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November 23, 2010 / paperkids

The beginning

And now these three thing remain: faith, hope and love.  But the greatest of these is love.  - Corinthians 13:13

 

I never could have imagined six months ago that I would know Emma as I do now.  My God!  How could I ever have concieved it?  In all my entries, I don’t know that I’ve been able to fully express the joy it has brought me.  Words themselves have taken on a a whole new meaning for me.  I see them pour out through Emma’s fingertips and every single time it feels a little  like the first time.  These words have filled up my life and left behind only all that is possible.

 

After all these years of her silence, it is my desire above all else to just listen to her.  And what she says could never fail my heart, not even if it might be hard to hear.

Emma:   Would you stop writing the blog?

I felt like someone had knocked the wind out of me.  We sat on the couch and I just wasn’t sure what to say.

Me:  “Emma, why?  Do you really want to stop the blog?”

Emma:  yes

Me: “But why?”

Emma:  I am trying to be a part of this world

I think even before she typed this out, I began to feel this from her.  Autism has been her whole life for so long.  For all these years, she was defined by that word.   And now I could see more clear than ever – she is a  nine year old girl who really wants to learn how to ride a bike and be a part this new world that has opened up to her.

Me:  “I think I understand.   Are you sure?”

I continued to question her in the week that followed.  It was hard to swallow the idea of saying goodbye to this experience.

Emma:  I want to move on

quit asking me about the blog

Me:  “Okay!  Alright.  But you will let me know if you change your mind, right?”

Emma:  yes but I won’t

Her matter of factness, which is a personality trait that I really admire in her,  was somehow comforting and eased my sadness somewhat over the whole thing.  I realized that one of the things I love the most about writing this blog is documenting this time with Emma.  All of our conversations and sharing this with her while getting to know her for the first time – this is what I love the most!  And I will continue to have this with her no matter what happens.

Me:  “Are you glad that we did the blog?”

Emma: yes

Me:  “I still want to share about this, Emma.  And I will still write about autism.   Our story can help other people.  You know that, right?”

Emma:  yes

Me:  “What if I start another blog?  One that’s about our family?  Would it be okay if I still share things about you?”

Emma:  yes

What more could I say?  After all these years, she was telling me how she felt and what she wanted…. and  I really heard her.

I put my arm around her and held her close to me.

Me:  “I am so, so proud of you, Emma.  I could not be any more happy or any more proud.  I love you so, so much.”

Emma:  I am a lucky girl

I felt such a wave of joy mixed with sadness – it was bittersweet.  I looked at Emma and thought about how far she’s come in these six months.  How far she’s come to draw so close to me and the life she so desperately wants to be a part of.

It took me a while to figure out how to say goodbye to this blog and all of you.  I’ve spent time crying like a baby over it.  You see, I’ve come to love my intimacy with you.  I know that I don’t know you all, but I feel our hopes and dreams mingle.  I have been able to share this powerful moment  in our lives and record it in these forty entries in words that mattered to me…and even to you.

I could never call this the end, but it is just the beginning.  The start of a whole new wonderful journey for Emma and our family.  I have no idea where this road will take us or the obstacles that may lie ahead.  But now I feel like anything is possible when you believe.

It’s been hard to get video (the iphone is pulling through, although somewhat limiting), but I wanted to get one more up.  I am still having to lightly support Emma’s arm, but she has come so far that I really think she’ll reach independence in her typing.

Emma:  I am a lucky gal to have this amazing experience and loved doing it.

New blog coming soon!!

To be continued…….

 

UPDATE:  Got our new blog up!  www.Murphy the Musical.com.

November 5, 2010 / paperkids

As we are

For the past several years, I would hear of our school district’s art program called Reflections.  Students submit their expressions of art in everything from painting to literature to photography.  Every time I’d see the flyer, I couldn’t help but feel a surge of sadness.  It seemed like that was for other people’s children.  Now, I must admit that I am not nearly involved enough in school activities.  I always thought of myself as one of those PTA moms, but haven’t done much to be involved. Our schools are wonderful about integrating the special needs students in with the general student body, but at times it’s still hard not to feel isolated from others when you have a child with autism or any special need.  Despite all the support, there still feels like a boundary there at times.   Some of these kids aren’t able to physically do things that the other children can do, like play sports, or pass notes (well, I guess it’s texting nowadays isn’t it?) or even play a simple game on the playground with the other kids.  Think about how limited social activities can be when you can’t speak or  tell your body what to do!

