jen and her gurus
PS. the volume is low...so you may need to turn it up to hear me.;)
One of the most challenging and surprising weeks in our lives as a family. Many many many things I am juggling this week to re-invent the wheel for our family and for all of you. I will be sure to elaborate soon. Love to all of those spectacular people, friends. and doctors who keep on living big and making change for our Guru V families. Another day, another adventure and we still have hope and energy. Life is truly precious and invigorating.
jen and her gurus
PS. the volume is low...so you may need to turn it up to hear me.;)
This doctor and hospital were recommended to us by our very dear friends and team at UMass Medical in Worcester, MA. After having a very challenging few weeks with Jus and a series of unpredictable behaviours, the final blow literally came about and now we are reshuffling the family priorities.
Please listen and feel comforted by Dr. Sachs' talk, and also question any doctor that quotes factual medical treatment for autism. The fact is, we still know very very very little about autism, its causes and effective treatment. Even those who have studied it for years are just breaking open the egg. Hang in there families. Hope our story keeps you hopeful and our trailblazing gives you more options.
Thank You to our loving caregivers, our caseworker, David, Donna at the ARC, Lee at Family Resources for Autism, all of our friends and professional family who help by listening and loving our family. Thank you to Dr. Charlot, Dr. Frazier, Dr. Bryan King and Dr. McGuire for your endless work and for believing me. This particular step is one of the most difficult one we have endured to date.
Thank you Bri and Jus for your love and inspriration...you are my babies forever. I wish I could do more.
Neuro-endomorphosis nerd mom here with a million zillion facts and links that interconnect with autism
If you love reading about neuro-endocrinology like I do, even though you are years away from a medical degree, but eons closer than most poor people you know who are forced to sit through your endless, meaningless chatter about all of the many interelated neurons and neurotransmitters and how neurotoxins are affecting the pituitary (which they may not even know existed outside of an olive before you tortured them with these facts) and how exciting it all is...well...you have found a friend. Those of you who don't dive into this subject with rigor may want to skip this blog post. Those of you who do...know that I am like many who love this subject: equally as intrigued as I am confused. Connecting the dots is what we aim to do. Join me for a fun game of connect the dots...bring your dry erase marker and some tortilla chips. This may take forever.
Puberty...testosterone...GABA...Melatonin...Growth hormone...psychosis...aggression...hypersexual behaviours...secretin...autism...what are the connections?
Are there any? or many?
Here is what I found today.
I call it the gluten to gut hormone with evolutionary biology folks taking note.
depolarization and hyperpolarization...are they from the same hormonal release? like the pancreas hyperreacts to sugar in the blood and *over-insulinates, causing a crash.
*my own pretend medical term meaning to over-produce insulin
think this is an ad, but good basis for understanding both GABA and Melatonin
a great resource for NP autism treatment using all of the above.
Wow. topics galore.
That was fun. Connect your own dots and write a comment to let me know what you came up with.
Endo zen jen signing out
This week I have attempted to play with the beginner communication apps that are meant to teach basic touch screen skills for communication purposes and I have not had that much luck. Perhaps some of you out there have more basic knowledge or skills. If so, please comment if you disagree or have a better experience with the following two apps.
As you may know, Jus (my teenage, nonverbal son) uses proloquo2go for his AT app with the iPod. This app is not extremely user friendly and does not have custom voice, which is greatly needed due to the mispronunciation of many words. Custom Voice would also help those who are beginning with the ITM system I designed because initially we start with All Caps and work into the lowercase, because the keyboard is in all caps. One funny example of the all cap mispronunciation is a time when Jus typed in HI BRIANNA (his sister) and the iPod said, "Hawaii Brianna." Get it? HI is the abbreviation for Hawaii. We had a good laugh and custom voice would have been nice there.
Although this was not ideal, Proloquo2go is the best, most diverse app out there for communication w/the iPod and now for the iPad.
It does require extensive re-ordering, deleting, editing, adding, subtracting and double checking in order to set it up for Jus or any individual due to it's incongruency in the image vs. item area, category scatergory, and its limited vocabulary list.. For example, more is represented by a picture of several cubes, rather than the ASL sign for more. Many multimodal teaching methods use both ASL and Signing Exact English as a base and partner for PECS and other classroom teaching methods. The great thing is that you can replace the image with your own image (once you learn how to do that). The list of words has many cartoon images of celebrities, but lacks many basic words like string, which is in the vocabulary of many of our ASD kids who love to spin it.
