This is a story that defies the odds. It involves years of illness, crushing diagnoses by doctors, and miraculous recovery. It demonstrates how the brain really can change itself.
And it also involves Fast ForWord, a neuroscience based program used for both remedial learning, and learning enhancement. In a special episode of the Learning Capacity Podcast, I spoke to a mother about her daughter’s journey through illness to recovery.
Given the nature of the details involved, I refer to my guest only as Esther, which is her real name, and her children.
Listen to the podcast.
Topics covered
- Childhood illnesses (pneumonia, seizures)
- Learning impairment from illness & medication
- Looking for ways to help learning
People & organisations mentioned
Resources/books/articles mentioned
Previous podcast episodes on SoundCloud
If you would like to read the complete podcast transcript, here it is:
Episode 69 of The Learning Capacity Podcast
How Fast ForWord Helped Heal and Restore a Life: Ester’s story
Colin Klupiec: Ester, thanks so much for joining us.
Ester: My pleasure.
Colin: Both your children have been using Fast ForWord for some time now, but let's start with the story of your daughter. She became quite ill with pneumonia, which then also led on to some other complications. Can you walk us through that?
Ester: Yes, my daughter had had pneumonia several times, and had a particularly bad bout of it, and then all of a sudden, started having grand mal seizures, which are very frightening for a seven-year-old. And she then had to go on some very heavy sedative medication to bring the seizures under control. And she was just not retaining any information that she was learning, and we were going backwards very quickly. Yeah, it was definitely a really frightening time for all of us, and we felt like things were spiraling out of control faster than we could keep up with them.
Colin: Was there any indication that something was up, or did the pneumonia just appear out of nowhere?
Premature birth, pneunomina & seizures
Ester: My daughter was actually born three months early, and preemies often have problems with their lungs, and with something that we knew about from spending time in the neonatal intensive care unit, but saying that, usually by seven, things should have started improving, not getting worse. The particular pneumonia that she had was called mycoplasma pneumonia, and I believe that it started to affect part of the brain, and that's why she started having the seizures, although no specialists that we went to here or overseas, could ever pin point it back to that. That was just mother's intuition.
Colin: When you say that she was, or this is a very hard thing for a seven-year-old to endure, you did mention that she had pneumonia several times. At what age did that start?
Ester: Yeah, it's probably about, she was about five, and in between the ages of five and seven she had had pneumonia 10 times.
Colin: Ten times? Wow.
Ester: Yes.
Missed most of school from age 7 to 9
Colin: That's a... that would be incredibly intensive I would imagine, and during that time I would assume that she missed a lot of school.
Ester: Absolutely. She...more importantly I think, she missed most of the school from the age seven to nine, and she'd had pneumonia you know, a lot when she was seven, and like I said, she had that particularly bad bout of it that was called mycoplasma. And then that led to the seizures that she was having, and therefore, she missed out on nearly two years of school in and out of hospital.
Colin: Now presumably that would have had some kind of impact on her overall general well-being. I'm just trying to get my head around how intensive that must have been. How did she cope with that in addition to the lack of academic progress?
Ester: Yeah, look, it was a really difficult time for her, and it was frightening for us to watch her going backwards. But in particular, the seizures were affecting her brain, and after one really intense grand mal seizure, she couldn't remember how to write her name, and couldn't remember the simple tune of how to sing "Twinkle Twinkle Little Star" anymore. So we felt like all those years of school that we'd done, we were right back at the beginning again.
Colin: This must have been an incredibly difficult time for thinking about how to then move on with your schooling, because I mean, after having done that for a couple of years, you suddenly think, well, "Where do we start now?"
And I think that's what you were just alluding to. You must have been thinking about either repeating years, or taking on some coaching, or some kind of intervention. How did you come to the conclusion that something like that was going to have to happen in some form or another?
Less than 1% change of outgrowing the seizures
Ester: Yeah, unfortunately the medical staff, who were amazing, but obviously we didn't, when it comes to your children, you just don't stop at anything in getting the best help you can for them. And we just didn't stop until we found the best neurologist in Australia. And he pretty much said to us that, "Sorry, this is going to be your life."
