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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Favorite Apps

Here are two apps for your ipad or iphone that are just plain fun (and educational). I wonder if all parents with kids who need extra help search for games, toys, and apps that also develop a skill or impart new knowledge. Am I alone in this? Would love to know.

These apps are great for kids during the holidays. They can keep a child occupied waiting in long lines, on an airplane, at a restaurant, or at a relative's house. Some times kids need a break from the holiday intensity. Just wait, you might find yourself taking a break with one of these too!

Don't feel guilty, there is an educational component to each of these.

Where's Perry? ($0.99) When I first bought this app I could not put it down. My excuse was that I had to learn how to do each puzzle so that I could help my 10-year old child with the ones she could not do. She has a stylus to use with her ipad which helps as it is sometimes hard for her to be precise with her finger. This "challenging physics based" app encourages planning and problem-solving. It's so worth the money!

Talking Gina the Giraffe (free) Gina is so cute it's hard to resist talking to her. Once you find out she talks back it's even hard to stop! Gina likes to play patty cake and encourages you to play along with her. This is great for kids who can use extra practice coordinating the right and left sides of their brains. 

What fun (and educational) apps do you suggest? Leave your ideas below. 

Please join the conversation! If you'd like to comment, please leave your remarks below. We welcome different ideas and opinions within the framework of the blog's vision.Please use respectful language. If a comment is considered offensive it will be removed. Not sure how to make a comment? Blogger Help has a nice article on how to do it.
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Affordable Accessibilty

Amos Winter Tests His Leveraged Freedom Chair

Okay. So this is cool. And essential.

Affordable equipment to increase accessibility. In this case a wheelchair. Take eleven minutes and fourteen seconds to watch this Ted Ted Talk.

I would love to know what other groups are creating affordable, accessible equipment and devices.

Join the conversation below if you do know or share your thoughts about this footage.

Ted Talk: Amos Winter

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A Poem For Parents And Caretakers Of Children With Special Needs

This poem is for parents and caretakers who are on a journey with a child who needs extra support. 

One day at a writing retreat we were asked to walk up to a table and with our eyes closed grab a handful of refrigerator poetry magnets. The instructor directed us to write a poem, using the magnets, and connect it to a line we had written at the top of a sheet of paper. 

My heart started to race. I took the magnets to a table and felt as thought the rest of the world disappeared. 

I had been contemplating that day how to write about staying present amidst medical crises, learning new diagnoses, and getting day-to-day help for a child while trying to maintain some level of normalcy. I looked down at the table and this is what lay in front of me.

Sustain profound journey.

Soothe hard wisdom.

Meditate dark doubt.

Create vast breath.

Dazzle velvet magic.

Light porcelain courage.

Blaze naked chaos.

Love brilliant energy.

Bless delicious smile.

Nourish sacred gratitude.

Sustain profound journey.

copyright 2012 Allyson Perling

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Why I Won't Tell You That I Have A Disability

asleep in my arms

Returning from an early morning physical therapy session a few weeks back, I grabbed an ice pack from the freezer for my back, and sat down on the couch next to my youngest son who was home from school with the stomach flu. He offered me the edge of his blanket, and we cuddled.

I told him about some permanent changes the doctor had recommended that morning. I was going to have to quit doing certain activities and modify others to avoid another surgery. It wasn't what I had wanted to hear, and I was feeling grumpy about it.

He wiggled around on the couch to face me and said, “Well Mom, you're going to have to learn some new strategies.” I did a double-take. Yes, it was my 10-year-old offering this suggestion.

I confessed to him that I didn't like the idea of not being able to do something or of needing to ask for help to do things. As a child who has struggled with a reading disability (dyslexia) and attention deficit hyperactivity disorder (ADHD), he understands about needing to ask for help.

“Mom,” he said in a whispery voice, “I don't tell people that I have a disability because then people will treat me different.” He fiddled with the blanket, then continued, “My ADHD, I'll tell, but only to certain people, like family and really close friends. Because they actually understand it. But my dyslexia, I don't tell,” he said.

Not to anyone? I asked.

He shook his head.

His remark surprised me, especially since we moved him to a different school two years ago. He now receives more intensive reading instruction, and is surrounded by positive messages about differences in others.

Was this a problem at his new school? I asked.

