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August 29, 2010 / paperkids

Are you mad at me??!

Me:  “Are you mad at me?”

Emma:  No

When Emma first began communicating in May of this year, it seemed to coincide with some particularly aggressive behavior on her part.  I wasn’t going to write about it because I wasn’t sure that Emma wanted me to talk about it.  And these times flow in and out in phases – good weeks and bad, good days and bad.

Let me just say that I want to be honest in this blog.  And, trust me, I am.  I bare my soul on here and I even occasionally cry when writing my entries (although now I have to be more careful since I’m crying over my swanky cordless keyboard).  This has been a wonderful way for me to express myself and at the same time, allow Emma to express herself.   It feels great for both of us.  But I first and foremost want to stay fair and true to her.  I never want to say anything about her that would make her feel bad or exposed or exploited.  I will let her save all those dirty secrets for her book that she writes someday.  I know it’s coming!!  So I won’t ever share anything on here that hasn’t been Emma approved.  I want her to know that she can trust me and know that I respect her as my daughter and the wonderful person that I think she is.   I will always put her feelings first.

We talked  not too long ago about sharing this story about behaviors because I think it’s important.  And so does she.

I couldn’t begin to understand why Emma’s behaviors were getting aggressive – after all, she was extremely happy that she was communicating after all!!!  What could she possibly be upset about?  And for no apparent reason, she was lashing out at me, scratching, trying to bite, and pinching.

Every single time, I’d ask her,

“What’s wrong?!!!  Are you mad at me?!!!”

Emma:  no

Me:  “Then why are you hurting me?”

Emma:  I am sorry

Me: “Can you help it?”

Emma:  I do not have any control over my body

Me:  “Can you re-direct it onto something else?”

Emma:  Of course not  if I knew how I would

Some days are harder for her than others and I sometimes get  really upset and very angry with her.  It’s hard to understand.  One minute we’re sitting there relaxing or “chatting” and the next minute, she’s grabbing my neck.

And every time she’d reach out and spell I am sorry on the letter board… and I would feel really bad for yelling.  I would also feel horrible for her.  She was telling me that she couldn’t help it, but my brain was having such a hard time grasping the concept.

I started to reflect on Carly Fleischmann and how on her website, she has some writings where she rants to her clinical director of  the struggles with her outward behaviors.  And then I thought of Tito again and how in his book he had written  about his struggles with motor planning and his movements.

Recently, we had a hard day.  I think we were all feeling the summer blues.  The behaviors were pretty bad and at some point, I just broke down.  I sat on the couch and cried like a baby.  All this progress we were making and there was all this aggression towards me.   I was trying so hard to understand it.  Emma was sitting there next to me and she started laughing.  My first reaction was to get more upset and just a little angry.

Me:  “Do you think this is funny, Emma?”

I held up the keyboard.

Emma:  no

Me:  “Do you mean to laugh?”

Emma:  no

Me:  “How do you feel inside?”

Emma:  I am crying inside

Seeing the words Emma spells out has forced me to change the way I view many of  those behaviors.  I have had to consciously look at them in a different light – one that I don’t see with my eyes.   I think there are some innocent and understandable misconceptions about those “bad” behaviors that our children sometimes display.

I just want give an  alternate viewpoint – food for thought.  Let’s just give the benefit of the doubt to say, “Okay, maybe this child isn’t being “bad”, maybe they’re just having some impulse control issues and are not able to control their bodies that much today”  That’s not to say that every emotion or behavior is misunderstood, but people with autism have impulse reactions that they truly cannot control.   This, incidentally, is why medication works really well for many adults and children on the spectrum.  We haven’t done this yet for Emma, but I am not opposed to it.  My opinion comes from all the testimonies given by people who live with autism.  I think they deserve the right to be understood in a world that does not know or understand them fully.

Emma:  I am a tired girl

Me:  “Do you think that’s why you’re having so many behaviors?”

Emma:  yes

other related comments regarding moods/behavior by Emma:

I am thinking wrong

I am in a better mood today

I am utterly dead tired

I was on crack  (this one killed me!  When I asked her if she knew what it mean’t she spelled                                  out: ‘reference to drugs’ !)

