We Published Our First Unique Adult Speech Therapy Book!!

Yay! We have finally published our first unique adult speech therapy book - and it is so, so beautiful and professional (thanks Marilyn)!

I am particularly excited because as far as I know (and if you know different I would love to hear from you and perhaps we can help each other?...) this is the first speech therapy book - "What I Mean Is..." - for higher functioning adults with language challenges.

I'm so excited I don't know where to start!

• I want to tell you about the book itself...
  
• And about how it was written...
  
• About how it can be used...
• And about how quickly and 100% safely you can order it online...

I guess I'll start at the end... Which some would say is typical of me! I wanted to check out the company - www.Lulu.com - that's fulfilling the orders for the book for us and make sure they really are 100% reliable and that your credit card details are totally safe. I have been blown away by their integrity and professionalism - I'm delighted to say... Ordering the book was easy and quick and just over a week later (they sent me 2 emails meantime to let me know where they were in the fulfillment process) I received my book. As you can see it arrived in a cardboard package, firmly sealed inside in a protective bubble. Quick, easy, safe, guaranteed professional in every way...

This book can be used directly by clients with some help from either their own speech therapist, an occupational therapist or other rehabilitation therapist, a nurse or caregiver... If you or a loved one have suffered a stroke, chemobrain or another brain injury and need help expressing yourself fully and with ease, this book is for you. This book works best when there is a non-injured person working with the client - although I admit that I worked on parts of this book in the waiting room with the other brain injured patients in my group!

Hilary Dibben wrote "What I Mean Is" because there was no text book or workbook (other than for young kids) out there to help the thousands of us who can speak... But who are unable to express themselves in a way that is satisfying and meaningful to them. The technical name for us (I am part of this group) is the "higher functioning speech impaired" and we fall through the cracks when it comes to our need for therapy. Yes we can form words and ask for our basic needs. But we can't fully express all the thoughts in our minds. With help we can get better and there is hope that we can live as fully as we did before. We need to re-file and thousands of bits of information that have been exploded everywhere by our brain injuries. This book is the answer we've been waiting for.

"What I Mean Is..." started out as a collection of worksheets and gradually grew from there. The development of this book was completely in step with

• the needs of the client and
• what worked.
  

Simple but brilliant. The perfect book for me, the client - and it works.

I love this book! It's the one - or the contents are similar anyway - as the one I used myself in neuropsych-rehab at my local hospital. I had no idea that I had need of language therapy - I knew deep down that I had difficulties... But everyone else seemed to think I was 'good enough' and I was very happy not to rock the boat and have to admit that, in fact, I was not OK... Before this round of rehab no-one had every suggested that I seek out speech therapy. However as speech therapy was part of this neuropsych-rehab package - and not wanting to miss any potential improvements - I went to my first session with Hilary. Amazing! I had no idea and it was my brain... Here was a woman who knew what was going on inside my head when even I didn't!

The exercises here in "What I Mean Is..." seem simple. In reality they are very powerful. I've always been able to write my thoughts down... Now I can speak my thoughts too. And the best thing of all is that I can now see clearly what my difficulties are - which is the first step to healing and real improvement. Now I know what it is I need to re-learn. And how to do it.

Words and language is such an incredibly important part of 'me'... Thank you Hilary.

The Pitfalls of "Playing it Safe"

A Guest Blog

- by the Juggling Librarian...

The past past few years have been a roller-coaster ride for me. I was a normal, healthy, active student at university, studying fine arts and just discovering my strengths and femininity when a mysterious spinal cord infection hit. Suddenly I was plunged into a world of hospitals, wheelchairs, physiotherapists and neurologists.

I have a neuromuscular condition that causes severe weakness in my arms and legs. Since 2003, my limbs have become progressively weaker - to the point of near paralysis. After several rounds of intensive spinal cord rehabilitation, I learned how to walk again, despite a prognosis of never being able to do so. I continue to have ups and downs - periods where I cannot balance my weight and sometimes fall. These relapses often occur when I overextend myself - when I push myself too hard through work and exercise - or when my immune system is weakened with a virus or infection.

It is frightening not knowing when my legs will fail me. It seems reasonable to play it safe, and avoid situations that pose a risk to my health. Doctors and other health care professionals have encouraged me to stay at home and apply for disability benefits. It is tempting to heed this advice and avoid work and other activities that may compromise my physical health.

