Thursday, October 31, 2013

Trail Blazers

I had done quite a bit of research leading up to my meeting with the Principal of the local public Montessori school.  I contacted friends and friends of friends who know about Montessori education.  I hashed it out online with fellow parents.  I belong to an inclusion group for parents of kids with Down syndrome.  I work closely with an education specialist at work who is well versed in special education policies.  I read Wrightslaw newsletters.  I know the lingo and I feel like I'm beginning to understand IDEA and IEP's and FAPE and all the rest.  But when I showed up to my meeting I was unprepared.  How is this possible?  I know my stuff!   I was unprepared for how emotional I would instantly get when I asked if there were any students with special needs at the school (a PUBLIC school) and was met with “No.”  My head started spinning like I had had one drink too many.

Let me make sure I point out that while I was shocked and emotional and was not met with what I was hoping for (I’ll get into that in a minute) this Principal was kind, calm, smart, generous with her time and we parted on good terms with an understanding of how I was going to proceed.  I in no way want to make the Principal out to be a villain.  I believe her only real fault was that she was not prepared to meet with me and therefore not as open to discussion as I had hoped.

What happened?  How did this go so wrong?  I had asked in my Facebook group if other parents had experience with Montessori schools and while there weren’t many, there were definitely some and they were all supportive.  My research suggested similar things.  Basically, Montessori can be good for kids with Down syndrome for a number of reasons:  Learn at your own pace, hands on learning, fewer classroom transitions due to multiple ages in one room, helps teach self direction, to name a few.  There were some down sides too but they boiled down to: the potential for him to get lost in that environment is large.  This is not a minor point and I accept it.  But I also know that regardless of the general education environment, the potential for Cooper to get lost is large.  He will process things at a slower pace than his peers and it will take him longer to learn to express himself.  He will need assistance to succeed in a general ed setting.  It does not, however, mean that he cannot process, that he cannot learn and that he cannot express himself. 

So I felt like I could handle that argument if presented to me.  It went something like, “With the proper modifications, with a teacher willing to try and with the support of the public school's educational requirements of his IEP (OT/PT/Speech and/or an aide) I’d like to find a way to help Cooper learn to navigate a Montessori environment because the positives far outweigh the potential negatives.”

My first question to the Principal was, “Do you have any other kids here with special needs?”  Her response of “No,” as I said earlier, started the meeting off on a terribly wrong track.  “But aren’t you a public school?” I asked.  “Yes, but our students have to be very self directed in order to do well in this environment.”  “At 3?  Because I don’t know a whole lot of self directed 3 year olds.”  Getting worse by the word!  I had emailed before the meeting to let her know that I was coming to talk about my two year old with Down syndrome, so I thought maybe she would be more prepared to talk about it.  She had forgotten that I wasn’t just a typical parent off the street looking for a tour and when I started challenging some of her statements, her defenses went up…and mine were sky high at the answer to the first question!

I took a deep breath and owned my emotional state.  Saying it out loud seemed to help bring everything down a few notches.  I said, “I’m sorry.  I’m very emotional.  This is all new to me.  I want something for my child that apparently no one else has ever asked for here.  I appreciate your willingness to talk to me about it.”  All the while I’m screaming in my head, “YOU ARE A PUBLIC SCHOOL!  YOU CAN’T DENY MY SON ACCESS BECAUSE YOU DON’T WANT TO DISRUPT YOUR FLOW!  YOU ARE A PUBLIC SCHOOL!  HOW DARE YOU ASSUME MY SON CAN’T FUNCTION HERE BEFORE YOU GET TO KNOW HIM!  YOU ARE A PUBLIC SCHOOL!!!!”  There was a lot of screaming in my head.  I almost ended the meeting and walked out because I didn’t know what to say next.  All I could hear was the screaming. 

