Sunday, December 13, 2009

Down Syndrome Awareness --CPSE: It Works If You Work It

I'm in the throes of preparing for the boys' transition from CPSE (preschool) to CSE (Kindergarten). Though the process of collecting information started at their birth, 4 1/2 years ago, the boys are getting closer and closer to the reality of kindergarten each day. As such, I've talked at length with every known-to-me expert in the field of educating children with special needs including other parents of children with special needs -- especially Down syndrome but also those whose children have autism (I explain that later). I've met and spoken with CPSE Chairpeople from my and other school districts, to past and present SEPTA Presidents and special educators, to the boys' Early Intervention and current therapists, social workers, teachers, special education administrators, school psychologists and even to a few self-proclaimed know-it-alls and been-there-done-thats... I've pretty much talked to anyone who might have any tidbit of information or a unique perspective that can teach me more about how best to educate my boys...who happened to have been blessed with an extra 21st chromosome (aka Down syndrome).

What I've discovered is a lot of disparate information and unique approaches with one over-riding theme. Each child is different. Each child's educational, developmental and social/emotional needs are different. Each child has a different learning style, pace and temperament. And the public schools are mostly a one-size-fits all approach to educating typically developing children with a small group of people dedicated, in theory, to addressing the special needs of atypically developing children like mine. I also found that my school system mostly wants to do the right thing with regards to helping my children learn and develop... but that they don't necessarily know what that is.... THAT's my job to determine with the help of all those folks I mentioned above.

I've also found that gearing up for the fight that every parent of a child with special needs goes through in the days and weeks leading up to each CPSE meeting, is necessary preparation as --I've just begun to understand -- services are provided to the children of parents who are well-prepared, understand the components of their children's developmental and educational needs and can suggest proven methodologies and services to address those needs. So if I can prove it's effectiveness -- not just for children with Down syndrome but for MY children with Down syndrome -- then I can have it... within reason... mostly.

So here's what I discovered thinking specifically about my boys and how they're doing with their multi-faceted development:

My boys have shown significant growth socially, emotionally and in the life skills area when participating in the daily activities of their 15:1:2 integrated classroom with their typically developing peers. However, in academics and speech development & articulation, the teaching staff, speech therapist and I believe that my boys need one-on-one attention to grasp the academic skills and essential building blocks they need, not only to keep up but to succeed in life. One might then assume, as I thought last year, that the smaller "self-contained" classes made up entirely of children with special needs might offer a better format for academic achievement. However, further discussion ferretted out the truth. In groups as small as 3:1, their teacher felt that MY boys still underperformed, needing additional attention to grasp academic concepts. That means that a smaller, self-contained class with a higher teacher-to-student ratio -- which I do not advocate for the boys -- is NOT the best answer... for MY children.

To further increase my knowledge of academic achievement in children with Down syndrome, I attended a conference on Best Practices in Educating Children with Down Syndrome, and discovered that discreet trial training -- a component of ABA therapies typically prescribed for children with autism -- is proving to be an effective method for teaching and pre-teaching academic concepts to children with Down syndrome as well. Got it!

So, now that I've determined specifically how MY boys learn and I have research to support the implementation of appropriate methodologies to address their educational needs, all I have to do is present it all in a comprehensive way to my CPSE... right? Unfortunately, not!

It's pretty much also up to me to understand and suggest our desired solution for how, how much and when these services should be delivered. Will the boys participate in 1 hour of discreet trial academic therapy every afternoon after school, at home or in a center? Or, should these services be provided during school? Should it be 1 or 2 hours each day? Is there a therapist available to deliver said services in any of these locations? Some of these answers are in the existing research and some will require a little more footwork before I can determine what the best scenario is to address the boys' educational needs, determine the logistics of working it into their current schedule and then present it... all with fact-based evidence that it's the right methodology and the right amount of available services for MY boys, specifically.

THEN I've been advised to ask for more than we need and compromise down to the solution we've come up with and to make sure my husband takes the day off to attend the meeting and is prepared to speak eloquently about every aspect of the challenges, research and our desired solution. I've heard that CPSE committees take parental recommendations more seriously when the Dad is there and has a critical speaking part. Sounds as crazy as it is unfair but I've seen it work and I wouldn't take the chance on not getting the right services for such a ridiculous (and arguably illegal) reason. The Sarge is well-versed and has the day off to attend. We know what we want, what we're going to ask for, how we prefer it to be delivered and can provide fact-based evidence specific to our children that this is the right solution necessary for them to meet their academic needs.

And if they say no... we sit tight and quietly insist that this is our preferred solution. If the committee (usually the chair, if there's a hold-out) absolutely does not budge, then we'll be advised to get a lawyer. And the lawyer will tell us to get an expert. And the expert -- who we already know and has assisted us in putting together the solution in the first place -- must be called in to scientifically document the appropriateness of the solution. She does so and the committee approves our original suggestions with no further ado. LOL

It's a process. One that kinda, actually works once you learn how to work it (may it always be so). And, in truth, I recognize that we're incredibly lucky to have it. In the past, the options were limited and, for the most part, children like mine were confined to institutions for life with devastating outcomes. As stressful as this CPSE process is, I'm glad for the opportunities afforded my children today. And, I hope that their opportunities continue to grow as our body of knowledge on how best to educate our special children increases.


  1. DTT worked very well for Kayla in regards to teaching her to sit still and focus. However, she does have an autism diagnosis in addition to Down syndrome, so it was easy for her to get it. Most school districts won't do ABA or DTT unless there's an autism diagnosis, because that's where it's been proven effective. They are hesitant to provide this to kids with just Ds, even though I agree that it would well there as well. Technically the services are supposed to be tailored to the child, not the diagnosis (or lack of one), but some school districts are really stubborn on that. Good luck, I hope you are able to get it!

  2. This is great! Love, love the process! I will share with my students winter quarter!! Thanks!