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!
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.
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!
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! :)