But that's not who I am. I am a risk-taker and constantly resist definitions of myself as a disabled individual. I am also stubbornly independent and strive to live a full and productive life despite my limitations. After losing the ability to walk, I went back to school and obtained a Masters degree. While undergoing rehabilitation for my legs, I continued to take graduate courses in library science - still allowing me to use my artistic abilities but a great and very sensible choice for a disability such as my own. After graduation, I moved to a new city and started working full-time in a job that I love. In my spare time, I attend ball and pilates classes - and help with ReBuildingYou. I am accomplished in my professional and personal life because I push myself.

After living with a neurological disorder for six years, I still haven't found the balance between playing it safe and engaging in the activities that I love. Sometimes it's a struggle making it to work, and walking through the building to my office. At the end of the day, I'm usually at the point of collapse - my legs stop working, and I require assistance with the simplest of tasks. Fortunately my reserve of energy is replenished after a good night's sleep!

Sometimes I wonder if overextending myself is self-destructive. Why do I feel compelled to to this? I constantly test the limits of my abilities by pushing myself to do more and more. I learned this strategy in spinal cord rehab (aka bootcamp), where the physiotherapists and occupational therapists worked my muscles to the point of exhaustion. I learned that a small degree of discomfort and pain is sometimes necessary to improve muscle strength and endurance.

At the same time, I understand the importance of nurturing myself. Hot baths, heating pads, and plenty of rest help to replenish my energy reserves. Every morning, afternoon, and evening, I close my eyes and consciously "check-in" with my body. If I push myself too much, my body will give me not-so-subtle cues to let me know that I have reached my limit. My legs become flaccid - like noodles - and the wall becomes my best friend.

As a person with a disability, I have discovered that the key to living a full and productive life is to frequently test my boundaries. I haven't yet learned how to strike a balance between maintaining physical health and engaging in work and play. My condition fluctuates over time, making it difficult to predict how my body will respond to different activities.

Testing my boundaries and not 'playing it safe' actually helps me and is an integral part of my rehabilitation because if I didn't do that, my limits - the imaginary safe-zone bubble that we all have around us - would continually shrink, day by day. I would achieve less and less and that would be contrary to living as full and productive life as possible... Which is something that everybody of every age deserves to try, regardless of ability.

Seasons of Emotional Pain followed by Amazing Joy

Seasons of Emotional Pain followed by Amazing Joy

With Valentines Day and talk of love, the last few days have been a time of difficult reflection for me. Several people I love very much are going through transitions in their lives - perhaps transformations. Particularly because I love them, I can't help but feel their pain. I was looking for a way to give them a little hope when I realized that no good friend - and certainly not a counsellor - can do that better than just by 'being there'. Quietly standing by their side while they experience what may well be a whole season of excruciating emotional pain.

Just love them and be there. Not an easy task...

Seems life is a bit like a series of seasons - which I know has been said so often it's almost a cliche... But, please don't surf away from this page yet. Hear me out... Could there be a bright side to the emotional pain you're in right now? I have a thought...

Spring is a time of birth and all things 'new' - and can (maybe 'should'?) last until your teens... Then, in an ideal world, an exciting summer proves beyond all reasonable doubt that life is just wonderful. Of course, this would be followed by a gentle fall with amazing colours and a sort of 'dormant' period of frozen winter relieved by some cheerful holidays. What a perfect life that would be...

Of course you've probably found out by now that life is rarely perfect... Rather than one life equalling one year of four seasons, you may experience several 'years' in one lifetime? And of course we never know in advance how our time will be paid out...

I'm not a fan of fall or winter but, in my stubborn experience, fighting it makes it seem more miserable and longer. Go with it: prepare for it: refasten the shutters when they blow open: ride it out. Wrap up warmly and snuggle in front of the fire with a hot chocolate - after shoveling the drive and stacking the firewood - and wait for spring which will come.

I have observed the same pattern applying with people's lives and I would be very interested to hear your story? A tough, unpleasant experience - which can last for months or even years - is followed by a beautiful spring, which is ever more fantastic with real self-growth. Followed by another summer. To bask in - and reflect on - that growth. Hmmm...

A reward that can make stormy weather worthwhile? I wonder. (I never felt that way at the time, that's for sure!)