This year, when I opened Emma’s backpack and saw the flyer, I sort of had the same reaction I usually do.  I was just about to toss it, when I  looked down and noticed the literature category, which included poems!  Suddenly, I got pretty excited at the thought.  I ran right over to Emma with the keyboard …

But Emma didn’t have the same reaction initially.  When I asked her if she wanted to enter a poem, she spelled out no.  But she couldn’t, or maybe wouldn’t, tell me why.  Anytime in the next several days, when I’d ask her about it, she’d seem annoyed.

Emma:  quit asking about the poem

It made me think of all the times when I was little that I was too shy to participate.  If you ask my mom, she’d say it was a constant battle.   I always felt inadequate.   I wanted so badly to express myself, but was terrified of failure.  I still am!  I began to wonder whether Emma felt that same sense of fear.  She doesn’t usually seem afraid of anything, but this might be a little different – sharing her writing with the whole school!

When Emma did finally agree to type a poem – I suppose because I kept hounding her – I was so elated.  But when it came time to ask the school about it, I was nervous that maybe Emma’s unconventional method of communication might not be deemed acceptable.  I still have to facilitate her arm somewhat and she still can’t type out for anyone but me.  To my relief, I got enormous support from the school and began to fill out the paperwork.  This was a first for us – the very first contest Emma had ever entered!

The poem was to be based around a theme, this year’s being Together we can!  In addition, she was also required to give an artist statement, explaining how she thought her poem related to the theme.  I knew that whatever Emma came up with would be wonderful, but this was the first time she’d ever worked around a theme, not to mention describe how it relates!  That sounded really hard!

As I was reading over Emma’s poem yesterday, I entered a kind of reflection of my own as I thought of a conversation I had with a friend of mine.   Her son was in Emma’s class at one time and he is nonverbal as well.  Last year she’d  told me that she submitted something for her son for Reflections – a piece of artwork.  I thought this was wonderful!  It made me wonder why I never had.  I thought of her again today and  saw even more beauty in what she did to include him.  I took out the iPad while Emma and I sat under our maple tree on a blanket in the yard.

Me:  “Emma, every year when Reflections came out, did you want to be a part of it?”

Emma:  yes

Me:  “So, even though you couldn’t tell me, you still wanted to send something in?”

Emma:   yes

One of the first things Emma ever spelled out for me was I yearn to tell you that I belong.  I think it’s easy to fight our own battle to succeed, trying so, so hard not to fail.  Maybe we take for  granted our ability to just belong – being a participant in this thing called life.  And how beautiful it is when we can experience it together!

Me:  “Is there anything that you’d like to share on the blog – any encouraging words for parents that are reading it?.”

Emma:  tell everyone to reassure their kids that they are quite artistic and applaud their talents even though they might not be able to express themselves

take them seriously

Once again, I am touched by her words –  I learn so much from them.  And her poem is so special.  I think it fits the theme beautifully: Together we can.  Every time I read it, I choke up.  Emma always had a love for trees.  Ever since she was young, I would see her literally hugging tree trunks.  I adore her imagery.

 

 

 

 

 

 

Artist statement:

It reasons that reassuring each other about our place in the immigration of our world treats artists inside all of us.  The tree is a metaphor for our time here on earth.

 

October 30, 2010 / paperkids

Treasure hunt

Many months ago, before Emma began communicating, I sat across from my friend Renee at lunch.  We talked about life and our passions.  I wasn’t sure I had much passion left in me to be honest.  I was, and have for years, been consumed by this thing called autism.  I suppose it could have been considered a passion of mine in a way.  Renee has been the best friend and mentor,  also having a child with autism.  I mean, I didn’t even know what a blog was until she showed me one!  She has a blog for her photography, which is not just her business, but also her passion.  I remember saying that I would have no idea what to blog about.  These were some hard times for me.  I told her that if I ever did start one,  maybe it could be about how I saw God in my life every day….that maybe that would help me through the tough times and remind me of love and to keep my hope alive.  I guess I never did write that blog….or did I?