Yesterday, Emma was grabbing me and trying to bite me.  I had already asked her several times whether she was mad at me or not.  And every time she’d spell out no.  But then she kept doing it and I was trying hard to keep my cool.

Me:  “Emma, are you mad at me?!”

Emma:  yes

Me:  “You are?  Tell me why.”

Emma:  For asking me if I am mad

August 26, 2010 / paperkids

The Teacher

Jared and I have this thing where we read to each other – as in out loud.  It  started in our first place when we didn’t have a tv for a while (this is completely shocking if you know me now!).  Over the years, we’ve read many books in a pretty big variety.  Everything from Kahlil Gibran, to Roald Dahl, to S.M’s Twilight  (okay, maybe that one more  than once),  to Yann Martel and more than a few  books on autism.   

 One day a couple years ago we thought, “Hey, lets read the Bible all the way through!”  It seemed like a pretty decent challenge.   I think we got held up somewhere around Chronicles in the Old Testament when the kids’ therapies and scheduling got crazy.  Let’s face it, that’s a lot of ground to cover.  And the Old Testament is not would I would call a light read. 

It’s funny because during that time, when we had moved on to other books, Emma would sometimes bring the Bible over to us or open it up.  I thought maybe she just liked the leather cover or touching the soft thin pages. 

We never really knew how much Emma listened to us.  Many times she would seem occupied with something else or leave the room altogether.  How could I have known that all that time she really was listening to us? 

When she began communicating, it became clear to me almost immediately that this child had a passion for God.   And she seems to want to share about it.  When I asked her about the Bible, she spelled out that “yes” she had been listening and liked it when we read.

Emma is all about pretending to be a teacher now.  Now I can spot the bus and class more clearly since she’s let me in on her pretend “paper play” world.  The other day, I noticed that she was carrying the Bible around with her stuffed animals.  When I held up the letterboard to her later on that day she reached out to spell unprompted…

Emma:  I am reading the bible to my class

Me:  “You are?!  Why?”

Emma:  It helps to help them reach into their hearts

Me:  “Oh, Emma!   That is such a beautiful way to put it.”

Emma:  You taught me to think in God’s love

  This child says things that I’ve never heard said.  I never thought of “thinking in God’s love” before.   So simple and so profound.  It brought me to tears.

Me:  “I did?!  Are you glad?”

Emma:  yes

Me:  “I”m so happy.”

Emma:   me too

I really can’t express what Emma’s words have meant to me.  It’s been much more than I would’ve expected.  I never really considered that the many times I read excerpts from the Bible, or said bedtime prayers, and even maybe the occasional grace at dinner, that she was listening so deeply to those words.  I’m not really sure that I was listening half the time.   Nor did I always believe what I was saying when I  told her that God was with her always. 

She was listening and she believed, even when I did not.  Those were words she took to heart. 

I know I’ve tried to teach her many things over the years, but she is teaching me so much more.  

So, needless to say, we’re back to reading the Good Book. 

The other  day, after reading the Psalms, Emma reached out to the letterboard:

Emma:  I lose myself in the Bible

I love her choice of words.

Emma’s favorite Psalm is 139….

August 25, 2010 / paperkids


Recently, we saw Inception in the theatre.  One of the themes in the movie (don’t worry, I won’t give anything away) is the inception, or the beginning, of an idea.  I got to thinking about the power of an idea.  Of  how the seed of an idea once planted in your mind can take root and really change the way you look at something forever. 

I couldn’t help but to think of Sue Rubin.   By the time Emma was three, she had fallen pretty heavily into autism.  For the next several years, I was completely overwhelmed and dumbfounded.  How could I reach her?  Could she be reached?   Was she capable of understanding? …..

Then I saw Autism is a World, a documentary about a young woman named Sue Rubin, who was severely autistic.  First of all, at that time, Emma was the only girl that I really knew personally with autism.  And second, this Sue Rubin was completely nonverbal, seemed to have many repetitive behaviors and stimms, had also been diagnosed with MR (mental retardation) and appeared to be maybe even more severely affected by her autism than Emma was. 