He didn't see any way that she would be growing out of this epilepsy that she'd been diagnosed with, and that she would always struggle to learn. Not easy to the parent to hear someone speak that over your child's life.
I asked, statistically you know, what were the chances of her outgrowing this or overcoming this, and he said, "Very, very, very slim, but if you need a percentage, it'd be 0.02%." And I guess that's the kind of people we are, we have a lot of faith, and I just said, "Okay, well we'll have that percentage, then."
Colin: As you'd saying though, I just can't imagine what that would be like listening to a doctor saying that. Did you at all think that this was perhaps a bedside manner problem as well, or did he communicate it in an effective way to you?
Ester: I think he was as kind as he could be, and he's an absolutely lovely man. I guess he's just used to seeing this, and he is the top specialist for epilepsy in Australia for children, a pediatric specialist in that field, and this is what he sees day in, day out. And after you've spent quite a few weeks on the neurological ward at Randwick Children's Hospital, you walk out of there with that diagnosis feeling blessed.
Colin: So when he says, "This is something that's going to be your life," what did that actually look like? What was he suggesting there?
Ester: He was suggesting that the seizures would continue and if we did get them under control, we were using five times the amount of an adult dose of epilepsy medication, which is a doping medication, basically. And so the little girl that we once knew no longer existed. She was burned out, and actually quite aggressive sometimes, and before taking that medication, she was the sweetest little thing.
So our whole family and her two brothers had to adjust to getting used to this "new kind of normal," as they were calling it. Which we did our best to accommodate that, but it was really difficult, until we got to a point where I just said, "We can't live like this anymore," and I needed the help of a specialist to take her off the medication to see whether we had, whether my daughter was still in fact there.
And thankfully, he listened to me. He did say, "Look, there's a lot of other medications we can try, but we'll just slowly go through them." And there would be then the trial of medicinal marijuana that was coming in then, and I just said, "Look, with all due respect, and standing on my faith, you can try all of those medications. If coming off her current medication, she goes back to having seizures, then we can try that, but let's give her an opportunity just go back to normal, and see whether she still in fact has it or not.
And thankfully, she came off, and we were on tenterhooks, and watching her very closely, and it's been a year and a half now, and she's been medication and seizure free. And the specialist is over the moon, and told me personally that he loves being wrong.
Colin: I'm sure he does. Just pausing there for a moment, you mentioned the couple of other brothers, and the "new normal" that they described that as. How was that affecting them? Was that affecting them with their academic progress as well? Was it a distraction for them?
Ester: Absolutely it was, and particularly my middle son, who is obviously quite close to his sister, it was really starting to show. It was making him struggle at school. He always struggled to learn a little, but he was significantly dropping back, because we just didn't have the extra time to put in to him, because we were always focused on his sister, and making sure that she was safe, and not having more seizures.
Colin: So when the decision was made to try and reduce the medication, or completely come off the medication, did I understand that correctly, she actually completely came off the medication?
Ester: She completely came off the medication.
Colin: So that happened over a period of time, I would imagine?
Ester: Yeah, it was a very slow weaning process.
Colin: And so during that time, did you then start to think about what other things you might need to do to try and reverse the issue of lost schooling, or were you just completely focused on trying to find the original child again after the effects of the medication?
Ester: Yeah, look, we were trialing a lot of things while she was on the medication still, because like I said, she couldn't retain even the word "in." She could learn how to spell that, and within 10 minutes, and then it would be gone again. And we knew it was as a result of the medication because, well, we just refused to believe that it was a result of the many seizures that she'd had.
And so we held onto that, and just kept plowing through, and kept looking for ways to help her to learn, because we just said, "Well, every child can find a way to learn. If you can learn to love me, you can learn how to learn." So we were looking even then while she was still on her medication, speaking to a lot of professionals, and we came up with the Fast ForWord program.
Colin: Were there communications or conversations with the school, or did you look for educational consultants in your search for the intervention which then ended up being Fast ForWord?
