(A First Year Calendar is a blank wall calendar to be used to jot down little milestones, etc. The pages are printed, but the month/day/year is left blank so that you can write them in and start the calendar whenever your baby is born.)
By the end of March 2010, she would be 9 months old.
On March 3rd, 2010, when she was just a few days over 8 months old, I wrote this entry on her wall calendar:
For anyone who can’t make out the photo, it says, “Says DaDa reliably now when she wants him.“
I remember writing that. She’d been saying “Hi” and a few other things for months, and “DaDa” and “MaMa” for quite awhile. But by March 3rd, 2010 she had started saying “DaDa” reliably any time that she wanted her Daddy. It was “DaDa” this and “DaDa” that. He’d walk into a room and it was “DaDa!” :)
She lost all of her ability to speak in an instant in October of 2010. Everything since then has been about trying to work her way back from the injuries caused by her severe vaccine reaction that day.
Now she occasionally (not often) says “Daaaaaa” at him. And *very* *very* rarely she can get out “Daddy”. But she can’t say either one reliably, or when she wants him.
That’s tough. Seeing other little kids her age talk, when she can’t any longer, that’s tough too.
I don’t sit around all the time and mourn what she lost. I can’t. It would kill me if I did. And more importantly, if I did stay locked in the past, I wouldn’t be any good for her today.
So I focus on right now, what can we do right now and in the future – that is what I think about. But when I see old mementos like this, I won’t lie, sometimes these things do hit me where it hurts.
For a moment, I feel the pang of pain in my heart. I feel the sadness in my soul. Then I get up and I move on. I hug my smiling Ella, who always makes me feel better. My baby girl who could not smile after her vaccine reaction, and I thank God that she can smile again, that she is happy again, and that she is working her way towards recovery.
We filmed this video on Saturday, January 12th, 2013.
This video shows the tremendous progress Ella has made in attempting to feed herself using a spoon.
As my husband and I watched this video, he said, “Nobody watching this has any idea how hard we have worked, how hard she has worked, to get to this point.”
And he’s right.
But she’s doing it! She is working so hard. She is learning so much! Yes, she gets overwhelmed sometimes, so we have to be very careful about our pace with things. But she is extremely motivated.
(Oh, and if anyone wonders why I have things hanging off the back of her chair in these videos, that is because sometimes she takes a sudden rocking/stim behavior and if the chair isn’t weighted down, it can flip with her. So I have things on the chair to give it more stability.)
Quickly, before I get to the video, I want to tell you a conversation that happened at our house while we were uploading this to the internet. My 9-year-old son, Will (who loves Ella’s progress videos), says, “Mom, how many Ella videos have you posted now?”
Me: ”I’m not exactly sure.”
Will: ”Well, How many more do you plan to do?”
Me: ”I don’t know, hopefully lots!”
And my husband says, “I hope someday we upload Progress Video Number 560 – the one where Ella learns how to drive!”
We dream big around here! Don’t you?
Here is our latest video:
I will embed a small version below.
But for the best quality, you can view it on YouTube directly by clicking the link:
She fed herself for the first time since developing autism!
I got her to do it again, later in the day, on video. I am very excited to share this video with you, but first I want to explain a few things because I know that we’ve gotten some new readers here who don’t know as much about Ella’s history or autism in general. Were I only posting this for my friends in the autism community, there wouldn’t be much explanation needed.
But one of the wonderful surprises in writing this blog, has been how many of my friends – who have no other connection to autism – have followed along here, praying for Ella and cheering her along. I can’t tell you what that means to me. I simply love you guys, each and every one of you. So I am going to try to give you an explanation of some of the major progress this video shows. I can understand how to many people this is just a video of a kid eating a muffin. But there were so many milestones involved in getting her to this point. These are little skills that never cross your mind – until your child suddenly cannot do them anymore.
If you don’t want to read all of this, and you want to scroll down to the video, feel free to do so. But the video will make more sense if you read this first.
For those who are new here – these are all skills that Ella had prior to her allergic/adverse vaccine reaction in October of 2010. She held food, fed herself (even things like PIZZA, crust and all), she chewed wonderfully, she made perfect eye contact, she spoke in full sentences. She lost all of these things and more within 15 minutes of her vaccine reaction. Every day since then has been about trying to fight to get those skills back for her. She continued to decline from October 2010 until January 1st, 2011 when we started her on a GF/CF (gluten-free, casein-free) diet, and things started improving.
She is still non-verbal, occasionally saying some words now. She still cannot chew properly. But that is improving also. The day of her vaccine injury she could not eat at all. She would only take a bottle, for days. She stopped all solid food. When she did eat solid food again, it had to be the consistency of baby food. Anything chewy or lumpy and she would gag and choke.
