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Christmas is coming why not give a book? A FREE one at that??

Christmas is coming and my thoughts are turned to the birth of our Savior and all he has done for us, for me. I would love to provide at least one of you with a free book that you can give to someone you love  for Christmas this year. (If you read it first and then wrap it up and give it away, I won't tell) 

All you need to do is send me a picture - via this blog or Facebook - of you reading one of your favorite books.  I will pick a winner from all the entries.

I don't have a picture of me reading one of my most favorite books of all time, 'Out of My Mind'. My eldest son asked me if I had a book he could read for his Creative Writing class and I practically threw this one in his face as I bellowed, "Yes!!!! Read this one!" I have asked him daily how he is liking it, he has said nothing (apparently boys don't like to talk about their feelings..).

'Out of my Mind', by Sharon M. Draper is one of those books that gives you all the feels - ugly cry included. Read with caution may I suggest a closet or the trunk at the end of your bed or maybe in the dark of night so no one sees you crying. OR! Let them see you cry and then when they ask you why you are crying  you can share with them this amazing book. Check it out here: http://www.amazon.com/Out-My-Mind-Sharon-Draper/dp/1416971718

My Interview for A LIFE REAL

Several months ago I was invited to be one of the guests on A Life Real, a youtube channel hosted by two amazing men both dads of boys with AS, Darren Humphries and Paul Boon. (Darren is a featured contributor in my book, 'In the Company of Angels') This channel is amazing! The guys interview people directly influenced by Angelman Syndrome. I was their 7th interview. Here's to many more interviews in the future. Watch my interview here: www.youtube.com/watch?v=HYJhxePQUFQ 

Darren is a featured contributor in my book, 'In the Company of Angels' and Paul and his lovely wife Victoria are the #3 interview on A Life Real. Watch their interview here:  www.youtube.com/watch?v=PY-kuKBqJJM

I hope you enjoy all the interviews and learn a bit more about Angelman Syndrome.

For the love of laminating (oh and PODD)

Dear Reader,

I think I have found my newest passion... Laminating! Wow. The smell of the laminator heating up, the soft whir of the fan as it gets ready to plasticize your perfectly lined up project in its silky sheets. Loved it. I was quite saddened when I was finished. (Funny side note: my FIL also shares my obsession with laminating. Whenever we showed up at his office he would inquire if we had anything for him to laminate. He would hang his head if we couldn't procure something worry of lamination. However, we did laminate my husbands Social Security card. We found out later that it says right on the card "Do Not Laminate"..  Oh well. It will never get torn)

On to the main reason I was so excited to be laminating. PODD! (Pragmatic Organization Dynamic Display).  'PODD is a means of selecting and organizing symbols so that people with complex communication needs and their communication partners can communicate more easily.' (www.novita.org.au)

After much research, planning, prayer, talking with other parents and teachers we decided that we would begin PODD. There has been so much success with it that how could I deny that it works. I am desperate for Conrad to communicate with us. He has so much to say and there is only so much guessing one can do before you decide this is not working. Let's find something that does.

He knows the PODD is his and he loves to look through it and find the TV icon. (figures, he is kind of an addict) It is going slow,  lots of modeling and breaking habits of just getting what he wants instead of either modeling for him how to ask for what he wants. But we are persevering. 

Please pray along with us as we give Connie his voice. Who knows, he may want to tell you thanks.

Hello

Dear Reader,
For the past several months I have been up to my neck in different types of communication devices, methods, app's you name it I have either seen it, read about it, researched it or fretted over it.
You see dear reader, we have in our family, one of the sweetest spirits ever living in our home.

He has Angelman Syndrome (AS) and as of right now has no 'conventional' way to communicate with the world. By conventional I mean vocally, sign language, or some assistive communication device that allows him to let the world know what it is that he wants or needs OR how he feels!

Have you ever wondered what it feels like not to be able to communicate your simplest desires or to simply tell someone, 'thank you' or 'I love you'? I have. All the time.