Often the first fall is a real showstopper - a life changing illness or life event, perhaps? Sometimes people never really recover from their trauma. Or they might recover enough from the fall to get to the winter. And then spend their whole life in a relatively cold, dark place, afraid to take another step further, just in case they unleash the fury they've experienced before. They may experience the occasional winter storm but never again do they experience the warmth and joy of another spring and summer. Unless...

If you can find it in you to accept the fall (not your prognosis). Prepare and address the winter... If you can bear to hang on and really 'be' with whatever experiences you've had, then the next spring could be even more wonderful. And just imagine how beautiful that summer would be?

And if you're unlucky - or lucky? - enough to have to suffer through yet another fall and winter, I believe the following springs and summers are progressively breathtaking. This is what I've observed and I must admit I find myself almost embracing it.

Of course there are spring and summer storms too. Usually shorter. And warmer and lighter. Not lasting so long. Short and dramatic.

The second (and third?) springs and summers are there, ready to reward you for enduring painful autumns and hard winters. Wonderful, beyond description. Waiting for you to be able to trust and tolerate, explore and 'be with' your experience. When you're ready. At any time. It's never too late to transform an unspeakable fall into a beautiful spring.

Warmer, 'new', kinder seasons, just waiting to soothe your soul and heal your bruises.

With all these thoughts raging in my mind, I head to the beach. It's a cold day with a biting wind with tiny frozen haildust blowing in over a choppy sea. My dog looks at me as though I have finally lost my grip on reality, that I would walk in this weather? But I need to touch my wisdom tree and run my hand over her gnarls and black, almost fossilized, bark. She is my wise mentor who was wrenched out of the earth and blown violently down towards the sea... She hung on and hung on, eventually digging in, sprouting new roots and reaching toward the sun.

Never again will this tree stand in quite the same (vertical) way but she is magnificent in her new horizontal position. There are birds, busy hatching up among her leaves. New life and buds on her branches. I feel immediate peace and a kind of stillness when I stand under her canopy with my hand running over her bough.

Fall and winter only enhance her well weathered beauty now.

Getting to that 'good place' can be anything but easy...

Sometimes you see babies on TV whose faces look old and burdened and aged beyond their months or years. Trauma and hard times befell these tiny souls too soon. These are the precious babies who survive droughts and are left over from wars and only a mega-dose of love and nurturing can hope to restore these little lives.

On the other hand, I know the nicest older couple, who met whilst they were in their first Spring. I delight in reminiscing with them. Their life has been a long and beautiful first summer. With the odd summer storm. They walk the beach, daily, hand in hand. Life is still an Indian summer for them and I pray that it will go on endlessly.

For myself, my first spring was fair. I was healthy and strong, ready for a summer full of electric storms, longer and more dramatic than some. My first fall was stormy and colder than I expected. Winter was long and deep - in fact I had moved to Canada and my psyche, not realizing that all of Canada is not equally frozen, dug in and hibernated!

My second spring was a spring that can only be experienced in the far north, where the ice remains right up 'till summer. Summer was short. Very beautiful but short. During my second fall, my emotions were still living in Northern Canada, unaware that my body was slowly moving south. Eventually they caught up. Winter was shorter, despite the terrible fall, although there was one particularly nasty storm. My third spring is happening as we speak and is gentle and more lovely than I can describe, marred only by the feeling that I somehow need to fill every moment and cram in all that I missed while I was hibernating for years. I'm dealing with that illusion...

I never stop marveling at how life is experienced so differently by every one of us. And at how I can never guess what that experience might have been for someone until I truly listen to them.

My conclusion isn't really a conclusion... In that it's fluid and still evolving. Right now it seems to me as if there is no 'right way' - or wrong way - for life to be?

If you are incredibly lucky you could live your entire life in a first Spring and Summer. Or a 'textbook life' may follow the seasons of just one year? But in no way is any one way usual or 'normal'... I don't think there is a 'normal'?

Depending on what fate has planned for you, one thing seems certain: for every hard fall and winter you endure, the following spring and summer are ever more wonderful. They can be... If you let them. If you can bring yourself to trust... And, of couse, fall colours can be magnificently beautiful, followed by a crisp, clear winter.

