My Cry for Inclusion

(Settle in for a spell . . . this is a LONG one!!)

Several of you have asked for an update of our recent IEP / ARD Meeting.  And many more of you prayed for us to have wisdom and direction as we made choices for Chloe’s education for next year.  I really appreciate your thoughts and prayers and concern for us.  It’s been tough.

Here’s a quick update.

We are currently in disagreement with our school district about educational placement for next year.  We sat through a grueling 4 hour IEP/ARD Meeting the last week of school.

Paul and I (and my good friend who accompanied us for support!) stated the importance of Chloe’s continuing to attend her neighborhood school.  She made friends there.  She is progressing ahead of schedule on all of her goals and objectives.  We believe that she needs some additional support from the special ed teacher, but we want her to stay where she is.

The district administration made it clear that inclusion — at least to the degree that we were asking for — does not line up with their philosophy.  Instead, our district believes in sending students with severe disabilities to 4 different campuses at which they do special ed really well and are better equipped to educate a student like Chloe.

After 4 hours of no progress towards an agreement, we adjourned . . . later disagreed, and will meet back in August for more discussion.  Again, I would love your prayers for wisdom, direction, and favor.

Our goals for Chloe do not include shielding her from the real world or sticking her in a “special” classroom away from her peers and neighbors.

Our goals for Chloe include her being a part of her community — not a resident in an institution with other folks with disabilities.

The decisions we make today will decide what her life is like 10 years from now and 20 years from now and 30 years from now.  Every decision we make needs to take her closer to our ultimate goals for her.  Removing her from her home campus would not be moving her toward our ultimate goal.  No, removing her at this point would be moving in the oposite direction.

Below is a statement that I read at the 4 hour IEP / ARD Meeting.  I also sent it to a few people in our district to let them know what was going on.  It is long.  It is heartfelt.  It is honest.  And it was all but ignored in our meeting.  But I wanted to share it here since it really does communicate my and Paul’s hearts and desires for our daughter.  And it might help some of you understand why it’s so important for Chloe to be included.  (I have removed names of people and of our district.)

I am writing this letter to ensure that all of my thoughts are communicated at the review ARD of my daughter, Chloe.  I will read it in its entirety, and I ask that a copy of it be included with the ARD paperwork.

This year has been a rough one for Chloe.  And while some people worked hard to try to make this year successful for Chloe, the truth is that this year was not the success we had hoped for.  It literally pains me to know that most people on this team believe that this placement failed because Chloe wasn’t as smart as we thought she was . . . that Chloe is too dependent on her aide . . . that Chloe’s disabilities are more severe than we thought . . . or that RTE just doesn’t have the staff to support such a placement.  None of those reasons led to the failure of this placement.  The truth is that this placement was unsuccessful because of a lack of training.  And that lack of training led to a huge disservice – a disservice to the staff working with Chloe, but mostly a disservice to Chloe.

Because of Chloe’s achievements last year in 1st grade, the decision was made to move Chloe from a <self-contained special ed> placement to her home campus with supports.  Included in the supports was a full-time aide to assist her with staying on task and with self-care, hygiene, and general safety.  The transition was a hard one, and the first 3 weeks of school were unbelievably difficult for her.  As a reminder, Chloe was crying and screaming and throwing herself on the floor all day everyday for the first 3 weeks of school.  Chloe was hitting and was stressed out and miserable.  And all of this was going on unbeknownst to us, her family.  I didn’t call or visit during those first 3 weeks — I was attempting to give <the school staff> some time and space at the beginning of the year and was waiting before sticking my head in, knowing that I would be contacted if things weren’t going well.  As it turns out, things were not going well at all, and I was not contacted.  We will never know the impact those traumatic 3 weeks had on Chloe and on her success at <her home campus>.

Then a little more into the school year, her general ed teacher left on maternity leave – perhaps not the wisest of placements for Chloe.  So about the time Chloe was learning that maybe school was a safe place after all, she was faced with another big transition – getting used to a long-term sub.  Then a few weeks later, Chloe’s aide quit, and Chloe was faced with another big transition of acclimating to a new aide.  And shortly thereafter, Chloe’s general ed teacher returned – presenting Chloe with yet another big transition.  (I hope that something was learned here about thinking through classroom placement for special ed students you may try to include in the future.)

I partly think that without some of these negative events, maybe Chloe would have been more successful – that maybe if Chloe felt more secure and didn’t have so many transitions to work through maybe she would have had a better year.  We don’t know how much these events and insecurities have affected her.  But I truly think the failure of this placement falls on the lack of training.

