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October 4, 2010 / paperkids

The sea between us

I recently found a poem that I wrote a while back, way before Emma started communicating.  I had been working on it over the course of last year, off and on, and I’m still not sure whether I really finished it.   I hadn’t written anything in a long time.   This was during a pretty low point when things were very hard and I was truly depressed.   I think I must’ve been trying to keep hope alive.   What words can really describe how I felt?  But finding this again reminded me of that time.  I longed not only to reach and understand Emma, but to pull myself out of the shadows and into the light.  I was becoming more and more aware of how my  sadness might be weighing heavy on the children.

I wasn’t sure if I wanted to share it.  This morning I held up the ipad to Emma.  She reached out.

Emma:  Read a poem

Me:  “I just found this poem I wrote a long time ago, before you were communicating like this.  Do you want me to read it?”

Emma:  yes

So I read it to her.

Emma:  I love it

Me:  “Should I put it on the blog?”

Emma:  Yes

Reading this again, I realize more than ever that nothing was lost. Emma has always been here with me and always will.

September 28, 2010 / paperkids

Spelling it out

Our house has become keyboard central! Paper keyboards, computer keyboards, the dynavox keyboard, and the iPad. I can’t count the times I pick one up everyday.   I am always looking for an opportunity to ask Emma something about anything…”How did you sleep?” … “What do you want to do?”….. “What would you like to listen to?”…..”Tell me what you’re thinking?”…..  Tell me, tell me….
Many times I just hold it in front of her and  wait until she reaches out.   The iPad has been great for helping her to be more precise.  Seriously, her typing has greatly improved from using the iPad.  But she still prefers the paper keyboard.  She typed out:  I prefer paper… it feels better.


I think she might be feeling some pressure at this point.   Many times she’s  lost her patience with me and vice versa.  There’s been moments where I’ve wondered if this whole communicating thing was upsetting her whole world  – overwhelming her.  Was it feeling like too much of a burden for her?   I would completely understand if she’s over me at this point.   I’m even driving myself a little nutty with the whole thing. There’s just so much I want to know – that I haven’t been able to know.   Well, what’s one more question…

Me: “Emma, do you still like communicating with me?”

Emma: Yes

I felt some relief.  I guess I hadn’t scared her away completely.  Even though I knew it was a dumb question, I’m glad I asked it.

Me: “That’s good. I guess I feel like I’ve been nagging you lately and I’m always the one asking all the questions. Do you have anything you’d like to ask me?”

Emma: Yes

Me: “What would you like to know?!”

Emma:  Are you tired of reseting my hand?

Me: “No!  Of course not!   I love it – I could do it all day!” (And I literally feel like I do, especially on the weekends when we have more time together)

The “reseting” is in reference to those gentle hand squeezes that I do in between letters sometimes.  But I don’t do them nearly like I used to.  Emma is requiring less and less support and most of the time I am just lightly holding her arm below her elbow.

Me: “Why? Do I seem like I’m tired of reseting your hand?”.

Emma:  You seem anxious for me to want to type

Me:  “Well, I am – but just because I want to hear what you have to say.  I just want to talk with you all the time.  I love doing it.”

I was a little caught off guard with her question and her response.  But not surprised really.  She’d said something like this just a week or so ago  and obviously it was still something she was thinking about – still feeling the pressure from me in some way.  Or at least she was feeling my anxiousness.

Me:  “Emma, the only reason I want you to type is so that I can hear your voice.  I want to so bad.   And I feel like it’s my job to help you practice typing.  That’s what moms do, right?   I push you to type so that you can have ….  ”

What was the word I was looking for?

Me:  “…the freedom.  You know, the freedom to type whenever – for whoever – you want someday.”

This is an interesting journey.  It’s thick with many unexpected layers of emotion – and also lessons.  I sort of feel clueless in many ways about parenting a nine year old.  And Emma seems way older than a nine year old in many ways.  We haven’t been able to “talk” in all these years.   I feel like I’m making up for  lost time.  It’s strange, I know her so well that many times I’ve known what she’s going to spell out before she types it.  But then other times, like tonight, I have no clue what she’s going to type out …..

