Jayen was born on November 4, 2009 in Omaha, Nebraska. He was a very healthy, happy, normal developing baby until March 22, 2010. Dad was deployed and mom was at home with two little babies. A trip to the emergency room confirmed what I had suspected; seizures. One month later another devastating diagnosis was given to him. Jayen had Infantile Spasms, a catastrophic form of epilepsy. With the help of a steroid injection in his thigh for 9 weeks, Jayen was seizure free for 9 months. Through hard work and his own perseverance and with the help of intense therapy he has made many gains in his development. The seizures eventually returned and medications were added quicker than the pharmacy could order them. With each medication came new side effects as well. After countless concoctions we were able to squeeze 368 seizure free days before they returned with a vengeance. In February 2014 we were admitted to the Children’s Hospital in St. Paul, Minnesota to see if Jayen was a candidate for brain surgery. After three and a half weeks in the hospital the doctors were able to determine where his seizures originated and removed 4 parts of his brain. Thirty days in the hospital, two brain surgeries, 4 less brain parts and it took less than a week for the seizures to return.
On our follow up visit we met with a geneticist who determined Jayen had a genetic mutation called FoxG1. However, as Jayen has always been the exception to every rule, his mutation is slightly different than the handful of other reported cases. Jayen’s mutation is at the end of his gene rather than the beginning. He has far surpassed and exceeded expectations set out for most kids with this mutation. We can’t base his outcomes in life based on this diagnosis. I am confident he will exceed many expectations set before him and become an exception to their rules too!
Jayen is currently on 7 different medications to control his seizures. As of today he is over one year seizure free. We are excited to be on this path and pray that we can use this time to catch up on his development. We will soon be decreasing some of his medications. We hope this will also help his attention and ability to focus.
Jayen currently is receiving, OT, PT, Speech, and feeding services at a local therapy center and is making great progress. He has nightly stretches for PT, apraxia cards for Speech, practices his name for OT, and oral motor exercises for feeding. He is also receiving ABA therapy and Habilitation services. There isn’t a second in his day that he isn’t working towards a goal. Homework for Jayen needs to be minimal to allow for the therapies he is currently receiving.
Jayen participates in buddy sports through the city and is a HOPE Kid. He is very athletic and loves being outside; even when it was snowing and freezing in Nebraska. He is very social and loves playing with peers. These peer relationships often help him understand the written and unwritten rules. He is a very hard worker and loves to please.
This year has been very tough on Jayen. The transition to Kindergarten has not been easy and was not made any easier by the absence of his classroom teacher, a substitute teacher who had a hard time understanding Jayen and his needs, then another new teacher; as well as the fact that his school days are extremely shortened. During his two hour and 45 minute days he is also being pulled for OT, PT, Speech, and Special Education services. There has been a lack of time for Jayen to learn the Kindergarten curriculum. We would like to hold Jayen in Kindergarten for the 2016-2017 school year. As parents we worry about a placement with solely disabled children in a self contained classroom. We believe that an all day placement with disabled peers is not part of the Least Restrictive Environment.
Individualized IEP goals are educationally necessary to provide Jayen with a free appropriate public education. Goals that are written should be implemented within a short amount of time from the finalization of the IEP. Two of Jayen’s previous goals have no data and were reported that they were not worked on. As a result, it is our position that he has been denied a FAPE and the IEP is out of compliance. We will be seeking compensatory services. We are also seeking a properly written IEP with real accountability and transparency so we can be informed as to what progress Jayen is making on an ongoing basis. It would be appropriate for Jayen’s goals to be individualized and functional with a specific way to track progress and communicate progress to us.
Wish us luck!
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