Sunday, February 12, 2017

Dear Secretary DeVos

Dear Secretary DeVos,


I know that you and your family care about children.  I live and work in Grand Rapids, Michigan and the contributions of the DeVos family are evident throughout our community.  That is why I’m reaching out to you today, one mother to another.


As a parent of a child with Down syndrome and special education advocate, it was difficult to hear you respond to Senator Kain’s questions about the Individuals with Disabilities Education Act (IDEA) with seemingly little understanding of the law that protects my son’s right to an education.  Ms. DeVos, I’d like to explain, from my perspective, why so many of us have expressed concern over your response to the Senator’s questions regarding the IDEA.  I hope this can be the start of a larger discussion about the benefits and protections for children that the Department of Education oversees through its implementation and enforcement of the IDEA.


The IDEA is the landmark civil rights law that protects the right of America’s children with disabilities to receive an adequate education.  Note that I did not write “an exceptional education” as most parents would assume is the right of every child in our public school system. The Endrew F. case before the current Supreme Court is worth a read to see what kind of low bar we are actually talking about protecting. One day, we hope to have an education system that sets the same expectations for all students and provides the necessary supports to achieve that.  The IDEA is the foundation for that future and is the only thing that stands between our children and an education with trivial to no benefit.


The law was first enacted as the Education for All Handicapped Children Act of 1975, and ensures access to a free appropriate public education for all disabled children.  FAPE, as it is known, was not always the law of the land.  Prior to 1975, it is estimated that nearly 1 million children with disabilities were excluded from school (Wright & Wright, 2014).  In 1970, US schools educated only one in five students with disabilities and many states had laws that strictly excluded children with disabilities from school (US Department of Education, 2010).  Because of the Education for All Handicapped Children Act, which later became the IDEA, schools have had to open their doors to students with disabilities and adhere to the concepts of FAPE, Least Restrictive Environment (LRE), high expectations and inclusion in the general education environment, to the maximum extent appropriate to receive federal funding through the IDEA.


Before this landmark legislation, there was no assumption that students with disabilities would even be allowed in the school building.  I can’t imagine being told that my beautiful, funny, compassionate and smart son is not welcome in his neighborhood school.  Can you imagine someone telling you that?  Today, not only has access been dramatically improved, but so have outcomes. The 2004 reauthorization of the IDEA states,

“Almost 30 years of research and experience has demonstrated that the education of children with disabilities can be made more effective by having high expectations for such children and ensuring their access to the general education curriculum in the regular classroom, to the maximum extent possible, in order to meet developmental goals and, to the maximum extent possible, the challenging expectations that have been established for all children and be prepared to lead productive and independent adult lives, to the maximum extent possible (20USC §1400(c)(5)(A)(i) and (ii)).”


To further cite the department you wish to lead,

“…significant national progress has been made in ensuring equal access to education for all children with disabilities.  During the 2007-08 school year, IDEA mandated programs and services were provided to more than 6 million children and youths with disabilities and more than 320,000 infants and toddlers with disabilities and their families  (US Department of Education, 2010).”

In a study of nearly 3,000 preschoolers receiving early intervention through IDEA mandated programs, results indicated that there was an approximate reduction of 16 percent per year in the number of children receiving special education and related services over a two year period because they no longer required special education (US Department of Education, 2010).  The IDEA has proven that early intervention works to benefit our most academically vulnerable children and help reduce the economic impact of educating those students throughout their educational career. It is also worth noting that, beyond school, the positive economic impact of a self-sufficient, independent adult in the community far outweighs the cost in the early years to provide special education and related services.


