Knowing Your Rights

What are your rights as a parent in regards to services and help for your child as they get older? That was a question that was posed today by a mother of a teenager. She only has three years before her child is 18 years old. I haven't even thought about that since #1: my child is only 9 at the moment and #2: I am optimistic that my child won't need any services by then. However, it is better to be prepared just in case.

The first thing that comes to mind is SSI or social security benefits. However, I think it is based on household income so I am not sure how that works. Here are a few links with information:
http://www.child-autism-parent-cafe.com/social-security.html

http://www.autism-world.com/index.php/2007/10/14/does-children-with-autism-qualify-for-disability-benefits/

Sometimes you might need legal help. I found the following site and although I am not endorsing them or even familiar with the firm, I thought I would post it so that you can see some of the points they make on the site: http://www.socialsecuritylawfirms.com/resources/social-security/social-security-disability-coverage/child-autism.htm

I will try and do some extensive research and post my findings in the near future.

Importance of Continuing Education

Professionals such as my husband have what they call continuing education and it's required to maintain their careers. When I was a Medical Technologist we had to have certain amount of hours to maintain current on issues concerning the lab. Well... motherhood is one of the toughest jobs in the world. I feel strongly that moms (as well as dads) should also keep "current" on issues concerning their children.

Seminars, workshops, and various other events occur all the time in our city. Sometimes you have to keep your eyes and ears open, but they are available (usually free of charge) for parents. The city actually has a budget for education and it includes education for parents. Everyone knows that raising children has it challenges, but raising children with challenges poses a totally different kind of situation. I have seen so many people get divorced due to the stress and the financial burden that usually accompanies. It's no wonder that cities devote so much effort into educating parents.

I urge you to find out when/where seminars are offered. They are usually at churches, schools, and libraries. The more support we get, the better off we are. Don't ever feel like you have to do it alone. There are so many people who are too proud to ask for help or to accept it. I have to say that I've made some great contacts going to seminars and support groups. There is always strength in numbers.
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A little help never hurts.
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Met a Remarkable Man Yesterday

I had to share this with you all because it just goes to show you that you can't judge someone without getting to know them first. I am so glad that I usually give people the benefit of the doubt.

The other day I was working out at the gym and a sweet gray-haired guy approached me about the Alabama Bowl game. He was so excited and he went on and on about the game. I had seen him before running around the neighborhood and could tell there was something "off" with him. When he talked he had a speech impediment and stuttered. He almost sounded like a stereotypical mentally retarded individual. It didn't help that English was definitely not his first language either. Normally, most women would have either walked away or felt uncomfortable... However, I began to listen to him and he was very articulate and his thought process was definitely normal. He just didn't SOUND normal and his motor skills were definitely impaired. After speaking to him he stopped and then said, "I am so sorry I sound like this... It's hard for me to speak. I have what the doctors call TBI (traumatic brain injury) and I am working hard to get my body back to normal. It has been a year now and I work every day to get stronger. I run two miles, I then get a little rest and then do jumping jacks to work on my motor skills. I spend most of the day exercising my body and mind. Up until recently I could barely talk and my balance was not very good. I live with my brother and he thinks I work too hard. I am not going to give up though. I have hope that one day I will be normal again. I have spoken to other individuals and it took them TWO years to get to where I am. That gives me so much hope."
I felt like crying after he explained that to me. It definitely made me look at myself and how sometimes we judge people subconsciously. It also made me think about society and how probably he must be treated on a daily basis. Do people treat him with respect? I sure hope so. Do people listen to him when he talks or just ignore him? I can only imagine.

I am so fortunate to have a healthy body and mind. I am thankful for my health and I treasure every day that I can work out and do what I want to do. I know that others are not so lucky and that it can all change in a blink of an eye.
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A healthy body and mind are worth
more than all the money in the world.
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Does My Story Sound Familiar?

I have met so many mothers with the same story to tell. I feel very fortunate to have this forum in which to voice my story and some of those I feel important to share. It's no accident that I have met some wonderful mothers along the way and they have taught me more than I can say. My hope has always been that I would be able to reach just ONE person. I felt that my mission would be accomplished if even one person was helped by my struggles. However, I have exceeded my expectations and I have reached dozens of mothers who are struggling and have no other place to go. In the process I have also learned so much and recently I had one of those "light bulb" moments. The following story could be YOUR story. Nonetheless it is a true story.