I thought of this conversation the other night when Emma once again astounded me with her depth.  I’ve been wanting to use the keyboard on the dynavox, but now she’s so used to the touch screen on the ipad that she’s not able to push on the dynavox screen hard enough.  This flustered me.  It felt like one more obstacle getting in the way of my ultimate mission – complete independence for Emma.

I had decided to attach the keyboard to her dynavox, which is something I’ve been trying out because she would be able to hear the words she types.   We sat on the couch and  found a great position with the keyboard on Emma’s lap tilted up.  She reached and found the keys, pressing them down with such amazing precision that it really took me by surprise!  And I was just barely holding her arm below the elbow.

Emma:  Quit worrying

Don’t assume as we go on a treasure hunt that we won’t find treasure

are you worried

Um, More like speechless once again!  Her words take me to some other place that  makes me wonder why I was worried at all.  She was even self-editing with the backspace when she made a mistake.  And she was using the spacebar!

Me:  “Not really…not anymore, I’m not.”   It couldn’t have been any more true in that moment, but I had been worried before…and would be worried again.  I’m always worried!  And before that moment, I was concerned when I saw that she couldn’t hit the letters on the dynavox.  I felt panicky and thought once again to myself “What if she isn’t able to do this?!  What if no one believes her?  What if I can’t get her to that level?”

Me:  “Are you worried?”

Emma:  no

Me:  “Do you ever worry?”

Emma:  yes   (she went on)  understandably reasoning is yearning to please the usual people

I was fairly silent through all this – what could I say?  She kept typing….

Emma:  are you yearning to twist your world apart

This question struck me.  Not only was she asking me so many questions, but they were profound.

Emma: applaud the will of God any time you worry

This was such a simple yet powerful message to me.  If I was trying to hold back my tears, I did not succeed.

Me:  “Sometimes, I feel like God speaks through you, Emma.  Do you ever feel that way?”

Emma:  yes

Me:  “He lives inside you doesn’t he?”

Emma:  yes

I felt my heart melting.  It  filled with such a warmth and peace that it washed away all that worry.  What is it all for anyway?, I asked myself.

I asked her if I could share this “chat” on our blog and she typed “yes”.

Me:  “What should we call this entry?”

Emma:  treasure hunt

Me:  “I like that.  What photo should we put with it?”

Emma:  haggard ropes treasure in a chest.

I am so humbled by this journey.  In the midst of all my internal chaos and stress, I find that every day when I look at Emma, I see the face of God – I hear that voice beckoning me through Emma’s fingertips – calling me to another place.   Treasures without end.

October 25, 2010 / paperkids

The weight of words

Emma: are you still pissed at dad

Blame it on strong Irish tempers, blame it on money, blame it on autism, blame it on life, or as I like to do from time to time, blame it on Jared! For years and years we not only haven’t edited the things we’ve said in our home, but niether the things we’ve shouted out and screamed in a fit of anger. When Emma began communicating, we had a few “Uh-oh” moments when we’d thought of all the things we might have said in front of the kids. I always have known that they must have hated the fights, but rarely would Emma seem upset by it… and never could she shout back “Stop it!” as I’m sure she wanted to badly.
One night, we got into a pretty heated discuss – okay, it was a fight. I went over and sat down next to Emma with the iPad.
Me: “I’m sorry, Emma. Don’t worry, it’s fine. Everything’s fine.”
She reached out to the keyboard.
Emma: admit your mistakes

Me: “What do you mean, Emma?”
Emma: take responsibility for your actions

This was certainly not the reaction I was expecting. After all, I don’t make mistakes. It’s almost always Jared’s fault.  I was sure of it.

The other morning, after a particularly bad fight between Jared and I, we had this conversation when I held up the keyboard.
Me: “I’m really sorry about last night Emma. I hate fighting like that in front of you guys.”
Emma: get a divorce
Me:  “What?! Why would you say that? I know we say really mean things sometimes, but sometimes there is just a lot of stress and it has nothing to do with you. We love each other and you and Hayden.  I’m really sorry.  I guess we all have bad days. What if we stop fighting? Would you still want us to get a divorce then?”
Emma: no
Me: “Well then, we’ll never fight again, okay?”

