A Busy, but Happy, Week for Ella

April 22, 2012 — Debbie

I found out this week that this blog is a Babble.com nominee for Top 30 Autism Blogs for Parents 2012.

That’s really cool.  I’m not sure if I deserve it, but hey, I am very grateful that someone thought I did.     :)

If you would like to vote, go here,

then find the listing for this blog (it’s easy to find in the alphabetical tab listing),

and click the thumbs up I like this button beside of the blog title, Enduring the Silence.

There is nothing to sign up for and they don’t take your email address or anything like that.

Ella has had a really great week this week. She’s been so involved in interacting with the family and making lots of sounds. She also seems to be better understanding the connection between actions.

For example she has a tendency to get very frantic about food (one of many traits she never had pre-autism). I have to prepare food out of her sight, or she melts down during the process.  When I do get ready to feed her, I typically sit the bowl down, tie her hair back out of her face, and then feed her.  Usually she gets very excited when she sees the bowl, then becomes devastated and screams at an ear-piercing volume, when I sit the bowl down.  The time I spend pulling her hair back into a quick ponytail, is usually spent with her screaming in my face – very loudly.

But something nearly magical has happened.  She’s starting to understand the process of some things. Now when I sit the bowl down, she continues to smile.  She leans forward for me to tie her hair back and doesn’t scream in my face at all, while I do it. Because she now understands her food is coming.

That may sound like a tiny thing.  But it’s not.  I think it’s important that she’s starting to “get” the sequence of certain events. But most importantly, she is a great deal less stressed when she understands what is happening and isn’t freaking out over nothing.   And less stress = less bad stims, less “zoning out” spells, and a lot more “with it” moments.

So while it might sound like a tiny thing, it isn’t.

Also, in addition to my last post, she has also said “Dad” and several additional “Hi’s” this week.  She also said, “iiiiiiiiiiiiiiiiiiiiiiiii” when she was taking my hand to gesture for me to get her i-Pad for her.  I feel certain that she was trying to say i-Pad.  We’ve had a lot of little “almost words” this week.

And I actually managed to get her ON VIDEO saying “Hi”!

I cannot wait to upload it and share it with you. I haven’t found time yet.  But I can’t wait for you to see it.

After several weeks enduring the silence, without so much as a single word again, we are really enjoying the few words and sounds we’ve gotten recently.

As I type this to you, she is saying, “ooooooooooo, aaahhhhhhhhh,  mmmmmmmmmm, aaaaaahhhhhhhhh”. It reminds me a little of the way she played with sounds as a tiny baby, when she learned to talk the first time. Before it was all stolen from her.

It’s all baby steps, but as long as they are baby steps in the right direction, then I am one happy and grateful Mama!

Thank you all so much for your continued thoughts, prayers, and support!

Posted in Autism, Blog Awards, Blogging, Daily Life, Progress Reports. 3 Comments »

Happy Dance! Happy Dance! Happy Dance!

April 17, 2012 — Debbie

Obviously, with a title like that, you know this post is gonna be a celebratory one, right?  Of course, you do!

Having a non-verbal child with autism brings new meaning to the phrase “hangs on every word.”

When you have a child that speaks so infrequently that they are considered non-verbal, if one of those rare special moments happen when they are able to say something – any little thing –  well… words cannot describe how happy it makes you as a parent.

(Fair warning: this post was written by a person in a happy rambling state of mind.)

Yesterday I told Ella, “I love you” and she told me “I love you too” with her mouth closed.  This is not new, she’s done this before.  Not often, but she has.

I don’t recall if I’ve written about her talking with her mouth closed on the blog before. But, it’s just what it sounds like. Try to say something, but don’t open your lips.  Sometimes (especially if you know what the other person is likely trying to say), it is understandable.  Even Ella’s speech therapist has witnessed her attempts at speech with her mouth closed.  I don’t know why she does this, she never did it before she had autism. So I think it is her trying to speak and for whatever reason, her mouth/lips/etc/ don’t cooperate for her like they should. I think she remembers how to speak, but just can’t physically make it happen like she used to.  I believe that something physically stops her, be it in her brain, or her mouth or what, I don’t know. But that’s what I think.  At least that is my theory.

Anyway…

This evening Emma told me that she was singing a song to Ella and when she sung the word “man”, she was sure Ella said, “man”.  So I went upstairs, to where they were, to see if maybe she would talk again.

I came into the room and sat on my bed and she got very excited. She climbed up onto my lap. She leaned against me so hard, laid her head against me and said, “Mom.”