The IDEA also ensures that children with disabilities will be educated in their least restrictive environment (LRE).  Before the protections of IDEA came into being, even when students with disabilities were allowed into the school, they were largely educated in segregated settings.  This resulted in low expectations and poor outcomes for students with disabilities.  There is an ever-growing mountain of research that demonstrates that educating students in the general education environment, with appropriate aids and services, is the most effective location for the majority of students with disabilities.  The research shows that including students, to the maximum extent appropriate, in general education classrooms has several benefits – and not just for those with disabilities:

  • Better school attendance for those with disabilities
  • Less disruptive behavior for those with disabilities
  • Employment and independent living after high school were increased(Wagner, Newman, Cameto, & Levine, 2006)
  • A larger number of students with high incidence disabilities made gains in academics in general education classrooms than in segregated classrooms (Waldron, Cole, & Majd, 2001)
  • The presence of disabled students in general education classrooms resulted in improved academic outcomes in reading and math for non-disabled students as compared to their non-disabled peers in fully segregated classrooms (Waldron, Cole, & Majd, 2001)


Additionally, the protections of the IDEA extend to charter schools.  I understand that you are a strong advocate for school choice and the charter school movement.  wonder how, without the protections of the IDEA, we can ensure equal access to students with disabilities?  With the seemingly sole focus of administrators to get and keep student test scores high, it seems clear that there would be a clear disincentive to welcome and educate students with disabilities - particularly those with intellectual disabilities - if the IDEA is not enforced in all schools receiving federal funding.  I worry about a post-IDEA, charter school world where my son would be left to linger in a public school that receives little funding due to its low enrollment because all others who could, fled to schools where they were welcomed and my son was denied access because of his disability.  The end result would surely be a return to a fully segregated school system for those with disabilities.  To be clear, families like mine still must fight battles in our schools, even with the protections of the IDEA.  However, without the strict enforcement of the IDEA, we would be setting our kids with disabilities back 40 years.


The IDEA doesn’t address all the barriers to a quality education for our children and it can be difficult to navigate, but it protects the most basic rights of our children to an education and the U.S. Secretary of Education should understand and strongly enforce it.  I urge you to reconsider your comments made at your confirmation hearing.  Please reach out to the large and welcoming disability community and engage us in this conversation.  We want you to be successful, but many of us fear that your lack of experience in the world of special education paired with your advocacy for school of choice, vouchers and charter schools will result in our children being left behind again.  It doesn’t have to be that way.  Please work with us to ensure that the enforcement of the IDEA remains consistent and strong so that our children may continue to make the academic and social gains that are promised to every child in this country.


Respectfully yours,

Amanda Rhines





US Department of Education. (2010). Thirty-five Years of Progress in Educating Children With Disabilities Through IDEA. Alexandria, VA: ED Pubs, Education Publications Center.

Wagner, M., Newman, L., Cameto, R., & Levine, P. (2006). The Academic Achievement and Functional Performance of Youth with Disbilities: A Report from The National Longitudinal Transition Study-2 (NLTS@). Menlo Park, CA: SRI International.

Waldron, N., Cole, C., & Majd, M. (2001). The academic progress of students across inclusive and traditional settings: A two year Indiana inclusion study. Bloomington, IN: Indiana Institute on Disability & Community.

Wright, P. W., & Wright, P. D. (2014). Special Education Law, 2nd Edition. Harbor House Law Press.


Thursday, July 30, 2015

I Don't Want to Ride that Tart-Cart

“I don’t want to ride that tart-cart.”  This is a new one for me and something I heard in a meeting of professionals and educators.  I’m sure my eyes widened and my body stiffened but I don’t think anyone noticed.  Maintaining a professional demeanor is important to me, though I often have a difficult time hiding my emotions.  I’m a work in progress.  To be fair, it was used as a quote of a middle school student.  However, it was thrown out there with the kind of cavalier attitude of a “nudge-nudge, wink-wink, we all feel that way too, don’t we?”  Well I don’t.  This person didn’t know that I have a son with Down syndrome and I’m sure they would feel badly for having said it, had they known.  However, it shouldn’t take knowing that there is a person in the room who has a child with an Intellectual Disability to not use such disrespectful and hurtful slang.  It also indicates a casualness about the use of “retard” and its many derivations that go completely unnoticed by most people.  I highly doubt that had a student used the “N-word,” she would have chosen to directly quote it in a meeting as a way to empathize with students who were embarrassed to ride a chartered bus that happens to be small.  In the general populace, I’m not so surprised to hear terms that are outdated and hurtful any more.  It still stings, but since I can only impact the people in my own life, I’ve come to a place where I can generally let comments (that aren’t aimed at my son, specifically) wash past me.  But when I hear Doctors and Teachers and Administrators use language like this (and others like “SPED Kid,” “short-bus,” “THEM”), with the ease and matter-of-factness of saying the days of the week, that’s a different story. 