I know that it may seem like a completely impossible promise to keep, but we’re really trying to take this to heart and think twice about the things we say to each other. We’ve always been reckless with our words – carelessly throwing them everywhere with no regard for who might get crushed in the process.  Not considering the kids…much less each other.   And it’s so not cool in that “Sid and Nancy” kind of way anymore – not that it ever was.  It’s easy to point out all the things that aren’t working right.  It seems like when it comes to marriage, I sometimes stop looking “on the bright side” of things.   Jared is one of the most giving, funny, and intelligent people I’ve ever known.  And he is a wonderful father and husband.  We have been through many ups and downs as all couples do.  I guess it’s easy to be consumed by stress and blame the person that’s closest to you. But it’s hard to take words back once you say them.  Is it too late to make up for the past?  Is it ever really possible?  I’m starting to see the impact of those moments. Emma has made me think differently about the weight of words.

To be honest, this wasn’t a post I was planning on doing, but Emma has once again inspired me.  The other day, which happened to be the day after the big fight,  I asked her if she had any ideas  what we could do a blog post about.

Emma:  about not fighting

Me:  “Really?  Are you sure you’d want to share that with everyone?….  But what message do you want to share with the people reading it?”

Emma: to try really hard not to fight in front of the kids

Me:  “Okay, Emma.”  Naturally I was feeling hesitant. But then I thought, why not.   “I will.”

Talk about airing your dirty laundry.  I guess either you all can relate….or you may look at us a little differently.  Judge away!  I am not a perfect person, much less a perfect wife, and am being reminded lately that I’m definitely not a perfect parent.  But hopefully it’s never  too late to discover and grow.  Maybe we’re all just a work in progress.  For all I might have taught her over the years, I am certainly learning a lot from Emma.

October 21, 2010 / paperkids

Pretty respectful

Respect:  courteous regard for people’s feelings; the attitude of admiration or esteem; the condition of being honored

Over the past several months, Emma has had some pretty aggressive behaviors, which include pinching, grabbing and trying to bite sometimes.  I haven’t really been sure how to deal with it, but usually I end up reacting with anger and impatience.  That is what’s expected, right?  I wrote a post once about these behaviors (Are you mad at me?) and despite the fact that Emma is still telling me she can’t help it, it’s been hard to wrap my mind around it.  How many times will she type out : I can’t help it or I have no control over my body or the never ending  I am sorry before I will stop questioning and just start listening to her?  I have two choices here: Either I believe her or I don’t.  And if I don’t believe her as her mother, despite my misunderstandings, who will??!

I haven’t, and don’t,  always consider respect and dignity when it comes to the kids.  It’s easy to get so bogged down in those special needs that my children have that I fail to see how that one thing can bring humanity to their life – confidence that gives them that sense of belonging.

I know that as a society, when we are talking about those with special needs we use the word acceptance a lot.    And, by all means, we should!  But I think that maybe what’s more important is to show respect for these individuals.   I think ultimately, respect and dignity is the right of every human being.  I really can’t imagine, but often have tried, what it would be like to live in this world and yet not feel like you could really be a part of it.  A world where not only are you misunderstood because you don’t communicate the way everyone else does, but also because your body doesn’t react as everyone expects it to.  You have to give it 200 percent everyday to try to fit in, but no one even knows what your favorite color is or looks at you like an intelligent person at all.

Yes, I think respect is in short supply when we talk about our special needs community.  Think about what a little respect could mean to someone who has always been made to feel like less of a human being because of their differences.  I guess I have been thinking about this for a very long time.  How can I not?

A week ago or so, when Emma had an extremely aggressive day, I decided to forgo the snapping and reacting and  tried to calmly deal with the situation.  I believe I used the  words “I know you can’t help it, okay?”   I know some people might have something to say about that!  It may not seem right to down play all that pinching, grabbing and attempted biting.   But in my heart, I really tried to remember what she’d told me.  I felt that I needed to do that for her.

At the end of the day, when her body was calm, she reached out to the keyboard.

Emma:  I am sorry for prying but why would you rewire your personality

Me:  “What do you mean?”

Emma:  Usually you insist that I apologize

Me:  “Well, I’m trying to be a better listener, you know.  You always tell me that you can’t help it and I believe you. I do.”

Emma:  pretty respectful

Tonight I talked with Emma about  the post.  After all, those two words were the inspiration.  I wanted to include her and get some feedback about how she felt about it.

Emma:  I respect you for respecting me

I love her way with words.  After this, I found myself going on and on about the subject.  You can imagine my perseveration.

