Light at the end of this tunnel…

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!  

 

6 thoughts on “Light at the end of this tunnel…

  1. Perfect song choice for all that you are feeling and going through! “Keep holding on.”

    It’s all good, mama. Take a deep breath and take it all in and be happy. xox

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  2. My son’s IEP followed him from 1st grade – high school. He had a learning disability for reading first because he had a photographic memory and while everyone thought he was reading he was just reciting perfectly each page. As he was taught to read through some very complicated techniques he lost a bit of the photographic memory but the multiplication tables were a snap. Throughout the years he has learned to set goals and study skills thanks to his IEP/LD status. The last few years he was kept in the program due to his penmanship but truly his IEP goals are higher than those than regular students because he has excelled. Honor roll or high honor roll all 4 years in high school. He is definitely a success story for IEP’S.

    Fight to keep Meg in the program, there are ways to keep this option open all through school and she will be a better student because of it and thankfully at least here the stigma of being an LD student is virtually gone. We are a small 4k-12 school and the kids have been together and friends for several years, they just accepted him for who he is, which is a great kid. Just push that she needs extra time or a quiet place to take tests, etc.

    If Meg out grows her epilepsy that would be fantastic, wonderful, stupendous, but even if she does that doesn’t mean she won’t benefit from the extra help/time/techniques she gets due to an IEP.

    It would be great if we lived in a country where all students get individualized attention but with the cuts coming in Education it is even more important to keep her in this program until you and Meg feels ready to leave it. Please let me know if I can help in anyway. I have dealt with this for 12 years and know it works, my son will graduate in June near the top of his class, will be going on to college, has excelled in sports and has a bright future all because his disability was diagnosed properly and the input his teachers, the school psychologist, we as his parents and him have put into his IEP over the years.

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  3. Wow, I had no idea. My prayers are with you, and your whole family. I hope talking (writing) about it is some sort of release for you. We’re all here to listen/read for ya! Hugs, and I hope that silver lining on your cloud comes soon & gets bigger & bigger each and every day!

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