Well, this was not meant to be a critique of proloquo2go, but there is some basic info about it. I am available to help program or set up your initial use of this app if you need it. I wish I would have had me now back then. Does that make sense? Anyhoo, the app took me a good three months to understand, and we have lost it all several times which meant hours and hours of reprogramming, and some I could not remember, which was hard on Jus and our progress.
If you do purchase Proloquo2go, it is about 189.99 and I believe this includes all devices you own, so that you can have the iPod and iPad match and you can have a backup device, which I STRONGLY recommend.
On to the other two I have played with this week:
Both are meant to be beginner touch talk and schedule apps, but neither are user friendly and some of the items on their menu fail to work. When starting any person on the iPod/iPad for communication, it is essential to have your ducks in a row and not have the trainer or educator fumbling over the editing during teaching moments...which in communication should be every moment. These apps are either free or very inexpensive and I would not recommend either one right now, although in theory, they are wonderful additions to the Proloquo2go and ITM. Perhaps some of you have a different experience. If so, please share and educate me and the readers. I was very excited about these when I found them. Would love to know any secrets you may have to their success.
That is my two cents on apps.
Be Well and have a wonderful week.
A very busy week and a wonderful visit from friends Jaima and Virginia. There are three vids because I am random, low tech and ME!!! A total of about twenty guru v minutes on the three videos...we covered topics like schools, stories, care, education, community, challenging moments, how to help families like ours, friends and LOVE!! Hope you are feelin' Guru V!!
Days like yesterday bring new meaning to the phrase, 'a brand new day!' My world is full of do-overs because teaching, parenting and loving in this wonderfully exciting autism adventure is hard core. My daughter has resistance to change and new ideas which makes completing some social and academic tasks like pulling teeth. She can dig her heals in soooo hard that negotiating any solution can be maddening.
My son, who is the size of an NFL linebacker at 14, tends to have unpredictable and severe mood swings that can cause him to panic, run and a few times he has broken thru things like a door frame, and a full length window. Scary is an understatement. Resistance is a constant and exhaustion is a given. But as I stated before, we get up, well up more than enough energy, love and forgiveness to start again with the hope that we can conquer all...or at least endure the next set of challenges.
Please hug your family, friends and even strangers today. You never know what they endured yesterday.
Happy Peek 'o' the week!
PS. They still look like sunshine and profoundness to me.
Love is powerful stuff.
Hello everyone. I realize today is Monday and I intended to have my reviews available by Sundays. This entry should prove worth the wait. The apps I have chosen today are jus's absolute favorites and I think they are both engaging, clear and very reasonably priced.
We have been using more advanced apps as well for academics, but these are great for basic memorization and cause/effect touch screen saavy.
This app is colorful, creative FUN and clear. And fish are the BEST idea to engage our Fishies. When you touch the letter, it changes by having fish swim in and make the formation of the letter. Next to the fishy letter are the upper and lower case typed letters to clarify shape and help with generalization. I like that the app speaks the letter, shape or color as it enters the screen because this is very muli-modal. Verbal directions are few, but very concise. There are a few games like match or find the fish that doesn't belong. This verbage was the only drawback. Perhaps 'that is a different color' could have been more precise, because ALL fish belong in the sea. And we Autism Adventurers are especially sensitive to the language of inclusion. Aside from that, the app is amazing. The alphabet, colors, shapes, words and all sorts of hidden fun fishy interactions on each page if you touch everything on each page...even the little fish eggs at the beginning.
Benes - It is a Gold Mine of engagement with purpose.
Price - 1.99
This one won best iPod kid's app of the year!! We love it. Each bright letter is accompanied by an interactive game associated with the letter and word that begins with the letter. For instance, O is for Olive then lets the child touch the screen over and over and over and with each touch a new olive (3 diff, kinds) layers itself over the other wherever the child touches. Great cause/effect and very fun visual. Also great for directional engagement. The teacher could say, "Oh, I am going to put an olive on the right side of the screen. Watch. My turn." Then after taking their turn, engage the student by saying, "I want you to try putting an olive on the left side like this...watch me...my turn (go)...then 'your turn." There are many ways to engage and play with this app. Remember to engage in 'interactive human play' as well in order to reinforce the communication aspect of the app. Verbalize clearly and allow for some amount of repetition and nonregulated time as well.
Benes - INTERACTION, ENGAGEMENT, CREATIVITY AND PRICE
Price - .99 cents!!
HAVE FUN PLAYING AND COMMUNICATING. HOPE THIS HELPS.