Me:  “Am I going too deep with this?”

Emma:  Just a little

Respect!  Nuff said!

October 15, 2010 / paperkids

Treasures

One quiet night Emma and I sat on the couch.  I had just put Hayden down and read Where The Wild Things are to him.  He calls it “Max”.  I asked Emma if she wanted me to read to her.  Jared had recently finished reading the book Charlie and the Chocolate Factory to her and I was curious to see what book she’d want us to read next.

Emma:  Read the Bible

This didn’t surprise me.  Sometimes, out of the blue, she’ll ask me to read it.  So I read a little out of Matthew.  At some point Emma reached out to the letter board.

Emma:  Have you tried to understand your faith?

I sort of stumbled on my words.  What could I say about my faith?  I wasn’t really sure what to say.  Have I tried to understand my faith?  It was an interesting question.

Me:  “Yes….  I think I have.  I’ve thought about it over the years.  I guess I just always believed.  I’m not sure if I ever didn’t.”

I knew that there had been times, though, where I had lost faith.  I guess I’ve just never thought much about those times.

Me:  “Do you still have a strong faith?”

Emma:  yes

And then after a few moments…

Emma:  and I always will

I thought quite a bit about Emma’s question. I’ve always been a sucker for spiritual and philosophical thought.  I’m not really sure, though, whether I ever really contemplated my own faith.  Maybe that sounds irresponsible,  even ignorant to some, but it always just felt easier and more natural to believe.   If faith really is the substance of all things hoped for like it says in Hebrews, then I’ve definitely used that over the years!

Perhaps it’s okay not to question it.  Like many parents of children who have special needs, there have been so many stresses that bore down on me over the years.  Some days where it was hard to get out of bed.  Maybe those heavy days didn’t show themselves to everyone, but my family felt the weight for sure.  I have many friends who can relate to those feelings of helplessness, sadness, and devastation…..and so much exhaustion.

I remember a few times being totally overwhelmed and my mom would say, “Just give it up to God” and it would really anger me.  I would say “Yeah, right.  If I don’t do this no one will, mom!”  And I really meant it!  Sure, I’d pray, but at that end of the day, guess who’s got to pull it out – ME!  But a few times, when things got too much to bear and my head was spinning and drowning, I would plead for God to take over.  I would give Emma over to Him, let go of her in a sense.  I think about Emma and how she’s longed to be a part of this world.  No one heard her voice, but One.  It’s only natural that  those two are inseparable.  Emma reminds me so often of my faith, that it’s hard NOT to write about it!  It’s hard not to thank God every second of every day!

I couldn’t stop thinking about Emma’s question to me.  Yesterday, I decided to ask Emma if she tried to understand her faith.

Emma:  yes

Me:  “Where does your faith come from?”

Emma: It comes from hope, love and belonging…..being near you and God

I thought of the few times Emma had expressed her desire to belong.  But I knew that in one sense, she did feel that belonging.  She belonged to God. And I know that she felt loved, special and very much heard in a world that didn’t always love her, make her feel special or hear her.

It was bedtime for Emma and I held up her two ratty nightgowns so that she could choose.

Me:  “You know, Emma, I am so sorry that I haven’t bought you any new clothes lately and that we are always so broke.  I promise that I will buy you some new pjs soon!”  The guilt just never ends.  I layed down next to her and just happened to have the keyboard with me.  She reached out.

Emma:  prepare for yourself treasures in heaven

Me:  “You are too much, Emma!”

I couldn’t wipe the smile off my face.  Her comment was in reference to what we’d just read in Matthew about not worrying about money – what you’ll wear or eat and also about not storing up treasures on earth.  It seemed very fitting indeed and so very Emma.  I thought too about her Heaven poem again:  I am your reason for everything so I am your heaven.  I believe that Emma has found her Treasure.  And I am blessed beyond words that  she shares it with me.

October 12, 2010 / paperkids

Point to it

Me:  “Got any poems in mind?”

Emma:  Yes

Me:  “What’s it called?”

Emma:  Point to it

Me:  “Are you ready to type it out?”

Emma:  Yes

I lightly supported her arm, resetting it when necessary.  She typed it out on the iPad pretty much in one sitting, and did a very good job in precision with the delicate keys of the iPad notepad, which is what we’ve been using.  It was her teacher that recommended that maybe she would prefer having a color background, as opposed to white, to type on.  And it turns out that she does prefer it.  Not to mention it’s yellow!

