(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!
I’m going off topic today. Just free writing what is on my mind tonight.
Real life is not always pretty.
Last night my MG was raging at me. I was in really bad shape. I laid in bed praying not to die. It was one of those kinds of nights. I fell asleep shaking with full body tremors. Usually I cannot sleep while having tremors. So exhaustion must have just caught up with me, for the sleep to win over the tremors.
I woke up this morning greatly improved. But I was clearly starting my day with the amount of weakness that I normally end a day on. So I knew to take it easy. By 7 pm my legs were done. I just couldn’t sit up in a chair anymore, it was time. I had to head to bed.
We had borrowed a DVD of the movie Avengers, which I was excited to watch. I was not in the mood to go to bed at all. But I figured if I had to go, I’d like to see that movie. My husband agreed to watch it with me, which doesn’t happen as often as I would like, so I was psyched. Ella was fussing a little, but we thought she’d settle down soon. She seemed to be sleepy.
We put Ella in her bed (which is at the foot of ours so that my husband and I can do our best to keep her safe at night), and Will & Emma came into our room and climbed on the bed. Everyone was ready to watch the movie. Then Ella’s mild fussing turned to screaming. Loud, ear piercing screams. I asked her if she wanted to climb on the bed with us and she ignored me, or didn’t hear me. Sometimes it’s hard to tell which.
My husband picked her up and put her on the bed. I said, “Come here, baby.” And she crawled up the bed to me. She laid down against me and I snuggled her up in my blanket. We waited to start the movie, hoping that she would stop screaming soon. She was so obviously sleepy.
She proceeded to scream for the next two hours, approximately 2 to 3 inches from my ear. The only thing that made her pause in screaming was when I would sing to her. Anyone with MG knows how hard singing is. It’s nightmarish on your throat muscles. At times it is completely impossible to do. Other times it is possible but it makes my muscles too fatigued to talk, eat, and makes breathing difficult.
I sang a few songs to her, trying to rest my voice in-between. When I couldn’t do it anymore and I told her how sorry I was that my muscles were too weak and I couldn’t sing to her anymore right now, she cried. Real tears ran down her cheeks.
In these moments, I cannot help but wonder what the point is in all of this. Why did she get sick? Why am I sick? Why can’t God let my muscles be strong enough to at least sing to my crying baby as I hold her?
Don’t get me wrong, I understand how blessed I am just that we are all here together. It could be much worse.
Her Daddy is there, her brother and sister are there. But she doesn’t want them in those moments. She wants me. She wants me to hold her and me to sing. And I couldn’t sing another song.
I rubbed her tummy. I rubbed her hair back. I kissed her hand over and over again, like she loves. It helped, but it didn’t fix it – whatever was wrong.
I knew she shouldn’t be hungry again yet, and she’d made no attempt to take us to the fridge or table (how she asks for food). But I had my husband bring me some food to try feeding her. I sat up on the bed, and she sat up too. I fed her and she ate pretty well, and she even smiled a little tiny bit.
But within minutes she was screaming again. It is gut wrenching that she can’t just tell me what is wrong. I want to know so badly. I tell her that, in times like this. I want her to know that I am trying to understand. I’m trying to figure it out. Usually I can figure it out. But times like those, when I can’t… I have such a rush of emotions.
My heart breaks for her. I see the frustration and pain in her eyes. All she wants to do is be able to tell me what is wrong. And she can’t.
All I want to do is fix whatever is wrong, and I can’t.
So we hold each other.
She cries on the outside, and I cry on the inside.
I am fairly certain that she is as smart as anyone in this house – quite possibly smarter. But her body can’t cooperate with her the way that it should. She can no longer make it do all the things that she wants and needs it to do. I can relate to that, so much. I understand that feeling all too well.
Our challenges are different, but in some ways they are very much the same.
One thing was different tonight. Usually when she is having a screaming tantrum, she kicks. (I hate to even call it a “tantrum” because that brings to mind a bratty child or a typical toddler tantrum. This is most definitely NOT the same thing.) But you really have to watch out for those kicks, because she will hurt you, without meaning to. But tonight she didn’t kick, not once. She just snuggled me and screamed.
At one point, she flung her fists in the air in frustration and I didn’t see it coming and she accidentally hit me in the right eye, hard. I had turned to look at my son and it happened so fast, that she actually landed the hit square on my eyeball, because I didn’t blink in time. I just said, “OUCH!” and went back to snuggling her.
Finally 4 hours later, she’s not screaming. I don’t think she’s very happy, but she’s not screaming and seems semi-content. Thank God.
I have a horrible headache, my hurting eye is an interesting color of red, and I never did get that rest I needed. Who knows when I’ll see the Avengers. I’m too busy attempting to be my own sort of superhero. One that battles my neuromuscular disease and her autism.
