We had a visit with Meg’s neurologist this past Friday to discuss how her epilepsy and the medication she takes can impact her learning. We asked him to fill out a form explaining all of this information so Meg doesn’t lose her IEP (Individualized Education Plan), which allows her certain accommodations and gives her the extra boost she needs to succeed in school.
Originally Meg’s IEP was tied to speech and because her speech and language abilities are getting stronger she may now test out of speech, which is fantastic, but if the IEP is dropped all the other accommodations go with it! I’m not convinced her language abilities are where they should be and will continue to push the system as much as I can. There’s ample academic and medical information showing Meg needs her IEP, but the system is faulty and because of this she stands to lose it.
Now you might say… If they dropped her IEP certainly she would she still get help? Of course she would, but it wouldn’t be federally mandated! It’s much easier to get the system to accommodate your childs learning needs if it’s mandated! I have to say, so far we’ve been lucky, Meg’s school has been very cooperative and she has a very supportive IEP team that understand how important this is for her. Meg has a fabulous neurologist too and after talking with us a while and doing a few tests with Meghan we had the form filled out.
I knew while we were at Meg’s appt. her doctor would want to talk about medication reduction, but I had no way of knowing the mixed emotions I would have once we left the office. You see, for so long in the beginning we were told there are no guarantees she’d outgrow her epilepsy, the chances were slim and I had assigned to the fact that this would be a part of our lives forever. To be honest I only remember bits and pieces of the conversation because once her neurologist said there’s a possibility she may not need medication, but the only way to know was to start the weaning process. My brain began to flood with questions… What does this mean? Could she have outgrown her seizures? Oh god weaning! But could she have…? All I know is I wanted to cry, but not because I was sad, because I was happy. It was hope! Could Meg have a seizure free life? Was there light at the end of this long tunnel?
In the past weaning has been a scary road, Meg’s gone into status and been airlifted to All Children’s Hospital twice, but it hasn’t happened in a long time. Right now we are in unchartered waters! We’ve already completely weaned Meg off the medicine she was taking back then, transitioned her to another medication and she hasn’t had a seizure in almost three years! Part of me wants to get excited and elated at the prospect of no seizures, while another part of me says stay calm, hold it, don’t jump the gun. So, for now, we take this weaning process one day at a time, I hold on to hope and I continue to advocate for her! Love you Meg!