Me:  “Did you have a good day?”

Emma:  I appreciate typing

Me:  “I know!  How does it feel?  What would you say it’s given you?”

Emma:  It has given everything to me

Me:  “It has given everything to me, too.”

September 22, 2010 / paperkids

Reason

A couple weeks ago, I once again asked Emma if she had any poems she’d like to type out.  She proceeded to spell out another  poem, this one about reason.  It was profound.

Emma:  I don’t want you to put it on the blog

I felt a little disappointed, but I have been ready for her to tell me this.  She’s not always going to want to share everything.

Me:  “You don’t want me to share it?  Okay.  Don’t worry, I won’t.”

I wasn’t really sure why.  Maybe because it was too personal or contemplative.  I read over it a couple times in fascination and then copied it from the speak it app to paste it into my notepad.  Well, before I knew what was happening –  DELETE!!!

And after a few frantic moments I realized that it was gone.  Forever.  I wouldn’t be able to retrieve it.  Why, oh why, hadn’t I memorized it??  We backtracked and was able to get pretty much all the words right, but somehow it wasn’t the same – different placement maybe.  My version just couldn’t compare with her original.  Jared and I were pretty upset about the whole thing.  Even Emma couldn’t recall it exactly, but she didn’t seem bothered at all.   I didn’t want to pressure her too much so I said that we would try to work on recapturing it again another time.

So over the next week, I would sit down with her and knock out a line or two.  This time, the poem had changed a little.  I loved it just the same and maybe more.  It reminded me of my own process of writing and how I tweak my poems sometimes over the course of a year or more.  I had some poems I never finished.  That’s one of the wonderful things about creating with words.  You can make it want you want it to be and change it whenever you feel the urge.  Only for Emma, that process is a little different.  She can’t just work on typing it out whenever she wants – she still needs me to sit with her and hold her hand.

The other day I asked Emma if she had any idea what we could put on the blog.

Emma:  Reason poem

Me:  “I thought you said you didn’t want to share that one?”

Emma:  I am ready to share it

Me:  “Okay!  Let’s finish it up.”

So Emma was able to finally finish this revised version of her first poem and would like to share it after all.  She is pleased with it and it is now finished with no chance of being deleted (I wrote it down this time – hard copy).  I am a pretty big fan of her poetry and her perseverance over each letter.   I’m glad she changed her mind:)

Me:  “Do you want to put a picture with the poem?”

Emma:  Yes

Me:  “What do you have in mind?”

Emma:  paper airplane

Me:  “Wow!  Why a paper airplane?”

Emma:  It reacts with the wind

I found this one online and she liked it:)

September 20, 2010 / paperkids

The Helper

The other day I looked at Emma’s eye and it had a small red  area on the surface of her eyeball.  It looked almost punctured and it  sent me into a panic because I was sure that she had poked herself or scratched her cornea and this was her EYE after all!!  What if she went blind or needed surgery?  This is ALWAYS my train of thinking when it comes to the kids – I really take myself there!  I am a major worrier!  It only seems to get worse with age and it’s the one thing that I never seem to lack.

Me:  “Does your eye hurt?”

Emma:  yes

Me:  “How did it happen?”

Emma was  unclear as to how it happened..  Sometimes it’s not always easy to spell things out.  I already knew I wouldn’t be able to rest until I took her into the doctor.

I think about how my worry has effected me over the years.  I reflect on all the hours spent in a state of crazed panic and fear over the children.  How many years would those moments add up to?   So many times I would lay awake at night and wonder and stress over Emma and how she felt and what she knew and how I could teach her.    Making contact with her finally was like waking up with a large weight gone.

But even so, every day there is something new to stress over.  As we sat in the doctor’s office, I prepared the ipad and asked Emma if she was worried, too.