We take it for granted that we live in the United States of America. It's truly a land of freedom and hope. As long as we work hard and try our best, we can expect great things. I recently spoke with a mother who is from a foreign country where children with disabilities are tolerated, at best. She explained that they don't offer services in the schools and basically treat them like any other child. If they don't get it... they just don't get it. There is no "special" treatment at all! Parents are often embarrassed and have no other place to turn to for help. It's a fact of life that she doesn't want to even consider for herself. Right now she is here where things are going great, and she can potentially receive any and all services her child needs. However, that could all change in a blink of an eye. It's too much for her to bear. It's truly too much for ME to even think about.

No matter how much we may complain about the quality of services or the amount of services offered in our area, at least we have the opportunity to receive some help for our children. We have invaluable resources at our fingertips. Many services are free of charge and it doesn't take a lot of effort to receive them, in most instances. For the most part, our society does not shun others with disabilities. I see young men and women with disabilities working in various capacities and living independent lives. There is also HOPE in our country for parents. That is such a big deal. Without hope there would not be advances in treatments and services. Parents would just give up and probably resort to putting their children in asylums or possibly abandoning them at an orphanage doorstep. That is a reality in some countries.

As we celebrate the holidays, let us all give thanks for the blessings we have in the U.S. Let us not forget the people who have given up their lives for the freedoms and rights we have today. Let us not forget the miles we have traveled and the miles we have yet to travel. Let us not forget the past... lest we repeat it. As we begin the year 2010, I pray that we keep the spirit of Christmas in our hearts and that we try to always think of others before ourselves. I have learned that small things truly make a difference in others' lives. It doesn't have to be miraculous things. Sometimes people just need someone who will listen. We don't always have all the answers. It's amazing how much power a hug or a smile can have. Begin the new year with a positive attitude and you will see amazing things happen in your life.
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God bless you and yours.
Merry Christmas and Happy New Year!
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New Year's Resolution Suggestion

I have a suggestion for a "New Year's Resolution" for all you moms out there. I want you to have an open mind about this and really try to do it. My suggestion is that you try to complete ONE project that you have always wanted to do. For example, I have always wanted to get my music that I have composed over the years onto paper. I sometimes worry that I will either forget it or else lose my muse as the years go on. It's sort of like a legacy of sorts that I want to leave behind. I figure it might be something that my grandkids can play and know that their grandmother enjoyed playing.

Everyone has dreams and goals that they want to accomplish. I urge you to figure out what YOUR dream is and go for it in 2010! Sometimes we spend so much time worrying and caring for our children that we forget about our OWN dreams. I think it's the best gift you could give yourself and your kids.
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Just do it!!
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Holiday Survival Tips

With the holidays coming up I thought it would be beneficial to discuss how to survive the holidays. We're not just talking about the gifts either. I think the holidays are wonderful, but they also bring many factors that are often difficult to deal with. For example, diet is often changed. A lot of sugar is consumed compared to other times and sometimes the basics of nutrition are ignored.

Let's begin with dealing with off-days. Try to maintain some kind of routine, whatever that may be. It's also important that you don't forget to feed your children. Remember that they often have a snack before lunch at school and we might not even think about that. My daughter actually has snack AFTER lunch. She is accustomed to eating when she gets home from school. If you notice your children acting a little "hyper" or irritable then it might mean that they are hungry.

Next, I want to talk about gifts. Maybe it's because I have four children, but I think that it's important that children understand the reason for the season. They don't need a hundred presents to feel loved. As a matter of fact, I know some families that tell their children that Santa only has room for one present for each child and then the rest are from the parents. That makes it a lot easier to explain when they don't have the funds to get them what they want. In MY family, we don't do "wish lists". I just talk to my children and I KNOW what they want. As a matter of fact, there are things out there that they don't even KNOW about.

The last thing is spending time with your family. Sometimes spending time with extended family can be overwhelming for everyone.... but especially the children. Try to be mindful of things that may not seem such a big deal to you, but that could make things stressful. For example, talk to your children about rules at other people's homes. Explain the importance of using their manners and remembering their please and thank you's. You may want your children to bring a special toy or something to do in case there is not much to do where they are going. That usually works for us. If you have to travel a long distance, try bringing blankets and pillows. Those things seem to help relax the kids and comes in handy when they fall asleep in the car on the way home.

The holidays don't have to be stressful. Just remember the reason for the season and try not to get caught up the marketing of the holidays. There is no reason to max out credit cards and over-extend yourself in time as well. The most valuable gift you can give yourself and others is the gift of peace and joy. That is something that money can't buy.
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Jesus is the reason for the Season.
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It's So Much Work to be Your Friend

"It's So Much Work to be Your Friend" is the latest video I have watched by Rick Lavoie. I had the opportunity to watch it at the last PA meeting at our children's school. It was enlightening and informative and everything in between. I wanted to share some of the things that I learned and hopefully can help many of you with your own children.