I don’t have a fancy costume or super powers. And I am certainly no superhero. But I have faith, stubbornness, and a big heart.
Not everything about today was bad, not even close. And Ella’s days are so much better than they used to be for her. But not everything is pretty. Somethings are hard. Tonight was just one of those moments. Nothing particularly out-of-the-ordinary.
Good, bad, happy, beautiful, sad. A day, like any other day. And I’m grateful to be here.
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.
Today’s HAWMC post topic is an exercise in stepping out of our typical blog voice, and blogging in the third person.
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She sits quietly on the edge of her bed. There is no sound in the room, other than a former favorite TV show playing in the background.
“Can you give her to me?” she asks her husband.
He gently places the toddler onto her mother’s lap. The little girl doesn’t look at her father, or her mother. She doesn’t look at the TV show that she once loved. She stares blankly into some unseen distant point. Her only reaction, a brief flinch of discomfort, when her mother kisses her cheek.
Her mother cradles her and says, “I love you, baby girl.”
The little girl’s hair has fallen into her face, but if she notices or is bothered by it, there is no sign of it.
Her mother brushes her hair back. Her daughter doesn’t even blink. Nothing breaks the distant stare.
Her mother picks up a soft pink rattle, one of her former favorite toys, and shakes it gently. The little girl doesn’t even appear to hear it or see it. The rattle is in the shape of a flower. The stem is made of soft fabric, with crinkly fabric, making up the petals of the flower.
The mother gives up and lays the rattle on her daughter’s belly. The soft stem touches her leg, and she cringes. Although she never looks at the offending object, she squirms in discomfort. Her mother removes the rattle and lays it aside on the bed.
The mother rocks her baby. But the girl is stiff and tense all over. She shows no emotion towards her mother, or anything else, and her tension is palatable.
The older siblings run in and out of the room. The child never seems to notice.
They stay like this for 30 minutes. Her husband stands quietly in the corner, watching, feeling as helpless as she does. He says nothing, but his emotions run deep.
As a nurse, he is a professionally trained healer, yet he cannot heal his own daughter.
He carries a mountain on his back. The mountain being that he was the one that took her for the vaccinations that triggered the severe allergic reaction that began it all in an instant.
No matter how many times his wife reminds him that he was only doing what they thought was best, and that they were following the law of their state (which required those vaccinations), it does not ease his guilt.
“I handed her over. I handed her over to get this, ” he says.
“You can’t think like that,” she says.
“Two months! Over two months have went by and she’s only getting worse. And it’s my fault, because I took her there.” he says.
“Please don’t say that, ” his wife pleads desperately, “you know this isn’t your fault.”
He hangs his head and walks out of the room.
She goes back to trying to get her daughter to look at her.
As she sits on the edge of their bed, holding their youngest child, she remembers the way that the little girl used to wake her up each morning. Climbing onto their bed and yelling, “Mama! I love you! Mama, I love you!”
She wonders if she’ll ever hear those words again. She wonders if the little girl will even be able to hold her gaze again.
Tears pour silently down her face. They roll down her cheeks and drip onto her baby girl. The child doesn’t seem to notice.
The woman is almost in a state of shock. ”How can this be happening?” she thinks.
She sits there, it’s been over an hour now, trying to get her daughter to look at her. ”Please, look at me baby. Please, ” she pleads with the little girl. But nothing.
She attempts again and again to hug her child close to her body, but the little girl only becomes more tense. “Should I put her down?” she thinks to herself. “Am I bothering her too much?” “Am I causing her too much stress?”
Her mind runs a thousand miles a minute.
“No, No, I can’t,” she thinks. “Somewhere inside there is my little girl. Trapped in there someplace is someone that still needs my love, even if she cannot show it.”
“This thing they call “autism”, it may be able to take her speech, her comfort, her ability to chew, to walk normally, and a million other things. But it CANNOT take her love for me, or mine for her.”
“I refuse to believe that. No matter what they say.”
She kisses her child again. Her daughter’s glazed-over eyes have not moved from their distant focus, not once in the past hour. What she wouldn’t do to have her baby girl look at her again. What she wouldn’t give, to hear her voice one more time. What she wouldn’t do, to make it all better.
The tears overflow again. They flood like a silent river down her cheeks.
Then her stubborn streak rises to the surface again.
And she prays.
“Dear God, Thank you. Thank you for this beautiful little girl. Please get us through this. I know you can get us through this. I know you can bring her back to us. Please show me what to do. Please lead us in the right directions. Please help me, to help her. I know she is in there, help me bring her back with us again.
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The mother is me.
The father is my husband.
The little girl is Ella.
The above, is a true story.
That was us, in December of 2010.
Now, every day when she looks at me and smiles,
when she climbs into my bed again in the morning – just to snuggle,
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.
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.)
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.