures during therapy and the last one is Reid and his backpack....about a week into preschool I noticed that familiar floppy posture of his while sitting during circle time. I asked his teachers if it would be okay to try the block with him at school, which we did...and they noticed a HUGE difference in him. Plus, they also commented that it helped him to stay in one place on the floor LOL :). So Reid takes his block with him to school and knows to get it out first thing and takes it to the floor to sit with the other kids. We bought our yoga block at Target but you can also find it at any sporting good store.

100th Day of School!

This last week Luke's school celebrated their 100th day of school. They needed to bring in a project featuring 100 items... and Luke decided he wanted to bring in 100 wiggly eyes. The kids did such a great job...I posted a picture from the display board in their classroom of all the creative ideas! 100 days of school....can hardly believe that many have passed! 100 days of..."Did you brush your teeth??"..."Where is your backpack??"..."Put your shoes on!!"..."Come on, let's go"....but also of  "bye Bubs, see you at 3:00!"..."I love you Buddy!"...and "Have a good day!"

October: Down syndrome Awareness Month (post #14)- Some books on Down syndrome

I wanted to use this post to share some of the books on Down syndrome that have been helpful to me so far along this path. But, first I must share a story with you about a book from the Jigsaw Jones Mystery series....

Luke has become an avid reader since entering the first grade and loves "chapter books". This last week he picked up one of the books from the Jigsaw Jones Mystery series from his school library. We began reading it but really didn't get too far. Luke announced Thursday afternoon that his book needed to be returned Friday morning and he wouldn't be able to check it out again until after a week (school policy I guess?!?), so, "Mom, we HAVE to read it TONIGHT!" is what I was told. Anyway, Thursday turned out to be quite a busy day and before we knew it the day had come to a close with both Luke and I falling asleep in my bed watching TV...without reading ANY of his book. For some reason I woke up at about midnight, checked in on everyone, and began checking in on some of by blogging friends. Still up at 1:52, I heard little feet coming out to the family room...Luke had woken up and was trying to tell me through tears and squeaks in his voice that we forgot to read his book. I tried to explain that there were 11 chapters in the book and that we were only on chapter #4, so there was NO WAY we would be able to read it all! But, the tears continued to fall and the look of disappointment was just too much for me to bear. So, I told him we would try reading to see how far we could get. It was 1:52 in the morning for goodness sakes so I thought I'd read a chapter and my sweet one would be sound asleep again. Never underestimate Luke! He dried his tears and became bright eyed as we read....EVERY chapter in that darn book! Yes, we defeated all odds and I surprised myself by becoming a speed reader and sped through the seven chapters that remained! At 2:36 I tucked Luke back in bed, who was clutching his book and had a smirk of satisfaction on his face at this wee hour of the morning....so thrilled that he could turn his book back into the library, FULLY READ! As for mom...well I was dragging all day Friday but had a smirk on my face as well...savoring the fact that these are the little moments in parenting that you don't forget.

Okay, now for books on Down syndrome that I have found to be great... I know there are many others out there that I may not list or be aware of, so if you are reading this post and have a book that you would like to share about, please do so in the comment section for us all to benefit from! :)

Babies with Down syndrome A New Parents' Guide. This was the first book I was given by my mother-in-law and I found it very helpful. I later received quite a few copies and started giving the extras to family members...who later commented that they appreciated having the book as well so they had a better understanding what Down syndrome was and how to better support us. 

Gifts: Mothers Reflect on How Down syndrome Enrich Their Lives. Every parent with a child with Down syndrome needs this book, but especially brand new families, as it offers such hope and encouragement!! This book was again another one given to me by mother-in-law. She, who is a labor and delivery nurse, has since bought numerous Gifts books and keeps them on hand in her locker at work. Every time a new baby with Down syndrome is born in her hospital, the family is gifted this very special book from a "grandmother" who all too well knows the heartache and joy that comes with these sweet new ones!!

Books on speech, occupational therapy, and physical therapy related topics that I like are; Communication Skills in Children with Down syndrome by Libby Kumin, Gross Motor Skills in Children with Down syndrome by Patricia Winders, and Fine Motor Skills for Children with Down syndrome by Maryanne Bruni. 

Other great books; Road Map to Holland by  Jennifer Graf Groneberg, Expecting Adam by Martha Beck, Being the Other One by Kate Strohm, and Count Us In by Jason Kingsley and Mitchell Levitz

First Day of School... & Being the Bottom of the Food Chain

Today was Luke's first day of school. I really missed my little pal! On our way to school he leaned over and whispered to me, "Mom, did you know that I'm at the bottom of the food chain??". I couldn't retain my laughter and had to share with Toby who's tender response was... "No, buddy you are a first grader now...so you're at the second to the bottom of the food chain! :)". Lovely! Luke's second item of concern was that there is a little boy in his class this year who told Luke last June out on the playground that he would "pound him" if Luke went near a certain girl they both had a crush on (have you seen my Luke?? It's not likely he'll be the one "pounded on"). Anyway, good news....Luke informed us this afternoon that that little boy went right up to him today and said, "You wanna be friends?". All is well in a first grader's life!

Reid enjoyed himself today too...trying out the monkey bars!