My Heart is Heavy

Me with our first group of students, including Darby, in 2008.

Me with our first group of students, including Darby, in 2008.

As we come to the end of the 6th program year of the Johnny Stallings Arts Program, I have been reflecting on all that we’ve accomplished in the past 12 months. We have experienced some incredible highs:

  • Project UP was selected to perform at the National Dance Day Gala in Los Angeles.
  • They were victorious at regional dance competitions in Alabama, Georgia and Tennessee.
  • We have doubled the number of people we are serving.
  • We completed the renovation of part of our building to house our new day habilitation program for adults.
  • We have re-vamped and improved our monthly social events for adults with special needs.

Personally, there have also been some tremendous high points this year:

  • I launched this new blog and website and have attracted over 25,000 readers in less than 90 days.
  • I completed 22 hours towards an Executive MBA in Social Enterprise from Columbia University and received a Certificate in Business Excellence.
  • I graduated from Leadership Huntsville Class 26.
  • I was honored by the Women’s Economic Development Council for my contributions to the community.
  • My son celebrated one year of sobriety.
  • My daughter moved back home after two years in South Carolina.
  • And Alan and I celebrated 28 years of marriage.

And yet, I feel so low today because no matter how high the achievements have been, the losses this year have been staggering. We lost our beloved Darby Jones on October 28, after her courageous battle with leukemia. One of our students underwent a kidney transplant at the Mayo Clinic and is still recovering from the surgery. Another student is slowly recovering from a series of strokes and grueling rounds of chemo in her battle with leukemia. We lost an adult in the day program to colon cancer, a beautiful man who we immediately fell in love with and lost way too soon. A three-year-old girl has spent the last few months in outpatient treatment for various health problems and another young child is in a body cast, recovering from hip surgery. Just this morning, we learned that a member of Project UP, who should be receiving his trophy and being recognized as a high school senior at our recital on Saturday, will instead be recovering from surgery that is scheduled for Friday to determine if he has cancer or not.

And last Thursday morning, we lost a precious 9-year-old girl, an unexpected and heartbreaking blow to our program. When I started this program, it didn’t occur to me that the volunteers I recruited might have to face loss and pain nor did I realize that along with watching our students achieve great personal milestones, I might also have to watch them die.

Project UP with Melissa, Claire and Hayley in Los Angeles this summer.

Project UP with Melissa, Claire and Hayley in Los Angeles this summer.

Melissa, our Program and Operations Director, is expecting her first child any day now … Merrimack Hall’s first staff baby. While we were at the visitation on Sunday evening, Melissa reminded me that she began her pregnancy at Darby’s funeral and is ending it with the loss of another student … and that was before we learned the news of our other student possibly having cancer.

What a contrast … a new life beginning while others have ended.

I’m reminded of something I heard in my Sunday School class a few years ago. Dr. Donn Wheeler, an esteemed obstetrician, was leading our class in a discussion about the virgin birth. Dr. Wheeler said something like this: I’ve delivered thousands of babies over the course of my career. I can tell you the mechanics of how an egg and a sperm come together to form life and I can explain every step from conception to delivery. I know the science and the medicine like the back of my hand.

And yet, at each birth I attend, I’m reminded of the miracle of life and even though I can tell you the ins and outs of how that life came to be, it’s no less a miracle every time.

As I’ve become involved with people who have special needs, I’ve thought of Dr. Wheeler’s words many times … about the intricate marvel that is human life and about how easily things can go off course.

I’ve thought about how lucky I am that my pregnancies were uneventful, that my children were not injured during birth, that all of their chromosomes lined up in their proper order, that every molecule in every cell came together in just the right way … at just the right moment … to produce a healthy baby.

I’ve thought of how tenuous life is, how easily things can go awry, how fine the line is between complete health and something going terribly wrong.

On Thursday, Melissa and I had to tell the volunteers and parents that one of their classmates had passed away and the reaction from the teenagers who volunteer in the class was painful to see. I feel responsible for their pain because I’m the one who started this program, encouraged teenagers to get involved with us and put them in the position of laying their tender hearts on the line. I know in my head that being involved with JSAP is enriching the teens’ lives and that they are better people because they’ve allowed our students into their hearts but my heart is heavy when I see them grieving, questioning “why” and hurting so deeply.

On days like this, I fight the urge to say, “I can’t do this anymore.”

I said to Alan this morning:

“I wish I could do this without getting so personally involved”

He answered:

“You can’t because that’s why the program works … because everyone is a family now.”

I know he’s right and I remain committed to the work we are doing but sometimes, it just sucks, plain and simple.

Our students at the 2010 Dream Big! spring recital.

