Tis the Season… The Season of CSE Stress!

It’s supposed to be all about THE KIDS… Isn’t it?

Two months ago it started; I asked for a team meeting. I needed information as I was considering a summer camp program for The Boys. I requested input regarding what their summer recommendation might look like. I asked what “the team” – you know, the one that I’m supposed to be a critical member of as the mother of the child (or two, in my case) with special needs – was thinking about with regards to how my school district intended to educate My Boys going forward. I was told no one could provide a recommendation as that was the committee’s responsibility to put forth. So I asked some of the individuals who were part of the team what they were thinking, not an official recommendation.

Nothing!

Other mothers began getting their letters, announcing the dates of their children’s annual review meetings with the Committee on Special Education (CSE); Often, but not always, the meetings were scheduled in relation to their child’s birthday. First born, first served… or so some of us surmised by the timing. But The Boys’ birthdays came and went and I didn’t hear from anyone. When I inquired, I was told, “we’ll set something up after the break.” But it never happened. “Yours is tough to schedule because it’s two children – two meetings – back-to-back.” As if scheduling two related children on the same day was somehow quintessentially harder than scheduling two random children. (In my mind, you’d pencil us in first as opposed to squeezing us in last… NO?) I told them what I was thinking, what I wanted for My Beautiful Little Men, how I saw My Babies being educated, growing academically, going forward. This year is a critical one, a transition year. We enter a new school; we’re writing a new chapter… FIRST GRADE! I asked again and again, in writing and in person.

Nothing!

I requested reports via the communication book. I asked for goals face-to-face. The Physical Therapist shared hers openly and promptly. Someone made the comment, “you know, we’re busy around here.” (As if any parent of a child with special needs is ever NOT just as busy as the next guy, especially at the end of the school year!) The Special Ed teacher who is in charge of their Applied Behavior Analysis (ABA) Discreet Trial Training (DTT) said, “I’ll give my reports to you tomorrow.” But tomorrow never came. I heard nothing from the Occupational Therapist, and their aide is not allowed to talk to us as she falls under the direction of the Special Ed teacher. So, the person who spends the most and closest face-to-face time with My Boys is not allowed to discuss them — their progress or behavior — lest she tip us off to something, anything. I don’t know what! Finally, unofficial word about when our annual CSE review meetings might be slipped through the battened-down hatches giving me an unofficial heads up.

When I bumped into the school Psychologist one morning at drop-off, I bemoaned my feeling of isolation. The inevitable, separatist, them-against-me, “ssshhh, don’t tell Mrs. H.” conspiracy thoughts that haunted me as a result of the lack of information sharing and made me believe no one agreed with that I proposed might work for MY Boys. She promised to address it with “the team.” To let “them” know that I wanted to meet unofficially before our official meeting. The only result of that conversation was the Speech Therapist promised and ultimately delivered her reports… just two days before the meeting. Going in, I had only one set of goals and one report when I should have had four sets of goals and four reports to review for speech, OT, PT, and special Ed.

After expressing my utter frustration and insistence, clearly verbalized in a note to the whole team scribbled hastily one morning in The Boys’ communication book, the general ed teacher and speech therapist – who thankfully and successfully worked very closely with each other all year on behalf of The Boys – called me to discuss the summertime opportunities I was considering. Though they did not tip their hand regarding the team’s Extended School Year (ESY) recommendation, per se, they did say that NOTHING the school could offer would be more beneficial than two weeks at the camp I was considering – an integrated program offered by LIU at CW Post College/Center for Community Inclusion designed specifically for children with special needs and run by Dr. Kathleen Feeley and her hand-picked team, a recognized expert in educating children with Down syndrome. Armed with that information, I wrote the check and signed The Boys up for camp. Note: according to the letter of the law, Free and Appropriate Public Education does NOT necessarily mean the BEST education… sometimes those opportunities you have to pay for… and so I did! Because nothing I can give my children has the lasting power and positive impact that a good education does! That’s why this whole thing is SOOOO important to me!

Every year, I wish I didn’t have to feel like these annual CSE meetings are us-against-them tribunals where educating my children by committee means anywhere from five-to-ten other people have a greater say in the process than I do. I know I’m not alone in this awful, confrontational feeling that I must prepare for the fight assuming the worst case scenario and hoping against hope that the best recommendation may actually result. I talk to a LOT of parents experiencing the same lack of communication and strife. As end-of-year parents of children with special needs, we prepare our arguments in advance or walk in blindly, listen to “the committee’s” recommendation, and if we don’t agree, opt to “table the decision” and adjourn the meeting for resolution at a later date – recognizing that the law allows the committee to make a majority decision without you – then study-up and fight the fight after the fact. The problem with this approach is that preparing your counter attack afterwards often leaves you little time before the school year comes to a close and teacher’s and administrator’s year-end availability is competing with lots of decisions, activities, paperwork, and summer-fever.

In the end, armed with very little information despite my best effort to gather it, and even less time to address the recommendation if it goes against what I hope the placement is for My Boys, this year, I chose to walk blindly into my late-in-the-year annual review meeting without preparing for the fight. Something I normally would not risk but, honestly, I’m just downright tired of fighting (not a good sign as we’re only in K2!). I want to believe that my year-long efforts and openly shared opinions and impressions regarding My Boys’ academic and social/emotional achievements and needs are valuable to and taken into consideration by their educators and the committee members. I want to think that what I say and what I know about My Boys matters.