A couple days ago, I asked her if I could put it on the blog and she typed out yes.

When I was retyping it for the blog, I decided to ask her about punctuation in the poem.  The thing about her spelling or typing out is that we haven’t begun to use spaces or punctuation yet.

Me:  “Do you want me to add punctuation and then you can tell me what you think?”

Emma:  add the punctuation

I added it where I thought maybe it should go.  I’m no english professor so I just went with the flow.  I read it to her and showed her where I added the periods and so on.

Emma:  reread it

So I read it again.

Emma:  I approve

Me:  “Would you like to add a picture to this one, too?”  It’s kind of a thing we’ve done since her first poem – picking out a picture to go with the poem.  It’s pretty thrilling to see what images she comes up with.  Very artsy fartsy and satisfying for this “gay and happy artist”, as Emma called me once.

Emma:  water

Me:  “Really?”  Interesting as always.  “What kind of water – the ocean?  just water?”

Emma:  Water trickling

Me:  “Why trickling water?”

Emma:  it is slow when water trickles

Me:  “Is this because you feel like you are slow, Emma?”

Emma:  Yes

So I took this out in our yard.  It’s hard to find water that trickles, but when you do, it’s beautiful indeed.

October 10, 2010 / paperkids

Yellow

Oh, the power of a song.  As I’ve said before we listen to A LOT of music in this house.  Even though John Mayer is still Emma’s favorite she loves lots and lots of music.  Both of the kids do.  One day, we had a playlist going and Yellow by Coldplay came on.  I hadn’t heard it in a while and I got excited and looked at Emma.  Yellow, after all, is her favorite color.  When I had asked her why, she typed out : It reminds me of sunshine.

Me:  “Emma, listen to this song.  It’s called Yellow!”

While it played, I was filled with emotion.  I just couldn’t help it.  I thought about how long I had wanted to know all those small things like her favorite color.   The song brought all the indescribable joy to the surface of my heart again.  Not a day goes by that I don’t still feel  awe and thankfulness to God who has given me what I had so desperately wanted.  And honestly much more than I had hoped for.  I thought of the words to the song and how it’s like some sweet love song written just for her from our great Creator.  And now everywhere I go, it seems to be playing – in restaurants, stores, in the car.  It will always have special meaning to me now.

When it was over, I tried to wipe the tears away, and went to sit down next to Emma with the keyboard.

Me:  “What did you think, Emma?”

Emma:   I love it

Me:  “What do you want to listen to now?”

Emma:  Yellow again

October 8, 2010 / paperkids

Reach to teach : it’s a Good Idea

I got an email from from a friend the other day in regards to a pilot project called Reach to Teach, created by  HUS (Help Us Speak), a  non-profit organization.  The project entails a  literacy lab in Los Angeles which will be set up to help special needs children.  It is in the running for 50K in the  Pepsi Refresh giveaway.  Reach to Teach is a  literacy based, technology rich, learning environment for learners who are low communicative and nonverbal.  Many times, for  those children who are nonverbal or have severe communication deficits due to a number of disabilities such as autism and cerebral palsy, literacy is overlooked or replaced with more functional skills.  Many times schools do not always have the tools they need to reach these special children.  This program will focus on bringing reading and communication skills to these individuals who need extra support and specialized teaching.  There are a lot of great ideas out there, no doubt, but when I began to read about this lab, I just couldn’t help but to grin from ear to ear.  This, I thought, is EXACTLY what we need!

The Goals of Reach to Teach are:

  • teach reading readiness skills to learners with special needs
  • adapt and modify educational material for appropriate access
  • create a learning and teaching model for each learner
  • provide specialized training for parents, educators, professionals

 

When Emma was four years old and in the midst of many sleepless nights and tantrums, I had a dear friend who volunteered her time to help teach Emma and I PECS (Picture Exchange System).  Amanda worked for the Center for Autism and Related Disabilities (CARD) in Tampa which served to help support parents and help to educate.  She went above and beyond in helping to set us up with Emma’s first form of communication.  For the first time, she was able to let us know what she wanted to eat, do, and where she wanted to go.  It really helped her and gave her some control and a small voice.