She had to work to get it out, but she really said it perfectly. There were no sounds before it, or after it. And it even had the “m” sound at the end.  It wasn’t just “maaaaaa” like she has done in the past.  This was just “Mom”.

I told her, “I heard you, baby! I heard you say, Mom!”

(I always let her know if I heard her trying to say something, but usually I’m saying “I hear you trying to say something but I can’t understand it, just keep trying baby and I’ll keep trying to figure it out.”  I do this because I want her to know that even when I can’t understand what she said, that I understand that she is trying and I want to encourage her and let her know that I am trying really hard to understand. I hope that this both encourages her and eases her frustration a little.  It must be so very frustrating not being able to talk, especially after she used to talk so well before autism. The moments that she is even able to attempt speech are so rare, that I want to encourage her however I can.)

After that…

I snuggled her for a bit, then she decided she was ready to get up and play again. She played for a little bit, then she came back and climbed onto my lap again.

I said, “I love you, Ella.”  And she said, “I love you.”   :)

It was a little tiny bit slurred, but her mouth was open and it was understandable to everyone in the room! Will gasped and said, “Mom, She said I LOVE YOU!”  I said, “I know. I know!”  We were all so excited!

I quickly told her, “I heard that!!! I heard you say I love you!!!”

As happy tears poured down my face, she turned and tipped her head sideways, giving me a curious look.

She was wondering why I was crying.

(Silly me!  I’ve got to stop that! I don’t want her thinking her talking makes me sad!)

I quickly told her, “I’m ok. Mommy is ok, baby. I am happy!  So happy you talked to me!”  And I gave her a big squeeze and she was just grinning from ear to ear.

It made my day!!!  It has been so very long since I have heard her say “Mom”.

I had a really tough day today. Loads of stress today. (Not Ella related, just other stuff.) And I cannot tell you how everything else just pales in comparison to the fact that Ella talked to me!

I already know that she loves me. Now that she is on the GFCF diet and *can* do things like smile again, whenever she is away for a few hours, be it at therapy or visiting my Mom & Dad or whatever, she is sooooo excited to see me when she comes home. Her whole face just lights up. It means so much, because I remember all too well the times when she couldn’t even look at me, much less smile.  So whether she speaks or not, I do know that she loves me.

But it sure feels wonderful to hear it!  

 

Posted in Autism, Blogging, Daily Life, Progress Reports. 1 Comment »

Pretty Day for Pictures

April 16, 2012 — Debbie

Yesterday was a beautiful day here and I decided to take the opportunity to try to get some new photographs of Ella. My little baby girl is quite challenging to photograph.  She rarely looks at you when you say her name, seems to deliberately turn her face away from any camera (acting as if you do not exist while you are holding it), and you have to take a great many photographs to happen to catch a smile.

All I have to say about that is… thank goodness for digital cameras!  Because of digital cameras I can take lots of photographs for free, in the hopes of catching something good.  :)

Here are some of my favorites from yesterday:

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The last one is a big deal because she’s sitting in the grass. Ella has major sensory issues with grass. She doesn’t like it at all. She still refuses to touch grass with her hands (except for occasional frustration induced swiping motions at it, in an attempt to “get rid” of it). But the fact that she let us sit her there and stayed put for a couple of minutes, is quite an accomplishment for her.

~

Posted in Autism, Blogging, Daily Life. 2 Comments »

That’s New!

March 17, 2012 — Debbie

Ella did something new tonight!

While she was hopping up and down (that is one of her favorite “happy” activities), she accidentally banged her chin/mouth on something. (That’s not the part I’m happy about!)

When she did this, I was very near her, but looking down at something and I know she didn’t realize that I saw it happen out of the corner of my eye.

She winced in pain a bit (Thank God she now has some reactions to pain on the GFCF diet!). And I said to her, “Oh Baby, did you hurt your mouth?”

And you know what she did?

She went back to where she did it, and SHOWED ME. She basically reenacted it.  Instead of jumping up and down, she lifted her head up and down, up and down, and touched her chin on it carefully – showing me precisely how she had hit it.  She did it like 3 times!

I am really excited/encouraged by this.

Yes, I knew what she had done, because I’d seen it from the corner of my vision. But she didn’t know that, and she made an effort to communicate with me and show me what she had done.

She even looked at me when she reenacted twice, as if she was saying, “See, see this is what I did.”  I told her I understood that she had bumped her mouth while jumping.  She looked at me like “Yeah” and then she showed me again, and I said, “Yes, baby, I see. I’m so sorry you hurt yourself. You will have to be more careful while jumping.”  And with that she acted as if she understood that I understood and all was well.