Communication is basically the key to social interaction. There are numerous things that we take for granted such as body language, cultural differences, personal space, among other things. Rick explained how deficits in any or all of these areas can have a huge impact on the type of adult your child will grow up to be. Friends are not a luxury... they are a necessity. That is why it is crucial to make sure that our children learn how to make friends, and more importantly how to keep them.

He talked about so many things that my head is about to explode right now. However, I will try and discuss a few of the things that might be pertinent to many of you reading this... since, I feel it's pertinent to me. One of the things he talked about was the fact that children don't have the same opportunities to make friends like we did. They don't have as much "free time" at school and then they get home and have homework. By the time they can play they end up on the computer or watching t.v. He pointed out how "play dates" are the thing now and that the majority of the time the kids will end up playing video games and not say a single word to one another. He suggested making the first play date in a neutral territory such as a playground. He also suggested that it never be three kids since ultimately YOUR child will be the one left out.

Lavoie gave a rather interesting statistic. He said that communication is 93% NONVERBAL! I was surprised to hear this, but it makes sense once you think about it. Facial expressions, hand gestures, body language, just to name a few are some of the things that say more than words. Some kids have a difficult time understanding the nonverbal cues that people make. This is critical in understanding why sometimes kids with learning disabilities have social problems and difficulty making friends. For example, Lavoie told a story about a time when he had some REALLY good news to tell his wife and he looked all over the school for her (she worked with him). When he finally found her, she was in the dining hall talking to another teacher. He said that the first thing he noticed was the somber look on their faces and right away he knew something was wrong. Instead of telling his wife the good news, he decided to approach them cautiously and ask what was wrong. He found out that the other teacher had just gotten the news that someone close to her had passed away. He told us this story and then asked, "how many of YOUR kids would have just gone up to us and told us the good news without even realizing that it was inappropriate?" I looked at my husband and nodded because that described our #2 very well.

Personal space is another issue. He demonstrated how we Americans have a need for our space. Some of the examples he gave were rather humorous, but true. For example, he mentioned how in a restaurant our table is OUR table. If anyone else tried to sit there or put something on our table then we would definitely not like it. Another example is sitting on a plane. The tray is ours and if someone was to put their drink on it then that would be invading our space. The last example is the most common thing that people mention.... the elevator. We avoid eye contact and NEVER touch another person if we can help it. It all depends on the situation, but there is a social understanding that we will behave in certain ways under certain conditions. What is appropriate in one situation would be totally inappropriate in another. How do you teach this to a child? He said to take every opportunity to talk to your children and to teach them. We take it for granted that we have decades of experience. We can pass that on to our children.

Social contracts are also very complex. For example, if a man is walking down a street and a lady is approaching him then he might nod or say hello but he will keep his distance. If he were to approach her and touch her that would be totally inappropriate. I see children with autism or other learning disabilities who will hug strangers out of the blue. They might stare without realizing it. These things could be misinterpreted. Lavoie also gave an example of a child who went to a vending machine and couldn't make up his mind. He stood there for several minutes when all of a sudden a lady came up behind him and waited. She waited for almost five minutes and then left in a huff. The "social contract" in this situation would have been to let the lady go ahead while he made up his mind, but he totally did not get it. Parents can teach their kids by example, but more importantly, we should verbally discuss these things as well. We need to take advantage of every opportunity and not take it for granted that our children will "just get it" because they might not.

Voice dynamics is yet one of the more complex things for some children to grasp. Lavoie gave examples of how just a simple increase in volume of a word in a sentence can change the meaning. I see this with my OWN child who sometimes will sound rather disrespectful without even realizing it. I have to remind him all the time. He doesn't understand that his tone and volume affect the meaning of his words. At times I feel like he's a parrot and will mimic what he hears. He will sometimes repeat what I say. I have to remind myself that I can take these situations and transform them into a learning experience. He's still so young and I have so much I need to teach him.

The last thing I wanted to share was story he closed with. He said that in all his years teaching at his school for children with special needs, the number one issue that was top priority for parents and students alike was not academics and getting into a prestigious college. It was the basic need of friendship. He asked a group of teenagers if they had the choice between doing excellent in academics or not ever having any problems socially for the rest of their school years, what would they choose? Inevitably they all chose the latter. We cannot underestimate the power of friendship for a child. It will mold, shape, and guide them to be the adults they will become.

If you have the opportunity to see ANY of Lavoie's videos I encourage you to do so. He always puts everything in perspective and gives parents simple tools that can accomplish so much!

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This is the link if you'd like to purchase the video. I feel blessed to have a school that will offer these videos to the parents so that we don't have to purchase them.
http://www.shoppbs.org/product/index.jsp?productId=2082686
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