“No,” he said, but he felt it was a problem at his old school and was worried it would be everywhere else. His face clouded, he sat up suddenly and said, “If people know you have a disability, they consider you not to be able to do things. Sometimes they don't even let you try.”

At his old school, the library marked his library card with his reading level, and he was prevented from checking out books that school staff thought were too difficult for him. Both at school and at a community activity club, adults jumped in to correct his pronunciation when he read aloud and supplied the correct word if he hesitated. They just said it for me, he complained.

“It's not true that you're not able,” he said. Looking out the window at the stark silhouette of the leafless maple against the sky, he continued, “It just makes it harder for you, and you just have to find strategies to do it.”

His willingness to try strategies (as we call them at our house) has always made me smile. But now a lump formed in my throat as I gathered him back under his blanket. I wished I could protect him from this double difficulty – first with his own neurology and then again with the attitudes of our society.

“I don't even like the word disability,” he asserted. “Disability means you can't do something. And that's not true. I mean everybody has something they can't do. Disability categorizes people in a bad way. I would call it a learning challenge instead.”

I'm not a big fan of the word 'disability' either, but I’ve come to understand that access to services is determined by sorting people into categories. It's a compromise that tries to balance the needs of different groups of people. My son doesn't see it that way.

“I mean, it's not right that you need a label to get services. What if a kid has trouble reading, but not a diagnosis?” he asked. He wanted to know why that kid couldn’t be allowed use audio supports if it made it easier for him?

I bit my tongue to avoid automatically answering with adult rationalizations. In that moment, as we lay on the couch in the weak rays of the late November sun, I wanted him to be able to imagine that a better world could exist. I wanted him to be able to hold that possibility in his heart.

“It makes you think differently about how our country is set up. It's set up for people without learning difficulties. Not for people with them,” he continued with a yawn.

His eyes closed. For a while I thought he'd drifted off to sleep, leaving me in awe at the insight of my 10-year-old son. Then his eyes fluttered open for an instant, and he said, “Maybe learning challenge isn't the right word. Maybe it's a life challenge.”

About Author:

Nora Livesay is a graduate student in linguistics, works as a teaching and research assistant at the University of Minnesota, and is mother to two wonderful boys who face extra challenges in life. Her favorite ways to recharge are knitting, reading science fiction-fantasy and being in nature.

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An Inside View Of the Brain

human brain

The first time I watched Jill Bolte Taylor in this Ted Talk I was SO excited. While the focus was not Agenesis of the Corpus Callosum, one of my child's conditions, Dr. Taylor gives a great description of it. She uses a real human brain to demonstrate how the right and left sides of the brain are completely separate entities and the only thing that connects them together is the corpus callosum.

"The corpus callosum, two cerebral cortexes are completely separate form one other. The two hemispheres do communicate through the corpus callosum which is made up of three hundred million axonal fibers. Other than that the two hemispheres are completely separate," she said in a objective, matter-of-fact tone.

My reaction was not objective or matter-of-fact. It struck me in my gut the same way as when the neurologist first told us, "Your daughter has Agenesis of the Corpus Callsoum."

Those fibers Dr. Taylor discussed they never developed in my daughter's brain. The corpus callosum did not form.

Dr. Taylor's description gave me a better, and more interesting, way to describe Agenesis of the Corpus Callosum to the myriads of people who regularly ask. Even without the ability to demonstrate with a real, human brain. I do pretend I have one in my hands when I describe it. It makes describing this rare condition much more fun!

The second time I watched this Ted Talk, I fell into the rhythm of Dr. Taylor's voice recanting the details the morning she had a stroke. How often is it that a brain scientist has a stroke during their lifetime and is able to articulate in vivid detail what it was like?

Mesmerizing. I was transfixed watching her share this intimate snapshot from her life.



Brain research is a topic I hope to revisit often. This Ted Talk is a good start.

Now--I want to hear from you!

Conversation/Stories

Do you have a story about yourself or someone you know that shares the potential of the brain?

What questions do you have about the brain and human potential as it related to learning and development?

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Awesome App by Mobile Education Store

Awesome Language Skills App!

Last night I walked into my bedroom. Propped up with her ipad in our new king-sized bed was my ten year old, checking out her many apps. When I suggested Tense Builder she willingly opened the app and clicked on a lesson to watch.