Granted all of this was non-verbal communication. But I’ll gratefully take whatever I can get. You have no idea how valuable a little interaction like that with your child is, unless you’ve had a child that cannot do those things. Then the tiniest little things mean so much.

Posted in Autism, Daily Life, Progress Reports. 3 Comments »

Mommy, I Would Give…

March 15, 2012 — Debbie

Our 8-year-old daughter, Emma, and our 9-year-old son, Will, have been saving money (from Christmases, their Birthdays, etc.) with the hope of getting a TV.

They have been saving for a very long time and they still don’t have enough, but I admire their commitment to saving and pooling their funds, rather than blowing it on little things.

Today my 8-year-old daughter, Emma, and I were sitting on my bed. Emma seemed quiet and reflective. Then out of the blue, with a great amount of sincerity in her voice, she says to me, “Mommy, I would give every bit of my money I have, if Ella’s autism would go away and she could talk to me again.”

I put my arm around her and said, “Me too, baby. Me too.”

 

Posted in Autism, Daily Life. 2 Comments »

Sleepy Sunday

March 11, 2012 — Debbie

This morning we had a kid-free morning. That never happens. Can you guess what we did?

We went to bed and slept.  LOL

I love my little Miss Ella Rose more than words could ever say, but I’d be a liar if I said that looking after a child with autism isn’t at times, physically and mentally exhausting. The bigger she gets, the more challenging keeping her safe becomes. Hopefully with time and improvement, she will understand things like… what is dangerous and what isn’t, etc. But right now, she has no fear… of anything.

And her sleep is sometimes not the best, which means ours isn’t either. So there we were 8:30 am, kids out the door, and I think to myself, “hmmmm…. what do I do now?”

My husband apparently didn’t need that moment of hesitation, as he was already headed to bed. He calls for me, “What are you doing?”

Me: ”I dunno.”

Him:  ”Come to bed.”

Me: “You just want me to come to bed because you can’t fall asleep without me there.”

Him: (no response)

So I trudge upstairs and get into bed.  I said, “I don’t think I can sleep. I don’t feel sleepy.” And the last thing I remember was fixing my pillows to get comfortable.

Then I woke up at 12:15 pm in the afternoon! And he didn’t wake up until over an hour after me!  LOL

We must have really needed the sleep!   :)

 

Posted in Blogging, Daily Life. 1 Comment »

Overcoming Sensory Issues with Autism

February 10, 2012 — Debbie

This has been a big week for Ella. We got words this week, that I talked about in my last post here, and something else new happened yesterday. She conquered one of her sensory issues.

For those of you that aren’t aware of this, sensory issues can be a big part of autism. Many different things can be extremely overwhelming to a child (or adult for that matter) on the spectrum. When I say overwhelming, I mean completely physically intolerable to them.

This is not the same thing as a child being a brat and having a tantrum about something. These things are truly intolerable to them.

Ella has many of these sensory issues.  Her speech therapist has told us that there is a theory that you get them over the sensitivities with their hands, and then work your way up their arms, to working on issues with the mouth. And in turn, this can help with speech and other oral issues. So one of the many things we work on with Ella, is getting her to touch things that she doesn’t want to touch. Getting her to a point where she can experience different sensory inputs without becoming overwhelmed is a big step.

One of the things that she cannot tolerate is a typical baby blanket.  The ones that are super soft and fuzzy, and are trimmed in satin. She cannot stand the blanket or the satin part – especially the satin part. Her reaction to this particular item was very strong.  She would get quite upset with me for even trying to get her to touch it one time.

But we’ve been working on it.  I’ve found that the key seems to be pushing the envelope just enough that I push her out of her comfort zone a little, without pushing her too far to the point of stressing out or becoming overwhelmed and “checking out” on me, or going into stims to self-sooth.  I don’t want to be cruel, so I don’t push too far.  Also you want to keep the experience from being too negative for them.

As someone who raised, rescued and trained dogs for years, I equate it to much like getting a dog used to nail trimmings.  Instinctively, for a dog, having someone handle their paws and trim at their nails is very unsettling.  Most dogs don’t like having their paws held. It is a very physically uncomfortable experience for them. For most dogs, this needs to be a gradual process, one that you don’t make a negative experience if you want it to work.  So you get them used to having their paws touched, once that goes well you move on to lightly holding the paw.  Once that goes well, you trim one nail and you stop.  Once that goes well, you trim two nails and you stop.  And so forth and so on until the dog adjusts to the idea that nail trimming isn’t the end of the world.  This might take a day or two, or it might take weeks or months depending on the dog.  But if you do it right, it does work.