Our students at the 2010 Dream Big! spring recital.

Winston Churchill said, “In each person’s life, there comes a moment when they are figuratively tapped on the shoulder and offered the chance to do a very special thing, unique to them and fitted to their talents. What a tragedy if that moment should find them unprepared or unqualified for that which could have been their finest hour.”

I got that tap on the shoulder in November 2008, when I was first inspired to start a dance class for children with special needs. That tap on the shoulder led me to do something I never could have imagined, it’s introduced me to people I never would have met and it started a chain reaction that created an entire community of lives that never would have intersected if it hadn’t been for that one little dance class.

Until this year, I thought my tap on the shoulder was only going to be a source of happiness but the truth is that happiness and sorrow have to come as a pair…without one, you would never appreciate the other.

I wouldn’t trade knowing Darby or Anthony or Genavieve for anything in the world and I would bring them back if I could, but I can’t. If I could, I would give my own health to prevent other students from suffering, but I can’t. If I could, I would guarantee every teenager who decides to volunteer with us that nothing bad will ever happen to any child they meet and love through our program, but I can’t.

All I can do is remind myself every day that I got tapped on the shoulder for a reason and that tap on the shoulder created a family, so at least all of our hearts share the same pain. Winston Churchill never said that answering that tap on the shoulder would be easy or that it wouldn’t involve getting hurt but he did say that if we answer our tap, it will be worth it.

The State of Special Education, Part 2

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Here’s another head-scratching situation for you to help me understand. There are about 100 school-aged children in my program (we serve a total of 403 children and adults) and they attend school in several different school systems in our area. Four of my students who attend Huntsville City Schools spend up to three hours a day riding a bus because their neighborhood school doesn’t have a resource classroom. Three hours is a long time for any child to spend on a bus but for a child with special needs, it’s an eternity. The first time this situation was pointed out to me, I thought of several remedies:

  1. Drive your child to school yourself.
  2. Move to a house closer to the school that is equipped to serve your child.
  3. Home school your child…there are no private or parochial schools in Huntsville that will accept children with special needs.

Simple enough, right? If the school in your neighborhood doesn’t offer the services your child requires, just move! If the bus ride takes too long, drive them yourself!

Oh, if it was only that easy … and if only the way we are treating kids with special needs in the Huntsville City Schools was fair.

The reason why some children have to travel so far to get to a school that’s equipped to handle their needs is because our school administration decided to consolidate resource classrooms.

And then they decided to bus children from one end of town to the other to get them to the newly consolidated resource classrooms.

And they decided to cut $7 million from our city’s special education budget to help make our bankrupt school system financially solvent. And they decided to fire most of the aides that serve those kids whose IEP calls for one, which means that kids with special needs stay isolated in the resource classroom.

And for some reason, they decided it was fair that 11% of our school population should be responsible for 61% of the budget cuts put in place in 2012 to get our schools operating in the black again (budget numbers and the calculations used to determine these percentages can be found here).

I get it … you can’t provide the services that some children need at every single neighborhood school. It’s unrealistic to expect that every school in our system should have all the resources it takes to educate children with disabilities but … if you judge a school system by how it treats its most vulnerable students, it’s my opinion that Huntsville would get an “F.”

 

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Here’s an example: A family found out they were being relocated to Huntsville last year and began researching our school system to find the best school to serve their daughter, who has both physical and intellectual challenges. They narrowed down their choices based on all the factors you would expect – location, services offered at the school, housing costs, proximity to their jobs, etc.

They came to Huntsville to visit the schools prior to making the commitment of purchasing a home and when they went to the school that was on the top of their wish list, the principal personally said to them, “If you move into this neighborhood, your daughter will go to this school.” They loved the neighborhood, loved the school, found their dream home and bought it in April 2013. In August, two days prior to the start of the school year, they went to their neighborhood school to finalize the details for their daughter’s first day only to be told that the school was no longer able to meet their daughter’s needs and that she would be bussed across town.

I know that if I shared more details, it might make my case stronger but the parents are actively trying to get a better resolution for their child, which I don’t want to compromise. The bus picks her up at 6:30 every morning so that she can arrive at school by 8:00 a.m., and returns her home each afternoon at 4:45 … she’s the first one on and the last one off the bus each day. And yet she lives four minutes from an elementary school.

When the parents confronted the principal about this, the principal told them that while the situation is horrible, decisions are being made by school administrators in the central office, much further up the chain than a principal can control. School administrators have decided that there must be five children requiring services at a school before a resource classroom unit can be opened. Where did that number come from? Seems pretty random to me. We have 21 elementary schools in Huntsville but all of our special education students are bussed into two: Challenger Elementary or the Academy for Academics and Arts (our city’s arts magnet elementary school).