Truth be told I have a child who loves to learn. But she learns in a way where traditional classroom methods don't always work. Because of brain, vision, and fine motor conditions she needs the material presented in alternative methods.

The ipad coupled with carefully chosen apps are moving her toward increased independence. Apps we look for are easy for her to manipulate, visually stimulating and have engaging content.

While she did not talk until she was 4-1/2 her love for language is insatiable. When I first introduced Sentence Builder, Conversation Builder, Language Builder, and Story Builder apps to her this summer she chose them over all of her others apps. This went on for weeks. She did the lessons and practiced the concepts. When she started fifth grade at a new school in August I could see the difference in the way she communicated with teachers and students.

Even so I wondered if she would be able to grasp the concepts in Tense Builder.

Silly me. She's had it for two weeks. I watch her eyes when she stops mid-sentence and rethinks what she just said. Then, typically with a question mark at the end of the sentence, she changes the tense and looks to me for approval. When I beam in response she knows she's figured it out.

Last night while I was typing I heard her say, "That's future tense." It was heartwarming to watch her go from timid to brave when she pressed the "play" button. It's an added bonus that she is able to practice her speech articulation.

Now I can't wait to install Conversation Builder for Teens.

Thank you Mobile Apps--keep them coming!-- Allyson

Favorite Features of Tensebuilder

• Visually stimulating and engaging animation
• Large print and nice contrast for those with visual limitations
• Settings: regular and irregular verbs; past, present, and future; levels 1 and 2
• Easy to understand speakers
• Performance report that teachers can use at school 
• Recording feature

What I Would Like

• Ability to increase text size 

Check out all of the products at Mobile Apps Store

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Gratitude

I wrote this poem when my ten year old was four to thank her doctors, teachers, physical, speech and occupational therapists, audiologists, teachers, educational assistants, school administrators, psychologists, social workers, personal care attendants, inclusion directors, camp counselors, clergy, child life specialists, nurses, receptionists, med techs and our friends and family who look at her and see her potential.

Today I'd like to share it with you.--Allyson

Seeing All There Is To See

Thank you for looking at our daughter and seeing all there is to see…
The smiles, the laughs, the curious glance, the memory of where the lollipops are kept.
Thank you for looking at our daughter and seeing her love for each and every human being,
her silly grin, her inquisitiveness, her understanding of what you say and how you’re feeling.
Thank you for seeing that her skills have improved and how much she has grown,
her ability to communicate and get her point across and to get you to respond.
Thank you for seeing and appreciating each behavior as it positively changes,
Her presence in the world, her gifts overriding each of many challenges.

Thank you for looking at our daughter and realizing we might need some help from you…
Identifying, researching and advocating for her as identified and needed.
Thank you for realizing that though we are her parents we aren’t experts on her conditions.
We didn’t start off knowing how to implement each doctor’s and therapist’s home renditions.
Thank you for realizing we need patience while we learn what it is that will help her flourish,
That each day can be filled with triumphs and defeats and words you say can nourish.
Thank you for realizing the amount of dedication we place in her personal development,
And that listening to our knowledge and intuition can play a role in her comportment.

Thank you for understanding the power of each of your attitudes and actions…
Never underestimating the impact of how you interact and what you communicate.
Thank you for understanding that your words to her and to us can make a difference,
How you say hello, that kind redirection, taking time to converse making connections,
Thank you for understanding that her thriving in this world will take extra focus and courage,
Along her path she will need ideas, hugs, humor, and words to encourage.
Thank you for understanding that support not pity sustains us as we maintain focus,
While this is not the direction we would have chosen her steps with us are blessed.

Thank you for looking at our daughter and seeing all there is to see…
The hopes, the dreams, the promises of all that she can and will achieve.
Thank you for looking at our daughter and never giving up, never showing doubt,
always looking, always searching for a way to bring her strengths from inside out.
Thank you for looking at reconnecting paths where none before existed,
Always searching for and trying different routes with gentle persistence.
Thank you for looking at our daughter and seeing all there is to see,

A little girl engaging the world with heartfelt possibility.                            

Copyright 2012 by Allyson Perling

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Why Cure Pity?

I stumbled across this link http://curepity.org/why-cure-pity/ yesterday when I was browsing through Gillette Children's Specialty Healthcare's website. Our youngest child often frequented Gillette's specialists when she was young.