That is basically the same approach I take with Ella’s sensory issues.  I gently coax her out of her comfort zone just enough that it is not overwhelming and becomes tolerable over time.  For example, I might play a game with her on the bed where I make tickle noises or “get you” game where I touch her with the blanket.  Only for a split second, with lots of silliness and giggles involved. I don’t continually do it. I don’t send her into a fit, or worse yet, a zoned out state. I just annoy her just a little with it. Eventually it becomes less of a big deal.

There are many items that we have desensitized her to, using this method.  And we have many more to go!   :)

A few months ago I, much to her annoyance, placed the hated pink satin blanket onto her bed.  Which resulted in her sitting to one side of it, or later on taking two “pincher” fingers and throwing it out of her bed.  (Which was actually progress because she was touching it, to do that.)

The only time she would allow it on her, was when she was asleep and there was another blanket between her and it.  For example, Emma would often cover her up with it after she fell asleep. But if Emma didn’t put a little cotton receiving blanket over her first, and she woke up and found the pink satin touching her, she would freak out and kick it off and scream.

Emma is persistent though.  Emma treats Ella like her own little doll, and loves to fuss over her when she’s asleep. And Emma, who loves the color pink, is a firm believer that the pink blanket is “the prettiest” of all the blankets and that Ella simply must grow to love it some day.   :)

Well, yesterday she was laying down for a nap and I looked over and she was laying on the pink blanket, and was RUBBING it (in a self-sooth type fashion), with her hand, while holding it in the other hand. That’s right… she was touching it, holding it, and sliding her hand up and down the satin!  I was so surprised.  I went and got the camera and in the time it took me to get back into the room, she had fallen asleep.  I took the picture anyway.

You can see the pink blanket in her hand.

I told my husband and he said, “You’re kidding me, the pink blanket?”  And I happily showed him the photographs. It was a big surprise to both of us.  We spent at least 15 minutes excitedly talking about the progress she’d made.  And a sad look flashed across his face. I said, “What’s wrong?”  He said, “Do you realize we just spent 15 minutes super-excited because our child touched a satin blanket?”

I saw his point.  It is kind of pathetic when you look at it like that.  But, you can’t.  You can’t look at it like that. Like I told him, “Well, it’s a whole lot better than spending 15 minutes upset because your child has a panic attack if they touch a satin blanket, right?”  He agreed.

Baby steps.  It’s all baby steps.  But as long as they are headed in the right direction, that’s what counts!

Posted in Autism, Daily Life, Progress Reports, Sensory Issues, Tips. 2 Comments »

Answered Prayers

February 9, 2012 — Debbie

Ella has continued to make progress. But in recent weeks, it seems that her focus has been on physical abilities not verbal ones. She was also taking a growth spurt.

It had been over a month since Ella had said a single word. Yes, she has been “non-verbal” since the allergic/adverse vaccine reaction that immediately triggered her autism, but since her improvements on the GFCF diet, she has been occasionally saying a word or two here and there.  Maybe a MaMa or a DaDa, or Hi.  These aren’t frequent, not even daily. But maybe once a week or so, there will be a little word like that, or an “Uh-huh” for yes, or an “Uh-uh” for no.  They are rare, but precious.

But it had been well over a month since she had said any words at all.

While she continues to make physical progress, she also grows increasingly frustrated as she gets bigger and cannot speak. Also she is extremely strong, and just keeping her safe on a daily basis has become increasingly challenging. Life is complicated. I was feeling discouraged. I hadn’t lost hope for her, I would never want anyone to think that. But it was definitely a rough patch in terms of emotions.

I pray every single day that she will speak again. I long for the day when she will wake me up the way that she used to, eyes happily shining, saying “Momma, I love you! Momma, I love you!”  And I long for the day that she will take my hands again and ask me, “I dance with you?”  I remember those days – pre-autism – so clearly, but they seem further and further away as time passes and we endure the silence.

I found myself crying intermittently for three days in a row. (How’s that for admitting something embarrassing on the internet?) But it’s true. I was having a rough time of it. I had long talks with God.

I struggled. Finally after a few days of being in this emotional rut, I asked God for something to keep me going. I prayed to God that she would just say one word.  Just one word.

I didn’t care what, just anything. I needed it. I needed to hear her beautiful, little voice so badly.

I’m not a person that puts a lot of stock in numbers or “signs”. But it might be worth mentioning that my favorite number is 3. It always has been. I don’t know why.  It just is.