I started over.  “I realize now that you don’t have any experience with children with special needs.”  “Oh we have some with mild EI or CI.  I don’t want you to think we don’t have anyone. I just meant that we don't have anyone with Down syndrome in this school, currently.”  I clung to the currently!  Progress.  “In my research, I have learned that there will be challenges to having Cooper in a Montessori school but potential benefits to him are intriguing to me and I’d like the opportunity to pursue them.”  The screaming was getting quieter but behind that statement was “I SHOULDN’T HAVE TO PLEAD MY CASE!” But I guess I do.  I went on to tell her what I like about the idea of having him in this school and that I was well aware that we might get to next school year and it would be evident he wasn’t ready yet.  “Rest assured, I want my son to learn.  If this environment, with the proper supports in place, is not the right one for him, I will be the very first person to know it and do something about it.”  We were quiet for a few seconds and then she said, “But we don’t really have the people to provide that support.”  Defenses back up!  Screaming in my head commences:  “YOU WILL HAVE TO GET THEM!  FAPE!  IDEA!  I READ WRIGHTSLAW!  YOU ARE A PUBLIC SCHOOL!”  Somehow I managed to say, “My understanding is that because you are part of the public school system, if it’s in his IEP, you will have to provide them.”  Long staring, much screaming in my head.  But I waited.  She replied, “But in the least restrictive environment.”  Huh? Did she just throw out a term that she didn’t think I knew?  Probably not.  I think she was just grasping at straws.  I said, “Yes. And if I with his IEP team think that this is the least restrictive environment…?”  We left this line of questioning with her admitting that she didn’t know and would have to consult with the special education director.

I had really hoped this meeting would go so much better than this.  I’ve done so much research into inclusive education and I have wanted to find a school that valued it as much as I do.  I wanted her to answer my first question with, “Yes.  We’ve made some modifications to help these students.  Yes, Montessori school is an environment based on student choice with hidden structure but we’ve worked hard to find a way to make it successful for students of all learning types.”  Idealistic, I know.  But there are schools out there that have done it and value it.  I wanted desperately for this school to be one of them. 

I’m not really sure how we turned the corner.  All the screaming in my head makes it a little hard to sort out.  But somehow we did.  I think I might have let go of my idealistic vision and accepted that we might have to be the ones to blaze this trail at this school.  I asked her to explain what a typical day in the 3/4/5 year old class looked like.  She expalined that the students are dropped off and play outside for ten minutes, they all line up, they come inside for circle time and lessons, then they go and choose their work.  I asked, “How many of the three year olds are able to follow that from the first day?”  She said, “Most of them but there are a few that require a little more teacher attention.”  We talked about whether teachers were willing to help students make choices of what to work on until they are able to do so on their own.  She said they already have to do that for some students.   Hmm, and this is different from helping Cooper, how?  But I didn't say it.  It was apparent.  She's a very smart woman.  I concluded with, “This is what I’d like to do.  I’d like to apply and if we are selected (it’s a lottery), I will evaluate as the school year approaches, to make sure he’s ready.  If he is not, then I will enroll him in ECSE (early childhood special education) and reapply in a year.  If he is selected and I choose to send him here, how will we begin the process of making sure he has the correct supports in place?”  She responded very well to that and we made a little plan about how we would move forward.  Maybe it was because I stopped asking permission?  I don’t know but it was clear that I had every intention of fighting for my kid.  The screaming in my head had subsided.  It was a calm, “You think we can’t?  You have no idea who you just provoked.”  I’m stubborn that way.  And in her defense, she never told me no.  She never said “No.  He can’t come here.”  She only ever said that she didn’t have the experience and that she was concerned they didn’t know how to support him appropriately and didn't have the resources currently in place.  But inherent in the responses was a clear sense that she wasn't sure Cooper could handle it.

That’s the biggest disappointment.  I just wish so much that there didn’t have to be a fight.  That there didn’t have to be a proving ground.  That my son would be accepted with open arms.  Doesn’t everyone want that for their child?  Idealism, meet Realism.  The reality is, Cooper is going to have to further the cause not just be the beneficiary of other’s hard work.  In the end, maybe Montessori school isn’t the right place for him, as it might not be the right place for some typical kids.  I appreciate that the Principal was able to come around with me during the course of the meeting.  We very obviously went from a tense, argumentative meeting to a place of better understanding.  It's not resolved and there may be many more conversations along these lines but I left with the feeling that she was willing to try.  The screaming in my head has still not totally subsided.  Until people stop placing limitations on Cooper before he's given a chance, the screaming in my head will continue.  And until Cooper is in the right environment, being educated by people who care about him as a person not a diagnosis, the fight will continue. 

Tuesday, May 21, 2013

Liebster Award: My Momma Stole My Blog!

I was gone for one night and in that time, my Momma hijacked my blog!  Was it "The Momma Chronicles" that was nominated for a Liebster Award by Looking Up With Down Syndrome?

No.  It was "The Cooper Chronicles."  So, without further ado, I give you, 11 interesting facts about me....COOPER.

