Friday, February 26, 2016
Who is judging whom?
Every morning when I take Jayen to school we park the car, wait for the crossing guard to cross the street, then meet our friend so she can help Jayen get to his classroom. I've always felt like the crossing guard was looking at me; but I felt like it was never in a good way. I would see how he looked at me differently when I actually had time to do my hair and make-up compared to when I was rushing to even put a bra on. I always felt like he was just judging me. Recently he started smiling at Jayen every time he said thank you in his way. I felt like we were having a little break through. Well, I think I finally understand why. Today he stopped me and asked what surgery my son had. I was a little taken back then realized he saw Jayen's scar. I simply replied he had brain surgery. So did his son; he recognized the scar. I was taken back with his response and left feeling like I was the one who was judging him. He had been staring at us trying to understand or maybe trying to remember those days or maybe trying not to remember those days. For a split second I understood him and he understood me. We talked for a little while longer but eventually we both had to leave. I'm so thankful he took the initiative to stop and ask. I'm so thankful he shared his story. Understanding each other leads to compassion; I'm so thankful for both!
Wednesday, February 24, 2016
Preparing for IEP
Tomorrow is Jayen's IEP and I have been working all day on our parent input statement and updating his medical information. I really hope our thoughts and opinions are taken into consideration.
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.
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!
Tuesday, February 9, 2016
Grieving - Awake or asleep?
It's 11:00pm here and I can't even begin to clear my mind enough to go to sleep. Not only am I thinking about all my mom duties for tomorrow, when to get to mass for Ash Wednesday, how much my toe is throbbing because I dropped my KitchenAid mixer bowl on it today, how much I would love to sneak into the pantry and eat a Twinkie we have in there for valentine's treats, the amazing conversation I had with an IEP advocate today, but what is keeping me awake has to be that I'm replaying the conversation with the principal over and over in my mind.
I had requested a meeting with the principal at Jayen's school, to talk about the possibility of retention for him. This year has really been such a bust for him. Not only have the days been incredibly short due to budget cuts, but he has had a teacher that stopped showing up, a substitute that was less than desirable, the teacher resigning, then finally getting a teacher that is more than just a warm body. He's only has class for two hours and 45 minutes. Of that time he is also receiving occupational therapy, speech therapy, and physical therapy as well as his special education services. There has been no time in the day for him to actually be part of the Kindergarten classroom and activities. I'm not sure what the best placement is for him next year, but I really wanted the principal to hear my side of the situation. Why I feel my son would benefit from another year in Kindergarten. But what I left feeling was that his mind was made up long before I ever started talking. He asked me what my pros and cons were and I honestly shared. I spoke of the one con I had and the hundreds of pros, but he continuously took my one con and repeated it over and over again. He didn't care about any of the things that have happened this year. He spoke of how he sees Jayen's future. He reasoned that he only retains students if he can see that a year would bring them back up to speed, that after one more year of Kindergarten Jayen still wouldn't have all the necessary Kindergarten skills to move on to first grade.
I'm so taken back by this and can't sleep because those thoughts are running a marathon through my head. How can anyone say where Jayen will be in a year? This is the first school year he has been seizure free for this long. He is making tremendous progress! And with the right support, AND WITH THE RIGHT SUPPORT I feel he could catch up. I know Jayen will struggle for everything. I know it will be harder for him to learn than his neuro-typical friends. But who gets to say where he will be?
The thoughts keeping me awake are not only who gets to make that decision, but if I am being naïve about where he will be in a year, five years, fifteen years from now. What does Jayen's future hold for him? What kind of life will he live? There is always a grieving process after receiving a devastating diagnosis for your child, but I think I am still grieving. I wonder when I will stop grieving. I wonder when I will wake up from this nightmare. Maybe I'm not having trouble sleeping, maybe I'm having troubles waking up.
I had requested a meeting with the principal at Jayen's school, to talk about the possibility of retention for him. This year has really been such a bust for him. Not only have the days been incredibly short due to budget cuts, but he has had a teacher that stopped showing up, a substitute that was less than desirable, the teacher resigning, then finally getting a teacher that is more than just a warm body. He's only has class for two hours and 45 minutes. Of that time he is also receiving occupational therapy, speech therapy, and physical therapy as well as his special education services. There has been no time in the day for him to actually be part of the Kindergarten classroom and activities. I'm not sure what the best placement is for him next year, but I really wanted the principal to hear my side of the situation. Why I feel my son would benefit from another year in Kindergarten. But what I left feeling was that his mind was made up long before I ever started talking. He asked me what my pros and cons were and I honestly shared. I spoke of the one con I had and the hundreds of pros, but he continuously took my one con and repeated it over and over again. He didn't care about any of the things that have happened this year. He spoke of how he sees Jayen's future. He reasoned that he only retains students if he can see that a year would bring them back up to speed, that after one more year of Kindergarten Jayen still wouldn't have all the necessary Kindergarten skills to move on to first grade.
I'm so taken back by this and can't sleep because those thoughts are running a marathon through my head. How can anyone say where Jayen will be in a year? This is the first school year he has been seizure free for this long. He is making tremendous progress! And with the right support, AND WITH THE RIGHT SUPPORT I feel he could catch up. I know Jayen will struggle for everything. I know it will be harder for him to learn than his neuro-typical friends. But who gets to say where he will be?
The thoughts keeping me awake are not only who gets to make that decision, but if I am being naïve about where he will be in a year, five years, fifteen years from now. What does Jayen's future hold for him? What kind of life will he live? There is always a grieving process after receiving a devastating diagnosis for your child, but I think I am still grieving. I wonder when I will stop grieving. I wonder when I will wake up from this nightmare. Maybe I'm not having trouble sleeping, maybe I'm having troubles waking up.
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