Over time, we have ever so slowly and carefully, worked our way up to lumpy things, and then some soft solids – like muffins. I can’t feed her these things regularly yet, as it still takes a lot out of her to eat this way. So most of her meals are still mushy, but they have more consistency than she used to be able to tolerate.
She has learned to roll things around in her mouth. And occasionally I do believe she is chewing – just a teeny tiny bit. In the video, you will hear me regularly reminding her to chew. I do this because often times, when I don’t, she forgets and tries to swallow without rolling it around in her mouth. You can see in the video when she swallows too soon, if you watch her face. You will see the way that she winces, when she attempts to swallow something that she shouldn’t yet.
The muffins in the video are GF/CF and fairly mushy. But they have a rather tacky consistency, that is common with gluten-free foods. So they don’t just crumble in her mouth. She needs to roll them around in her mouth before swallowing and it’s important that the bites aren’t too big.
Some of the progress you will see in this video:
- She can bite food again now. That is another skill she had lost.
- She can lick her lips again now. This was another skill that she had lost, that she has regained in recent months. If you watch the video to the end, she actually attempts to lick her lips when I tell her to, which is awesome!
- She can take food from my hand now, with her mouth. This was VERY hard for her to do. She has issues with motor control. She doesn’t actually do this in the video, I tried to get it on video but she grabbed it with her hands instead – which is actually great – because she would not touch the muffin with her hands prior to yesterday!
- She can let me wipe her hands and face again now. This is the sort of thing that used to send her into a sensory meltdown, that resulted in her being totally zoned out and stimming.
- She is able to tolerate the feel of the food on her hands and her face again now. She still doesn’t like it, but she can get through it, which is important. This was completely unbearable for her in the past, due to extreme sensory issues that she developed after the vaccine reaction. It is not my intention for this to be an anti-vaccine rant, I just want to make it very clear that these are not issues that she had *at all* prior to the vaccine reaction. I say this because there are people that will try to tell you that children like Ella are always born this way and that vaccines never cause this. That is simply a lie. Children like Ella do exist. Families like ours are real, and maybe not as rare as you might think.
You will notice in the video that when I see her about to stress out about the muffin on her hands, I keep reminding her that I will clean it off and it is ok.
A lot of little things like that, might not be that obvious to someone else, but I know my little girl well enough to spot the beginnings of a meltdown – so I try to advert them whenever possible. She is a little “zoned out” at times in this video. Not terribly so, but somewhat. You’ll notice the lack of focus in her eyes.
That is because this is hard for her. I ride a very fine line working with her, of trying to push her boundaries and encourage her to do new things – without pushing her into completely zoning out and me loosing the moment. I can’t stress enough how fine that line is. Working right up to it without pushing her over it, is challenging, but necessary.
You will notice in the video that I talk to her all throughout this. Most of the time when I work with her, I give her much more quiet time, time to process what I said, time to perhaps give me a verbal response. But in a situation like this (which is somewhat overwhelming to her) if I give her too much quiet time, I loose her. I have to keep her “with me”. By gently encouraging her, touching her hands, brushing back her hair – these are little things that help keep that minor zoning out, from turning into a full-blown not “with me” anymore episode, where we loose the teaching moment.
But I wouldn’t want anyone to think that you need to constantly chatter at a child with autism, or talk excessively. As I don’t think that is a good idea. Often times, Ella can do things on her own, she just needs a longer time to process what you said, and respond.
In those types of situations, you can easily push her into zoning out, by simply throwing too much at her at once. So it’s really important to know the child and know what helps and what doesn’t – and be aware that all situations are different and often need different approaches.
The more Ella has improved, the more chatter she has been able to handle. But there are still many times when she needs a slow, quiet approach to new things.
- She takes my hands to what she wants now. This was a skill that she developed after working with her iPad for autism therapy. She puts my hands on things she needs me to do for her. Which is WONDERFUL because it gives her a way to communicate her needs. It’s somewhat off-camera in the video, but if you pay close attention, you will see her at the beginning trying to put my hand on the muffin. That is her way of asking me to do it.
When I finally got her to feed herself yesterday (the time before the video), I told her I would touch it if she would touch it. And I would touch the muffin, then I would put her hand on the muffin. She didn’t like that a bit. But she let me do it. Then I held her hand as I formed her hand to grasp the muffin, then we BOTH held the muffin as it went to her mouth.
As she got comfortable with that, I started to let go. She would get nervous, and want my hand back, so I told her I would hold her arm. And I held her arm as she fed herself. Then, by the end of the muffin, she was doing it entirely on her own!