I’ve already thanked <a district staff member> for her efforts and for the time she spent training the staff at <Chloe’s campus>.  It was, in fact, <that district staff member> who approached me about Chloe’s attending <her home campus> this year.  <That district staff member> is a valuable, knowledgeable resource.  She is good at her job and passionate about special education and about children.  But <she> is not an inclusion specialist.  What we were attempting to do with placing a child with disabilities on a campus and in a classroom with typical peers all day is called inclusion, and it’s something that <this district> does not generally practice.  It is a placement that requires new skills and new tools and new thinking.  That is the reason that at every meeting and in every phone call, I repeated the need for training.  That is the reason that I included an addendum to the ARD earlier in the year so that these specific trainings could be listed and referenced.  I listed specific training ideas that I knew were needed and would be helpful for success.  I requested that an inclusion specialist be called in to work with the staff working with Chloe.  I requested that teachers and other staff members be sent to the Inclusion Works conference in Austin in February.  But my spoken and written requests for training were obviously dismissed.  Throughout this year, I have attended not only the conference in Austin but several others locally, and I have never seen any of the people sitting at this table at any of those trainings.  It is the lack of training that made this placement unsuccessful.

At these different trainings, I have met people who successfully include students with disabilities in general education classrooms.  These campuses and these teachers and these aides have undergone very specific and skilled trainings to make it successful.  And I have heard stories from them of children with more severe disabilities than Chloe’s who are included and are successful.  I have heard stories of included students with full-time aides who are successful with that aide because of the training that the teacher and the aide received.  It is possible.  It is happening.  It is working.  But it requires training.  And this staff did not receive that training.

I believe, too, that there is a district-wide prejudice and ignorance that hindered Chloe’s progress this year. At <this district>, if a student presents with more involved disabilities, then, as a general rule, they are bused to a special campus that can service them. Take this quote as a case in point:  “An all day placement in a general education class is not the environment for a student with so many disabilities.”  It is a direct quote from the written statement of a grade level team leader at <our home campus> in regards to Chloe.  This quote and the attitude behind it show the extreme ignorance that is prevalent.  While I think we would all loudly and passionately disagree with the hurtful and prejudiced statement:  “The front of the bus is no place for a person with black skin,” somehow the notion of busing a child to another campus because of her disabilities is an accepted practice. Including a student with significant disabilities is not a common practice in <this district>, and I believe its teachers remain ignorant of this discrimination. It is shameful that these teachers have not been introduced to successful models of inclusion.  It is shameful that what we were asking them to do for Chloe was a very foreign concept to nearly everyone involved.  I think the district as a whole is selling their disabled students short all because of a lack of education and a lack of training of its staff.  And my daughter was one of the victims of it this year.  Many, many times I have heard the <district> mantra of  “Special Education is not a place – it’s a service.”   But I am left wondering after this year:  If special ed is not a place but a service, then why can’t my daughter get the service at her home campus?  Why can’t she be serviced here?  While we attempted to service Chloe at her home campus, there was no sufficient training; and therefore, I feel that lots of precious time was wasted.  And I am not willing to sacrifice anymore of Chloe’s precious academic time while waiting on the needed training to take place.

I think it is because of the lack of exposure to inclusion that it oftentimes seemed that the goal was to make Chloe as much like every other 2nd grader as possible – to adapt Chloe so that she fit into the 2nd-grade-student mold in a way that was comfortable for everyone.  Of course, that goal went unmet since Chloe does not fit that mold.  I was told several times early on that <this campus> “does special ed differently” than other campuses, but that is an excuse that I still can’t accept.  I think if more of the staff had been introduced to the elements of and philosophy of inclusion, then this year would have looked very different for Chloe.  Had the staff been educated and trained in inclusion, then they would have had an understanding of why it is important for Chloe to attend school with her peers.  Had the staff been educated and trained in inclusion, then they would have understood that it is not necessary for Chloe to fit into that 2nd-grade-student mold and they would have had the freedom to do things that are important to Chloe in order to support her.

I hope that everyone at this table knows Chloe well enough to know that her grades and scores are not indicative of what she knows and understands.  I have said from the beginning that there does not exist a test or an evaluation or a worksheet or an assignment that can tell us what Chloe knows and what she doesn’t know.  While most children purposely choose the right answer when they know it because of an intrinsic importance and motivation, Chloe lacks that intrinsic motivation.  Even when she knows the answer, she will oftentimes choose a different one for some reason – mostly just because it doesn’t matter to her whether she gets it right or not.  I hope that everyone at this table knows Chloe well enough to know that she knows a whole lot more than you were able to get her to show you.  None of us truly knows how much Chloe knows.  And that is the biggest reason that Chloe needs to be in general ed – she needs to be exposed to the full curriculum because she very well may be understanding everything taught in the class.  Just because Chloe is nonverbal, just because she is tricky, just because she is stubborn is no reason to assume that she doesn’t understand what is being taught.  I would much rather err on the side of teaching her too much and of expecting too much from her than to pull her out of general ed with the assumption that there are concepts that are too difficult for her.  None of us knows that.

Chloe has made some new friends this year.  Her new friends like and appreciate her.  For the first time ever, Chloe got to experience seeing her brothers in the hall at school.  For the first time ever, Chloe got to experience saying hi to classmates when we went for family walks around our neighborhood.  A privilege?  Or a right?  Whichever . . . Chloe surely enjoyed both this year for the first time in her life, and she’s been in school for 6 years.