I have been fortunate enough in my life to know firsthand what it is like to not only have no idea how to communicate the simplest of needs to not understanding anything that was going on around me.

The first was when, at 18, I travelled all the way to Hamburg, Germany to be an Au Pair Madchen (nanny) to a German family whom I had never met. They had three adorable children to whom I would be responsible. Before I left I listened to some tapes and went out for dinner with a girl from Germany to learn some basic phrases. From the time I decided to go and by the time I got there it was only two months, hardly enough time to learn such a difficult language as German.
Once there I was enrolled in a German language class and I was on my way to becoming a very inefficient German speaking nanny. But I was given tools and the opportunity to use these tools. It was very empowering to use what I was learning every day and to see that I was not only getting better but I was being understood!

The second opportunity came in the form of a mission for The Church of Jesus Christ of Latter-day Saints. I was called to serve in the Marseille France mission. I was familiar with the French language as I grew up in Canada. I had been learning it since I was a wee one, BUT! Speaking it was a completely different story. I spent eight weeks in the Missionary Training Center (MTC) in Provo, Utah. The first four weeks all the instruction was given in English and the last four weeks was given entirely in French. There was one Elder (guy missionary) who just could not get the language no matter how hard he studied or tried. There was one day where he was trying so hard to say whatever it was that he needed to say in French that he said, "Comment dis-ton - something in English - en Francais?"  Which translates to: "How do you say - whatever he was trying to say - in French?"
We all burst out laughing at his enormous efforts but at the same time we could feel his frustration at not being able to say what he wanted to say. He was given the tools and was using them but it was taking so much longer than he wanted it to.


When I finally got to France, and heard everyone around me speaking, I was convinced I was either in the wrong country or had learned the wrong language in the MTC. I didn't understand a. single. word. I was assured that we were in fact in France and that the language I was hearing was French. (apparently the accent is much different in the south of France). GAH! I was so frustrated and scared ok I was terrified. I had a headache that lasted nearly three months as I listened so vigorously and intently to this incredibly beautiful language that I did not understand a word of.  But after much perseverance, fervent prayer and A LOT of practice, I finally got to a place where I was proficient enough to understand those around me and to speak my feelings. It took awhile but I had been given the tools I just needed to keep at it.


What does any of this have to do with our son not being able to communicate 'conventionally'
you ask? Everything! This year I am on an adventure to discover what our son has to say. I want to know what it is like to have AS,  what he dreams about at night, does he really like grapes as much as we think he does? I want to know what books he would like me to read to him, why doesn't he like scrambled eggs or pancakes, what is his favorite color, would he like to be in an inclusive classroom.

If you think I am getting ahead of myself in thinking that he will be able to answer any, let alone all of these questions... check out this blog  www.uniquely-speaking.blogspot.com  about the communication undertakings of Keisha and Rylee. Get ready to blow the lid off any beliefs you once had about children with disabilities. Keisha and Rylee are so inspiring. They are my heroes.  I am so excited to introduce them to you.

Please stay tuned as I figure out which communication device, app, book, PODD or method we will be using. Maybe Conrad will take over this blog one day..


PS Rylee wrote this:  She is 9.

Lipstick and Shoes

I had just sat down after a super busy day of... errands and getting dinner on and off the table when I noticed something purplish on the bottom of Mr. Conrad's shoe. Oh and before I forget, why is it that it takes hours - well not really hours, but it does feel like hours - to get dinner on the table only for it to be scarfed down in mere nano seconds?) I would love to actually taste the food and take the time to enjoy what I am eating rather than after having only taken one bite, the boys have finished theirs and are asking to play with friends, watch tv or telling me to,"Hurrry up! Don't you know I have practice in two minutes!"
Ok, ok dear reader, I digress. Back to the purple on the shoe.
So, I had just sat down after a full day and noticed something on the bottom of Mr. Conrad's shoe (Yes, his shoes were not put away. gasp!). Hmm? Where did that come from? was the only thought that crossed my mind as I collapsed on the couch. It wasn't until the next day at approximately the same time as I was collapsing on the couch that I noticed my white rug (Ok so it is not really white - anymore - people. It is more of a grey. What do you expect with four boys who insist on keeping their shoes on inside the house despite my protestations and my threatening to throw their shoes away? And their insisting that,I "It's ok we have hard wood floors!" GAH! I can't win). So I put up with a grey rug that used to be white. But now dear reader....... It is not only grey. It is grey with purple spots. Yes. Purple. Spots.
Remember the 'something purplish' I saw earlier on Mr. Conrad's shoe? Turns out it was lipstick. Yep.
We all knew that he was a ladies man, but how did he get lipstick on his shoe?! It's not mine. I hardly ever wear lipstick and I am pretty sure purple is not my clour. Conundrum of the century.