As a mother I'm torn, wishing for a carefree and sunny life for my children. I cannot bear the idea - or reality - of them being in emotional pain. I hurt for them. I have to try and hold back because my instinct is to rush in and smother and give advice! I also find myself wishing for them the natural prize of sharper focus and deeper love that seems to follow a trauma well healed? More and more I see weathering storms as 'worthwhile'. I wonder what other ways there are to real personal growth? There must be other ways? If you have stories I would greatly value hearing them...

My heartfelt wish for all those in emotional pain - particularly those I love - is to hang on tight. Ride this violent roller coaster and know that it will come to a stop, eventually. Trust, deep in your soul, that the most beautiful spring and summer you can imagine are just around the corner. And know that those who love you, including me, are here whenever you need a hug.

You're right when you shout that you will never love this way again. Never...

First there is a tender young plant. Often just one bud. Which sometimes, very sadly, dies. And at that point the plant does look very bare. Winter can be long and hard - and often the best thing to do is to put your tender plant in a safe, dark place to rest and recover its strength. When the spring comes - and it will - new growth and new buds and a thicker, healthier plant will be there. A new 'you'. This is my experience.

With the warmest love,

Julie

Our Little Miracle and The Power of Love

The world is blessed by the wonderful diversity of our brothers and sisters and this month there is a unique concert being held in Victoria, British Columbia, Canada to celebrate that love... On Valentine's Day! Come and join us at the Banquet of Love. I would love to see you there!

There seems to be nothing that love, genuine love, can't overcome - not a war, not racial tension, not unemployment and not embracing a new life changed by trauma, but still wonderful... Please extend a loving hand to friends and neighbours, especially those adjusting to trauma, when their need for us is so much greater...

This moving true-life story was written especially for ReBuildingYou by a dad. Not just any dad but a father who is one of the gentlest, kindest men. Like many men, this man keeps his feelings and emotions hidden deep in his soul and I'm touched and very grateful that he would be willing to share his story. A story that could well save one or two of the thousands of marriages and families that are overwhelmed every year by the demands and shock of physical and emotional trauma and the 'special needs demands' life sometimes asks of us.

Trauma has the emotions of veterans tied in knots - survivors and family and friends. Often so tightly that we fail to see the joyous parts of our lives - which are there despite the trauma we're reeling from... And the many, varied and beautiful gifts that diversity of every kind can bring... If we surrender to our circumstances, however awful they may seem, the richness of life can enter and soothe us and ease the difficulty. The world is blessed by the wonderful diversity of our brothers and sisters - people of different colour, sex, lifestyle choice, age, disability or any other 'difference' - and this week there is a unique concert being held in Victoria, British Columbia, Canada to celebrate that love... On Valentine's Day! Come and join us at the Banquet of Love. We would love to see you there! Julie

Our Little Miracle

by this week's guest blogger

In the beginning there was a dream, a dream of a happy, ordinary family with love, joy, birthday parties, Christmas’……… well happiness. You plan a family together and think how perfectly simple it will be. That is not always the case.

My partner and I enjoyed life; we travelled for many years and lived life the way we wanted to, at the time. At some point we decided to settle down and start a family. So, we planned. We first got the home, worked hard, so the mortgage would be manageable for me, while my wife stayed at home with our children. Rather old fashioned concept but that’s what we wanted.

When all the pieces were in place, a nice home, steady job etc. we tried for a baby. After 12 weeks of knowing my wife was pregnant the unimaginable happened. My wife had a miscarriage. We were both devastated but tried again………and again…..and again. All in all, a total of six miscarriages. Six babies lost, six tiny lives never to be lived. We were devastated. Tests were done; no reasons for this to happen were detected.

I had given up hope, my wife never did. Then one day she was pregnant again. I was in dread of what I thought would happen. As time drew toward the twelfth week, the time that the other babies had miscarried we were nervous wrecks. But things progressed along normally, the odd concern as the pregnancy progressed but nothing major.

The year was 1997; the worst snowfall to hit Victoria in 80 years and the baby’s due date was fast approaching. Now our concern was that we would be stranded and not be able to get to the hospital, 25 miles away. My wife told me we need to go now, so off we went, snow or no snow.