1.  I just started taking some steps without holding on to things.  It's really hard and honestly, I'm not sure what the big deal is because I can bear crawl so fast, Momma can't even catch me.  When I take my steps, I try to go just as fast as when I bear crawl and then I fall on my face.  The balance thing is tricky.

2.  I have more teeth than the last time we talked.  I've got two on the bottom, one giant one on the top that Auntie Annie calls my "Nanny McPhee Tooth," and two molars are coming in as we speak.  Sometimes I will be playing and all of a sudden it just hurts so bad that I start hysterically crying.  Also, I've heard that my teeth are really slow moving.  I'm not sure why but I wish they would hurry up.

3.  Lamby is my favorite toy.  It used to be Mr. Monk-Monk (my striped sock monkey) but I've moved on.  We're still friends and all but Lamby is my best friend...he's a better cuddler.

4.  I still don't like sleeping.  It's dumb.  Being awake is so much more fun.

5.  I'm really loud.  I guess I used to be this really quiet baby.  Momma is always asking, "What happened to my quiet little boy?"  He went away.  I'm here now, and I've got a lot to say.  The louder, the better....especially in the morning.

6.  I have Down syndrome.  I guess that's an interesting fact.  I still don't know what that means or why it matters but it seems like it's important to other people.

7.  I've got two brothers and two sisters who live in Chicago.  Mom says they're still my brothers and sisters even though they have a different mom.  We have the same dad though!  I get to see them every once and awhile and it's so much fun! We were just at my big sister's graduation from Valparaiso University on Sunday.  It was AC.  But it was pretty neat to see Emily walk across the stage and hear her name over the loud speakers...not so loud.  The sound system was terrible.

8.  When I said Lamby was my favorite toy, I wasn't being entirely truthful.  Lamby is my favorite toy that is actually a toy.  My favorite toy that I made up is my sock and a half empty water bottle.  Momma and Daddy are really confused as to how I can sit for 15 or 20 minutes and find endless fascination with shaking my sock.  I just love it!  If it's not that, then I shake the water in my water bottle and watch it settle.  Observing how the water moves is so cool.

9.  Purees and solids still elude me.  I'm sure you all heard about my adventures in feeding therapy.  Momma says I have to go to a different feeding therapy this summer.  I guess so...but I still don't see why I can't just keep drinking my ba-ba.

10.  I don't know how to count this high.  I've had help.

11.  Momma says that one of the up sides to having Down syndrome is that I can wear a lot of the same clothes from last summer.  Apparently, I was wearing some clothes that were a little too big last year and this year they fit perfectly.  I'm in a size 12mo and 18 mo...just in case you were wondering.

Monday, May 20, 2013

Editor's Note: Liebster Award

The Cooper Chronicles has been nominated for a Liebster Award by one of my favorite blogs.  I am so incredibly honored to be nominated by such a talented writer and friend.  Thank you so much, Looking Up with Down Syndrome!!! Please check out the blog at:
It is funny, truthful and full of heart.  My favorite post is:

There is a daunting list of things that must be done once the award has been accepted.  Some of it I'm not sure I know how to do, let alone have the time to do.  However, I am committing to it tonight...even if it takes me a long time to get it done.  

Please help me stay motivated.  Here is what I'm committing to:  

1.Thank the Liebster-winning blogger who nominated you. Link back to their blog.
2. Post 11 random facts about yourself.
3. Answer the 11 questions your nominator asked.
4. Create 11 questions for your nominees.
5. Nominate 11 blogs of 200 followers or less who you feel deserve to be noticed. Leave a comment on their blog letting them know they have been chosen.
6. Display the Liebster Award logo

So I managed to do number 1 and 6 already!  I am awesome.  I will follow the format of my nominator and take this in steps.  Tonight I give you...............

11 random facts about me!   I'm sure you're thrilled.

1,2 & 3.  I don't like leftovers, I don't like people to feel bad and my eyes are bigger than my stomach.  This can all be illustrated by one pretty weird thing that I do: I sometimes ask for a box at a restaurant and purposely leave it on the table.  I can almost never eat everything that I order.  I feel terrible guilt that either the person paying will be mad at me for wasting their money, or the sever/cook will worry that I hated their food.  So in order to avoid this question from the waitstaff:  "Was it alright?  You didn't like it?  Let me get my manager and see what we can do,"  or that look of "Seriously?  I paid $20 for that steak" I just ask for a box and then accidentally leave it on the table.   Sometimes the server actually chases me to the parking lot, "You forgot this!"  "Oh, my gosh.  Thank you.  What would I have eaten for lunch tomorrow?  Thank you."  