Bards & Brews

Yes, it's true dear reader. I spoke at a place called Primrose and Tumbleweeds that hosts monthly book readings of local authors and also boasts the largest selection of Oregon beer and wine. I did not partake as I do not dirink, but I hear that they have some of the best Hungarian mushroom soup. I will have to try it next time.
It was a lovely evening of authors reading from their works taking us into the minds of those who have a penchant for the written word. I loved every second of it.
Below is a link to my tiny bit.


Author Pamela Jean Lyman Speaks at Hillsboro Bards & Brews www.youtube.comPamela Jean Lyman, author of IN THE COMPANY OF ANGELS, speaks and reads from her work at downtown Hillsboro's Bards & Brews presented by NIWA. Bards & Brews ...

Time to Say Goodbye

At the end of August we will say good-bye to our caregiver of three years. 

She quietly and sweetly made her way into our hearts in a way I will never forget and 

will forever be grateful.

Not being familiar with Angelman Syndrome didn't prevent her from learning how our son operates, what makes him tick and how to help him.

She did all this with love and kindness with a dose of firmness only she could provide.

Thank you dear B, we love you and are so excited for your new adventure and wish you the greatest luck possible. For you deserve all of lifes good things.

Are you looking at me?

Dear Reader,
I have never been bothered by people looking (staring) at Conrad.  But now that he is older he has a larger audience of people stopping to look as he rolls by in his red adaptive stoller playing on my iphone - every now and then holding it up for me to put it back to the photos - or trying to grab every single thing made of paper or plasitc he can get his hands on or doing his favorite heavy breathing act (Matt says he enjoys breathing more than the rest of us). But at the store today it was different.

Maybe it was because I am white flour and sugar deprived as I try to get my health in top notch shape or maybe it was because it is now spring break and not one of my kids wanted to spend time with me - even after I took them all to lunch, even Connie, he just wanted to be in his bed watching a movie - or maybe it was because I battle depression (the Big D as we call it at our house) and today I was in full battle mode.

At any rate the stares aggravated me.

I left the store holding back the tears. I pulled up in front of my house and saw my oldest boy, Ben,  hanging out with three of his buddies. They were working on their scooters in the driveway and my heart lifted as I watched them working together and it lifted a little more as they said hi to Conrad and moved so that he could get past them. It lifted again as I walked inside the house to find the phone ringing, and hearing  my youngest, Wilson, calling to see if he could play a particular video game - he wanted to make sure it was ok with me. Then it was lifted even more as Conrad gave me his ultra smile as he led me to his room and climbed in his bed and waited paitently for me to turn on a movie for him to watch. It was as if he was saying, "Mom, I know you are a bit low today, so go have a break. I'm good."
Thank you guys. I think I will.

boy bites horse

Dear Reader,

Just as I was about to crawl back into bed the other day (the day started off quite poorly), I happened upon the most brilliant blog. It saved my day. Truly! It is written by a father on behalf of his son with AS. And it is SO funny.  I then spent an indefinate amount of time reading nearly every one of their posts; giggling my brains out. It was very therapeutic.

I sometimes get so caught up in the 'hard' things required of me in raising a child with special needs that I forget to mention or give voice to all the sweet, funny and miraculous things that happen on a daily basis. 

