Epilepsy Foundation Of Michigan Rocks

Of all the big named disability centered organizations that I have tried to use to help my son, one stands out because I know the money is used in a way that gets down to the people who need it most.

I have something I complain a lot about behind closed doors (and sometimes in front of open ones) because it is just so wrong. I don't understand how the big named "charity" groups can take so much money from people who give to them in someone's name yet not give back in a noticeable, real way to the people who it is intended to help.

The Epilepsy Foundation of Michigan is a group I have worked with for about a year. I have personally seen their work reach the everyday people. They help people understand, treat, and educate about epilepsy. Their programs help people deal with the world as a whole - from doctors to educators. The conference they hold each year, and camps for the kids are invaluable to those who attend.

There is a community or family feel about the local group. I know several of the folks by name thanks to the way they reach out.  Russ is one of those hard working people. I was able to meet him face to face and watch him work at last year's conference. It was hectic in the same fashion as all such things are, but he took time to talk to people, and note their concerns or thoughts. Russ is just one example of the good folks that make it all work out.

One of the most helpful programs I have used is the Learn & Share Conference Calls. You sign up, call in at the time and date, and you get chance to learn about variety of topics from adaptive technologies to medications to surgery. It is free, educational, and it gets down to us everyday people.

They offer many helpful programs so make sure you check out their site for yourself. Here is their Facebook page as well. The head organization is one I don't know as well but I recommend you check them out as well because there is a lot of good information available on all these sites.

Now, to support them and to raise awareness, my family and friends are supporting their biggest fundraising event in our local area. On June 8, 2013, we will be taking part of the Summer Stroll For Epilepsy at the Detroit Zoo.  If you would like to help, you can find our team, "Walking With Rowan" here, and the main page for further information here. We could really use your help. If you can't sponsor one of our walkers, maybe you can share the information or ask your very nice employer to sponsor us. We would be forever grateful.

(or you can simply click the donation button on the blog and tell me what it is for and  will put it in to the donation page on the site myself)

Go Team Walking With Rowan!!!

 

Is Normal Harmful?

I recently read another blogger's take on the world's view of "normal" and "not normal." I have read other people talk about the pros and cons of labels. I want to share my thoughts on the whole thing.

Labels have their uses. If you have a label, you are able to use it to get services, to get ideas on treatments, and basically, to know what to expect at least in an indirect way. Labels can be misused by people in authority, may cause a person to be held back, or be the wrong label. It must be balanced.

What I really want to talk about is normal. Often folks say there is no normal, and they are right but only to a point. Maybe if we said "Typical" instead people would get it better.

When you are raising a child, you know they follow a "typical" path. If they don't, you worry and start asking questions. The doctor will say that there is wiggle room on that typical path but there is also a basic, recognized side path to the main path. Anything beyond that wiggle room is not typical.

Should normal/not normal or typical/not typical guide how people are treated? Yes. And no. The abilities should be recognized and the disabilities need to be acknowledged. You can't set goals for the stars or at the bottom of the ocean for another person.

Ignoring a non typical person's special need doesn't make it go away. Wanting them to be normal, sets them up for failure. While we should help them be as functional as possible, as normal as they are able, we shouldn't expect them to be anything more than they are able to be.

Does that me we don't reach for the stars? Not at all. It means that you set achievable goals and once you get there, reach beyond. You keep doing that until you have gone as close to the stars as you can.

Along that road, you must also allow a person do what they can. You don't hold someone back because of something a doctor said they couldn't do. You keep encouraging them to reach beyond that line. You don't force but encourage. You try hard not to enable a mind set of "I can't because the doctor says..."

The outside world should never assume based on a perceived difference. They shouldn't assume a child will be unruly in a restaurant  just because they have a disability. They should also avoid thinking that a child melting down in a store, is a brat because they don't see a disability. There must be a balance.

Therapists are there to help a child reach their personal "normal," not the normal of the rest of the world. If they forget that, remind them. Doctors can tell you the typical path but not the personal path of the patient. Don't let them fool you, they can't and don't know everything.

People who have never dealt with the issues of the non typical person, shouldn't really have a say in the way they function in the world. The can offer help, ask polite questions and try to learn. They should NEVER judge, assume or offer advice when not asked.

Normal is harmful when used improperly to judge people, to set the path of someone, or to claim someone who is not typical is lessor because of it. Never should normal be placed as better or more. One is no less or more disposable than the other. It is very important to hold to the idea that different is not bad and has it's own things to offer the world.

Thoughts?

Selfish Parenting

                  Disclaimer: I know it isn't the same for everyone.

Parenting to me is not about me. It is my "job" to care for the lives and feelings of the souls that I parent. It is my role to help them find their way in the world and to guide them into being the best kind of stand up, good human that they can be. It is a life long job for as long as they need me, want me, ect... It is about them.

I enjoyed each stage my children went through... from the fluttery first movements to the trials of teen years and every smile that came a long the way. Even the children that found their way into the family are held with that same wonder and joy... awkward for the young teens. *grin*

So, lately I've noticed a trend of parents, mothers, who think that their parenthood is about them. They are the ones to be served by the child. The child should fill some void in them, the child should be all obeying and a mini-them. Free thought is limited by the desires and morals of the parent.

They think every stretch mark is not a mark of creation but of trials. Every missed party is some moment to fault the child's existence. Milestones are not celebrated from the child's point of view but from how it marks the parent's life. The good in the child is only looked at as being caused by good parenting while the bad is because of the rotten kid. The kids are in the way until it is time to show them off as pretty dolls to gain something.

