it’s always worth it.

The past two days I have been consumed with IEP planning meetings. For those unfamiliar with the term “IEP” – basically it means special educational services your child needs to receive from their school. In case you’re wondering, no the school does not offer these services willingly. IEP’s usually involve a lot of heartache on both sides of the table – the school’s and the parents’ – because it’s hard to say the things they have to say and it’s hard to hear the things that have to be heard.

They aren’t always all bad. Some of my friends have had horrible experiences, and some have sailed through their meetings with nothing but smiles. For me, my IEP’s for Kendall have always been more on the good/easy side than the heartache side. I see her struggles every day, and am able to rejoice in every single milestone she hits, knowing how amazing they each are. Hearing that she is 1-2 years delayed in multiple areas rolls off my back. Her team is mostly scared of her medical issues so things aren’t a “fight” per se in her IEP. She needs to be bussed in her wheelchair? sure thing. She needs a 1-1 nurse every day? You betcha. Anything else we can do to make her educational transition smooth? For the most part, things have just rolled along for kendall’s IEP. Sure there is a part of me that has to emotionally recover after every one, but for the most part, they are just a part of life with Kendall. Her IEP team has been in place for almost 3 years now, and I feel like they truly understand where my true GOALS for Kendall lie – and that isn’t about whether she can button three buttons or jump forward 9 inches – it is about having her experience life as normal as possible, It’s about doing whatever we can to ensure that she has as “regular” of a childhood school experience, on as many days as possible.

While Kendall has had an IEP her entire “school” experience (once she transitioned out of Early Intervention and into the school district at age 3), Karissa is my other child with educational challenges. Hers has been a very different path. Karissa was also in Early Intervention, and transitioned into the school district at age 3, related to speech delays. She has struggled from Kindergarten with what I have always perceived to be “learning disabilities”, but I have been told repeatedly that her issues would “resolve themselves” by the end of whatever grade level she was in. I have talked about her issues and struggles before on the blog, and if you know me in real life you’ve heard me ranting about it plenty!

Karissa has had a “504” plan in place for a couple years now – basically it is some smaller accommodations the school is willing to make so that she can have her educational needs met in spite of what may be medically related issues. For Karissa at the time we put this into place, it meant that she needed to have access to an extra snack, her water bottle and extra potty breaks. We thought she wasnt able to learn because she was too busy fighting what were at the time nearly back-to-back UTI’s. It was a good thought. She unfortunately has outgrown those type of accommodations and has shown a marked decrease in her academic skills this past school year.

Around Thanksgiving we started the process to add some interventions to Karissa’s school day to try to improve her functioning with regard especially to reading and writing, areas she is definitely struggling in. Today we finally had a meeting to discuss the team’s findings as they have been doing some in-depth testing as well as to discuss Karissa’s “Response to Interventions”.

I was nervous about today’s meeting. I know that Karissa CAN look like she’s compensating. And she Is able to coast pretty well. She has perfected the duck swim as I call it – she looks calm on the surface but underneath the water she is paddling furiously trying to stay afloat. It breaks my heart when I see how hard she works on her school stuff, when I can see that she isn’t “getting” the info and I have no idea how to open up the world of words to her. It frustrates me that I know her teachers can see the disconnect but they feel like their hands are tied as well. As much as I don’t WANT Karissa to need special education, in my heart I knew that realistically, it would be the best thing for her. But then I wasn’t sure that the school would be WILLING to admit that she had a problem worthy of receiving help!

It was a meeting i was not looking forward to.

And I’m still not sure how I feel about it, after the fact.

At the end of the day, the team decided that Karissa qualified for an IEP, receiving special education services for a portion of her day, but remaining in general education (her regular classroom) for most of the day. Her SpEd services will include a lot of accommodations aimed at making it easier for Karissa to function throughout her day by not having to rely so much on her OWN reading skills – she will have someone to help read things to her, go over them in more depth, and make sure that she is truly grasping the concept before testing her on it. It’s all good stuff. It is stuff that I would not have even been able to verbalize if they had asked me for a list. I am actually excited in a weird way to see how much more this will help her. Her testing even shows that she has the capacity for being a near genius – she is truly brilliant. But her brilliance is trapped behind a barrage of letters that don’t make sense to her.
It was hard to see the testing results. It was hard to bite my tongue through so many parts of that meeting. It was hard to not hulk smash the conference table when one of the team members admitted that “if we used a term like dyslexia, karissa’s results would be consistent with that diagnosis” (I have been saying she seems dyslexic since she was in preschool. PRESCHOOL, people.) But apparently we don’t believe in dyslexia anymore. So Karissa’s issues are left to float around on their own in “reading disorder, not specified”.

It was VERY hard to stay seated when the question was asked “is it worthwhile to pursue help for a child like Karissa”? (and really, the context under which the question was asked made it not sound as harsh as it may sound to read it out of context like this.)

But what my mommy heart HEARD at that moment, was “Is karissa worth our time and effort?”

And it was all i could do to keep from standing up and screaming – of course she’s worth it! My babies are worth every second of your time!

Luckily – that was the conclusion they also came to.

So here we go. On Monday, Karissa will start receiving specialized individualized education to address her major learning deficits. My hope is that this journey helps her learn to unlock and use all that amazingness in her brain. I hope this helps her get her love of school and all things bright and fluffy back. Right now, she’s just exhausted when it comes to school things.

This will not be an easy journey I am sure. It already is not easy. My emotions are all over the board tonight as I try to process through the meetings for both Kendall, where we discussed that her “school career” may not be that of a “healthy” child – that she in fact may not make it to high school – and for Karissa’s, where I heard the information that I have known all along said out loud. Managing the school system for now two children with IEP’s will not be easy.

But this much I know –

It will ALWAYS be worth it. Every meeting, every step, every milestone fought for and met – always worth it.

Worth the tears and the triumphs, worth the rescheduling and waiting, worth it all.

Always.

 

terra.