And she was COMMUNICATING!    Her deepest thougths, hopes and fears were being expressed by typing onto a little keyboard. I could NOT believe it when I saw it!   I could feel my mind re-wiring with this idea.  This was the first person with autism I had ever seen communicating like this.  It’s one of those moments that I will forever remember as the beginning of the revelation that this could really happen for Emma.  It was a knowledge that, once I saw and knew what was possible , I could not ignore it.   It gave me hope for years to come. 

Each person with autism who has shared their voice and their story has contributed to the hope that has kept this idea alive in my heart and mind.  When I asked Emma, she revealed that reading Tito’s Mulkopadyay”s book out loud to her, gave her hope and the drive to keep believing that it could happen. 

Sometimes things are not always as they would appear.  I was reminded of Sue Rubin again at Emma’s back to school night when her teacher shared how he was so deeply inspired by her.   I wonder if she has any idea how much she’s contributed to changing lives, if only by planting a seed in the  mind. 

Just to be able to express thoughts, hopes fears – it’s such a liberation that we all take for granted.   My hope is that more and more support will be given toward the use of FC (facilitated communication) for these amazing individuals who have no voice. 

Sue Rubin attended college and has presented at many seminars.  There are transcripts of her speeches on her website.

I wish I could tell Sue Rubin what an inspiration she is and how her “words” changed my perceptions forever.

I was telling Emma about her and showed her some of the documentary.  I asked Emma if she thought I should post it and she spelled out yes.  I asked her what she thought of it.

Emma:  I am trying to tell the world about autism

Watch all 5 parts on youtube. 

August 24, 2010 / paperkids

The cup that overflows

I definitely HAD to share this….

I got a call from my friend Amber the other day. It was so good to talk since it had been so long. I haven’t seen her in several years and, us both having children, we haven’t been able to catch up for over a year now.

I wanted to tell her all about Emma and the amazing thing that had happened to our family. I shared with her the blog in case she wanted to read about all the things Emma was doing and saying. She passed it on to her mom and apparently a lot of other people.

I received a wonderful comment from her mother, Rita, and had NO IDEA then what they were planning to do.

Being the kind of giving people that they both are, they were really looking for a something to do for us. Rita had asked Amber “What can we do?”

Well, I’ll tell you what they, and a few others, did for us. They  pitched in and purchased an iMac for our family and an iPad for Emma!!!!!!!!!!!!

WHOA!!! I could not believe it!! Our computer is about to die any day. Any one of my friends could tell you.   I was completely blown away and in tears basically… and really in shock. I’m still in shock!

I have to say that I feel like the blessings are piling up here.   To be honest, this  really  didn’t start out as the best year of my life. In fact,  the last couple years have been maybe the hardest of my life. I had felt so much hopelessness this year and last. I think maybe despair is the right word to use. I hate saying that word, but I think many people can relate.

When this whole thing happened with Emma, I thought, “Nothing could be better than this” It is the deepest desire of my heart coming to fruition.

But I’m surprised to feel that what has been maybe more impacting for me in all of this has been a sense of renewed belief – miracles do happen! God is alive and He cares about me.   I am loved beyond comprehension.  I realized that not only have things been NOT entirely in my control (as I’ve been feeling for years), but things are also beyond my understanding and imagination. The awe and thankfulness I feel in my heart is hard to put into words. And the crazy part is, the blessings just seem to keep coming!! It just feels like my cup is overflowing.

 And this kind of giving that I’ve experienced  is so powerful and inspirational that it makes me want to give more and more. What an amazing thing to ask of ourselves: “What can I do?” for someone else. That question can change the world, and more importantly, our hearts.

When I told Emma about this, she spelled out:

I am overjoyed

I can’t wait to thank everyone involved and I wish I could give you all a big hug!!! And thanks for all your beautiful comments that just continue to lift my soul. This whole thing has been REALLY good to share, and not to mention so great for Emma as well.

Thank you!!!!!!!!!!!!!!!

P.S. I think the iPad is going to be really amazing for Emma!! I have been wanting one SO bad for her. I’m beyond excited!!