In fact! Did you know that we were told Conrad would never walk? Well he does. It just took him a bit longer - FOUR years longer. Did you also know that we were told that Connie would not know that we love him? HA! I am happy to report that I did not believe that for one second. For anyone that knows Conrad and has seen him with his dad, his brothers, me, or any number of his extended family knows that this is simply not true.
Just the other day his Grandpa H let him 'play' with his scruffy face (which translates into- letting Conrad pretty much do anything he wants to your face-scratch it, pinch it pull on it rub it, and maybe getting a bit of dribble in your mouth all while laughing hysterically) Tell me that is not mutual love at its finest.

Please check out Christyan and Diane Fox's blog-you'll be glad you stopped by!
http://www.boybiteshorse.co.uk/not-swimming-with-dolphins/

tv debut

Here is our TV debut. My only hope was that they would have shown some more interaction between all the boys. (George was upset not to see himself on tv) But overall I really like it.
Thank you Amy and Justin for doing such a wonderful job.


http://www.koinlocal6.com/content/seenon6/story/Hillsboro-mother-writes-book-on-Angelman-Syndrome/gtPjwrsTGEeKr79sQxkvWQ.cspx

tv star?

 

 Hello there dear reader!

Yesterday KOIN 6 Local News came to interview me and Conrad about my book, "In The Company Of Angels". It started with them taping Conrad as he got off the bus and then walking down to meet his brothers at their bus stop. As soon as Conrad saw the camerman (Justin) he started to perform: giving coy looks, laughing and hugging and just overall being a ham. I think he was born for the spotlight! He really knows how to capture and hold an audience (he was much more comfortable and natural than I was) After we retrieved the twinkies from their bus stop (and the novelty of having a camercrew in our house wore off - a bit) the real interview began. I was miced (cool), told where and how to sit and where to look - not at the camera! The beautiful Amy Frazier then began the interview. She made me feel very comfortable - like we were just having a conversation between friends. She asked me everything from why did I write this book and what I want for Conrad. It was incredibly emotional and exhausting but an incredible treat and such a great opportunity to raise awareness for Angelman Syndrome.

What To Say.

I was getting my eyebrows waxed by my darling hairdresser, when she whispered excitedly, "I'm pregnant." I was so excited for her and asked all the usual questions one asks when one finds out a friend is expecting ie; When are you due? How are you feeling? Do you think you are having a girl or a boy? When we got to the last question her response was, "I really don't care. Just as long as it is healthy." My stomache did a little nauseating twist. I LOVE my hairdresser, but I have an enormous aversion to this reply. Why? Why does this question bother me so much? Because what would happen if your child was not born healthy? What would happen if you discovered your beloved child has a genetic disorder? Do you give her back because that is not what you wanted? A healthy, perfect little cherub? Now of course I know that you would go on loving that child and do everything in your means and power to help them. I happened to be the first person a dear friend saw after getting some of the worst news a parent can get. Her unborn baby had an irreversable chromosomal disorder that was essentially a death sentence. It was devasting. Of course it was not what she nor her husband would have dreamed for themselves. But their baby girl was born alive and lived for a miraculous five days. I was fortunate enough to be one of the lucky few who got to hold this precious gift from God. The Spirit of heavean was very strong with this little one, I couldn't keep my eyes off of her and it was incredibly difficult to leave her presence. Please think before you speak, for the very thing you may not want, may either be the thing that you need or the very thing that you need.

joy

Joy. That is what this picture emotes every time I look at it. I LOVE it. In fact I love it so much that I am thinking of having it blown up to an unbelieveable size and hanging it above my bed, so that when I wake up every morning I can't help but feel joy. (Well maybe I won't hang it above my bed....) Conrad is my joy and sometimes my greatest sadness, this is why I love having pictures of him that show his true personality. He is joy. I was reading a friends Facebook page the other day and she posted this scripture:

Lay not up for yourselves treasures upon earth, where moth and rust doth corrupt, and where thieves break through and steal: But lay up for yourselves treasures in heaven, where neither moth nor rust doth corrupt, and where thieves do not break through nor steal: For where your treasure is, there will your heart be also."Matt 6:19-21(KJV) I was reminded that we must treasure up moments of joy and happiness with our children, put them up and remember them so that when we have been knocked, pushed or even tripped down we can be reimnded of the moments in time that stood still and we felt - joy.