Four days of labour, no sleep for either of us. We spent our time talking about our soon to be born child; we listened to the joyous sounds coming from the adjacent rooms as other lives entered this world. Soon it became apparent that intervention would be needed. I was so happy that I was being part of this wonderful experience, the doctor asking me to assist with minor tasks, made me feel so much apart of the process and took the edge off my nervousness.

The moment had arrived our son was being born, the crown of his head showing. Out he came and was placed on his mother’s breast. No sounds of joy, hushed whispers from the doctor to the nurse, who rushed off. It still hadn’t dawned on me that something was wrong. My wife laying there stroking this tiny forehead, with a tenderness that only hinted at the love she had for this baby.

Shortly a paediatric doctor arrived and examined our newborn. He turned directly to my wife and I and said “your baby has Down syndrome”. My wife looked at me and said “I’m sorry” I burst into tears. Sad that our son had downs but sadder that my wife apologised.

Our child was now whisked away for a battery of tests to determine what congenital defects he may have. The next few days seemed a blur, not just from the shock or the exhaustion of four days of no sleep but an overwhelming sense of sadness, of loss. I loved our son with all my heart but knew from 10 years experience with mentally disabled people the immense challenges our son would have to face and we, as a family would also.

Fortunately our son was free from many of the congenital problems associated with Downs, heart problems, cleft pallet and a whole list of others.

Our lives went on, we loved and cared for our son, he did need regular hospital and doctor visits. At the age of 6 months our son developed unusual hyper-activity and accompanied by, almost startled expressions and movements. He was taken for check ups, nothing, he was taken to emergency, nothing. Finally I managed to come up with the idea of video taping these actions as the doctors could not diagnose without actually seeing them. Immediately our son was kept in hospital. He was now diagnosed with West Syndrome. It is a form of seizure activity which affects the part of the brain that regulates breathing and heart rate. This was a life threatening situation. After a week in hospital, which my wife never left, being at our son’s bedside all the time, we came home.

Several other severe illnesses threatened our son over the next few years. We 'coped' as a family. My wife was wonderful. She always knew what to do and how to deal with the, often, not so co-operative medical system.

One thing never occurred to me during this time. My wife and I were growing apart. Our opinions differed on almost everything, from my job, to who is responsible for what around the house, to money, to our son. Our lives had always seemed as one, we were always moving in the same direction, with common goals, we were for the most part very happy, or so I felt.

I think we were both so deep in our own sadness that we couldn’t see the suffering of the other and therefore didn’t give the support to each other that we so desperately needed. I remember having a re-occurring daydream in which our son had a parallel life. I could, so vividly, see our son being ‘normal’. He walked, talked, joked around, he had friends. But as the years passed so did the parallel life of my son, until it faded into nothing and I faced reality. Our son, at the age of 7, had poor cognitive reasoning, couldn’t talk, had poor balance walking, had no friends…………..

So the final phase of my grieving for the 'ordinary' son who had ‘died’ the moment Liam was born, had passed. My wife went through her own grieving, suffering that I have no knowledge of, as she has no knowledge of mine.

We have been separated and divorced for a number of years now. Our son is a wonderful, kind and compassionate soul, who I am very proud of. I love him very much.

Nick

Joyeux Noel

Hi from Julie! We don't have another guest blogger lined up until 2009 so... It gives me a chance to catch up and acknowledge the sheer volume of 'stuff' that happened in 2008... A great website that was just a vague idea in 2007 was started; wonderful people are offering their help; my son has been working flat out... Thank you to Thomas, Marilyn, Rose, Scott, Mahmud, Pablo, Adele, Esmee, Hilary, Daniel and Cobe, Carolyn, Jim and Sheila and all the names I forgot to add here of people whose help is priceless. And thanks Cobe for the very first precious cup of Cobe-tea!

Just before Christmas I saw a movie - Joyeux Noel - which is a true story of something that happened in 1914 in the cold, muddy filth of the World War I trenches: soldiers from Germany, France and Scotland put down their weapons - literally - and celebrated, played soccer and drank coffee together on Christmas Eve/Day. They also buried their dead. Friendships formed but, tragically, the generals (governments?) separated these 'real' soldiers - who were no longer quite so happy to kill each other - and redeployed them.

My dream is for Peace forever among all Nations of the World - a bit lofty but a very real dream because I see ordinary people of all colours and faiths working happily together and I wonder who it is that's pulling them apart again?