August 22, 2010 / paperkids

An Education

I have been frazzled over the kids’ education ever since they started school. It seems like I’ve always been uncertain when it came to class placement or services – never seeming to be completely satisfied or feeling knowledgable enough. I’ve admired so much those warrior moms that would barge into the school and demand that their child be given this service or that. That’s never really been me.  Assertiveness was never one of my strong suits, although I’ve been forced into becoming a little more so over the years. I guess some of it is due to the fact that I have a hard time figuring out what’s “right” in any given situation. What’s going to be the best option, the “right” answer, or the decision that’s going to propel my kids in the right direction? Every decision I’ve made about them has felt HUGE!! And then once I do make a decision, I go over and over it, wondering whether it was the right one.

Emma, being nonverbal, I could never really ask her how her day went at school. I would find out at teacher conferences, IEP meetings, or notes sent home. We would set goals and I would freak out over them and tweak them and obsess. Because of her low expressive, the mastering of school goals has been very slow going. Some goals she seemed to have for years. I remembered thinking at some point that I wanted her to move forward even if we weren’t certain of what she understood. As many low-expressive children get older, education focuses less and less on academics and more on functional skills. It becomes functional vs. academic.
I had seen so many videos of nonverbal adults communicating these intelligent and profound thoughts that I tried to hold on to the belief that maybe that was a possibility.
I honestly wasn’t sure what Emma had been learning all these years. What did she know?
It was all just on paper wasn’t it? Her whole life.

I was suprised to find out that the teacher who’s class I thought Emma had  made the least progress in, happened to be her favorite. That was the year that a reading program, I believe it was called Reading Mastery, was introduced – brought in by this particular teacher because she had used the program before. Certainly, I had NO idea that Emma could read until a couple months ago. Mostly she was still working on identifying basic site words. I’m still trying to figure out how she knows how to multiply and divide!!

When I asked her why this particular teacher was her favorite she pointed out :

She tries to reach her class

When I asked her about it, she had pointed out that this was the class she had learned how to read in – I couldn’t have been more wrong about her progress in this class!!
I am going to have to send a note to this teacher and let her know what Emma “said” about her.  

I’ve since realized that maybe I havent always been right or fair to her teachers, who gave all of themselves five days a week to my children. I discovered that Emma, in fact, liked every single one of her teachers including her very first pre-k teacher, whom she could recall by name.  Every one of them made a difference and contributed to where Emma is today.

I think that those who choose to teach our special kids should really be encouraged and supported for their efforts. It takes a passion and certain kind of heart to sign up for the challenge. And hopefully the knowledge Emma’s communicated is proof that their hard work can be life- changing for their students.

I feel strongly about academic exposure for our children, no matter what we think they are capable of learning. If I’ve learned anything from this whole experience with Emma, it is that we cannot hold these kids back based on our perceptions or expectations of them!!

Emma: I am trying to understand the time

Me: “Are you working on “telling time” in school?

Emma: yes

Me: “What are you using?”

Emma: clock

Me: that’s great! I had a hard time understanding time when I was your age. Do you like Mr. K’s class?”

Emma: yes

Me: “Why?”

Emma: He teaches us like regular kids

I was telling my friend, Candy, about it and she got this for Emma. How about that?! A yellow watch!

August 18, 2010 / paperkids

The birthday note

My husband, Jared, recently celebrated his birthday – another birthday, he would call it.  And since Emma had started communicating, I thought, “Cool, I can see if she wants to spell out a message to him!”  I told her that I could make a card for him and she could spell out a note just for daddy.  And since I hadn’t actually gotten him anything myself, I thought a special note from Emma would more than make up for it.   In the past, we’ve made or bought cards and helped her sign them with her name and maybe do some coloring on them with stickers.  Crafts have never been her favorite activity.  Maybe she got that from her mommy!

Poor Jared.  I know he wants so badly to be able to have Emma spell out for him.  I was a little worried about it at first, but then I read that sometimes the person communicating may just feel more comfortable pointing for one person at first.  And that person just happens to be me. 

There are many things that one fears as a  parent of a child with autism.   New fears get added along the way of time.  And I think as the years go by, there are so many fears and worries built up that  you begin to function pretty well with the weight of it.   It is when a fear is lifted that you realize how it heavy it was.  Jared and I have sheltered MANY fears and worries in our hearts.  I’ve worried  mostly about the current situations: school, therapy, communication, so on…. 