But before I got too outraged, I stopped myself.  As little as five years ago I wouldn’t have thought twice about that comment, probably would have laughed and most definitely had said worse.  So I had to stop myself and grant the grace, that I hope all the people I have offended throughout my life, have granted me.  I’m so lucky and humbled to now be on the side that knows better. 


And then I get mad again!  People who are in positions of authority and power have a duty to know and be better.  Doctors who are still giving out old and inaccurate data to expectant mothers of children with Down syndrome?  Unacceptable.  There is some debate about whether the termination rate for prenatal diagnosis of Down syndrome is 90% or 67% but either way what we do know is that since the advent of prenatal screening, the population of people living with Down syndrome has been reduced by 30%.  (Side note:  the non-invasive prenatal test has only been in use since October of 2011, one month after my son was born, and I can’t imagine that is helping matters.)  Why?  Old, outdated information being disseminated by Doctors who should know better.   I still hear Doctors who regularly refer to our kids as “Down’s Kids” rather than as a kid with Down syndrome (person first language is important because none of us wants to be referred to as the sum of our limitations before we are people) and I’ve heard horrific stories of mother’s-to-be being told that their child would basically have no future.  There are still many doctors who don’t think people with Down syndrome should be eligible for organ transplants should they need them because they “can’t live the kind of life the rest of us can.”  In 2015!  We aren’t talking 1960 here.  Educators who throw around slang like “tart-cart?”  Not acceptable.  As the educator, you have a duty to model respectful behavior to your students and help them understand that having a first amendment right to free speech doesn’t mean that what you say has no consequence.   How is my son ever going to be given a fair shot at a quality education if the people running the schools still think of him as something others can openly ridicule?  How am I ever going to convince these same people that my son deserves to try for a diploma rather than “certificate track him” at an early age with no option for the kind of academic classes and high expectations the rest of the kids just receive as a right? 


But then I go back to grace.  It's so difficult.  I often wonder if my penance for being hurtful to others in the past is to spend the rest of my life granting grace to those who have not had their eyes yet opened to the world of people living with Down syndrome.  They have not seen the determination to achieve that we have.  They have not known the full body hug of a child with low muscle tone that just melts into you.  They have not seen the smiles and joy at achieving what so many people said they could not.  They have not been transformed by the unconditional love and acceptance of a person like my son.  So I will grant grace and atone…and fight like hell to get my kid, and others like him the health care, education and respect they deserve. 

Wednesday, October 29, 2014

Mistakes and Moving Forward

Cooper is three years old and is still 100% bottle-fed.  We’ve moved from breast feeding to formula to a shake of pediasure/almond milk/pureed fruit or veggies with beans or scrambled egg.  Aside from this issue he is doing remarkably well.  But this is a huge issue that has completely overwhelmed me and despite seeking outside therapies at two separate places (one of which could have been called “How to make a feeding problem worse”) and  taking two months off of work to “do it myself, “ we have made such little progress that I have at times lost hope that I am capable of helping him.  It should also be noted that he was accepted into the intensive feeding therapy program only to be denied by my insurance company.  Don’t even get me started on that one!

Here are the mistakes that I’ve made that have led us to where we are today.  My hope is that by getting them out into the world, I can stop beating myself up over them.  I’m seeking liberation from my guilt so that I can refocus on Cooper and what he needs.  Hopefully some of my mistakes can help other people go a different way.  Get ready because it’s complicated!