4.  If the box makes it home with me, I will probably leave it in the refrigerator until it gets moldy.  Gross!  Why?!  Because I feel bad throwing away's wasteful.  Someone in the world is starving.  I can't throw away perfectly good food!  But moldy food can go right into the trash without guilt.

5.  I have issues.  All these little weird rules that I have sometimes make for crazy contradictions that I can't sort out.  I'm used to it but I'm sure I make no sense to the people around me.

6.  I like my contradictions and I like how they make me feel Shakespearean.  That's right Shakespearean.  

7.  I don't like drama.  Not the kind on the stage.  That drama, if done well, I love.  I'm talking about the kind that people create to make their lives more interesting.  Attention seeking behavior is like nails on a chalkboard to me.  Life presents us all with real, inescapable drama.  I have absolutely zero patience with manufactured nonsense.

8.  Before I had Cooper, I cared a lot about stupid crap.  I have not totally mellowed but I am much more likely to dismiss  things and give the benefit of the doubt to people than I ever have before.  Something about becoming Cooper's Mommy has helped me see what is important and what is not.

9.  If it's something important, I'm even more indignant about it than I ever was before I had Cooper.  I have even less patience for rudeness, cruelty, ignorance, intolerance, stupidity and injustice than I have ever had.  I believe that the combination of number 8 and 9 constitute growing up enough to really understand what it means to pick battles.  I've learned to target my energy at that which is worthy of it.  Most of the time.   But if I'm tired and/or hungry, I will still take your head off over stupid crap.  

10.  My favorite sport is college basketball.  More precisely, Michigan State basketball.  Go Green!

11.  I always wished I was a good enough writer to be one.  Steinbeck is my favorite.  East of Eden is a masterpiece but Travels with Charley is one of my favorite books (thanks to my friend Marco for introducing it to me).  I find myself thinking back to it all the time.

Stay tuned for the rest of my Liebster Award posts.   I may even get Cooper to write some...since it's his blog, you know.

Saturday, March 23, 2013

Editor's Note: Justice Was Not Served

Editor's Note:
I ranted about this story on Facebook this morning, which probably isn't the best place for such a lengthy post. I am reposting with some edits for The Cooper Chronicles.

This story scares me so much. I honestly don't think the cops thought they were doing anything that would result in killing a man over a movie ticket. But, we have a long way to go with community outreach and education so that confrontations over movie tickets (and other equally pointless, stupid and ultimately harmless actions) don't occur to begin with. To me, this is a story of intolerance, abuse of power and lack of perspective. Had the movie theatre employees had some compassion, had the off duty police officers been trained with a little more sensitivity (or used the training they were given. I don't know what kind of training they receive, if any, on dealing with people with intellectual disabilities), had the bystanders in the theatre had a little backbone, this whole thing could have been avoided. Actually, had any of these people had ANY of these traits! Ultimately, who cares if a man who clearly has an intellectual disability watches the movie twice but only pays once?  Do I think he should be allowed to break all the rules just because he has Down syndrome? Absolutely not. But to allow this situation (over what? $15 max?) to escalate to the point of needing to be restrained IS the fault of the professionals. Whether serving in an official law enforcement capacity or not, they were the professionals and the authorities in the room. Ultimately, they are responsible for the proper use of that authority. While I don't necessarily feel these officers should spend the rest of their lives in prison, they should at least be held responsible for being terrible at their job. I know cops aren't social workers but there has to be training in de-escalation and there should be some minimum standard of proper perspective when dealing with situations like this. The police are the police for all of us, even those who may not understand the full ramifications of their actions and may not possess the capacity to be held equally responsible for the end result of such a confrontation.

Sunday, March 17, 2013

Who I Am

Who I Am…?

I am just like you.

Just like you, I am not the sum of what I can’t do.   Can you imagine if you were defined by all the things you couldn’t do?   Would it go like this?  “Meet, Jane.  She’s not a rocket scientist.  She’ll never go to the moon.  She can’t walk on a tightrope.  She’s not a Doctor or Lawyer.  She’s just a caring person who loves and cries and laughs and breaths.  Who hugs and plays and makes your heartache.”   Who am I?  I am just like you.  I am Cooper Charles Stillman.  I am the joy you didn’t know you needed.  I am a philosopher of simplicity.  I live in the moment.  I know when you’re sad.  I make my parents crazy.  I am learning.  I am the sum of my soul.
Below is a link to the International Down syndrome Coalition's new video for World Down syndrome Day (Thursday, March 21).  The theme is "Who I am."  I am one of the producers of this video.  By that I mean, I gave a little bit of money and they put my name on the list.  But I'm very proud to support this project nonetheless.  Please check it out and share it and this post.

