What Is An Advocate? What Does It Mean To Advocate?

"Become a great advocate for your child" and "learn to advocate" were phrases offered often by doctors, teachers, social workers, friends, and family when we first learned of our daughter's diagnosis. But what did they mean? Upon asking, I uncovered numerous interpretations.

And with my love for words, I wanted to know more.

I searched for the definition of advocate in the Merriam Webster, Oxford, and American Heritage dictionaries. There are similar definitions for advocate as a noun: one who speaks, pleads, or argues for a cause; a supporter or defender; one who supports or promotes the interest of another; a person who publicly supports or recommends a particular cause or policy; and a lawyer or barrister. As a verb "to advocate" is defined as: to speak, plead, argue in favor of; publicly recommend or support; and speaking up for someone who can't speak up for themselves.

Next I wondered about the etymology of advocate and referred to the Online Etymology Dictionary: " mid-14c., one whose profession is to plead cases in a court of justice," a technical term from Roman law, from Old French avocat "barrister, advocate, spokesman," from Latin advocatus "one called to aid; a pleader, advocate," noun use of pp. of advocare "to call" (as witness or advisor) from ad- "to" + vocare "to call," related to vocem. Also in Middle English as "one who intercedes for another," and "protector, champion, patron. Feminine forms advocatess, advocatrice were in use in 15c."

My curiosity peaked when I read the synonyms listed by Merriam Webster: exponent, advocator, apostle, backer, booster, champion, expounder, espouser, friend, gospeler, herald, hierophant, high priest, paladin, promoter, proponent, protagonist, supporter, true believer, white knight. Some of these words have different meanings from the original use of the word.

I was beginning to understand why individual interpretations were numerous.

Then I googled "advocate" and found links to adoption, GLBT, human rights, children, family peace, mental health, women, self government, youth, and farm advocates. When I googled "special needs advocate" and "special education advocates" I came across paid positions that support children and families. When I googled "parent advocate, special needs," I found references to advocacy agencies. When I googled "parent advocate, special needs child" and "parent advocate, special needs medical," I found limited guidelines on how to advocate for your child. And when I googled "special needs teens, self advocate," I came across useful tips to help teens develop into advocates for themselves.

Not only in advocate's defintion, but there are also various interpretations in advocate's application.

It seems that advocate has experienced a semantic change, a shift in its meaning over time. A word's meaning can change over time, even drastically, based on how people use it. That means we can influence how advocate and other words are used. I have and will continue to use advocate to mean being a proponent and enthusiastic supporter for those whose voices aren't heard or who can't use their voices for themselves.

To take this one step further I am asking others to share their stories of being an advocate for another or to share how they have learned to become an advocate for themselves.

Allyson

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Tweens And Teens Talk: Confidence Is the Root of Advocacy

From a 14 year old... 

Becoming an advocate for yourself is difficult, but very rewarding. There are lots of important steps and aspects of self-advocacy, and I think that knowing about these can help a person become not only an advocate for themselves, but also gain more self-confidence and respect. 

One thing that I find very important for advocacy is really understanding your own disorder. Part of advocating for yourself is being able to confidently speak about your needs in order for those needs to be met. You need to be able to provide a good reason why someone should accommodate for you. And remember there is always a good reason for someone to accommodate for you, one of the hardest things is simply telling people what you need from them.

Another thing I find important for self-advocacy is the support of friends and people outside of my family. Sometimes having a metabolic disorder can feel isolating, and talking about it can make you feel even more alone, mainly because nobody really gets it. Having at least one good friend who understands your challenges can inspire you to talk more and make your needs known, a crucial step towards advocacy. 

The practical side of self advocacy is also important. You need to know exactly what you want to accomplish in order to speak for yourself to make an impact on your lifestyle. I recommend talking with your parents or someone who really knows about your needs and come up with a list of goals. These can be physical, like a spot in a front seat, or not physical at all, like respect.

