Recently Ella started a new therapy, methyl b-12 injections. (I’ll post more on that at a later date.) Since starting the mb-12 injections, she’s had some major breakthroughs. She has been saying, “Mama” and “Bye Bye” on a daily basis, along with a few random words here and there, and many new sounds.
It was so comfortable hearing her call me “Mama” everyday, whenever she needed me, whenever she wanted me. And sometimes she would just pat me and smile and say, “My Mama“. :)
When she looks into my eyes, pats me, smiling, saying, “My Mama”, my heart feels like it will swell so big it may burst.
Then Wednesday (May 1st), she didn’t say anything. Thursday she didn’t say anything and she didn’t eat well. By Friday my best guess was that she had a sore throat. She’s not able to communicate when/how/where she is hurting, so it was merely a guess. But all the signs were there. It’s hard when your child doesn’t feel well and you can’t just ask them what is wrong and get an answer. By Saturday her appetite improved. But still no words.
Saturday she did start making her former repetitive sound, “mmmmmmmmmmmmmmmmmmm” again. I couldn’t decide if that was comforting or scary. It felt scary. But I reminded myself that at least it was a sound, and sounds are better than silence.
Sunday, still no words, but more “mmmmmmmm”.
Logically (there’s that word again), I knew she hadn’t felt great and that was probably why she stopped talking. But it’s scary. When you’ve went from having a child that talked perfectly in full sentences, then was vaccine-injured and lost all of her speech within a few minutes, it is so glorious to get a little *consistent* speech back. And it’s a little terrifying when it goes away again.
Fear tries to grip your heart.
You think, “What if that’s it?” ”What if I never hear Mama again?” ”What if all this progress was just some fleeting thing?”
It’s scary. No matter how many logical excuses you can come up with. But I pushed it aside every time it popped into my mind and moved on.
This morning I realized we were fast approaching a week since the last time she said a word (Tuesday April 30th). Fear gripped me big time this morning. I felt something just short of panic, at the idea of never hearing her sweet voice call me Mama again.
For a few minutes, I let it get the better of me. Then I gave myself a pep talk (in my mind) and reminded myself of all the logical reasons it was probably just a minor set back. That didn’t really help.
Then I gave myself a mental kick in the rear, and reminded myself that allowing fear to grip me didn’t help anyone. It didn’t help me and it certainly didn’t help Ella. My time would be much better spent praying.
So that’s what I did. I prayed to God to just let this be a minor setback. I prayed that she would get the words back that she had last week, and that her ability to speak would grow. I told God that I believed that he would, in time, heal my little girl. And continue to help lead us in the best ways to do that. Then I asked him to give me one small word from her, just something to hang onto. Please. Anything, just one word, any word.
Then I said, “Amen” and went about my day.
A few hours later, Ella stared at me and whispered…”mmmmaaaaa……mmmmmaaaaa…… maaaamaaaaaa…. Mama Mama Mama Mama” .
She worked so very hard to get it out.
I said, “Oh Ella! You said Mama!!!!” And she smiled SO BIG and ran to me.
I went and sat down and she sat down with me. I hugged her so tight and she whispered, “Mama Mama Mama Mama Mama Mama Mama“.
Later in the day, she said it one more time, in her full voice, no whisper.
Just knowing that she could still do it, was all I needed.
Sometimes I feel like these tiny little words, or her other tiny steps of progress, are like air to me. I need them desperately. As long as I can get one, I can run on that for a long time. I can be strong for her. But sometimes I falter, and I need something to keep me going. To keep me strong. And thank God, he gives it.
She didn’t say Bye Bye today. She didn’t say Hi. But she said, “Mama”. And just a few minutes ago, she said it again and ran to me. She’s sitting on my lap right now, as I type this post.
By the way, Ella says to tell you:
nmnjnn
I’ve been letting her spend some time typing. I help her spell out little words and phrases. I’m trying to teach her that what buttons we push, put words on the screen. I tell her that someday, she’ll be older, and she’ll be able to type and tell anyone anything that she wants to say. Whenever I say that to her, she raises one eyebrow as if to say, “Really?” And I say, “Yes, really.”
Right now she’s still sitting on my lap, listening to one of her favorite Avett Brother’s songs, holding her lovey and smiling so big. And we’re both ok. We’re better than ok.
Autism Awareness Month brings with it all of the signs, Facebook postings, fundraisers, walks, etc. that go along with that. And I admit that I am at the point where I (like many others) are starting to cringe at the word “awareness“.
Many have said things like, with rates going from 1 in 10,000 to 1 in 50, is more “awareness” what we really need? Many say we need “action”, not “awareness”.
Those are feelings that I have felt also.
We have come to associate “awareness” with inactivity. Why? Well, because the two often go hand-in-hand.
The words “awareness” and “acceptance” have, to many, become dirty words.
I understand that feeling.
I have a lot of strong and passionate opinions on the subject of autism. So much so, that at times, it is difficult for me to write about.