But for Jared, the biggest fear he’s carried all these years has been– “If one day I suddenly died in an accident and never came home…How would she know that I hadn’t just abandoned her? Would she ever realize what had happened to me?  Will Emma feel utterly abandoned?” 

I can hear this dialoque in my head so clearly because I heard it from Jared so many times.  This is also coupled with the fear of who will be there for the children when we are gone.  In fact,  for many of my friends with special needs children, the fear of themselves dying stands above all other fears. 

I’m not really sure how most people talk about death with their kids.  My guess is that it happens whenever the subject gets brought up.  Emma being non-verbal, it never really got brought up, but we never really edited ourselves that much in front of her.   We just didn’t know for sure, like so many other things we’ve since discovered.

So, I sat down with Emma on the couch, keyboard in hand, and she spelled this out:

Tears in my eyes, I typed out the message  so I could print it out and put it on the card.  

Jared  was overcome with emotion when he opened the card.  Tears came to his eyes and I know that those words had lifted a weight that had been there for years. 

He said, “When I think of myself dying, she is always there by my bedside looking down at me.”  I had never heard him say this, so I was even more aware of how that note touched his heart.

I asked Emma if I could share this story and her note.  She spelled out “yes”.  Then she pointed out: 

I really get death

I know this may seem like a pretty heavy post, but it’s just another one of those moments that I feel compelled to share, if only for the reason that it might have given me some peace,  if I had’ve read it.  

For Jared, it was the best birthday gift ever!!

August 16, 2010 / paperkids

Independence tomorrow


Emma:  I want to type as you do

I  have been having Emma come to the keyboard on the computer for typing practice to work on trying to have her type independently.   As soon as I let go of her hand, it falters and she begins to hit random keys.   I can feel her frustration.

 I think about where we were two months ago and that jaw-dropping moment when we finally made contact with each other.   We had reached each other across the complex and mysterious sea of communication.  I see her upset now from time to time, so frustrated that it doesn’t seem  enough somehow.  That she wants to type as I do. I can only imagine what she must feel inside. 

And here I am, pounding  away on the keys as easily as breathing. I could feel the exclamation in her sentence.  She was angry. 

Me:  “I’ve been typing like this for a long time!  You can’t expect to type like this when you just started.  You  just started.  And you can’t get better unless you practice, right?”

I could hear the  confidence in my voice, but inside I felt the gravity of her disappointment.  Now that she had a means to finally “talk”, her method is slow and painstaking. 

I watched Carly Fleishman’s video recently on her website  and saw  the effort that went into her typing.   It seemed at times tedious for her,  interrupted by her sensory system.  Even Tito still sometimes needs the help of  his mother for a little support in writing, prompting him to sit or get his paper.   I think of all the  obstacles that these children and adults have to overcome for a simple slice of humanity.   Basic skills like washing hands, using a fork, sitting in a chair, and so on and so on, can take years to accomplish.  Now that Emma had accomplished maybe the most significant goal she’d had for herself -communication – she still needed me.

I have to admit that I felt nervous this year about sending her to school.  Even though I knew the teacher would be amazing and the class the perfect environment for her, she would be away from me and away from her ability to communicate with anyone.  She won’t spell for anyone, but me, with the exception of a “yes” and “no”.  There have been times, where I wondered how it might appear from an outside perspective.  It seems like everyone always has expectations and I have been worried that because she still needed me, others wouldn’t take it seriously.  I worried for her feelings.  I couldn’t bare the thought of it. 

But then I began to think of the last chapter in Tito Mukhopadhyay’s book  How Can I Talk if My Lips Don’t Move, titled Final Words.  It’s STILL hard for me to read that chapter without crying my eyes out because of the painful and beautiful honesty and truth of  it  on the subject of independence. He, himself, being non-verbal, affected with severe autism his whole life, had found a means by which to communicate through writing, with the help of his mother.  He writes about how he is often asked about whether he will live independently at some point in his life.   He contemplates:

I may achieve a goal, and I may look forward to achieving others, perhaps till the last day of my life.  I may rejoice in some moments, and I may wish some moments away in the process of working toward my goals.  While I work, there will be people around me, either to help me or not to help me,to judge me or not to judge me, to care about me or not to care about me, while I walk on the pathway of time through darkness and shade or light and it’s reflections.