Me:  “Are you worried about your eye?”

Emma:  No

Me:  “Really?  That’s good!  I’m glad  to hear that.”

I put my arm around her.  She reached out to type more.

Emma:  I know that God is ready to help me

Where does this incredible trust in God come from?!    When I think of everything that Emma has dealt with in her life so far,  I marvel that she wouldn’t be ten times more anxious and fearful than I am.  And yet, in the midst of her struggles to fit into our world, she has this peace about her that continues to astound me.

My mom always said that  faith is a gift from God.  If that’s the case maybe faith is one of the greatest gifts we could ask for.  Certainly when I think of Emma, I can’t help but to be thankful that she has this to help her out.  Yep, I’ve been thinking A LOT about faith lately…

Now faith is being sure of what we hope for and certain of what we do not see.    – Heb 11:1

Am I sure of what I hope for?   It’s a really interesting question that I continue to reflect on.

Emma’s eye, it turned out, was just a mild inflammation that should go away in a few weeks.

Again, the uncomplicated confidence and trust of this child reminds me that we can overcome anything through our great Helper  – that life is made sweeter by faith and the trust that if we let go, the arms of God reach out to embrace us for eternity.

September 16, 2010 / paperkids

Being there

This past weekend I went away  and my awesome husband watched the kids.  This wasn’t the first time I’ve taken a little trip away and usually everything is fine.  This time when I came back, it was harder to get back into the “groove” with Emma.  I came home so ready to communicate with her and eager to read what she would spell out for me.  She still has a pretty hard time typing for Jared – like I said, it’s a zone that we get into together.

In times like this, when it’s more difficult for her, it’s hard for me not to feel nervous.  I know that I’ve mentioned it before, but I struggle with the fear of not wanting it all to end.  I try to stay conscious of  that balance.  I kept asking questions and grabbing her arm and it seemed very slow going.

Me:  Did you miss me?

Emma:  yes

As I was  bombarding her with questions, it seemed like I just couldn’t find the zone.  Where had it gone?  When would we find it again?  I was feeling anxious.  She wasn’t really able to type out much.

Me:  “Are you having a hard time communicating?”

Emma:  yes

Thank God for a simple yes.  I remember how many years I longed to get that small word from Emma because with it, you can discover so much of what you’d need to know.

As it is, whenever I’ve gone away, I always feel moved to make up for lost time somehow.  I kept trying to get more typing out of her, but it was hard.  I knew I should expect this from time to time.  We all have our moments and I try so hard to remember it, but my fear feeling mixes with sadness for her.   I clapped my hands and happily tried to motivate Emma to work on her typing practice.  I felt my desperation and I know she did too.  At the computer, she  struggled and got upset.  I knew we were done almost as soon as we started.

Me:  “Do you want to stop doing this for now?”

Emma:  Yes

Later, when we were all outside and all was calm, I came up to her with the paper keyboard.

Me:  “Are you mad at me, Emma?”

Emma:  I realize that you are ready for me to type independently

I was a little relieved because this was definitely a clear sentence.  And what she said really touched me.   I knew that she had felt every bit of my panic and desperation along with her own disappointment in herself.  I knew that it was my opportunity to clear the air for both of us.  I really looked at her.

Me:  “Emma, if you want to, you can type this way on this paper keyboard forever, okay?  I just want to be there.  I just want you to be happy and be able to tell me what you want to tell me.”

And as soon as I said it, I had to hold back the tears because it just felt right to say it – to let her know what maybe I really hadn’t before – and hope that it really seeped into both of us.   I know that we’ll hit some bumps in the road and maybe not everyone will always believe what Emma “says” with her fingertips.  That idea terrifies me – it fills me with anxiety.  Sometimes I get caught up in how things “are supposed to go” on this journey we’re on.  I start to wonder: What will others think? Seriously, I should know better!   I can’t lose sight that  the best and only thing I can really do is just be there for her – holding her  hand or arm for the rest of our lives if need be.  I don’t think she’ll need the crutch of my grasp always. Maybe instead of wanting to rush things along, I should enjoy this very magical time between us when I am blessed with her beautiful words as they flow from her heart to mine.