I recently saw where the organization known as Autism Speaks, threw kids like Ella under the bus, jumping on the they-don’t-exist, this-didn’t-happen-to-them bandwagon, and it made me livid. So livid, that I haven’t been able to write about it here yet. I want to. I want to share their nasty quote and tell you all just how much I loathe Autism Speaks. But it’s hard. These emotions run so deep for me. So even this topic today, is hard for me to write about.
But I think it’s important for us to NOT allow the words “awareness” and “acceptance” to become dirty words.
We need to TAKE BACK “awareness”! TAKE BACK the word “acceptance”!
Don’t allow these words to become synonymous with inaction, heads-in-the-sand, and defeated attitudes. That is the path that we are on right now. WE can stop that.
Even the word “acceptance” has been starting to bug me lately. Then I felt hypocritical, because what do I call this blog?
Enduring the Silence: a blog about autism with acceptance, love, faith, and fight. I thought to myself, how can I hate a word, that I put in the title of my very own blog?
But I don’t actually hate the word. What I hate is inaction. What I hate are children being told that they can’t get better. What I hate are children being denied medical treatment, due to their autism diagnosis. What I hate… is a lack of hope and fight.
For many, “acceptance” seems to mean that we just sit back and accept this is the way it is, and they can’t get any better.
To me, “acceptance” means that I accept and love my daughter forever, regardless of what her capabilities are. I accept her quirks. I accept all of the things that she needs to make life livable for her. I accept my role as her warrior mother. Because that’s what we are. We are warrior moms. Fighting a system that tells us that our children cannot get better, and to plan for the worst. A path I have previously dubbed here, “The No Hope Hoad“.
I don’t mind her being “different”. Anyone that knows me, knows that I often say, “We are all weird in our own special ways.” I truly believe that. I’m not out to make her, what society tells us a cookie-cutter version of what a child her age should be. I don’t want that for any of my children. I want them to be strong, independent, unique, and true to themselves.
So I ask you, to reconsider the word “acceptance“. Reclaim it. Take it back from the negative, naysayers.
And what about “awareness“, the other word on the fast-track to becoming a dirty word?
Instead of allowing that to happen, perhaps we should define it like this:
- Be aware that autism is a medical issue, not a mental health issue.
- Be aware that there are real medical treatments that improve the lives of those with autism, sometimes so much so that it results in a loss of diagnosis.
- Be aware that those with autism are currently being seriously discriminated against.
They are being denied medical care for real medical illnesses, solely because they have the “autism” label slapped on them and it’s association with mental health only. In spite of the fact that current research shows serious medical issues in the autism community.
Children with autism often have chronic diarrhea or constipation. That should not be ignored, instead of treated. That is a medical issue. Treat it. Children with autism often have severe allergies. That is a medical issue, that requires treatment. Children with autism often have mitochondrial dysfunction. If you treat it, they show improvements.
These are just a few of the real medical issues, that when given medical treatment, can provide real improvements in functioning and quality of life.
Individuals with autism should not be denied medical care, because of their autism diagnosis.
- Be aware that lack of speech does not equal lack of intelligence.
Those are two completely different things. If you have laryngitis are you suddenly stupid? If you have laryngitis do you suddenly have the IQ of a toddler? Of course not. And neither does a non-verbal autistic person. Please remember that.
As I type this, there are adults with autism, who are locked away in facilities (many of them being abused) that have never had anyone offer them real medical treatment, or even an iPad, to help them communicate in a non-verbal way. Is that fair? Or is that a life worse than a prison, for individuals who have committed no crimes?
- Be aware that 83% of females with developmental disabilities are victims of sexual assault.
(The figure is 32% of males with developmental disabilities.) Are those acceptable statistics? Of course not.
- Be aware that some people seem to be born with symptoms that lead them to an autism diagnosis, and others were not born that way. Some who were not, had “triggering events” that led to their development of autism.
An example of that, would be Ella’s severe vaccine reaction that caused her to loose skills within 15 minutes of her vaccines. Watching your child loose their ability to speak, chew, make proper eye contact, etc. within minutes, is terrifying. Please be aware, that many children were not born this way.
- Be aware that there is real help available.
Not every doctor out there will pat you on the back, give you how-to-apply-for-social-security info, how-to-sign-up-for-ABA-because-it’s-all-you-can-do-it’s-the-only-”proven”-treatment-garbage, tell you not to plan for your child to ever potty train, and to need a live-in facility as they age.
If you have a loved one with autism and are stuck with those sorts of professionals, fight harder. There is hope.
(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.
That sucks.
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.
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.
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.
Ella had a long day today. Disruptions to her routine are traumatic for her, no matter what the disruption. But if you add in multiple blood draws and other tests, you get a stressed out, stimming, exhausted, “zoning out”, little girl.
This calls for a very specific regimen, which goes like this:
- a fun bath
- a long nap
- Mommy snuggles
- a SpongeBob DVD
- followed by a nice bit of tickling
and…
thankfully my little Miss Ella Rose is all smiles again.
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! :)