As a person who has spent her entire life focused on social change, I sit here on the birthday of one of my most revered social justice activists and think, "How far have we come?" All platforms have basically been the same for social changemakers for centuries: Love, love, and more love. Listen to the sacred music and the poetry from every era and every religion. The teaching of love and acceptance is not a new concept, so why have we still not grasped this equation? Why are war, separation and fear prevalent?
The questions I pose daily are ones that I already know the answers to, yet my life continues to reflect both sides of the coin. I do know that the more aware I become, the more love I am able to add to my life and in turn to the energy I send out to the universe. The more love I focus on rather than the internal pains, hardships of life, and the monsterous dischord in the human race, the more I feel there is hope. Love is a magical tool, as is forgiveness. The joy, pain, intensity, fulfillment, and surprise of the moment is a gift and how we live each of those moments affects the rest of them.
I look at Dr. King and the peace marches he braved. His life was less than ideal by anyone's standards. NOT BEING ALLOWED TO DRINK FROM THE SAME FOUNTAINS BECAUSE OF THE COLOR OF HIS SKIN? Can any of us really imagine that? As an educated and compassionate person, he knew deep within him that this was not a representation of love. His years of observation, education and teachings on love, culminated into one passion for justice and social change. This mission was not new, nor were the words he shared. His passion led to action and the momentum picked up because people know what love is. We know what love looks like, what kindness creates and when they are or are not present. This truth dwells within us all, regardless of who or what we give credit to for creating it. LOVE...IS BEAUTIFUL AND REAL. We all can agree on this.
Being busy, overwhelmed, mistreated or bound by laws are circumstances, outside forces, reactions and excuses to ignore the inside force of love. LOVE is not a new message. I believe we are all made up of love that radiates through the universe. We are social changemakers, whether we consciously enter that roll like Dr. King did, or whether we passively float through life ignoring or even discounting the power of love as a change agent.
I am grateful for the many gurus and visionaries who have focused on love and social change. They inspire me to love even when faced with discrimination, manipulation, isolation and fear. The four items I previously mentioned are agents of separation and separation is the oppossite of love.
Connection. When I focus on connection, love, forgiveness and the exact moment I am living, I tend to do things differently than when I glide on autopilot. I am usually less pleased with the outcome of my moments when I coast thru. My life with the gurus is far from ideal, but others in this world have far more hardship than I can even imagine. I choose to love my life and that creates an entirely different experience than when I sink into self pity, loneliness, chaos or fear. When I focus on the latter I feel defeated and out of control. Yes. Those moments come and go, but the love sustains me and inspires others. What an awesome concept!!
This universal law is better than anything I could have thought up on my own. There are forces, spirits, wavelengths and frequencies for every experience and our reactions to them; As many great leaders have stated, the greatest and most powerful of these is love. In our Western culture and around the world, Love has many frequencies, all of them productive, charged and based in connection, like the cells of our body, the planets in our solar system the ecosystems on our planet...ALL THRIVE ON LOVE.
We are connected. What an exciting concept. Love...The ultimate power trip that transports life to a paradoxal version of itself.
Thank you Dr. King for offering your leadership to a change you knew had to take place. I am grateful and deeply saddened that your life was cut short, as many lives have been for this cause. LOVE...it is within us all. Innaction is not love. Action is easy. Try it and see. Spread this message to every molecule of the universe. Take action. Worst case scenario, you change the world. Best case scenario, you still change the world. Change it to love. LOVE LOVE LOVE LOVE.
Happy 'act on love' day in honor of Dr. King and those who have risked thier lives for love. Imagine and awake to the reality that no one's dream has to be at the expense of another's. When we truly listen to LOVE and act on it, there is room for everyone to live in harmony...that is true FREEDOM.
This week's Guru V minute covers a variety of topics. Like talking to Zen Jen, the flow and frequencies change with the wind. The Guru V life is always in a constant stage of ebb and flow. Staying 'in the moment' and being passionate are what make this Guru V family survive. Hang out with Zen Jen and her gurus every Friday for a minute or two or ten of feelin' Guru V. Exciting moments from their lives, innovative ideas and guru v teaching laughs included for FREE! Laugh out loud at the random Guru V -ness!!
A mom with passion, action and an inclusion revolution on her mind shares moments, mantras & wisdom gained from her autism adventures. A single mama of two children on the spectrum, whom she considers
Guru V People
Please know that I am a poet and a scientist...so how I deal with discomfort is I ask questions, I manipulate words and rhythms and I dance around issues that I feel strongly about. When I use the word dance, please know that I am no ballerina...I prefer sharp, awkward maneuvers that express my passion. So when I dance around issues, there is no guessing how I feel about them...take nothing personal but please