Kiwinas

I gave my first public sppech about Jayen and our journey today. I felt very welcomed by the Kiwanis club in Wayne, Nebraska. I was also completely humbled by the presence of some of its members. There was a tornado that went through their community a few weeks prior. One of their member's home was torn in half. I actally took a picture of it on my way in to town. I was humbled by the fact that their community was facing this diffucult time, but they were all still coming together to help others and to listen to my story. I think I should have brushed up on my public speaking skills. I was very nervous and tried to not read everything word for word, but when I started choking up I had to just read.
 

Hi, My name is Nicole Hochstein. I am the mother of three beautiful children. Dalan 6, Jayen 3, and Brilyn 16 months. I am a military spouse to Mathew Hochstein.

On March 21^st, 2010 My husband left for a training mission. On March 22^nd we had to ask him to come home. My son and I were laying on the couch taking a much needed nap. An hour into the nap, Jayen’s arm started hitting my side. My four month old was hitting me repeatedly. I knew immediately something wasn’t right. I called a friend to come over and watch Dalan while I took Jayen to the emergency room. I don’t know how I knew, but I knew in my mind it was a seizure. In the ER, Jayen had another seizure in front of the doctors. He was put on Phenobarbital. My first experience with this medicine was in a roommates dog who had seizures, and now I was giving it to my child. We were admitted to the hospital. No one could give me any answers, and the doctors weren’t even sure he was having seizures. I felt like no one believed me. A couple days after getting out of the hospital, Jayen’s seizures started occurring in clusters. I called and called and was just told to increase his medicine. I finally took things into my own hands. I got out our video camera and sat infront of it until I caught what I suspected as a seizure. I emailed that video to everyone I knew who I thought could help. I finally got someone to listen!!!! Jayen was again admitted to the hospital. This time the prognosis was DEVISTATING! Jayen was diagnosed with a catastrophic form of epilepsy called infantile spasms. We were started on a very strong steroid called ACTH. Jayen eventally became seizure free and continued for 9 months. But slowly those damn things returned. We tried a few more medicines and eventually found another combination to stop the seizures. Jayen was once again seizure free, but this time for one year and four days. Three days later our daughter was born. 2012 has been one hell of a year for our family. We have tried over 15 different medicines in hundreds of combinations and have been unsuccessful in controlling his seizures. This has been a very lonely struggle for our family. I think we have ruined relationships with pre seizure friends, our family often seems sick of hearing all of Jayen’s medical drama, and we feel like we can’t do “normal” family activities that others families are afforded. I write a blog for Jayen. Some day I want him to be able to see how strong he has been. Some day I want to see how strong I have been. I recently discovered another mom’s blog. Our children have very different diagnosis’ but we share something very similar. I would like to share a portion of our blogs.

 Friday, September 13, 2013

Parenting a special needs child

I came across a blog today that belongs to a parent of another child that attends the same therapy center as Jayen. I'm floored and can't stop crying at the stuggles we all face having a child with special needs. Her words were so powerful and I felt that they also pertained to my child. Although they have separate needs, they are both special.

"He is 4. He is not mean by nature. He is independent and curious. He doesn't stop once he is rolling with a decision to consider the consequences. This is typical behavior in a four year old! Children repeat what they hear. We should all be mindful about what we say and the ears that hear it. "CHILD'S NAME" is not a mean child. His hugs are powerful. His smile magnetic. His laugh contagious. He is unsure of his body mass in relation to that of others. He feels little pain or pressure so seeks out the constant touch and it seems rough. We work every day on boundaries and gentle touches. .... Our lives are like the ocean... constantly moving. It is hard on him and on us ~ none of us in this house know what will happen when morning comes and sometimes we go hour by hour. And yet we keep going and do our best. And we appreciate when someone stops and really asks what is happening and what it means and how it is. We appreciate the non-judging curiosity of how it must be for us. Because that is how we learned ... we asked."

Jayen looks and sometimes acts like a typical child, but he is anything but! We can't make decisions days/weeks/months in advance. We try to plan activities and outings, but things often change in a very short amount of time. I feel lately like we have let down a lot of family and friends and I am so sorry. I wish I could explain to you how hard life with a special needs child is. I never knew life was going to be like this.

Through our entire journey I have found the most important resource to my family has been other special needs families. When I got Jayen’s IS diagnosis I immediately researched everything I could. I found a support group and learned the organizer lives less than 20 minutes from my house. I connected with him and he connected me with another mom in my community. Shelley Gillen has been my rock and saving grace. I can call her at 3AM crying and screaming and asking her what to do. I have since been able to pay it forward and help another mommy. As of two weeks ago though, I have had to start my search again when Jayen received another diagnosis. I have used the connections I have already made and have been able to learn so much in the last two weeks. I am now confident and ready to take on polymicrogyrias. I know that I have so much support behind me and if I wake up in a panic at 3AM I know where to turn, I know someone will listen! I wish that for EVERY special needs family.

 

I really wanted to share my ideas of how to get people together. I hope they took them to heart and will try to put some into practice. You don't have to have all the answers, but if you can find a friend that has already started or gone through the process then you have found an enormous resource. I'm so happy I was given this opportunity and I hope I can do it again.