How did some folks get to be so selfish? Children are not play things. Children are not disposable. Children are not meant to be left to their own devices or to raise themselves, but they are also not meant to be so structured and keep ridged that they can not breathe without instructions. Balance.

I would love to hear your thoughts on this. I guess I just don't understand the parents that can not find the joy in a child or the role they play in making that child into a good adult.

Nothing Is Normal Here: Special Manners 101

I know you all know this but no two anythings are alike. A speck of dust in the mold can cause a change in the make up. A slight change of the winds, a bad piece of cheese, a slight bend in a strand of DNA and something is different.

"If you have met one child with Autism, then you have met one child with Autism."

You can replace the word "Autism" with any condition or situation and have the same type of meaning. No one deals with anything the same way. Nothing effects people the exact same way.

There are people who have no real understanding of how hurtful and wrong they are when they speak. They fail to listen and understand the individual before they jump in with whatever view of the situation that they have. 

Special Manner #108: Your easy may be their hard.

Here is a quick example or two: Your child may have potty trained early or on time, even with a disability but her child may not have the proper sensations or communication to potty train. Maybe you used this method or that one and it worked miracles. Maybe he had used them too but his daughter just couldn't make it work.

If we ask, then we deserve what ever answer you give us. If we don't ask, maybe we have heard it before, tried it before, or have bigger worries. If you must share your thoughts, make sure you understand that every child, person, and situation is different. Include that understanding in your views.

You may have had tubes in your ears, or maybe sat through the procedure with your child. The doctor told you how it is a easy, simple, five minute procedure. You may laugh it off because you know it is routine and a fairly easy thing to get through for most people.

Here's what you may not know or understand. Special needs parents have a few more things to think about that they shouldn't have to explain but often have to. Even routine surgeries can be life and death. Some kids don't deal with being put under well. Some kids stop breathing and need oxygen. Some kids are sensitive and rash out or suffer allergic reactions. Some kids have weak lungs, sensory issues, compromised immune systems, or other complications that makes your routine into something scary and difficult.

You never know what another person truly faces everyday, even if they share bits and pieces. Even typical, normal, everyday people react to, deal with, and suffer differently to things so why is it hard for people to understand that with special needs people?

So what do you do if you are trying to be helpful, to understand, or to be there for someone? You listen and learn about the people you are dealing with. You wait to be asked your thoughts before you give advice. You make it clear you are trying to understand the difficulties they face. You don't judge. Never judge  even behind their back - because they will and do hear and feel it. Let them know that you have faith in them and that it will all work out.

Now for a health care, quality of life, 'I would love to hear your thoughts on this' link - Go here to read about a young man who was NOT allowed on to go on the wait list for a new heart because he is autistic.

I'm pretty sure you know what I think but If you all have enough intrest in it, then I will write something up.

Be well all....

Information Processing Needs For Special Needs

 (Check out the Autism Discussion Page which is described as "This page was developed by Bill Nason, MS, LLP to discuss tools that help children on the spectrum feel safe, accepted and competent. Although each child is different, with their unique strengths and challenges, their are some common strategies that can strengthen the social, emotion, and cognitive security for most children on the spectrum. Come learn, share, and support.)

Found this on Facebook and want to share it here because it is VERY important information for anyone with Processing Disabilities:

Supporting “Information Processing Needs”!

Given the “information processing” difficulties mentioned in the previous posts it is important to be aware of strategies to help support the child.

1. Give the child time to process. With delayed processing, it is important to give the child 10-15 seconds (or longer) to respond. If you keep repeating the prompt, before processing is completed, they have to start processing all .over. This is very exhausting, and irritating.

2. Let the child pace their performance. We cannot push them faster than their brains can process. If we do, the brain panics and reacts in “fight or flight.” I see this all the time. We are constantly trying to speed these kids up, pushing them faster than they can process.

3. Shorten your words! Provide very short, concrete directions. Use short phrase and sentences with only the main point. Many of the children have auditory processing problems. The longer the sentences, the more words, the more chances the information will get jumbled and difficult to sort out what is important. Only use the important words, getting to the point.

4. Use visuals whenever possible. Demonstrate (model) what you want. Give visual directions. Write out a couple of directions for school topics, instead of verbal directions. Words are fleeting, whereas written instructions are constant and can be easily referenced.

5. Break it down, slow it down. Break tasks down into parts, and give them sequentially. If possible give them a checklist to mark off as they do each step. DO NOT expect them to multitask! Allow them extra time to get it done, but let them finish! It is important to be able to finish one task before going to another.

6. Give the student outlines, laying out the important points so the student can better categorize the information you are giving them. A simple outline will highlight to them what information is important to focus on, and giving them mental “files” for categorizing, organizing, and storing the information.

7. If possible “preview” the learning ahead of time, to give a mental framework of what is being presented. Many of the children have difficulty sorting out the relevant information from the irrelevant. This highlights the areas of importance to help direct their attention, and gives them a frame of reference to organize the information.

8. Allow the child to use their preferred way of communicating what they know. Many of the children have problems writing. If that is the case, let them give verbal answers. If you require them to write, they cannot think about how to write, and what to write about at the same time. If you want to find out what they know, let them pick the medium of expression.

9. Allow the child plenty of breaks. Learning and socializing is extremely taxing. Provide exposure in small portion so that it does not drain their mental energy.

 

(Check out the Autism Discussion Page which is described as "This page was developed by Bill Nason, MS, LLP to discuss tools that help children on the spectrum feel safe, accepted and competent. Although each child is different, with their unique strengths and challenges, their are some common strategies that can strengthen the social, emotion, and cognitive security for most children on the spectrum. Come learn, share, and support.)