Miraculously, the “them” of the us-versus-them paradigm were on the same page as the “us” made up of my husband and me. After hearing team members paraphrase their reports that were distributed at the meeting and that, sadly, I had no time to read because that was the first time I’d had the opportunity to see them, the committee chair said, “We’ve heard The Boys’ needs; now let’s talk for a moment about the wants.” She laid out the generic options: the contained class offered in our district but outside of our home school; the integrated, collaborative co-teaching class being offered at our local elementary school; and general education with support… quickly positing that, given the boys’ needs as outlined in the aural reports, perhaps the latter might not be the best solution compared to the other options. Then, she turned to the Sarge and me and said, “What would you like to see happen for next year?” (In hindsight, it’s apparent that she’d been tipped off as to how we wanted Our Boys to be educated going forward, especially given I had concisely communicated my first and second choices in writing to the team in an unreciprocated attempt at “I’ll tip my hand if you’ll tip yours” game. So, I told her outright and specifically what we hoped would be the committee’s recommendation.

Our request: the collaborative team approach where a general education teacher and special education teacher work together in the same classroom co-teaching an integrated class of predominantly typically-developing children side-by-side with up to five children with special needs. The caveat, for me to accept a “collab-class” placement, was that it had to be in my home school down the block. (I will not have my children bussed out of our neighborhood like they tried to do in the 60’s with minority students!) I said we feel strongly about keeping them together, and with two special-education 1:1 aides, a point we were hopeful but negotiable on – who could modify and individualize their curriculum on the fly, as well as at least an hour pull-out daily for ABA-DTT for academic trials. Finally, we wanted the other related services to stay at their current levels (5×30 speech, 2×30 OT, and 1×30 PT weekly).

“WE CAN DO THAT!”

I caught the tell-tale twitch of Sarge’s eyebrow that betrayed his amazement! And I noticed Mrs. Lines, The Boys’ gen ed teacher, smiling with excitement… to the point of all but clapping her hands. In the collaborative, co-teaching model in our school district, a special education teacher spends half her day in the general education classroom. During the other half, My Boys (and the other three children in the class who have special needs) would be supported by a teacher’s aide, certified to teach in special education. Though their 2:1 aide would not specifically be trained in special education, she would specifically be experienced as a special education aide in this setting! This scenario represents improved support compared to kindergarten where the special ed teacher is actually present for half the day, the teacher’s classroom aide is assigned to assist the five children with special needs versus the whole class and is certified in special education. In this highly supportive but still inclusive setting, a 2:1 aide would be provided. That was our only concession and was a negotiable point for us (having had a 2:1 aide in K1 and K2). Heck, the Chairperson – with after-the-fact consensus from committee members – even threw in a mandatory monthly consult between the speech therapist (ST) and the gen ed and special ed teachers to ensure on-going collaboration given this year’s ST and gen ed teacher worked so closely, and collaborated so well together to ensure My Boys met with success… and so they did!

With minor tweaks pertaining to the number of individual versus group related-service sessions and how reading and DTT would fit into their schedule – the program set forth had EVERYTHING the Sarge and I wanted for The Boys. There was no settling, no disagreement, no disappointment. And, looking around the room, the team appeared just as satisfied with the outcome as we were. In fact, their K2 gen ed teacher was clearly ECSTATIC with the decision… to the point of clapping and laughing to hide the tears of satisfaction she felt at the outcome!

My ONLY complaint, if we were all on the same page – and they would all know that because I’d written out EXACTLY what I wanted and, obviously, they knew what they were thinking — then why couldn’t someone give me a little heads-up so that I didn’t have to fret for two months over the possibility of disagreement? All anyone had to say was, “I think this will all work out to your liking, Mrs. H!” and I’d have breathed easier, slept more peacefully, worried less and spent more time playing with my kids instead of researching inclusion models being successfully implemented in Long Island schools and how to argue for them at your CSE meeting over these last two months. WHY does it have to be so secretive? Why aren’t the reports and goals shared openly and discussed freely with ALL members of the committee… IN ADVANCE? Why does it have to be so them-educators-versus-us parents? Even if the recommendations were potentially contrary, it would be easy enough to say to a parent, “be prepared to support your choices to help the committee understand where you’re coming from.”

Is that really so hard? Am I asking too much? Are we breaking the rules by engaging in a little open, two-way communication to foster agreement? Couldn’t we make much easier work of what most of us consider a pretty stressful situation through a little pre-preparation and teamwork? As parents of children with special needs who find ourselves in the necessary position of advocating on their behalf, we’re told to negotiate and come to agreement BEFORE we walk into that CSE meeting. HOW is that possible without open, honest communication? … and TRUST?

End Note: Mrs. Cindy Lines, The Boys’ K2 general education teacher this year, is truly an Angel Amongst Us. I’ll be dedicating an upcoming post to Mrs. Lines and how she embraced My Boys and her role as their teacher for a successful inclusion experience. She was nothing short of PHENOMENAL!

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About Maggie

I'm a stay-at-home mother of 3 children including a 15-year-old daughter, the Old Soul, and 11-year-old identical twin boys who've been blessed with an extra 21st chromosome (aka: Down Syndrome). I happily spend my time doing all that I can do -- breaking the proverbial box wide open -- to foster my children's development and then sharing what I learn with you through this blog.
This entry was posted in Advocacy, committee for special education, CSE, educating children with Down Syndrome, Education, inclusion, parenting. Bookmark the permalink.

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