THANKFUL THURSDAY – Dedicated to My CPSE Committee

Yep, today was one of those days. As I said previously, the parent of a child with special needs makes all educational decisions by committee. You convene the committee if you want to change anything, add anything, question anything, remove anything… anything anything. This is no easy process — but I’m sure you gathered that from my last post. More than anything, it’s VERY stressful for the parents. Will I get what I believe my child needs (never mind what I WANT)? Will it work? Will it be enough? And the list of questions and doubts run through your mind at breakneck speeds. As soon as you resolve one issue, another quickly takes its place. Still, in the midst of the difficulty, there are moments where someone or, if you’re really lucky nearly everyone, stands up for you and the planets align and the decisions seem just right and you walk away relieved. Today, was one of those days. Maybe because I was hyper-prepared with research to back my every desire. Maybe because it was just the right thing. Or maybe because the Sarge was there to chime in and innocently ask that question that makes everyone secretly fear a discrimination lawsuit. LOL. WHATEVER!!!!! We got what we went in for… and sort of more. So here’s to that wonderful committee who, in my mind, did the right thing for Brian and Michael today!

[1] A bit fat thanks go to the Nassau County Rep who shall remain nameless lest he becomes inundated with so many requests for out-of-the-box solutions that he won’t be able or willing to do so in the future. He TOTALLY looked at the boys’ challenges, listened to the concerns of the school and ours and then tweaked the suggestions I had put together to come up with a solution that fit for everyone. He was awesome! I’d have hugged him — instead of just shaking his hand — if that wasn’t totally inappropriate. Thanks H!

[2] A “Right ON!” and big thanks to the District school teacher, Ms. Toni Marchetta, who pointed out that individualized teaching according to each child’s needs is what she does every day — help kids at their level — and what every teacher should be doing for every child. It was exactly the right comment at the right moment to set the mood and expectations for ALL of the committee members. I’m looking forward to the boys’ attending kindergarten in her school and hopefully, in her class… Her attitude is absolutely right on target! She gets a second shout out for mentioning that she deals with behavioral issues in her “typical” kindergarten class too. Great reality check… THEY ARE 4-YEAR-OLDS!

[3] I’m ever so grateful for my school districts’ and committee chair person’s accommodating nature. I’m not saying she’s a pushover and gave us everything we asked for… What I’m saying is that she immediately recognized that we were in a unique situation where some needs were being met in one environment while others needed more intensive and creative attention. Then, she listened to what other committee members were saying without feeling the need to exert her authority. That’s not an easy thing to do as the leader of the committee.

[4] And, thanks to the Sarge who interjected just the right comments and questions at just the right moments. I’m telling you, he turned a few heads today! You could train a husband all your married life and never achieve that. I’m glad that mine arrived at the same station, at the same time I did! He was the yin to my yang today and I love him for it!

[5] Finally, I am thankful for the boys’ teacher, who brought her concerns to me regarding the growing gap in the boys’ academic achievement and their typically developing classmates. I’m glad she felt comfortable and recognized that she could talk to me and for getting that ball rolling! Though I’m not sure the solution was what she or her colleagues had in mind, I hope that it is one that works well for the boys and for her. I’m grateful for her immediate post-meeting willingness to jump right in and embrace the solution and address the identified challenges at hand. Upon pick-up today, she was already making plans to team with our home service providers to ensure success; putting in place some of the recommendations of the committee to encourage language and facilitate demonstration of their existing academic skills (given the expressive language delays… that’s not easy to establish). Her job is not an easy one but I hope that the boys’ progress — as a result of these changes and her effort — makes it a rewarding one this year!

Finally and most importantly, I want to thank all of the people who helped me put together a workable recommendation that was totally specific to my boys — their needs, strengths, weaknesses and personalities — and solidly backed by fact-based evidence, for the committee to tweak. My undying gratitude and respect to Kathleen, Valerie, Jessica, Cindy, Jo, Steve, Trish, Lori L, Annmarie, my Multiples w/ Down Syndrome online family, and every other professional and lay person who offered their experience, expertise, opinion and advice… and for all of you who listened even when you were sick and tired of being my sounding stone on this topic. Thanks. We — the Sarge and I and the whole committee — could not have done it without each and every one of you.

I still have a lot of footwork to do to get the solution implemented. And, the solution puts a lot of onus on me and will significantly change our after school routine and home life. It also opens doors and endless exciting opportunities for the boys to progress. Change is not always easy… but, I have found, it is usually good in the end. I’m certain, the changes that will be implemented on behalf of my boys will have a positive outcome for them and hopefully for others with Down syndrome who face similar challenges in the future.


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 CPSE, Down Syndrome Advocacy, educating children with Down Syndrome, thankfulness. Bookmark the permalink.

3 Responses to THANKFUL THURSDAY – Dedicated to My CPSE Committee

  1. Anonymous says:

    Maggie, I have been thinking about you all day! I was hoping you might have the energy to post tonight and let us know how it turned out. I am so glad that the committee focused on what the boys needed and you got what you asked for. And a shout out to the Sarg for his timely comments!Cathy

  2. Stacy says:

    I'm glad you had such a successful day. I'm interested in what you were "fighting for" and what you got. Are you getting the school district ready for Brian and Michael to start kindergarten or was this a preschool issue? Either way I'm glad your voice was heard and is being acted upon 🙂

  3. datri says:

    What a relief to have had a successful meeting! It's always great when the committee works together in the best interest of the child/children!Did you have a Parent Member present? Just wondering because our school district has been out of compliance for years because they did not have a Parent Member until I volunteered. (just a note to anyone who is reading this, a Parent Member is a required New York State thing where another parent of a child with an IEP sits on the CPSE/CSE)

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