Something else you might wonder about in the video, is a couple of times you will hear me say “Don’t baby bird me.” In the past, when I was trying to get her to tolerate letting me put a bite of food in her mouth with my fingers (which often got me accidentally bit), I would tell her to “baby bird me”. I would tell her to open her mouth like a little baby bird, so that I could put the food in it.
As we’ve been working on trying to get her to feed herself, she will occasionally “baby bird me”. That is her way of asking me to feed her.
So that is why I was saying, “Don’t baby bird me, get it yourself.”
Earlier in the day I had explained to her (like I’ve been doing a lot lately) that she is a big girl now and that big girls try new things. Ella LOVES her routine. Ella likes to do everything *precisely* the same all of the time. That is a typical autism trait. And most of the time, we use it to our advantage. But, it can make things more challenging when trying to get her to try something new.
So I’ve been explaining to her that big girls try new things. Earlier in the day (the first time she fed herself) I listed off some of the new things she’s been doing lately – to remind her of the “big girl stuff” that she can do now.
When I would not feed her more bites and I told her that big girls feed themselves, she looked at me so hopelessly sad.
So I stopped. I hugged her. And I said, “Listen Ella, I will never let you go hungry. Don’t worry. I will make sure that you get food. And if you can’t do this, I will feed you.” (She smiled.)
Then I said, “But I really need for you to try this. You CAN do this. I believe in you. I know it is uncomfortable. I know it is hard. But I am just asking you to try, because someday you will want to be able to feed yourself when Mommy isn’t with you. And I want you to be able to do that, so we need to start trying it now.”
And she did!
I think it is important to talk to kids with autism as “typically” as you possibly can. Just because Ella can’t talk to me, doesn’t mean she isn’t extremely intelligent. So I don’t talk to her as if she isn’t. I think that’s so important! I don’t want to be insulting towards her. I think she’s just as smart as anyone in this house, quite possibly smarter. :) I will not talk “down” to her – ever. And I don’t tolerate anyone else doing it either.
We have worked on these things for so long. Both at home and with her therapist (who we love). This video is two years and three months in the making.
Without further delay, I will get to the video now. If you watch through till the end, you’ll get to see one of her ornery grins, as she goes for something on the table and I tell her to leave it alone because it is Will’s. :)
If you wish to watch the video larger, you can view it on the YouTube page. You can see her facial expressions and everything much much better on the larger size video, located at http://youtu.be/WwBDEQJTrkY
Thanks everyone for your support! Ella is a strong little girl. She wants very badly to get better. She is very motivated, and she fights through her challenges. She is an inspiration to me every day!
It’s been awhile since I’ve posted an update on Ella. Basically because we had some huge changes and I wanted to see how things went before I decided how much of this I wanted to share, etc. I always try to be mindful of the fact that this is Ella’s story, and the story of our journey with her. But first and foremost, this is her life. I want to always be respectful of that fact. So sometimes I like to hold onto things for awhile, and see where they are going, before I share them. This was that type of situation, but much has happened since, and I now have lots of news to share. But I must start at the beginning…
My last post spoke about some of the testing Ella was having done. Those tests led to some shocking news. Here is some of what we found out:
- They now believe she may have a mitochondria issue. More testing is planned, and perhaps I’ll talk about that more when we have more information.
- Her ammonia levels were extremely high.
- Her doctor gave her blood tests for allergies to the foods she was currently eating. We had a huge, jaw dropping moment when we found out that she tests allergic (ranging from somewhat mild – to very severe) to nearly every single thing she was eating.
As some of you may recall, Ella was already on a limited diet. The day of her allergic vaccine reaction she completely lost the ability to chew. She still cannot chew. She has major sensory issues with her mouth, so that impacts what she can tolerate in her mouth to eat. She was/is on a GFCF diet for her autism. They don’t want her to have any egg (or foods with egg in them) in case an egg allergy played a part in her allergic vaccine reaction (many vaccines contain egg). And she had a large number of food allergies that we already knew about, due to her obvious physical reactions to them, ranging from serious digestive distress to full body hives, etc.
We had worked hard to get what we could in her diet, but we were still using a doctor-recommended soy-based formula to fill the gaps in her nutrition and keep her healthy while we worked on expanding her diet.
And then we were hit with this bomb.
She tested allergic to :
Soy Green Peas Carrots White Potatoes Apples Peaches Green beans
Remember this is on top of all of the things that we already knew she was allergic to.
One or more of these foods was in almost everything that she was eating. And her doctor told us to transition her off of all of it as quickly as we possibly could. This included her soy-based formula. Because soy was the worst allergen she had. The range from the lab only went to 100, and her soy allergy came back as >100. Meaning her reaction went higher than the measurement on the lab.