Ester: I did that individually, looked for myself, and then once I saw that there was small, very small progress, in that program I decided to approach the school and became a big advocate for Fast ForWord. That then resulted in Fast ForWord becoming implemented into the school for all the kids that were really struggling, and now there's a lot of kids in that school who benefit from the program.
Colin: So there's a lot of tenacity involved in doing that kind of research. How did you actually find Fast ForWord? I mean, was it as simple as Google?
Ester: No, it was speaking to...Again, in my quest for the best of the best, I wanted the best speech therapist to work with my daughter to make up for the lost information. And it was at that stage, it was the place at Lindfield that said, "Look, this particular speech therapist is not available, but have you heard of the Fast ForWord program?"
Again, the tenacity, I was just not going to stop at anything for her, but when I found out that it was a computer program, I thought, "Brilliant. Great, we can do that at home."
Colin: Yeah, that does take care of the tyranny of distance. So I'm assuming though that you would have done a bit of background reading after the suggestion was made?
Ester: Yes. Yes, I looked into a lot of that. I looked into a school in Canada. There were a lot of different things that I explored that seemed to be the most practical without having to move my family overseas. I thought this is something that my daughter can do, and that even her brother could benefit from. And she was benefiting from the program, even with the ridiculously heavy medication she was on. So therefore, when she was coming off the medication, we were all the more determined to keep going with the program.
Colin: In what ways did you see the changes start to happen? How did you know that something was changing?
The program reports on progress
Ester: Well, the best part about the program is the way it reports back to you and it shows you progress. And the fact that we could see her moving forward, albeit slowly, was enough for us to keep going.
Colin: And did that also come out in her communication with you, in her behavior, and in her general relationships with people?
Ester: Yeah, it was one of the special ed teachers who said to me, "Ester, I'm seeing a change in your daughter; things that we've struggled on and stayed on for a long time, she's moving past that." And I told her then, "Well, it has to come back to that program, because that's the only thing we're really doing." And not long after that, was when I presented it to the school.
Colin: Did you do that largely at home, or was it also done at school?
Ester: It was done at home to start with, but I was having increasing difficulty getting her to do the program, because it is very mentally taxing, especially when someone was going through what she was going through. And I started her in the school setting, once I had it implemented at school, because it was already an environment for learning set up for her, and that discipline of having a teacher say, "Okay, it's time to do your computer program now," she would just do it, without too much complaint.
Colin: So when you say that she missed a lot of school, and that was between the ages of seven and nine, where did she actually go back in? At what level did she re-enter a normal school environment?
Ester: Yeah, she just kept along with her class, because they were so sweet and supportive of her when she was going through everything. I believed it was really important for her to stay with her peer group. And she's now in another school and we've taken the computer program over with her to that school, and she is in year four, but she is functioning at a year one level.
And again, I keep saying the gap seems to get wider and wider if you keep comparing, but for once, this is a significant improvement, and we just keep on that learning train, and hopefully we catch up.
Colin: The social interaction then with children of her own age then seems to be okay, I take it? So it's...I’m thinking that it's just purely an academic difference, so she fits in quite okay?
Ester: She is very well supported at school, and socially, look, she's great, she makes friends very easily. And the kids know that she's not at their level, but they're very accepting of her, thanks goodness, especially at that age group. I think if this had all happened in high school, it would be a bit different. But while we still have that positive environment surrounding her, we'll just keep on plowing on.
Colin: Is she able to reflect back on her own experience and make the connections between her illness, the seizures that she experienced, and the intervention of a program, in this case Fast ForWord, and her current situation? Can she join the dots there?
Ester: Constantly. She constantly says, "When I was on the medication, I couldn't do this, and now I can."
Colin: So she's very self-aware of what it was like to be on the medication?
Incredible attitude towards learning
Ester: Yes. Very self-aware, and very much as part of her healing process, has to verbalise, "I wasn't this person when I was on the medication, and now I am." And she's the one who constantly reassures me that, "Don't worry, Mum, I'll catch up, it'll all be okay."
Colin: So presumably, she's got a pretty good attitude towards learning, and enjoys the program?
