face-closet

Let’s talk a little about my view from the private-special-school-closet where I wave outside but often wait to tell other advocates/parents of our choice to enroll Marcus in a “special school.”

Benefits of Inclusion in the Public Schools

 

I admit, there is absolutely no doubt, inclusion of students with special needs in the general-ed classrooms which offer a safe and positive environment are beneficial to all of the students and community. I am familiar with the research that shows students in inclusive classrooms are often more advanced in the basics of academic skills such as reading, writing, and math. When Marcus was in an inclusive preschool, I rejoiced in all of these things and saw a bright and full future for him with this in mind. Yet, circumstances changed.

Also, I admit that when I see thriving young adults with Ds who had public school opportunities all the way through their school career, I’m filled with both admiration for their parents as well as a twinge of jealousy at their experience. In each of those inclusion cases, of those people I know personally, the process wasn’t easy. There were battles and maybe even scary bits, but as a family they endured, and pushed forward, and often were not only successful but also pioneers in their communities. I am impressed.

Exception or the Rule?

On the other side of the worldview are so many families I know who were (and still are) thrown not just road blocks but completely off the road. Their children have (and do) endure environments which are not only impossible to navigate academically, but also leave them either segregated and lonely or moderately included but unsafe.

Let us just acknowledge together, as a community for a moment, that even in this progressive point in history, most parents do not have the resources (and let’s also acknowledge that resources is a huge concept encompassing not only money, but also personal education/experience, support (familial, cultural, and community), and the simple sounding but most important component, physical and mental energy) not to mention the (also simple sounding) access to the tools needed to navigate “the system” or even just get the system to do what is fair and reasonable.

To this larger but quieter population, I again have one foot hiding in the private-special-school closet door, because a school like the one in my community is so unique, rare. I know there are so many parents across this country that are desperate for an option…out.

How the Conversation Goes

So this is how the conversation has played out in real life: In speaking to new-old friends from across an ocean or two. (Two friends, different oceans) As they speak of improving and demanding inclusion for their young children in their respective school systems, as they fight the stigma of “special schools” and demand enrollment in their own neighborhood schools, I feel like it’s a confession when I begin to explain Marcus’ school experience. It sometimes feels like I’m sharing my deep, dark, secret when I explain that Marcus was not included in the public school system. That when I was beaten by the system, now over 20 years ago, even with attorneys in tow, I was informed that their classroom choice was final and the options were over.

So We bolted

We enrolled Marcus in a school with the tagline: “Special people meeting special needs for special people.”SRE at school

And the thing is, we made some adjustments over the years for his education, but never pursued the public school battle after that deep wound. I only have one big school war wound to tell of, really, and it shaped our decision for Marcus’ entire school experience. That short tale with more detail is here in School Choices Part 1, then how we found the Madonna School in Part 2, Choosing The Madonna School.

At this time of year, with Back to School in the generalized consciousness and also with the Madonna School Celebration coming soon, I find myself urged to share all of this. This year, on August 13th Marcus will be honored as Alumni of the Year at the Madonna School’s largest fundraising event.

Fundraising is important to any private school in order to keep up with the needs of their current student base, continue their role important to the community, and in the case of the Madonna School, keep up with new technology and other educational tools necessary for best serving their student base. It’s also particularly tricky for the Madonna School because, although it is a Catholic school, there is no direct Parish supporting it. There is not an alumnus base of prosperous donors. Also, one-third of all Madonna students come from families who qualify for the federal free or reduced cost lunch program, leaving most families unable to shoulder the costs involved with continuing the school’s mission. In fact, the tuition covers only a fraction of the actual costs to serve each student’s educational requirements.

Confessions and Gratitude

 

So, in my coming out of the private-special-school-closet, let me share a little piece I wrote a few years ago whole I worked on the Madonna School Blogsite that still rings true:

Somehow, it always comes back to gratitude…

Blogger Cassy Fiano shared much of another anonymous blogger’s opinion in the on-line article, “Is there a wrong answer to terminating a baby with Down syndrome?”  The anonymous blogger began: 

I was so late in pregnancy, there seemed not to be time to meet with a genetic counselor so I did my own research on Down syndrome. I concluded it was a grey diagnosis where best case was hard and worst case terrible. I could envision handling the early years, but not the long term.

She goes on to explain how, though she chose to terminate this pregnancy, she will always think of and love her son with T21. In fact, she says,

I loved him just as much as the kids I have living here with me today,

and how she is a better mother now to her other children from this experience. Also, according to her blog:

The parents (of children with Down syndrome) have suffered. The kids have suffered too. I didn’t want that future for my son or for my family.

As for me…wow.

After I moved through the sick feeling in my stomach, (Exactly how far into this pregnancy was she?) beyond my overwhelming impression of hypocrisy (How does this action demonstrate love in any way?) into indignation that all children with Down syndrome and their parents must “suffer” greatly, (Oh, please…I do not believe that Marcus has suffered or suffers now, particularly in any way that this woman rationalized for the sake of her own fear) then, finally, my emotional rollercoaster turned to gratitude.

You see today I have been working on scheduling and editing future posts for this blog. Posts written by those folks who work with the students of the Madonna School and the Workshop. Posts that remind me that here in Omaha, young people with intellectual and developmental disabilities have a place where they are not merely cared for but pushed to reach their potential. Where adulthood is not a future to be feared, but a time of continued growth and opportunity. Not every community is blessed with an environment of Christian Love as well as professional dedication to teaching like the Madonna School. 

Do we, families and those who support children with developmental disabilities, have challenges? Yes. Have there been scary times. Yup. Are there fears about the future, uh, yeah. However, can any parent honestly say they don’t have concerns about their child’s future? About each child’s unique set of challenges? I doubt it.

Given the tools: a safe environment, programs that emphasize potential, and a patient and well trained staff – children, teens and adults with disabilities are able to thrive in our community.

**Now a bit more epilogue:

marcusgraduatesAs to the “special school closet,” well, as an advocate I am first and foremost an advocate for and with Marcus, and when his public school roadway was blocked, Quinn and I had to find an option that served Marcus’ needs. We are thankful and blessed to have had an option here to enable our Marcus a safe and loving place to learn in a “special school.” I have great admiration for the inclusion fighters, I have great heartbreak for those without options, and I have a distaste for parents and others who choose to vocally judge another’s battle based on their own opportunities. 

Thankfully, the Madonna School is an option in our area that families choose for a variety of reasons, not the least of which is the chance for families to choose a school that is faith-based. Obviously, if you know us, this is not why we chose the Madonna School, but we didn’t hold it against the staff for turning Marcus a bit to the Catholic side. Anyway, Marcus has been working on his speech for the upcoming event and we look forward to sharing that evening with you all, too. Maybe even try the “live Facebook video” again…we’ll see.

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