After we moved back to California when Emma was around 5, she began ABA (applied behavior analysis) therapy which furthered her expressive as she began to learn how to imitate and follow direction while also aquiring more functional skills.  She was in a good school program as well and continued to use PECS.  When she was six or seven, with the help of Kelly, who was with dynavox at the time, and Emma’s school speech pathologist and teacher, we were able to get  a Dynavox V, which is an AAC device (augmented communication) with voice output.  She was able to navigate through pages of PECS on this small portable computer and when she would push the picture, it would talk:  “I want juice.”

When she was in second grade, Emma was introduced to a reading program called Reading Mastery.  I’ve since discovered that this was when Emma learned how to read.  At the time, she was not able to communicate the extent of what she’d learned in that class.  It wasn’t until I was able to tap into this with her after I studied and watched Soma working with Dov using the pointing method, that we were able to bring it all together.

Yesterday I told Emma about Reach to Teach.  I asked her if she felt like the PECS and the dynavox helped her.

Emma:  yes

Me:  “What do you feel like helped you the most to get where you are?”

Emma:  the reading program

I know that no two kids are alike and that every child has their own unique journey of learning and communication.  All the more reason for those nonverbal and low communicative children to be given the opportunity to get the extra help they need to go the distance.   Having the ability to read and having a way to express your thoughts and desires is something that we all take for granted.  I can’t express enough how important I feel these skills are to children such as these.  How they long for the world  to keep believing in them and lending support.  As you see, this has been a journey  for Emma, as it is with every child that must cross valleys and climb mountains in order to find their voice.   They are not giving up and neither should we.   I am putting my vote in every day!

If you would like to also, vote everyday in three ways through the month of October here is the link to the Pepsi Refresh Project:

  • 1. Vote on the WEB :  http://www.refresheverything.com/reachtoteachhus
  • 2. Vote on facebook
  • 3. text to vote: 73774 message: 103039

Here is a flyer for HUS if you would like more info HUS flyer

To quote the HUS organization:  “Literacy is a gift that lasts a lifetime!”  I couldn’t agree more.

October 7, 2010 / paperkids

Islands

Emma had a dentist appointment recently and her disorganized mother mixed up the time..and actually the day as well. Not hard to believe if you know me. But they were able to squeeze her in at a later time. We had a few hours to spare and Jared was coming home from work so the three of us decided to go to Emma’s favorite place to eat : Islands.
It was really nice as it felt unexpected and special, not to mention quieter since Hayden wasn’t with us. HA! I had the iPad so I asked Emma if she was ready for the dentist.

Emma: Will you use your rare talents?

Me: “What do you mean?”

Emma: with the iPad

Me: “What do you mean – with the dentist?”

Emma: yes

Me: “What do you mean my rare talents? You are the one with the incredible talent.”

I smiled at her whimsical choice of words. She seemed to be teasing with me a little. Jared and I continued talking about the dentist and the daily affairs as we jabbered on and on like we usually do. Sometimes, I have to remind myself that she is listening to every word we say even when she doesn’t appear to be listening.

She was devouring her chicken tenders and had one in each hand as I started in on the questions.

Me: “Are you nervous about seeing the dentist? Do you think you’ll communicate with him?”

I held up the iPad.  Emma, ever so slowly, put both chicken tenders down and reached up.

Emma: I am trying to eat

Jared and I both let out a laugh. My God, she was right. I was bombarding her with questions with her hands and mouth full of food.

Jared proceeded to let out a yawn and started talking about how tired he was. That conversation went on for a couple minutes. Then Emma reached out to the iPad.

Emma: Rest in God

Me: “Oh, Emma. I love that.”

Including her in our conversations is something that is so new for us. It still feels surreal. It takes time for her to spell everything out at this time. I hope that the effort she has to put forth in order to keep with us babblers is worth it to her. I guess when I consider what this has given her so far – being able to eat at her favorite restaurant, comment on a conversation, or share a bit of her spunky humor – I know that it’s worth the difficulty.

Me: “Emma, what do you like about Islands anyway?”

Emma: the palm trees

Tonight we decided to take the kids out to eat while our car was in the shop.

Me:  “Where would you like to go eat, Emma?”

Emma:  I prefer Islands

Me:  “Are you sure you don’t want to go to Kabuki’s instead?” (okay, obviously that’s where I wanted to go!)

Emma:  I am partial to Islands

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