September 13, 2010 / paperkids

Carly’s Voice

I know I’ve talked a little bit about Carly Fleischmann and posted links to her website.  I keep thinking about her lately.   She brought so much hope and enlightenment to me through her story.  I’ll never forget the moment I saw the  20/20 video of her and watched as this “severely autistic” nonverbal child began to type out her thoughts and feelings on a keyboard.  This was a couple years ago and at that time, I looked on, tears running down my face, in complete awe and amazement.  Here was another girl, similar to Emma, who had found her voice.  That seed, which had first been planted before with the video of Sue Rubin, planted itself even firmer into my mind.

“It is hard to be autistic because no one understands me. People look at me and assume I am dumb because I can’t talk or I act differently than them. I think people get scared with things that look or seem different than them.” – Carly Fleischmann

Carly’s parents were not aware that she could spell either.  She surprised everyone at the age of eleven when one day she typed a couple of words on her computer.  That was several years ago and she continues to inform us all on her life as a young woman and student.  I follow her on Facebook and Twitter and am so thankful for every tidbit of information she can dish out for these eager ears.  She is a true inspiration and advocate for the acceptance and respect for individuals with autism.   I wish again, that I could tell this amazing person how she has effected our family’s life.  Maybe someday Emma can tell her.  After all, she sat close by to the  computer as well two years ago or so when I watched the video.  I know that these stories help to encourage her to not give up and showed her what was possible.

Carly wants to tell others to believe in themselves and not to give up: “I think the only thing I can say is don’t give up.  Your inner voice will find its way out.  Mine did.”

Carly was finally able to attend a class in regular education this year in high school for the first time.   She shared on her facebook page “I proved last year that i definitely deserved all along to be in a typical school. It wont be easy with my ocd and autism but I am ready for it”. I know that she will continue to shine and give much hope to all who live with autism and to those who support them.

You rock, Carly!!

Me:  “What is your hope for the future of autism?”

Emma:  Respect for differences

That may be the biggest thing we can strive for in this great and diverse community of humanity!

September 8, 2010 / paperkids

I admire your rewire

Every once in a while, I ask Emma if she has any poems she’d like to spell out.  Every single time I’ve asked her, she’s typed out yes and I begin to jot down her poems as she spells them out.

This one  she typed out with me  holding her arm just below the elbow.  I don’t even think I did any of the hand “reset” squeezes that I have been doing.  Gradually, I’ve been giving her less and less support.  There were times when she held the keys down too long or accidentally hit a key.  This is a challenge for her and I am beyond proud of not only more independence in typing, but her amazing poetry.

I told her that I wanted to post this poem and asked her if she had a photo in mind to put with it.

Emma:  Yes

Me:  “What picture did you have in mind?”

Emma:  arrangement of wires

I thought it would be fun to take the photo ourselves as kind of a visual arts project.   We found some wires, I took a couple pics and she picked which one would go with her poem.

One of the first things Emma ever spelled out for me was this statement: I yearn to tell you that I belong

She’s typed it out a few times now and I can’t help but reflect on what she is conveying with these words.   She wants the whole world to know that she belongs.  But I wanted to ask her myself what she meant by it.

Emma:  that I appreciate being in this kind of world

Me:  “What kind of world is that?”

Emma:  typically tremendous

Once again, not the response I was expecting.  Typically tremendous is not the kind of description people usually give to this kind of world we live in.  But Emma appreciates it – and maybe so should I more than ever since God has given me this miracle of mine.

I admire your rewire, Emma.

September 6, 2010 / paperkids

Just the way you are

Our son, Hayden, just turned five years old.  I remember when we were thinking about having another child, I was a little overwhelmed by the thought at that time.  Emma was about 3 1/2 years old then and I was consumed with all things autism.  But deep in my heart there was no doubt that I really wanted Emma to have a brother.  I wanted her to have someone to share her childhood with, and someone who could help her and be there for her.

