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!
I am so excited that Ella’s story and my videos of her using the iPad2 for autism therapy, starting at only 23-months-old, are being shared this week at MobiLearnAsia 2012 (a major conference on technology-based learning).
If you haven’t seen it before here, this is the first video that I shot of Ella using her iPad. She was only 23-months-old and this was only the 3rd time she had ever touched an iPad:
One of my goals has been to encourage people to look past what some with autism cannot say aloud, and to look toward their inner intelligence and brilliance.
The use of iPads in autism therapy is becoming increasingly common. But so many still believe that their child must be much older to benefit. Ella has proven that wrong. She took to her iPad like a duck takes to water. In the time that she has been using it, her abilities have dramatically increased. The iPad not only assists her in learning and expressing herself, but it also has given her a sense of accomplishment that is truly priceless.
I think it is awesome that little home movies that I shot at my house are being viewed at this conference by technology experts from around the globe.
If the end result is that one extra child is given the opportunity to experience the benefits that Ella has, then it makes all the work that I have done on the entire blog worthwhile.
I want to encourage everyone to look past the surface of people, and see that people should not be defined by what they can or cannot do, but who they are inside. Don’t assume because an individual can’t do one thing, that they cannot do something else.
In the words of Temple Grandin, “I am different, not less.”
I send a special thank you to Koh Kheng Wah from Hearty SPIN in Singapore, for bringing Ella’s story to a wider audience.
Those of you that follow my blog at DorkyDeb.com know that we went through a rather nasty storm on June 29th, 2012 called a Derecho. If you’d like to read more about that little adventure, you can click here.
The storm (and following storms) resulted in record-breaking power outages. The whole thing threw Ella a bit off. It is a well-known fact that individuals on the spectrum often have problems with changes in routine, and the storm and the weeks that followed were a massive change in routine.
It was enough to throw everyone “off”, especially Ella. She was stimming a lot, making less eye contact, and was “zoning out” a whole lot more. I am happy to say that in getting back to her “normal life”, she started to improve and she is now back to her usual self.
But I thought I would share with you something that happened last night. Ella coughed, and when she did, she made a funny sound. She noticed this and tried to repeat the funny sound. Her attempts to repeat the sound, came out like a growl. She thought that was interesting, and kept doing it. We started doing it back, and we had this wonderful little vocal back-and-forth that lasted for quite awhile.
Since it was going so well, I decided to try to get her to make some other sounds while growling. Most things seemed to stress her, because she couldn’t copy them. But she enjoyed trying to say “Hi” in a growling voice. So I mostly stuck to growling and saying “Hi”. That went so well that I sent my husband to run for the camera to try to get it on video so that I could show it to Ella’s speech therapist.
Ella was distracted by the camera, especially the swinging camera strap. And didn’t perform as well on-camera as she did off. But we were able to get some of it on video.
I can’t tell you what it meant to get this sort of vocal interaction with her. It is an extremely rare event. And she was really working to try to respond to me.
Unfortunately all of that growling did not agree at all with my muscle issues and I lost my voice later that night (oh the irony! LOL) So I think if we can get her to do it again, her Daddy is going to have to be the one to do the growling.
I know I look like an idiot on this video, and I know many people wouldn’t understand why her growling back and forth with us is a big deal. But trust me when I tell you that it is a huge deal. When you’ve had your child loose so much, and suddenly she cannot look at you, cannot talk to you anymore, nothing – then things like this become extremely touching. She’s looking at me. She’s playing with me. She’s interacting with me. She is even vocally interacting with me! It’s progress. And I am so grateful for it. And if it means I act like an idiot, then so-be-it. I will gladly do anything I can to reach her and have her “with” me and interacting with me.
During this video the whole family is in the room, so you’ll hear a little off-camera chatter too. Because my other kids were so excited at what Ella was doing they couldn’t keep quiet either. LOL!
We placed her in her play yard to try to shoot the video, because it’s easiest to work with her when she is semi-confined – otherwise she tends to get involved in something else and loose focus/wander off, etc.
Something else I wanted to explain, is that part way through this video, when we are all clapping for her, she places her hands inside of mine for me to clap on them for a little bit. That might look strange to someone else. But that is how I taught her to clap, holding her hands and clapping them. So frequently when we clap, she likes to make my hands clap, or place her hands inside of mine and have me clap ON her hands. I “go with the flow” on this kind of thing, because I’m just thrilled to have her interacting with me.
I’m a firm believer in reaching her where she is at, and doing the things that help her engage with us. I think this is a much better tactic than just trying force “normal” behavior, and only “normal” behavior, on her. I’ll do whatever silly thing it takes, to help her interact with us. This was a lot of fun. I hope you enjoy watching it.
Ella spoke at a very young age. And we had a lot of fun trying to get her to say new things, etc. Unfortunately, I don’t have very many videos of her talking because, like most kids, she would get fascinated with trying to grab the camera or looking at the camera and would stop doing whatever she was doing before the camera came out.
Also, in a busy house with 3 young kids, I didn’t take a lot of time to video things. Obviously if I’d known what she was going to loose, I would have had the camera out a lot more. So that I could have more of those precious words to hear.
Our son, Will, is holding her in this video, as it was taken December 6th, 2009 and she was only 4 months old.
This video is a little hard for me to watch. I love it. It makes me smile. But it is a little hard to watch too. Because it is “before”. It is before her severe allergic vaccine reaction that took away her speech in a matter of minutes, and what ended in an autism diagnosis. I can’t help but see how she’s just a typical happy little 4 month old baby here. She makes eye contact with me throughout the video. She makes lots of sounds. She attempts to say her own name, and “Hi”.
I wish so much that she would regularly attempt to say something for me now when I asked, like she did in this video. So, yeah, it’s a little hard to watch.
But, the reason I wanted to share this, is because I’ve noticed that her new returning speech, is much like her beginning speech when she was just a few months old. Although she was much more verbal at 4 months old than she is now, her new “Hi”, sounds a great deal like her “Hi” as an infant.
Since I uploaded the current video of her saying “Hi”, I thought I’d upload this older one, too.
In it, she is trying to copy what I am saying. It’s not her best, but it’s pretty darn cute – if I do say so myself. It’s not like I’m biased or anything.
I think the fact that her new sounds, are starting to remind me a little of her old sounds, is a very good thing. And I hope it is just the start of much more to come.
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!