Talking about independence makes me wonder, Who is truly independent in this world?  A farmer who grows his food is dependent on a baker, a barber, a doctor  and so on ……

How independent would I be? I might ask “How independent is he, or she, or that man on the street?”  Even the universe is not independent of any of those laws that bind it together. 

–  taken from Tito Mukhopadyay (How Can I Talk If My Lips Don’t Move)

         I could quote this whole book…and I may end up doing just that throughout these entries.   It was a powerful message for me about the nature of our independence.   It made me think  “Are any of us really doing it alone?”.   Maybe it’s okay to rely on, and in turn, be there for one another.  Isn’t that what love is?

I have now begun to look at myself as a translator for Emma, an  interpreter.   Now Emma needs me to help her with this particular skill, but soon she will be moving on to another.   And I think she is teaching me way more than I am teaching her. 

I told Emma about this post and read again this beautiful excerpt from Tito, whom she adores.  I asked her what her thoughts were about independence.

Emma:  I am trying to reach independence in my typing

Me:  “Do you believe it will happen?”

Emma:  yes

Me:  Can you think of a name we could call this entry?

Emma:  Independence tomorrow

Had to use it!!!!

August 14, 2010 / paperkids

Message from Emma

I may not have a video camera, but I do have an iPhone with video!  And after many, many failed uploads onto my ancient, maxed-out pc, I finally was able to download a video.  The quality and sound could be better since I had to perch it on some books and stuffed animals, but I just have to share it.  Emma agrees!  

As you can see, I give her a little support on her arm and I help her to “reset” her hand and fingers before each letter.  I think the effort and concentration she puts into this is  evident.  How we take for granted that we can so easily control our bodies – we don’t  give a second thought to a simple thing like hitting a letter key on a keyboard.  She even put a period after “hope”.   I’m so proud of her ~ and blessed by her thoughtfulness  towards other children like herself.  I’m still in awe! 

Disclaimer:  Emma does NOT like Twilight!  That would be my shirt that is way too small (probably because it’s made for a teenager)  She was not really thrilled about having this shirt on in the video.   I told her I’d clear that up!  HA!

August 13, 2010 / paperkids

A yellow backpack

As usual, I lagged behind on the first day of school.  I felt the nerves this morning due to all the change.  Hayden is starting kindegarten in a new school and Emma is off to fourth grade in a new school.  And of course, I saved all my big school shopping until last night  – the day before school!

Me:  Emma, what color backpack do you want me to get you?

Emma:  yellow

Of course!!   Yellow is, after all, her favorite color.  When you start looking though, you realize that they’re aren’t too many yellow backpacks.. .or yellow anything for that matter!

In target,  I just stood there staring at all the backpacks.  It was a little overwhelming.  I was just looking for yellow.  I decided on this checker black and yellow one mainly because a  teenage girl and her mother said they liked it and  almost bought it.  I guess she thought it was “cool” and I am completely clueless.  This has been the first shopping trip I’ve made where I felt like I was buying something “for” Emma.  Would she like it?  It was a unique experience for me, much as it must have been for Emma.  After all these years,  she would finally be able to say what she wanted and whether she liked it or not.  Wow!  I guess the pressure’s on now.  Better make sure it’s cool enough!  As I felt the frenzy of determined tweens and self-assured teens all around me, I couldn’t help but have  flashbacks of  how uncool I felt in childhood. 

When we got home, I was pretty excited to show her the somewhat yellow backpack and even though she didn’t appear  to notice, when I asked her, she said she liked it!  Whew!

Later I was showing it off to Jared, twirling it around – unzipping all the different compartments..

Me:  Isn’t this cool? 

Jared:  Yeah, that’s great!  Really cute!   Do you like it Emma? 