Parents are told that Governor’s Drive is the dividing line: If you live north of Governor’s Drive, you go to AAA, if you live south of Governor’s you go to Challenger. There are a lot of miles on either side of that dividing line. So, move closer to the school your child will be bussed to, right?

Well, for starters, have you tried to sell a house in the past few years? Easier said than done. And besides, our school system is making decisions in such an arbitrary manner, with no input from parents, with no opportunity for discussion and with no notice that I’d fear moving, if I was a parent, because those two schools could change next year … or turn into only one. If I had a child facing a 3-hour bus ride every day, I’d just drive them myself … unless I have a job.

How can we expect a parent to drop a child off at school and get to their own job on time if the school is 45 minutes from home, children can’t be dropped off earlier than 7:30 and they have to be at work by 8? The particulars of an individual situation can get us bogged down. The nuts and bolts of educating children with special needs are complex. The tools it takes to meet their needs are intricate.

The superintendent and school board have so much to consider when making decisions about the equitable distribution of resources in our system as they attempt to meet the needs of many different groups of children who require specialized learning environments and when they consider the number of kids they have to educate.

But children with special needs are not just a number … they are children, cherished by their families. When I think of the children my program serves, I see the faces of precious children who deserve our best and of the faces of their parents, who love them so.

I don’t have the answers but I wish our school administrators could at least acknowledge that I’m not talking about wheelchairs or diagnoses … I’m talking about children who are so much more than just their disability. What’s going to happen in five years, when those 1 in 68 children who are being diagnosed with autism spectrum disorders are school age? We don’t have the infrastructure in place to support kids with special needs as it is … what things will look like in five years is frightening.

I heard the superintendent of the Madison City school system say, at the 2012 State of the Schools Breakfast, “I believe we are moving toward a system where every student has his or her own IEP … where we educate children in a way that is best suited to them as individuals.”

I agree with him and if the estimates about autism are accurate, it won’t be long until the majority of our students will qualify for special education services so maybe school systems should start looking at what a system that treats each child’s education on an individual basis would look like. It’s my impression that Huntsville City School’s superintendent doesn’t look at children with special needs as anything but a number … and a problem.

I met him shortly after he moved to Huntsville and told him what I do. When I told him that I hated to hear that 10 of the families enrolled in my program had relocated to the city of Madison because they weren’t satisfied with Huntsville’s special education program, he said to me (paraphrased) … Good! Let Madison have them. Children with special needs are my worst nightmare. I never see their parents unless they are in my office, with an attorney, demanding something I don’t want to give them.

I was left to assume from this remark that the equitable distribution of resources to kids with special needs wasn’t going to be high on his priority list and his actions since then have supported my assumption. I wonder if it would be so easy for the superintendent and school board to make the spending cuts they’ve made if they just looked into the face of one child with special needs before they cut the funding that affects that child.

It looks to me like the board and superintendent only think of children with special needs as a liability … but they are so much more than that. Any decision regarding where a child will be educated should be a joint one, made by the administrators who use our tax dollars to pay for it, the teachers who have to institute it and the parents – who know and love their children better than anyone.

Yet, most parents tell me that they go into their bi-annual IEP meetings armed for battle because they have to go to war to get what their child needs and has a right to receive. 100% of the parents in my program tell me that the principal and teachers in their school are overworked, overburdened and are doing the best they can with what they’ve been given. They tell me the teachers and principals are as heartsick as they are over what we’ve done to the 2,800 children with special needs in our city schools (again, see here for verification of this number).

Where could more money for special education come from? I wish I had the answer. I always find it interesting that we rarely hear of cuts to an athletic program but arts program and special education are always the first on the chopping block.

I extend an open invitation to our superintendent and school board members to drop by Merrimack Hall any day of the week and meet my students – 403 people ranging in age from 3-64 – who have special needs.

A visit would at least illustrate for them that people with special needs are much more than numbers and deserve more than the bare minimum we have to give them. And a 15-minute visit to my program would also show them the tremendous benefit that typical kids receive when they spend time with kids who have special needs.

According to the Alabama Department of Rehabilitative Services, for every $1.00 you spend on educating a person with special needs, you save the taxpayer $7.00 over the course of that’s person’s life. Not only is it the right thing to do, it’s our duty to provide kids with special needs everything we can and it saves us money in the long run.

Savings or not, I believe we have an obligation to do better for those in our community who cannot do for themselves because of their disability or special need … those special education students could have easily been my children…or yours.

How does it work in your community?

Do you have students that spend 3 hours a day on a bus so they can get to a school that has the resources they need?

Is there a more equitable way to distribute the costs of educating children with special needs?