A book is born.

Dear reader, I have written a book. It is now for sale here: http://www.tatepublishing.com/bookstore/book.php?w=9781621475644 I hope you will read about it and maybe buy a copy. I mostly hope that you learn something about Angelman Syndrome, and how it affects the lives of those living with someone who has it and the lives of those caring for someone affected by it. Writing this book was an honour for me, as it put me in touch with some of the most lovely, determined and passionate people I have ever had the pleasure to be involved with. Thank you.

It's here!

I was having THE WORST day earlier today. After grumbling and making everyone, including myself miserable, I decided to remove myself from the house and take a walk to the mailbox to cool off. I opened #10, to find the usual junk mail, Ben's Sports Illustrated magazine, bills and a white plastic type envelope addressed to me. It was from my publisher. Tate Publishing. I stopped breathing. I closed the door to #10, removed my keys and proceeded to slowly make my way home. How does one react in these once in a lifetime situations? Is there a protocal? Should I run and jump and knock on every door telling everyone that my book came? I wasn't sure. Deciding there wasn't one, I proceeded to open the envelope. I was a bit surprised that the envelope wasn't bigger and heavier. I was expecting a manuscript type document that I was to go over and make any last minute changes. No. It was my book. With the picture on the front that I fought hard to have there, printed on Natural paper like I had requested. It was perfect. I reached my house, walked in and handed my husband, Matt, (who had been the brunt of my mood earlier) my book. He took it and grinning from ear to ear proceeded to read it and tell me how awesome it was. And it is.

My Book

Dear Reader, It has been several years, many late nights, early mornings, lots of tears and loads of joy to finally arrive at this moment. I present to you, my book. (I am sorry the image is so small)

s.t.u.c.k.

Dear Reader, I often feel this way - stuck. And not the kind of stuck you know is temporary - the kind with no end in sight. I am trying very hard to change my thinking. I just finished editing my book about my experience with raising a son with AS (angelman syndrome). Recently, I was talking to Matt about how he felt when Conrad was diagnosed with AS. His experience has been so very different from mine. Where I feel more of the challenge of raising a disabled child, he feels the blessing. Where I feel like I am spinning my wheels, he recognizes the opportunity to change our view of what our life could have been to what it is. Of course he is right - Conrad is a blessing and of course we have had to change our lives significantly to meet the demands required to care for Conrad. However, I still find myself feeling stuck. I just can't help it. Stuck can be relative. I have learned to see things differently from my vantage point. I have learned to be more patient, to listen and to wait and pause for answers. Although 'being stuck' gives the conotation of not moving or growing; it can be that way unless you learn to stretch and grow in the place you are stuck. Do you ever feel stuck? How have you learned to accept it or gotten unstuck. I would love to hear from you.

Editing

Dear Reader, For the past several weeks I have been typing up some final edits for my book. You would think I would be elated - Not so.(well maybe a bit relieved now that I am finished) It was actually very emaotional and I spent a lot of timewiping my eyes as I relived all the emaotions from the first moments of when Conrad was diagnosed. I didn't realize how far I had pushed those feelings away. Or maybe I thought that I wouldn't have to go through all of it again. But I did. It was incredibly hard. But I am now on the other side looking up! Something so very cute happened a few weeks ao that I want to share with you. My boys (not including Mr. Conrad) were being pills to me and each other. So after bedtime prayer I had them each say 3-5 nice things about each other (Conrad was in bed already). When we were through, Wilson said, "Mom, we forgot Conrad! Can I do him now?" All three boys proceeded to say very sweet and insightful things about him. Some of the tihings that they said were: He is funny, he likes to watch TV with me, he gives good hugs, and he is nice. It was a proud mom moment.