I went over to Emma and sat down.  She reached her hand out to the keyboard and I grabbed it lightly so she could point, getting ready to read what she wanted to say…

Emma:  Take off the tags

LOL!  I quickly ripped the tags off.  She doesn’t miss a thing.  Something tells me I’ve left a tag or two on before.

August 12, 2010 / paperkids


     Our kids have major SLEEP ISSUES!!!  As probably any parent of a child with autism will tell you,  sleep (or lack thereof) can be a HUGE problem in our kids’ lives.    I really wanted to talk about it on here, but, really I think that what I feel like sharing even more, is how this whole dialogue with Emma has given me more and more of the big three:  faith, hope and love.  

I decided to share this story because Emma has been “telling” me when she’s tired, and sometimes, when I don’t even ask.   I suppose she has also been aware of how  all those sleepless nights have effected her life.  So now, here she is, spelling it out for me.   Sometimes I just hold the paper keyboard up and she will reach out and  spell  I am tired at bedtime.   Recently, we had this conversation:


Emma:  I am tired

Me: “You are?”

Emma:  I used to be up all night

Me:  “I know.  Do you remember that one week that was so bad when we first moved here.  Was it because you couldn’t sleep?

Emma:  Yes

Emma has pretty much always had sleeplessness, even when she was a baby.  At two and three she would be wide awake in her room, many times laughing, for hours on end.  And for those who may not know, my son, Hayden (almost 5) also has autism, diagnosed at around 15 months old.  He has had the same sleep problems and many nights has been up for hours, if not the whole night.

When she was about six, Emma went through this horrific week of no sleep, where she was up ALL night!    Many parents I know  can relate.  At first we didn’t realize that she wasn’t sleeping and it was Jared who finally figured it out and said we needed to give her something for it.   That week was a nightmare.  She had deep circles under her eyes and her tantrums were so bad that I had to keep her home from school.  Why, oh, why didn’t I try melatonin much earlier?  Again, I can’t begin to count all the woulda-coulda-shouldas over the last nine years.  We finally gave her some melatonin and it worked great.  I guess I’ve always been one of these hesitant parents – hesitant to give my kids anything.  And Emma doesn’t swallow pills and won’t take anything unless you hide it in something.  And she’s good about sniffing things out let me tell you!  But she likes the chewable melatonin now.

FYI, Melatonin is a natural sleep hormone.  According to some studies,  children with autism show to have lower levels of their own body’s melatonin.  And melatonin is actually a pre-cursor to serotonin.  Anyway, I guess you could go really deep with the info ( and bogged down) .  But it worked for us and we’ve used it for both kids ever since.  But just like lots of others things, it doesn’t work for every child.  This spectrum of autism is a rainbow of individuality. 

And even with the melatonin, the kids are still up periodically for long periods of time.  I think Emma might be up at least once a night and sometimes ALL night  from time to time. 

Our conversation the  other morning is the reason why I said that this post isn’t really just about sleep issues, but another moment of enlightenment for yours truly…..  Emma had stayed in bed forever ( girl after my own heart) and I finally had to drag her out.  We sat on the couch and  I held up the keyboard and she started to spell:

Emma:  I am so tired

Me:  “Were you up last night?”

Emma:  No

Me:  “How did you sleep?”

Emma:  Really good

Me:  “Why do you think you slept so good?”

Emma:  Prayer

I haven’t been able to stop thinking about what she said.  Some things just really take you back and stay with you a while.  I felt like in that one word, prayer, was an answer – maybe the answer – to all the questions that have plaqued me and problems we’ve faced over the years.   It really feels like God’s been beating me over the head to say “rest in Me”.    That word rest is appropriate.    I feel like I’ve been exhausted with anxiety and unable to sleep myself for a long time now.   The weight of it all has held me down for so long. I have said so often,”no one is going to help these kids if I don’t?!”     I feel that God is trying to tell me “I have, I will, I AM“.   That He really does have us covered.  Can I accept that?!!   Do I really believe it enough to trust and let go?   Some times are harder than others.  Some days are  hard for our whole family – ups and downs.   I think I’m starting to let go a little more and more  in realizing that I didn’t do this for Emma.   That is a truth I just know in my heart.   And God’s  message through her is powerful to me – life changing.  

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