This year I appreciated a couple of staff members really working hard to make Chloe successful.  This year I appreciated when a staff member who didn’t understand why inclusion was so important for Chloe went home and researched inclusion and returned to school with more understanding for our situation.  There have been some encouraging, shining stars this year.  But none of these stars were inclusion specialists.  None of these shining stars were experts in doing what we were trying to do.  And, unfortunately, it was the specialists and the experts who were missing from the picture this year.

I believe with all of me that the most appropriate education for Chloe would take place on her home campus, where she can attend school with her brothers and her neighbors just like every other child in this country.  But because of her disabilities, for some reason she has to prove herself in order to attend school at her home campus.  Somehow her disability takes away the right to attend school with her siblings.  It is a deep and hurtful policy that this district believes in.  Yet, while I strongly believe that attending her home campus is Chloe’s legal right according to IDEA and that it is most appropriate for her to be serviced right here on her home campus, I am not willing to sacrifice another academic year to make it happen.

So it seems that our choices are to either make a real commitment to some real training that will lead to Chloe’s success here or to make the decision to move her to a place that better knows how to service her.  Commit to some meaningful, professional, and powerful training to take place before the beginning of next school year or to bus Chloe to a different campus.

And then there was silence . . . . and then there was an abrupt statement from the principal to continue on with the ARD / IEP Meeting.

I think it is obvious that Chloe should be allowed to attend school with her neighbors and with her siblings.  Able-bodied kids have that right.  Doesn’t Chloe have that right, too?

I don’t pretend to think that placing a child with disabilities is a simple thing.  It takes work.  It takes commitment.  It takes training.  It takes effort to do it right.  Chloe’s placement last year was unfair to many involved.  It was a frustrating placement for staff members.  But with the right training, it can be successful.  With the right training Chloe can succeed while sitting right there next her new neighborhood best friend . . . just like every other child in our neighborhood.

And bigger than all of that, inclusion is what supports our lifetime goals for Chloe.  We have goals and visions of her as an adult living alongside the rest of us, making a contribution to society just like the rest of us.  Our decisions today either take us closer to those goals or further from them.  As parents, we don’t have any choice but to push for our daughter to be included.

As I already said, we are still in disagreement and will meet back the first week of August.  Thanks for your thoughts and prayers for us regarding this meeting and this decision.

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8 responses to this post.

  1. Posted by Angel on July 15, 2011 at 12:49 PM

    Well said, I feel like reading your blog is training for me and I greatly appreciate it. Thanks for allowing us who read it to learn from you. Blessings as you face the August meeting. Keep us informed so we can pray for you.

    Reply

    • Thanks, Angel! And you’re right — I think we all learn so much from each other’s experiences, and it’s the blogosphere that helps accomplish that. Thanks so much for your support! 🙂

      Reply

  2. BRAVO!!!!

    Reply

    • Thanks for being my pal and learning and “teaching” and encouraging and speaking up with me, Jennifer! I appreciate you, friend! 🙂

      Reply

  3. Posted by Audrey on July 18, 2011 at 8:09 PM

    “I think it is obvious that Chloe should be allowed to attend school with her neighbors and with her siblings. Able-bodied kids have that right. Doesn’t Chloe have that right, too?”

    I agree wholeheartedly with the Least Dangerous Assumption and believe that Chloe (and other kids) absolutely has that right, too. I am sorry that you (and the other kids’ parents) have to fight so hard for that right.

    Good luck in your continued advocacy for Chloe and Zippy and thank you for all you do to educate others on the value and power of ‘correctly implemented inclusion’.

    Reply

    • Very well said, Audrey! Thanks so much for your words of encouragement and for your support! An encouraging voice is such a welcome sound! 🙂

      Reply

  4. Posted by Margaret on August 17, 2011 at 10:56 AM

    Thanks for your article, I found it by chance googing “inclusion”. I’m also a special needs parent of a bipolar child and have just went through this same battle. Nobody understood how important it was for me to have my 1st grade son stay at his home school with his brother, friends and neighbors. I gave up the fight and placed him in a self contained class at another school down the road. Yes, I do believe that the people working with him now are better trained and equipped to work with him but I also consider what he had to give up to make that happen. He really can’t make friends where he is now because he has almost no contact with general ed students, even if he did he doesn’t live in their neighborhood and parents aren’t allowed much contact with the self contained class he’s in now. Is that an appropriate education for a child with social difficulties?

    Thank you for writing this about your Chloe. I could totally relate to your struggle!

    Reply

    • Wow, Margaret. Thanks for commenting. It helps to know we are not alone in our advocacy, doesn’t it? Not that it makes it that much easier or anything, but it does help. I’m so sorry your son cannot attend school with his brother and friends. Shame on a system that discriminates based on a disability. You are a strong and smart mama, and I encourage you to keep up the fight. Amazing that because of a psych diagnosis, your son is isolated from any gen ed students. What a disservice! Oh, I could go on and on . . .. as I’m sure you could, too. Thanks for stopping by, Margaret. Hope to hear from you again!

      Reply

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