Over the holidays I also watched (had to!) several documentaries about the underprivileged, power, greed and violence... And whilst 'ordinary criminals' have been found technically guilty, there is quite a bit of evidence that points towards government involvement. What's really going on here? Again, I can't help but wonder... And pray for strength to 'stay true' - whatever the temptation - for all of us - particularly governments - in the future.

I also watched some great videos from Gregg Braden (thanks Thomas) and the Science of Miracles which are amazing and worth watching (there are 7 parts). Many people are familiar with these ideas but Gregg's explanations seemed beautifully clear to me? - Click Here...

I would like to wish everyone a Successful and Peaceful 2009 and hope that this holiday season was one of family reunion and visits with good friends for you. I look forward to more fabulous guest bloggers in 2009 - and thank you again to this year's guest bloggers for your great posts in 2008.

Guest Blogger -Sarah

Todays guest blogger is Sarah. Thank you so much for sharing your story, Sarah!

Hi everyone,
I'm Sarah and I'm a Childhood Cancer Survivor. My story starts when I was five years old. I went into my parents' room one morning and said: "Mommy, my knee hurts" She said I would be fine and to go back to bed and I did so. My mother thought I just hurt myself on the playground or something. This pain persisted for two weeks and then I started Kindergarden and I was able to forget about the pain for a little bit. However on the second day of school I told my mother: "Mommy, I don't want to go to school tomorrow" Of course this worried my mother, and the next morning I awoke with a fever of 103 and my mother brought me to the ER at Carney Hospital in Brockton, Mass.

There I was diagnosed with osteyomitolytis which is an acute inflammation of the bone marrow. I stayed at that hospital for a week. When I wasn't better by the week's end the doctors did a biposy on my right knee and that's when they found the leukemia cells and on Sepetmber 21st, 1990 I was diagnosed with Acute Lymphoblatic Leukemia.

I could not be treated at Carney so, I was transfered to Floating Hospital for Children in Boston. I stayed at Floating for a week receiving high-dose chemotherapy, Prednisone, and many other medications. There are some bad things I remember from the hospital, and some good things too. My Dad would come to the hospital when he left work and come take my Mom out. Before my Mom left she always bring me Skittles and Starburst. Starbursts, chemo and my stomach all got along just fine, however, with Skittles not so much.
"Look Mommy, rainbow colored throw-up!" I remember going down to surgery to get my catheter put in my chest so I could get chemo, my blood counts looked at and go to school. I Went into remission on October 15th but still needed three years of chemo, blood tests, bone-marrow tests, and spinal taps. For me the scariest part of treatment was the spinal taps. I was not losing my hair or the surgery for the catheter in my chest but those painful needles.

I went back to school, then I wanted to go back to the hospital. The kids at the hospital played with me, the kids at school didn't play with me. No one educated my classmates about cancer because people back then were still stupidly afraid of cancer, I'm sorry if this sounds harsh but, get over it! Cancer exists and if don't talk about it we won't find and the stigmas against patients and survivors will never go away. We should not be afraid of cancer anymore, its almost 2009 we need to get over this cancer-phobia.

I've been in remission for 18 years and I am graduating from college in the spring and I plan to be a hospital psychologist for girls and women with cancer. I often wonder what my life would have been like if I didn't have cancer. I love to draw and I wonder would I have my art abilities if I didn't have cancer? Would I be me if didn't have cancer?

I also had trouble seeing myself as beautiful for a long; I finally accepted my scars when I was 17. One scar is on my right thigh from when I was misdiagnosed. I have one my neck from when my catheter was removed when I was eight and I was half way done with chemo, and her sister scar is on my right breast. I think that one looks like a Phoenix. I had finished taking a shower and I noticed my scars in the mirror and I thought “Damn, these are hot”. My Phoenix-scar made feel beautiful about being a Cancer Survivor but not a woman. I don’t think I felt beautiful as a woman until now. I’ve never had boyfriend, I’ve never been kissed, so I thought I could never be beautiful for anyone; then I realized I had think of myself as beautiful before a man thought of me as beautiful.

I have forgiven cancer for the most part, after all most of problems I face today are from chemo, not leukemia. What I really want to know is why does such a horrible disease have such have such a positive word at the beginning of its name? Cancer is trying to tell us something, I think we should listen to it.