I couldn’t help but think of the wonderful closeness my younger brother and I shared.  Our childhood spent together is so precious to me and ended all too soon when he passed away at the age of 13.  It’s hard not to think of your own childhood when you start a family.  It left me always wanting someday for my own children to have such companionship in their lives.

The possibility that we could have another child with autism  wasn’t really in my mind.   I just wasn’t sure how much I would be able to give to another child.

But when Hayden was born, he brought a whole bunch of life and sunshine into our home. He is the happiest and most and fun-loving child I’ve ever known – such a sweetheart with the sweetest cherub cheeks that I could just pinch all day long.

And just like Emma, Hayden was also diagnosed with autism.  It came when he was around 15 months old during which time he was quickly thrown into all the early interventions as soon as possible.  And like Emma, I really didn’t  see the earliest signs of autism that I could have seen in Hayden.  Maybe some people might say “should have” .   Maybe I just didn’t really want to.  This is when things got really hard for me emotionally.  Hayden’s diagnosis hit us hard.

Despite the kids both having this label we call autism, they could not be any more different. They  always happily run around each other.  They haven’t always appeared to be on the same page – when Hayden wanted Emma’s attention, she wasn’t giving it and vice versa.  But the bond is natural and strong.  Their closeness isn’t hard to see and it brings joy to my heart.

One day Hayden was in his room with the ABA therapist and not happy about it at that moment.  Emma and I sat on the couch with the keyboard.

Me:  “Do you think Hayden still needs therapy?”

Emma:  Yes.

and then she typed more..

Emma:  I wish he talked more

I was caught off guard by this comment.   She was expressing sincere worry and love for her little brother and this was the first time I had seen it this way.  She was the big sister.

Me:  “Do you think he will?”

Emma:  I don’t know

Me:  “Do you think he understands everything that we are saying to him?”

Emma:  Yes

It was then that I realized something else.  While all of this is going on with Emma, I have still been having a hard time thinking differently about Hayden.  I’m still this confused, desperate and stressed out mom when it comes to him.  Yet Emma believes in him.  She knows that he understands!

What touches me most is knowing that she can relate to him.  She can empathize and understand him.  What a gift that is!.  It’s helping me to have a whole new outlook on having two children with autism.

I asked her if she wanted to write a note to him on his birthday.  She typed it out on the computer and did it with minimal assistance I might add.

Hayden

You are fun and sweet just the way you are

Sometimes our kids teach us things when we aren’t expecting it.  There’s such beauty in Emma’s unconditional respect, love and acceptance for her  brother just the way he is. It reminds me that we should all be so lucky to have someone love us just as we are.  My children are blessed indeed to have each other.

September 3, 2010 / paperkids

Raggedy keyboard

Emma has begun using her new iPad, which is just in time since her favorite paper keyboard looks like it went through a lawn mower.  Her teacher gave it to me and it has been her favorite  because according to Emma, it is colorful.  Somewhere along the line, Hayden began using it as his favorite new stim toy and that was the beginning of the end of it.  He always manages to get his happy hands on it.

The iPad is a lot different from the paper keyboards she’s been using and also a little different from an actual keyboard. The letters are touch sensitive, which is great because Emma barely has to touch it.   She has to be precise, though, and that takes some major effort.  It also forces her to hit the letters more directly, which might help her with pointing.  I put music on it and some fun apps that I’m hoping will encourage her to want to play games.  There are a lot of possibilities with it!  I’ve also been able to find a cheap ($1.99 – thank you Angela!) app that is a type to speak keyboard called Speak It. But the voice is too old as Emma put it. I’m still considering getting Proloquo2go for the iPad, an application designed for communication, that uses picture symbols and a keyboard and talks. it’s a reasonable alternative to some of the more expensive AAC (augmentative communication) devices. We have used the Dynavox V for Emma the last couple years and it’s powerful, but it isn’t quite as portable as we’d like and is very expensive if you purchase one.   This is why I think that the iPad is a great way to go.