Friday, March 15, 2013

Trickster Part I

You know what a hipster is, right?  We might have already been through this  but just in case...According to my Momma hipsters are people who shop at Urban Outfitters and pay way too much money to look like they spent no money at all, they make their own beer and all the guys have facial hair like some weird throw back to a couple of centuries ago.  Also, she says that men should definitely not wear skinny jeans.  I am not a hipster (I can hear my mom say "Thank God" in the background.  I think she's just mad that grunge is dead.)  I am a trickster.  Unlike hipsters, I bring joy and merriment where ever I go. Below is part one of my greatest tricks :

Bottles make great puddles 
I start by choosing a time when Momma is obviously very busy and I begin to complain wildly about how hungry I am.  Whining incessantly is my typical approach to this.  If I am ignored for too long though, I will resort to full out tears.  Works every time.  Momma rushes around in the kitchen making a bottle while I encourage her to go even faster from the living room.  It's fun to see how fast she can go!  Upon her return, she puts me in my  pack n play, on my little Michigan State Pillow Pet, and hands me my bottle.  At this point, I often grunt and thrash for the full, "I'm starving" effect.  This part is critical, I eat ravenously until Momma is satisfied that I have solid control over the bottle and she walks away.  Now, if I'm actually a little hungry I might eat some but this is not the point of the trick.  I learned that the hard way.  The more you eat, the less funny the trick.  In this case, less is not more.  I wait a couple of minutes until I know that her attention is fully refocused on her activity and then I spring into action.  Silence is key to this trick because if she hears me talking, she knows I'm not eating.  So, I quietly sit up, turn my bottle upside down, give it a few shakes and watch the flow!  There's nothing like it.  I watch it run in small streams down my legs, onto the pack n play and converge into the most amazing formula puddles you have ever seen.  It makes Momma so happy that for the next few days she keeps me on her lap while I eat.  Tricks on her!  I love sitting on her lap to eat.  It's my favorite eating place and this trick works like a charm.

Chew, Chew, Spit (Or, How Much Money Can I Waste?)
As many of you know, I have been in an outpatient feeding therapy program.  I hate it there.  I don't even know why I have to go.  I eat just fine.  I love my bottles.  Apparently they aren't age appropriate.  Momma also says that beer and wine (love!) aren't age appropriate either.  I don't get it.  So, I was going to this place two times a week and it was the terrible.  They sat me in a chair and made me play with food.  All kinds of food: crumbs, pudding (disgusting! I don't do purees or anything slimy.  That's just gross.), Cheetos, and sprinkles.  They kept trying to get me to bite down on this Cheeto wrapped in gauze.  I mean, would you let some strange person wearing purple gloves shove her hands, with a gauze wrapped Cheeto, into your mouth?  I'm guessing no.  So we would fight.  There were times when I would just give up and bite the damn Cheeto because I wanted it over.   But that was never enough for these people.  They always wanted me to do it again!  Not cool.  "I did what you asked, now knock it off."  For two months, twice a week, we went to this place  and then almost every day at home (although, Momma didn't wear those creepy purple gloves) we went through the same exercises.  It was dreadful.  But I found a way to make them stop.  Fighting wasn't working so I had to come up with another strategy.  This was my plan:  I do everything they want me to do except actually eat that stuff.  I pick it up, put it in my mouth and chew the heck out of it.  This brings all the wild cheering and the videos on facebook.  But here's the trick, I spit it out.  What I found was that after eight weeks of this, Momma said, "Enough.  No more feeding therapy."  I overheard long conversations about wasting money to pay to play with food, the rapid increase of power struggles not just around the food, how I have all the steps for eating but I haven't been able to organize them into actually swallowing food and how stupid (her word, NOT mine.) she was for scheduling this in the middle of winter.  And then one day we quit.  My trick worked!  It seems as though the chewing was all she needed to see.   So now I chew my food.  Sometimes for old times sake, I play this game where I pretend like I don't want to anymore or like I've never done it before.  That always gets a laugh.  And it only cost Momma $600!

Stay tuned for Trickster Part II.  Maybe I'll do it in the form of "Top 5 Things Never To Say About ___________."  Those seem to be all the rage these days.