Please share your thoughts! You can reach me via email at info@dreamingwithyourfeet.com. Your anonymity will be protected.

The State of Special Education

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I’m not an educator, I have no background in special education and I’ve never had a child of my own in a resource classroom. I’m also not an investigative reporter, but with your help, I might become one.

My blog is only a month old and already I’ve got about 25,000 thousand of you to turn to for input, so I’m hoping you can help me figure out what the hell has happened to special education.

Maybe it’s just here in Huntsville. Maybe there are other communities out there where they’ve got it all figured out and have a great system in place for supporting students who require special education services. Maybe I’m uninformed or am only hearing one side of things because my sources are parents who are in the trenches, fighting every day for their children to have the education they are entitled to receive.

I’m hoping that you’ll comment on this post and enlighten me, guide me in my search for answers.

I’m going to start my investigation with one situation, one policy that has me scratching my head and wondering … what the hell has happened?

From what I’ve been told, in most of the schools in our county, parents are not allowed to visit or observe in their child’s resource classroom. When I first heard this from a parent, I thought I had heard them wrong.

What do you mean, you’re not allowed to observe what’s going on in your child’s room? You mean, you have to make an appointment so you don’t disrupt the class, so the teacher knows you are coming? No, they told me, it’s not that simple. They have been told flat out, “You are not welcome in your child’s classroom.”

My first reaction was to think this has to be a singular occurrence … maybe this particular parent has been “prickly” in the past, has done something to put the school’s administration on notice and made them think this parent might be looking for something to cause a stink about.

But as I asked more of the parents, I heard the same answer over and over:  Nope, we’re not allowed to go into our kids’ classroom.

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Okay, I get that since Columbine and Sandy Hook and all the other horrific incidents in public schools there is an increased need for security. I understand that the days are long gone when a parent can waltz into their child’s school unannounced and have lunch or help the teacher or watch what’s happening in class. I accept that you have to sign in, show an ID, have a purpose for your visit.

And I also get that a teacher wouldn’t appreciate a parent barging in without arranging it first, since I know they are held to an impossible standard of adhering to a certain number of “teaching minutes” in each day, minutes that are too precious to waste with unanticipated interruptions.

But to be told that you can’t come in the classroom ever? I don’t get that.

Parents told me they are given a variety of explanations for this policy, including privacy and confidentiality (if they go into a resource classroom, they might be able to ascertain another child’s diagnosis or might witness behavior problems), but the same parents also told me they are encouraged to volunteer in the school clinic … where they are privy to more confidential information than they would be in the classroom, info like which students take ADD medicine, who had diabetes or asthma.

Who’s behind this policy? The parents tell me it’s not the teachers – they would welcome parent support of their classrooms. Parents say it’s our school administrators, who don’t want a parent to visit a classroom and possibly see that their child’s IEP isn’t being followed.

Parents tell me that teacher’s hands are tied because special education in our city has been cut by more than $7 million, aids have been let go and it’s impossible for a teacher to adhere to every guideline in every student’s IEP because of this.

And what about those parents of a child who’s non-verbal? That child can’t go home in the afternoons and tell their parent what they learned in class that day. They can’t tell their parents if something wonderful happened to them … or if someone abused them.

The parents can’t help reinforce the things the teacher is working on because the child can’t communicate exactly what they are doing in class. And the parent doesn’t know what’s happening in the classroom because once the IEP meeting is done, the parent is locked out of further direct input into their child’s daily experiences. They get notes from the teacher, but a note isn’t the same as seeing for yourself what’s happening with your child in their classroom.

One of the things parents talk to me about is how isolating it can be when you have a child with special needs, how cut off from mainstream activities they and their children are. Not only are they cut off from the mainstream, they are cut off from each other, because in our school system, parents are not allowed to know who else is in their child’s resource room (privacy, again).

I find this ridiculous.

When my children were in school, I was the room mom and knew every child in the class and I had a roster with the names and emails of all the parents, too. I could get to know other parents because of that list, as we worked together to put on class parties and special projects. I could arrange car-pools, play dates and activities with the other parents because I knew who they were.

In the resource classroom, the parents are cut off from each other and, since they aren’t allowed to visit the classroom, the only way they can find out who else is in their child’s class is by becoming a vigilant observer of things like who’s on the bus.

Why do we make it so hard for families to connect?

What would it hurt for parents to know who else is in their child’s class?

So, please fill in the blanks for me as I try to understand this policy:

Why is it a good idea to keep parents out of the resource classroom?

What is it like in your school or community?

Is there a better way to protect privacy and still facilitate connection between people?

Please share your thoughts so I can understand what the hell has happened!