The CurePity pledge struck such a cord within me that I sat motionless on our couch while memories of people pitying us flooded my mind. It was the sentiment that drained me most when I had to get my children the help they needed.

Children don't need pity (nor do their parents). They thrive with support, engagement, access to excellent medical care, appropriate adaptations and inclusion in their schools and communities.

Take a moment to sign the pledge and check out the website at http://curepity.org/why-cure-pity/. --Allyson

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Toys For Kids With Specific or Special Needs

When my youngest was a baby we observed a red flag--she lacked interest in toys. We had no clue yet that she had limited fine motor skills. Once she started occupational therapy at nine months old we began the search for toys that she could manipulate and that would provide her with stimulation.

This was not easy. I kept trying toys my other children liked. Nothing interested her.

But then she had an elongated stay in the hospital over the holidays. The unit had gifts for all of the children. After spending a considerable amount of time hanging out with our little girl, the child life specialist handed her a brightly wrapped present.

I feigned my optimism when I said, "What a perfect gift!" I tried not to insult her kind gesture, but I was discouraged.

Sitting on the edge of the hospital bed my husband carefully unwrapped the paper as I liked to recycle it for art projects if possible. Inside was a simple Little Tikes toy. It had a screwdriver, a saw and a hammer. If you turned a knob a certain way it made noises. Loud noises. The kind I normally detested. They did not bother me so much this time.

And then there was a second gift--a flashlight in the shape of a lion. Each time you turned it on it roared! It was louder than the first. There was no off switch.


I watched my daughter most of that afternoon trying to make the sounds of both of those toys go off. Late that same day I thanked the child life specialist and told her those were the first toys my daughter had any interest in. She went over to a table and picked up a brochure titled, "Toys R Us, toy guide for differently-abled kids," http://www.toysrus.com/shop/index.jsp?categoryId=3261681. I clenched on to it tightly.

During a quiet moment, I flipped through the pages of the catalog. At a time of desperation I felt as though someone had opened up a window and allowed in fresh, crisp air. We were trying so hard to find a diagnosis and help our child grow and develop. In an odd sort of way this retail catalog offered hope.

Since that time there are more catalogs, websites, and stores that reach out to children with special needs. Here are some that I use and others that I plan to soon.

http://www.autismshop.com/ One of my favorite stores to buy fidgets. They have an extensive offering of books that I have seen on Autism and related topics. This was the place I went when I bought our first Time Timer and supplies to make visual schedules. I also found little tins of Crazy Aaron's Thinking Putty which I use as gifts.

http://www.creativekidstuff.com/autism.html Creative Kidstuff is one of my favorite toy stores of all time. The staff are helpful in trying to find a perfect gift for any child no matter what their physical abilities are or are not. For years the manager at the store closest to our house became my consultant in toy buying. Now I see that they have partnered with St. David's Center-Child & Family Development http://www.stdavidscenter.org/ to create guidelines for toy buying for children with special needs. Awesome! I'm actually proud of Creative Kidstuff.

http://sensoryuniversity.com/main.sc This site is new to me, but I can't wait to see what I can find in their catalog for my 10 and 15 year olds. My older daughter can benefit from items to help her posture and for focusing. They have some items here that I have not seen before! When you enter their website they have their products listed on the right hand side. I find this as an easy to read and well laid out directory to use.

http://www.onestepahead.com/custserv/shop_smarter_article.jsp?pageName=Best_Toys This site offers a nice explanation of developmental areas to focus on for ages birth to 36 months. I struggled a bit with the use of the term "best." I suggest focusing on what the suggested learning is like "goal oriented and problem solving play" instead. Great resource.

http://www.specialneedstoys.com/usa/ This is also a new site to me and can't wait to look more thoughtfully. I love that they have some adaptive gardening supplies. I see this in my 10 year old's future http://www.specialneedstoys.com/usa/gardening/1895-radius-garden-set.html. I like that they have a "teenage/adult" section. While some of their items are meant for clinics--you can tell by the cost--they do have a range of affordable items for home use.

Those experiences with the child life specialist during that difficult hospital stay gave me new energy to keep looking for toys that were enticing and fun. It still wasn't easy. But for her birthday that same year I found bristle blocks. We didn't really need other toys--at least for a few years!

If you have any other products, stores, or websites you frequent let us know!--Allyson

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