I prayed to God for one word from her, for two days.

On the third day, in the middle of the night, she didn’t want to sleep. She was hyper and energetic. She was playing on the bed with us, when out of the blue she told her Daddy, “I love you.”  She told me, “I love you!” and I looked at the digital clock in our room and it said 3:33am.

A few minutes later, she went on to say “Emma“.  She worked so hard to sound out “EM-MA”. It was the first time she’d said her sisters name since her vaccine reaction.

I absolutely believe it was an answered prayer. It felt so good, to hear her speak again. I thanked God for what I truly believe was his message of hope to me.  I’m not one to ask God to prove things to me, or anything like that. But I think God knew how much I really, deeply, needed to hear her words.

Yesterday evening she talked again. She said “Mom” when she wanted me.  Later that night, she answered two questions, one with “Uh-huh” for yes, and when her Daddy told her it was almost bed time and asked if she was ready for bed, she said, “Uh-uh!”   :)

A few minutes later, he changed her diaper and put her pajamas on her and I was sitting on our bed as he placed her into her bed. (Her bed is at the foot of ours, so that we can keep an eye on her at night.) He gave her a hug, then put her to bed. She looked up at him with the most tender and loving look in her eyes and said, “Hi Dad.” Right after that, she followed it with, “I love you.”

Can I just tell you how much my heart soared?

She not only said this, but she said it without anyone saying it first. She wasn’t repeating something, she said it 100% all on her own.

Will & Emma were in the room when it happened too, and we were all so happy. We spent a few minutes talking about it and then we reminded them it was late, and they needed to head off to bed. As they left our room, they did their usual routine.  Emma said, “Goodnight Ella, I love you.”  Then Will said, “I love you, Ella. Good night. Can you say good night?”

And she turned towards him, made eye contact with him, and said, “Night.” And she grinned like she was proud of herself.

There haven’t been any words today. But that’s ok. I can run on these for awhile. I got what I needed. I needed to know she could still do it. That somewhere in there, she could still do it.

I am so grateful.

Posted in Autism, Blogging, Daily Life, Progress Reports. 1 Comment »

Well, that was a first…

October 18, 2011 — Debbie

This isn’t an important post of any sort, just funny…. I think.

Ella has some sleep issues, as is common with many kids with autism. We’ve been trying some new things and things are improving. But last night it was after 4am and our little baby bug was still hopping around with tons of energy. So we put her on our bed to play with her and snuggle and try to settle her down (because sometimes that works).

Everything was going great. She played for awhile, then she was slowly settling down as she went back and forth between getting Mommy snuggles and Daddy snuggles. Then suddenly she wanted off the bed. We prevented her from getting off of the bed, thinking it was just a last ditch effort to try to fight off sleep.

We were wrong. She wanted off the bed to pee.

She just turned 2 in July and potty training is not something we have attempted yet with her, but she does not like to pee while on your lap or near you.  (A good sign I think.)

So, what I’m about to tell you is all our fault. If we had let her off of the bed, it wouldn’t have happened like this. But we didn’t realize why she wanted off the bed.

What happened next went something like this.

My husband:  ”Oh crap! I know why she wanted up!”

Me:  ”Why?”

Him:  ”She had to pee! Her diaper is leaking on the bed.”  He said as he quickly arose from the bed.

When he got up, this changed the tilt of our mattress just enough that the gigantic pee puddle (oh yes, I did say gigantic – as in the biggest diaper leak I’ve ever seen – and I have 3 kids)…. the gigantic pee puddle comes flooding my direction.

I was unaware of this until it was too late. The flood of pee rushed over my hand, past my wrist, all along my right arm, into my armpit, and then flowed down my body and around my cleavage. All before I could get out of the bed.

I got up in enough time to see what appeared to be the rupture of some sort of under-wire water bra on my t-shirt.  Except I don’t have such a thing, and it wasn’t water. It was pee.

So there we were, at approx. 4:30am, with a child that had been finally almost ready to sleep, and she needed cleaned up, clean clothes. I needed a shower and clean clothes, and our fitted sheet, our mattress cover, 1 pillow and pillow case and 1 blanket all had pee on them.

You know what you do when that happens?

.

.

.

YOU LAUGH.

Seriously,  you laugh.  Because that is all you can do.

Because stupid stuff happens and you just do what you’ve gotta do and move on.  You can’t sweat the small stuff. Besides it’s not everyday your t-shirt looks like you are wearing a pee bra.  I told my husband to try to control himself, as I am sure it was quite sexy.   LOL!    ;)

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