Mistake #1:  This is the big one so I’m getting it out of the way first.  I forced him.  I’m going to quit pretending I didn’t do this.  There have been times over the last few years when I just put the food in his mouth despite his adamant refusal.  I did it out of frustration.  “Just eat the damn cracker!!! ”  Nice.  Yup.  I did that to a little boy who had low oral/facial tone and didn’t know what to do with it once I shoved it in there or have the ability to manage it in his mouth.  And I scared him.  The thing is, I knew that he couldn’t manage it on his own.  I was tired of nothing happening followed by nothing happening some more -- for months on end.  My own frustration overwhelmed me and I tried to make him eat things he was not yet capable of eating.  This is perhaps the thing I feel the most shameful about.  I never held him down and flooded his mouth with food.  I never put him in danger and I didn’t physically hurt him but I did bully him and it was borderline abusive and completely wrong and definitely contributed to his oral aversion.  I have to own it and let it go because it is keeping me from being effective.

Mistake # 2:  I over-encourage.  Pressure can come from both positive and negative places.  Forcing him to eat = negative.  Throwing a freaking parade when he licks a spoon with puree on it = positive.
Both = pressure and pressure = refusal.  When you over encourage you are essentially robbing a child of any intrinsic motivation to honor their own hunger.  They are licking the spoon because they want you to cheer, not because they want to eat.  And like all external motivation it doesn’t last.  So the few times that he’s eaten tiny little bits of anything, I’ve cheered and danced and guess what?  He won’t eat it again.  It has happened so many times and I’ve banged my head against the wall (yes, literally) over why it doesn’t “take.”  It doesn’t take because it’s not about the food.  He just enjoys seeing me act a fool.  Neutrality is the key.  I have learned this recently and am working on it.

Mistake # 3:  I’m inconsistent.  Being a fulltime working single mom leaves me with a couple of problems.  The first is that I’m not home with him during the day.  I’ve not been able to effectively communicate my expectations to caregivers and for the first few years our daycare situation was so ridiculously complicated that there was almost no point.  But I should have tried harder.  The second is that by the time I get home, I am so tired (oh yeah, Cooper is also a terrible sleeper so most days start with minimal amounts of sleep from the night before) that some nights, I JUST CAN’T DO IT.  I don’t have the patience to endure it (see #1).  But consistency is the key.  Opportunities to practice eating have to happen on a schedule and several times a day.  Like every couple of hours…that’s a lot.

 Mistake #4:  I resorted to tricks.  Get him laughing (which he does so well) and shove the spoon in there.  Cross your fingers that he swallows it.  Not even one time did this work.  In fact, it resulted in him mistrusting me.  To this day, he does not trust me around food.  I am slowly building that trust.  On a good day, he will let me touch his tongue with my index finger.  Actually, last night he let me rub a back molar that is coming in.  I was amazed.  It has been a slow process of rebuilding trust and honestly, it’s still the case that if I am approaching his mouth, or even his face, with my hand, spoon, syringe, etc., he starts screaming as if I’m going to hurt him.  That crushes me every time.  It brings up all the mistakes that I made that contributed to his reacting that way.  It’s exhausting.

 Mistake #5:  Not allowing him to experience hunger.  When your child is not eating all you can think about is how they might die.  I’m not exaggerating.  It makes sense.  If you don’t eat, you die.  I still don’t trust that Cooper won’t let himself die of hunger.  I have consistently undermined him by feeding him with his preferred method (bottle) whenever he indicated hunger rather than setting an appropriate schedule of meals and snacks and not feeding him his bottle on demand.  Of course, until he is actually eating enough to be nutritionally sound he will need to be supplemented but I’ve not trusted that a little bit of hunger is ok and might just be what he needs to feel to start connecting to real food.
Mistake #6:  I have wasted so much time and energy chasing the one magical food that he will like and swallow and will teach him to eat.  Ta-da!  Magic!  (see #2 for when I thought we found it.)  There is no magic food.  As his skills grow and we move past all of the positive and negative pressure he will eat.  It may take years yet but he will.

It's hard to not feel like a failure as a parent when your child won't eat.  I feel like a failure.  I wrote this hoping that it would help me overcome it because the feeling of failure is what continues to keep us in neutral. 

Breathe. Trust. Breathe some more.

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.