This world of letters and fingers and keyboards can be a little overwhelming.  I’m having to keep my patience in check and remember that we just started this whole thing a short four months ago.  I have to learn when to push and when to lay off.   I want so badly for her to be able to say everything and anything she wants to, whenever she wants to. I want it so badly that I’m not always careful about how much pressure I put on her.

I see the effort Emma puts into every letter – how difficult it can be for her.   Tito Mukhopadhyay (you knew I’d mention him again) learned how to write by about five or six with the help of his mother, who tied a pencil to his hand and taught him how.  In his book, he tells of the trials of learning how to write and describes what it was like during that time….

“Every time I held the pencil, I had to focus all my concentration on the action.  My senses were strained by practicing holding the pencil, resulting in discomfort, the kind you feel when the hair of your legs are stroked in the opposite direction of their growth.  It was like wearing a new pair of shoes.

…Did I want to write?  Of course, I did.

So why did I drop the pencil again and again?  When my senses are overstimulated, there is no stopping them.  My senses are so heightened that they bury every bit of reason.   I was overstimulated by my sensory defenses against the pencil.

– taken from How Can I Talk If My Lips Don’t Move by Tito     Mulkhopadhyay

But Tito did learn how to write despite his challenges and wrote several books.  This is a boy who was not even allowed to attend school.

This will be a journey in itself for us both. There are good days and bad. Days where all Emma can type is I am tired. The last week has been tough for her.  She struggles to type anything, her hand unsteady and her frustration very evident.

Emma: I am off today

I realized that she  feels the pressure and expects herself to succeed.  And I have to try not to be the pushy stage mom waiting in the wings, keyboard in hand, ready to shove it in her face every second of the day!  It is a lot of hard work on her part!!!  I must maintain a balance between coaxing her to type, and making sure I’m there for her – ready  when she wants to type.

Last night I held up her favorite, raggedy paper keyboard that is too smashed up to even point to any more.  But Emma reached out to spell anyway…..

Emma:  Time to get a new keyboard

I guess the iPad is here just in time;)

August 31, 2010 / paperkids

Heaven

A couple of weeks ago I asked Emma if she had been thinking of any more poems she’d like to share.   I know that when I write a poem, I actually have it in my head for a while before I begin to write.  I had a feeling somehow that she did, too.  I held up the letter board:

Me:  “Do you have any more poems in mind that you want me to write down?”

Emma:  yes

Me:  “That’s great!  What’s the  name of your poem?  Do you know what it is?”

Emma:  Heaven

My pulse spiked.   I was so curious to have her spell it out, but she was off to school and I decided to wait a couple of days during a quiet moment to ask her for the rest of it.

Watching her spell anything out feels like a dream.  Every word is thrilling.  Where will her fingers go? …  I’m always filled with wonder.   She began to spell out her poem.   I watched her fingertips flow over the letters so easily –  faster than usual.  I was in  awe as I read her words.   It was more than beautiful, the word I praised it with.  I really didn’t even know what to say……I’m not sure I have words for this one.  Some things are beyond words…

Me:   “When you say, ‘I’, who do you mean?”

Emma:  God

All that week I couldn’t stop thinking about her poem.  It was hard to even sleep because my mind was consumed –  deeply affected.    A couple days after she spelled it out, I just had to ask her some questions about it.

Me:  “Emma, why did you use the word I instead of God in your poem?”

Emma:  So the reader will feel close to God

Me:  “Why did you call the poem Heaven?”

Emma:  I am your reason for everything so I am your heaven

Wow.

Me:  “That is really profound, Emma.  Has God ever spoken to you?”

Emma:  yes

Me:  “Could you hear him with your ears?”

Emma:  yes

Me:  “Really?  What did he say?”

Emma:  I will always take care of you

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