The most important thing you can do for yourself is to be confident! I know that sounds really difficult. It is. But confidence is the root of advocacy, so try to boost confidence in any way you can, except by shunning your needs. You need to love yourself for who you are and know that people will still like you, respect you, and care about you no matter what. Your needs are only a small part of who you really are, and often confidence will come when you realize that there are so many other beautiful things about you. Your needs simply complement them. 

I think my parents helped me the most in terms of learning to advocate for myself. They gave me all sorts of strategies and options for handling my metabolic disorder. What helped the most was giving me the freedom to try out each strategy. Advocating for yourself is a learning process, and you have to try different things to find out what works and what doesn't. Their emotional support was amazing as well, and it continues to nourish me today! 

I think motivation helped me learn how to be a self-advocate. Advocacy only works if you really want it to, and after that it's simply listing your needs and finding what works for them. The best part of self advocacy is the independence that comes with it, and when I realized that self-advocacy would bring me independence, I became much more interested in accomplishing it. I mean, what teenager likes the idea of being dependent on her parents to manage her life forever? That idea wasn't appealing, so I turned to self-advocacy. 

I think the biggest stumbling block in self-advocacy has actually been myself. Self-advocacy requires you to admit that there's something different about you that needs special attention, and as a teenager, that's not always something I want to admit. 

Self-advocacy is scary. It requires people to look at you, to analyze you. You're not part of the crowd, in standing up for yourself, for that brief moment, you don't always fit in anymore. As a teenager, I don't want to be different. I don't want to be the alien. And that's kept me from speaking up for myself. 

That's why confidence is so important, it enables you to act. Find confidence through the support of friends, through self-affirmation, for the realization that you are not strange or weird or a freak but that you are just as good as everyone else, so you deserve fair treatment. And when you realize that about yourself, it relieves lots of stress that you might not even know you have. It's a weight off your shoulders. 

So the MOST IMPORTANT THING is to be confident. After that and a little bit of planning, self-advocacy will follow.

Some Tips For Developing Self-confidence

1) Connect with other people who share your challenges. This will remove the sense of alienation.

2) Find something that you love to do or are good at. Try to define your life by that hobby or skill instead of exclusively by your needs.

3) Express your frustration! Don't bottle up emotions, they need to come out to make room for confidence.

4) Make at least one friend without your needs who knows about your needs and challenges, and talk to them when things get hard. Having a friend who doesn't have but knows about your needs can give you a sense of acceptance and can foster self-confidence.

About Author:  Leah is fourteen years old and in ninth grade. She's interested in math, science, music, art, anime, and track and field.

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Resources on Self-Advocacy

Here is information to help tweens and teens learn to advocate for themselves. If you know of additional resources please submit your ideas.

Kids As Self Advocates (KASA)

60 Guidelines And Tip Sheets Written For Youth By Youth (KASA)

Tips For Teens: Use Your IEP Meetings To Learn How To Advocate For Yourself (PACER)

Be Your Own Best Advocate (PACER)

It's My Choice (Minnesota Governor's Council On Developmental Disabilities)

Get Accommodations And Advocate For Yourself In College (About.Com Learning Disabilities)

Allyson


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The Gripcase

I LOVE sharing products that I LOVE. The Gripcase is one of those
items that delighted me when I first saw it. I knew that it was

going to make the iPad even more user friendly than it already was

for my daughter. The chunky handles let her grab on and hold tight!
And it's so lightweight!

Some times a child learns better when a 

screen is on a flat surface. You can hang

 the Gripcase on a wall for easy access.

The bright colored cases make it inviting to use.

Here's my daughter using her iPad.

The Gripcase rests easily on her lap. She

can tilt the iPad using the Gripcase handles

at an angle where she can best see the screen.

You can now purchase a stand for the Gripcase! 

It allows my daughter to use both hands 

for the occupational therapy apps

that require her to coordinate her hands. The stand seems very 

durable and I like that its made in the USA. All in all a great

addition to the Gripcase product line.

