Two ways to live

When still we were learning the ropes of Down syndrome we joined a support group–Up with Downs.  Mostly we benefited from seeing with our own eyes children with Down syndrome who could walk and talk and read and write.  Mostly we were encouraged by first-hand accounts of the unspeakable joy that comes hand in hand with parenting a child with Down syndrome.  Mostly we learned that children with Down syndrome were more alike other children than they were different.  But there were the hard facts to deal with, too.  We heard horror stories from parents who for years had been involved in legal battles with schools–parents forced to fight for the rights of their children.  There was a speaker one time who strongly recommended that we retain a lawyer to attend our yearly IEP (Individualized Education Program) meeting with us.  Her talk that night was peppered with phrases like: scare tactics, coercion and forced compliance.  We left feeling as though the wool had been ripped from our eyes–as though going in to an IEP was no less dangerous than parachuting into a war zone.

That was in Georgia, where Cassidy was born.  And since the military moved us away from there long before she reached school-age, I can’t speak to the state of affairs there.  What I can offer is a far different account of how things go ’round these parts.

Our local school district is top-ranked in the state of Arizona.  When first we moved here, we chose this location because of the school district’s reputation and for its special education policy.  That is, we chose this school district because they stand firm in the belief that children of all abilities should be included in a typical classroom.  They stand for inclusion when lesser school districts stand for exclusion.

Yesterday, Jeff and I went to the school for Cassidy’s IEP.  We went not armed with a lawyer or a tape recorder–not even armed with a pad of paper.  We sat down with the inclusion specialist and with a handful of Cassidy’s teachers and with the paraprofessional who is paid to work one-on-one with Cassidy, adapting lessons, managing behaviors and coming up with countless creative ways to ensure Cassidy reaches her full seventh-grade potential.

This year’s meeting was no different than that of any other.  For ninety minutes we all put our heads together and brainstormed goals for the upcoming year.  There weren’t–there never have been–two sides, no line drawn down the middle of the table.  No them versus us.  There is but one team: Team Cass.  There is but one goal: to maximize the potential of a young girl who happens to have a third twenty-first chromosome.  And while the procedures have changed little from year to year, there was a first during yesterday’s meeting.  Yesterday’s IEP marked the first time I cried at the table.

Cassidy’s Language Arts teacher was to blame.  Earlier in the meeting, she talked about Cassidy’s progress in her class.  How Cassidy was assigned a passage to read aloud in class from Out of the Wild and how she’d so impressively done so, reading words one might not expect her to be able read.   As the meeting wrapped up, the teacher said that she wanted to share something before we left.  “I recently became the grandmother of a little boy with Down syndrome,” she tentatively began.  “He’s two,” she went on, her eyes revealing far-off thoughts of a little one so cherished.  “All I know is that if he goes on to be anything like your Cassidy, I will be so. happy.”

Any string of words I might line up on this page would miserably fail to convey the lightness in my heart that comes when I gather with a group of people so deeply-vested in my daughter’s well-being.  I will say only that I would never have asked for a child with special needs.  But by giving me one, God sprinkled my path with the most dedicated allies, each disguised as a perfect stranger.

two ways to live

11 Replies to “Two ways to live”

  1. Ok, now I’m weeping. I always go into the IEP meetings emotional and always end up relieved. It’s such a vulnerable position to be in, and I feel so exposed yet ready to fight if I have to but thankful they’re on my side. I’m thankful we’ve also always had only the best kinds of meetings and teams. I love that she shared that with you. You should feel, so, exactly this way. Your last line- perfect.

    Steph

  2. Very well said my dear. From day 1 we knew she was sent to all of us to enjoy and experience the growth we have seen in her.

  3. I am so glad that you have this for Cassidy. What a blessing.

    As you know, my girls also attend inclusive schools for the same reasons. Its sad that that this isn’t the norm everywhere – every student benefits.

  4. Such joy and pride you must feel. As a para-educator for autism classes, I think it’s wonderful that the paras are included in the IEP, since they are the ones that work so closely with your child. That isn’t done in my district and I strongly feel that they should be a part of the IEP team.

  5. I sure am proud to be a member of Team Cass…I see her beautiful face on my desk EVERY day and I miss her terribly!

  6. You made me cry too. That is so awesome and a big reason for you all to stay put! Apparently IEP meetings in our part of the world can be pretty rough too. You are so fortunate, and you are doing such a great job!

  7. This gave me chills.

    What a gift to have such supportive, hopeful, and hard-working teachers in her life.

    Of course, Cassidy’s progress and success is a tribute to you and Jeff – the way you love her so fiercely and so well.

  8. I love this so much. How special for her teacher to share that. What a beautiful gift Cass is for all of us.
    I love IEP meetings. I’ve attended more than I can count. I can count on one hand the number that have been negative. The rest have been positive. I love them. I love the opportunity to sing the praises, to talk about growth, to surprise the parents with the things their child can do, the things they didn’t even know.
    I love this line: “Any string of words I might line up on this page would miserably fail to convey the lightness in my heart that comes when I gather with a group of people so deeply-vested in my daughter’s well-being.”
    It’s so very true. When I go to an IEP meeting, it’s because, in my case, I’m there to talk about growths and leaps and bounds and how we can get ready for high school. I’m there because I care. IEP meetings are awesome in that regard and while I’m sure there are some teachers out there who grumble, when the teacher of record on our team asks for someone to go to one, I’m always more than happy to volunteer. You learn so much.

    1. I’ve always been so touched by how vested you are in your students, Erin. I’ve never met a teacher who wasn’t sacrificing something (more money, namely) to do something that really matters. Especially those who work with special needs kids and do so solely because they want to. They see potential and worth where so many others cast aside.

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