Now I’ve never ran food allergy tests, but my former career was in environmental science. I worked in a lab. Performing, completing, reading, and reporting on lab results was part of my job, and generally speaking maximum result levels are set at a number that isn’t commonly expected to be reached. Anything above that, and the computer cannot process it. It only knows it is “greater than” the maximum value. This isn’t viewed as a problem, because of the rarity of going over the max result. So imagine how we felt when we found out that the food that was her staple, filling in her gaps in her nutrition, was the worst offender of all.
Between that, and seeing nearly all of her other foods on the list, I really felt like I’d been hit by a truck. We literally had to start from scratch, all over again.
Not only is this difficult because of her chewing and sensory issues, but she is also extremely resistant to new foods. And I don’t mean in a “picky-eater” or “bratty-kid” type of way, I mean in the autistic way – meaning “this-is-simply-not-food-to-me” way. She’s not trying to be difficult, she just thinks what you are putting at her mouth is not food, worse than that, she acts as if something new is extremely suspect and possibly toxic. Of course, given her past experiences with foods – I don’t think I can blame her for feeling that way.
She usually has to be exposed to a new food many, many times to even begin to think it is edible. Also all new foods have to be tried separately, that way if anything causes an obvious allergic reaction – you know what did it. So everything new has to be done slowly and with great care.
Her doctor also recommended the addition of special supplements, special water, and all sorts of new dietary-treatments. Again, all of which must be started separately, in case she has a reaction.
I won’t deny that I spent the first couple of days thinking/praying, “God, how are we going to do this?”
Then I wrapped my head around it, and we started making a plan.
I haven’t made many posts on this blog recently, because my MG has been giving me more trouble and when I’ve been online I’ve been very busy with Myasthenia Gravis Awareness Month over on DorkyDeb.com. But I wanted to share an Ella photo from father’s day.
Her Grandma gave her this outfit. It says, “Daddy’s Happy Girl!”
This photo is yet another “progress note”. Father’s Day was the first day she has ever been able to sit in “the big girl swing” and not immediately fall out of it. My Mom pushed her in the swing and had to support her back occasionally, but Ella’s balance was so much better! She was so happy to be using the swing that her big sister, Emma, uses! She LOVES to be like Emma and try to do the things that Emma does. We try to use that to our advantage whenever possible in her therapy too!
The look of happiness and joy on her face while she did this for the first time was really fun to watch.
She really is Daddy’s Happy Girl !
Anyone that follows this blog, has probably figured out that I like to celebrate the little victories. Well, today we had a little victory and I wanted to share it with you.
Last month, I shared with you how Ella has major sensory issues with grass, and that one time last month she actually sat on the grass for a little while.
She still hadn’t touched it with her skin.
Something that so many of us can enjoy, the feel of soft spring grass under our feet, was simply unbearable for her.
Today she walked in the grass with bare feet. She still won’t touch it with her hands, and yes she spent at least 15 minutes fully engrossed in examining the bolt on the swingset that she’s seen a million times before.
But she walked in the grass!
She was apprehensive at first, but her desire to go outside was stronger than her desire to avoid the grass, so she gave it a little try.
And much to our amazement, (and her’s too I believe), she was physically able to tolerate the way it felt. She not only tolerated it, she seemed to enjoy it. She ran around, she swung, she played and never once freaked out.
For Ella, a typical response to the feeling of grass on under her feet would be to freeze, as if her legs had suddenly turned to concrete. And then stress out to a point where she started to stim, and then just totally “zone out”.
But not today!
At one point, we even brought out her shoes and she casually looked over her shoulder at them as if to say, “Shoes? Who needs shoes?” and went right back to what she was doing.
I hope this wasn’t a one-time thing. I hope she will now and forever know the joy of green grass under her feet.
Those of you who follow my blog, know that Ella became completely non-verbal immediately following a severe allergic vaccine reaction in October of 2010. Prior to that day she spoke often, and in full sentences.
Since then we’ve fought hard and prayed hard for her recovery. And she has began to occasionally say a word or two. These words are precious few and far between. I had not been able to capture one of those moments on video….
until Friday, April 20th, 2012.
It’s not the best quality in terms of video (sorry!) or the best that she can say “Hi”. She did better the two times she said Hi right before I shot this video. But… I’ll happily take whatever I can get.
There is a brief pause at the beginning of the video, to allow time to read the intro to the clip. Sorry I’m not better at this video-editing stuff. Perhaps I’ll improve with more practice. LOL!
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!
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.
I am neither a doctor, a lawyer, or a veterinarian. So nothing I say should ever be taken as medical, legal, veterinary, or other professional advice. Because that would be, well... stupid. Thanks! :)