Check out Gripcase's website.

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National Association for School Psychologists

Thanks to a parent on a list-serv for Agenesis of the Corpus Callosum I learned about an organization I did not know about today--The National Association of School Psychologists.

The organization posted an article, A National Tragedy: Helping Children Cope, which I have been circulating this morning. It is well-written and to the point. I scanned their web-site, http://www.nasponline.org, and it is outstanding. It is a great source for school psychologists, parents, and educators. I also found this article posted on their site, which is the first of it's kind that I found with a focus on children with special needs Coping With Crisis--Helping Children With Special Needs.

Please circulate this article to parents and your children's teachers. Scroll below and you will see an email icon that makes it easy to forward to others. You can also post on facebook and to Linked-In.

--Allyson

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Children's Mental Health Fact Sheets

There is so much in the news this week about mental health conditions. I'm concerned that information being disseminated is not coming from informed sources. The Minnesota Association for Children's Mental Health MACMH has a series of fact sheets about common conditions. It's important to learn what we can so that each of us can help break the stigma associated with getting care when it's needed.

FACT SHEETS



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Because of Newtown, Connecticut: Focusing on Mental Health Resources

At this point it is unclear WHY what happened last Friday in Newtown, Connecticut happened. From my own experience and from out of this horrific incident it is clear that we need to make mental health care available, affordable, and accessible.

The focus this week is:

• What are available, affordable, and accessible mental health resources? 
• If someone needs help today where can they go? 
• Who can parents contact to get help for their children?

Please help create a list of resources.

These are on the top of my list.

National Alliance on Mental Illness This is the NAMI organization at the national level.

NAMI Local Click on this to find NAMI offices closest to you.

Beneath this post are the symbols for Facebook, Twitter, and email.  Please share this with everyone you know. PLEASE. I want a thorough list recommended by people who have used these services.--Allyson
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All About Apps

Apps are flooding the market. That's a good thing. Right? Of course it is. Though it can get overwhelming. This is what I do to make identifying apps more manageable.

1. Decide what I am looking for in an app (tend to look for one app at a time to stay focused). 
2. Search itunes and google.
3. Check free apps first.
4. Narrow in on apps with a 4+ rating.
5. Read reviews.
6. Download those I want to try out.
7. Check paid apps.
8. Repeat steps 4-6.
9. Keep checking out new apps till you can't anymore!

These sites are useful to stay on top of what is on the market. Many offer giveaways and freebies! Gotta love that. 

Smart APPS For Kids  Kids apps reviews, giveaways and freebies.

Smart APPS For Kids Top 10 List  Smart Apps Top 10 List

AppAble App advice for the special needs community.

Apps For Special Needs--UK Found this site today. It's a group of parents looking for apps for special needs children.










Another site I like is Apps Coop For Special Needs Population. It's a collaboration of developers, parents, teachers and others to share ideas for apps targeted to the special needs population. I have found this a good place to ask others if they know of apps that I am looking for to match my criteria.

Anyone have other tips on how to pick out apps for themselves and others? Would love to know about facebook pages and websites in other parts of the globe that focus on selecting apps for the special needs population.  Please leave your ideas in the comment box.

--Allyson

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Potential Personified: Carly Fleischmann

A friend this morning sent me a link to a teenager's website, Carly's Voice. I was blown away.

I watched the posted videos and then I wandered over to her facebook page, Carly Fleishman. This is her story.

Everyone should watch, hear, and read what Carly Fleischman has to say.

It's about potential locked inside. Deep inside.

Amazing, rich potential.

My daughter was nonverbal until she was 4 1/2 years old. I could tell she had a lot to say. I could see it in her eyes and through her behavior. She was easily frustrated. Her behavior was an expression of her voice. We had to teach her how to express herself in appropriate ways.

She talks now but still needs extra support to help her with language and also the sensory input that affects her daily. Visual schedules, a time-timer, headphones, fidgits all block out distractions to help her focus.

