Monday, October 13, 2014

Expressing Experiences



I am currently recuperating from having a Vagus Nerve Stimulator implanted to help me regulate my seizures, and hopefully to decrease the amount of medications I currently take.

The purpose of the stimulator was because we discovered that my medication management was getting out of control. When things are getting out of control, it can be very scary. Sometimes it can be so scary, people tell you not to bring it up, but you need to talk about to get a better understanding.

Often, they may react differently at first, but the more they know, the better off they will be. People sometimes need more reassuring and encouragement to speak up about what is on their minds because surprisingly, even younger people can come up with brilliant ideas; and we need more of that today. Even socializing at home needs more attention, it seems as though everyone is on their phone, no matter whom they are with, or where they are, and they are not talking to one another.

I’ve been lucky that I have a family who notice side effects and will talk to me about it, yet what I’m trying to say, is that more families should be like that because opening up is the best way to deal with it.

Until next time…
Alyssa

Friday, August 29, 2014

“Back to School”


It is once again time for school to begin. 

Parents of children with special needs often have to research schools to find a good fit to meet their child’s needs.   

After finding a school they feel meets their needs, they may have to encourage their child to stay in school, because some may want to give up and drop out. Also, you should ask you child what they want to study, because then it tells you what they want to experience in the world. It will help you with your research in finding a school that offers what they want. 

Keep encouraging them to work at school on a regular basis, and let me them know that the time will come when they will be good at it, and that will help build their confidence. Everyone has their own gifts and strengths, so if you find a school that offers things your child is interested in, they may do better in classes and possibly make more friends, and hopefully find a job doing something they like.

Until next time…
Alyssa

I’d like to start this post by telling you I have Epilepsy.



Hello again,

Last week, I went to a support group for people with Epilepsy, and I learned that not a lot of people tend to know about these monthly meetings, and they are having a hard time getting more people to attend regularly. 

At this meeting, they had a representative from the Epilepsy Foundation of Greater Chicago speak about different programs offered through their foundation. I found it interesting, because I could talk calmly, and not worry about what I said. 

If you, or anyone in your family has Epilepsy, I would encourage you to find a similar support group in your area.   

I brought this up because after years of controlling my seizures pretty well with medications, I have decided to have a Vagus Nerve Stimulator surgically implanted, in hopes that I can reduce the number of medications, and possibly the dosage of some of the ones I am taking. 

If it works, down the road, it may help me save a lot of money, which we all want. We always have to keep in touch with our doctors in case something comes up. Regular visits help them stay on top of your condition.

Until next time…
Alyssa

Friday, August 8, 2014

Adventures in Public Speaking




As you may know, I was featured in a movie produced by my brother, called “Lost Child?”.  You can learn about it here: Lost Child? Movie 

After production wrapped up, I was given an opportunity to speak to a group of students at Loyola Marymount University in Los Angeles. After a screening of the movie, we offered the students a time to ask questions. 

Since then, I have had at least five additional opportunities to talk to small groups about the movie. I have also spoken at an annual meeting in Illinois called Speak Up/Speak Out, where I answered questions from very large groups. 

Now I would like to have opportunities to talk to parents of younger children with disabilities and to reinforce how important it is for them to open up at a younger age - the sooner the better.  I would like them to know that they can open up to their parents when they feel something is just not right, and about getting them to express what is on their mind about what they see in the world. 

A lot of times, these people end up having one or two magnificent talents in their lives (like a gift from God). I was given the gift of having a talent for public speaking; other people may have a talent in math, knowing about nature, etc. 

I know that my gift has helped me out a lot as a confidence booster, a real pat on the back. I am looking forward to finding out about potential speaking engagements in the future.



Until next time…

Alyssa

Thursday, June 26, 2014

Patience


You know how your parents always said, “Patience, you’ll get there down the road.”? 

Now, you are down the road, and the point is, people without special needs realize their interests quickly, and go to college. 

Yet, the trick is , what to tell someone with special needs? Often, people with special needs hear, "Patience, patience, you’ll get there." But that can be nerve wracking for them. The question is, “Why?” In today’s society, everyone is wanting to get everything quickly. You can microwave your food, or use computers, but people with special needs are never going to get past their limit of what God gave them.   

What I am saying is, we need to learn to respect everyone’s boundaries equally, including people with special needs. They deserve to be heard and respected just as much as you do, when you need it. 

So, even if it is volunteering, taking time out to listen is the best way for people with special needs. That is because half of the time, what they are trying to say may seem like a puzzle to you, but it is their reality. I went through that. My mom had back surgery, and my dad would always explain it , but gave too many details for me to have on my plate. 

Yet, because people are not patient, I was afraid to speak up and ask what he meant, because I didn’t know better. The pain for me kept growing, and it affected me to where I am at the end of the road for medicine. A new door has opened up though, and I have the opportunity to have a VNS implanted in me to help with my seizures. I am very thankful. 

Some families may be scared to hear that someone may need that, but the person with special needs is thankful that people are looking out for them in ways they can’t. I am hoping this takes a lot more off my plate, and lets me gain more confidence to be involved in activities. It is very important to know this because, yes, some families are poor and need help with this, but it might be coming to where volunteering may be a help to these people, and they can be taken care of, instead of being told you will be okay, but not have the support.

Until next time…
Alyssa

Monday, June 9, 2014

Have more respect!

Have more respect out there, no matter what the gender is. 

I notice that a lot of times, people of the same abilities stay in their own groups. When somebody comes along who is different, but is still what everybody else is on this planet; human. It doesn't matter if it's your status or your culture, everyone has feelings.

And as we know, feelings are a hard issue for people with challenges from a disability. They would also like to be included.

If you don't feel you're included you often feel left out. It can sometimes take ages for the feeling to fill because that is really how you get involved with things out there. You're not going to want to do all those activities like hiking and Disneyland if you don't have friends with you.

A lot of times because people in our shoes have a hard time asking, we would like to be accepted more for who we are and not tried to be turned into someone we are not. That is how they get taken advantage of. The more you open up when you are younger the better you are able to communicate as you grow.

Accept when other people don't understand things. What is just a joke to you maybe hurtful and teasing to them. Listen when they ask for help and take them seriously. Laughing at someone who is asking for help means that nothing happens and they get nothing out of it. When you laugh at someone who asks a questions, they feel like they have felt before but hurt more. That's the truth.


- Alyssa

Thursday, May 29, 2014

Focus on medicine side effects


When you see your family members or your children acting different, you should not always assume they are being crazy. Their behavior can be caused by side effects from medicine.

A lot of times, people may not want to know there is a reason, but if you stop and think about how you know the person, you should ask yourself if this is behavior that is common, or if it is new. If it is new, you should bring it to their attention to see if they understand it, and a majority of the time, they don’t understand it. At that time, they should talk to their doctor to see if it might be side effects from the medicine they are taking.   

I discovered an issue with side effects because my behavior was changing, so I went to my doctor. You have to be straight with your doctor, so they have a better understanding of what is going on. They may want to look at changing the medicine, or increasing or decreasing the dosage to see if that helps.  

 Try to be with the person when they go to the doctor, because often, they can be as firm and straight with the doctor, because they may be able to fill in some details that the person was unable to relate. I have been having trouble when I go to the doctor without my mom. I have been using my supports from the agency that works with me, and it helps to have an advocate.

Until next time…
Alyssa