Carly gives tremendous insight into the life of a teenager with Autism. She shares a rare perspective that is often never heard.

Carly's father's strength and persistence reminds me of Kate Adams Keller, Helen's Keller's mother, who in the 1880's had to make a decision to keep Helen home or send her to an institution. In the movie, The Miracle Worker, Mrs. Keller noted she could see there was something there inside of Helen's eyes. She kept her home and found a private tutor, Anne Sullivan, to teach her how to communicate.

Like Carly's father I can't imagine my child anywhere but home. I feel very grateful that we are figuring it out. --Allyson



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What Do You Want To Achieve With This Blog?

I want to change the world. At least part of it.

That's the response I give when someone asks me, "What exactly do you want to achieve with this blog?"

When I close my eyes I can see myself in a large, open roofed stadium filled with people who I invited to attend. The sky is clear and bright. I hear an airplane soaring overhead.

There are community leaders, employers, doctors, parents, grandparents, aunts and uncles, caretakers, young and adult children, neighbors, friends, lawyers, legislators, school principals, art, speech, physical and occupational therapists, social workers, psychologists, psychiatrists, county workers, special educators, mainstream teachers, writers, educational assistants, clergy, camp directors, and personal care attendants.

They have come from around the world.

As I stand on the field I look up and see thousands of people staring back at me.

I take a deep breath and let the words of my vision slowly spill, word by word, off my tongue.

We are here today to change how we define ability through conversations and stories of advocacy, triumph, and promise.

We are here to listen and honor each others' perspectives through conversations and stories -- personal stories about our life experiences. We are here to listen to and honor stories of advocates who have been vulnerable and courageous to bring about change. We are hear to listen to and honor stories of individuals who triumphed when sometimes not expected to, and we are here to listen and honor stories of promise and potential. Stories that will be told only because we will listen to and honor each other.

There are conversations and stories about challenges and lost dreams, despair and grief, closed minds and obstacles. There are conversations and stories about bravery and new goals, hope and moving forward, inclusive attitudes and open doors.

Each person present commits to this vision and together we create a plan to increase awareness, educate, share ideas, solve complex problems, and bring about historic changes in attitudes, policies, and practices. Each person commits to make this happen in their local communities and in the broader world.

With my eyes still shut tight I see us again five years later gathered again this time to assess what we have accomplished.

We know we have succeeded because words used to describe people like retard, dimwit, moron, lame, slow, imbecile, spazz, spazzy, spastic, disabled, handicapped, cripple, gimp, midget, schizo, and mental have been replaced with words like smart, thoughtful, methodical, sensitive, energetic, cautious, creative, and able.

We know we've succeeded because people are looked at more for what they can do and their potential is discovered. Children and adults get services based on their needs. Individuals who were excluded from are now included in schools, sports, and community activities. Children, once overlooked, get invited over for playdates, birthday parties, and sleepovers. Those who want to attend college get into schools of their choice. Employers look at traits and skills that can be attributed to neurological differences as positive and proactively recruit to bring that diverse thinking into the workforce.

The ice maker in the kitchen startles me and I open my eyes. I glance down at my computer screen.

No. I don't have a stadium but I do have this blog, Seasons of Potential, as the vehicle for these changes

Let's make this vision happen. Together. Here's how we can do it. One step at a time.

• Subscribe to the blog.
• Comment on posts to start the conversation. Check back and see where the conversation has gone. Add to the conversation stream if you have more thoughts
• Share posts with others.
• Encourage others to subscribe to the blog and join the conversation.
• Consider writing a guest post about a topic you find important.
• Recommend an app, a book, a dvd or podcast, a product, store, web-site, blog, and/or facebook page.
• Watch for people who look for the potential in others and let us know about them.
• Model the principles we are asking others to model.
• Listen to and honor other's stories.
• Take action.

And once we are successful we will have changed the world. All of us together. At least part of it.

That's what I want to achieve.

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