Ester: Incredible attitude towards learning. And just...we have a little saying, “you know just to never give up, and you can always do it”, and she just keeps quoting that and never gives up. She's amazing.
Colin: That's some wonderful commentary now coming out of neuroscientific research in terms of if I can mention the book written by Dr. Norman Doidge, "The Brain That Changes Itself." This is a clear example of a brain wanting to change itself. I can imagine that there might be listeners on this conversation thinking, "Well, okay so you've had some remarkable turnarounds, and you've have had some pretty hard diagnoses from specialists, but now things seem to be turning around." You've used that program, and it's a computer based program.
Some people can be a little bit skeptical of that, and I understand that. So, people might be saying, "Are there any firm conclusions that you can draw between the improvements that you've seen and Fast ForWord or do you have any scientific evidence?" What's your take on that?
Neuroplasticity: the brain can changes itself
Ester: Yeah, look, obviously this whole experience has thrown me into researching, and I've read that book, "The Brain That Changes Itself," and I've done a lot of research with Dr. Caroline Leaf, and gone to a lot of her seminars, where she talks about neuroplasticity. She really is a leader in that field, and says based on her scientific research that the brain can change itself.
So for me, they was the only words I needed to hear, to say, "Well, that can happen for my daughter. I'm not going to give up and just take this diagnosis to say this will be my new normal."
Colin: Do you talk about the idea of the brain changing itself with your daughter?
Ester: Yeah, we do have a bit of a dialogue that you are in control of your brain, and you tell your brain to learn.
She is starting to learn to read
Colin: How has this affected her ability to read?
Ester: After we came off the medication, there was absolutely no way we could read, and we have very, very slowly made progress, obviously with the use of the program and the help of a tutor, who helps implement things from the program.
Yeah, we're starting. We're starting to read now, which is very exciting, and I'd love to have this interview in a few years' time, and be able to tell you that she is reading and writing with no problem. But I can see it, we can definitely see the light at the end of the tunnel.
Colin: Well we'll certainly pencil that one in. I'd love to have that interview with you. Is she enjoying the opportunity to learn how to read? So is it...what I mean to say is, it's not so much, "Now I can read, because before I couldn't," but, "Now I can read and I really like to read." Is that what you're seeing now?
Ester: Yeah, I'm seeing the confidence boost in saying, "Actually, I'm getting this. This is amazing, and I'm making a lot faster progress than what I was on the medication." So yeah, she's definitely got that eagerness to read.
Colin: What about the future with ongoing medical treatment? Have you got any ideas as to how that might pan out?
First the healing, then the learning catch up
Ester: Yeah, look, as far as we're aware, she's completely healed, and it's a miracle. That's what we've been told. So we will cross that bridge if and when we ever have to come to it.
Colin: So the healing has taken place, and now it's just a matter of doing the academic catch-up because of the years lost?
Ester: It's interesting you say that. Actually, I always talk about her healing in two parts. First of all to have her seizure-free and medication-free and the disease be gone is significant in itself. But the second part of her healing is to help her to catch up and restore what was stolen from her over all those years.
Colin: How old is she now?
Ester: My daughter's 10.
Colin: What does the future look like? I mean, how long do you think that she'll continue with the program?
Ester: The future looks like she will continue with the program for as long as it takes.
Colin: Or for as long as it can run, I presume as well?
Ester: Yes.
Colin: And what's her view on life now as she looks forward, as she looks at...okay so she's got a few things in her life. She's using the program, she's back at school. As far as she's concerned, she knows that there are issues, but things are looking bright and relatively normal. I'm assuming that that would also be affecting the family in general, and the two other boys. How's all that looking now? As you look forward, what are you looking forward to?
Ester: Look, life is sweet on the other side when you've been through an experience like that. It's like a black cloud is lifted, and simple things, like the sky never looked so blue, and it's just so beautiful to be outside of a hospital room, you know.
So we appreciate life so much more on the other side of this, and those other things, like catching up, seem almost insignificant in comparison to what we've been through. We're grateful to have her, to be able to move forward, and to see any bit of progress, we celebrate that.
Colin: Ester, it's been wonderful to speak with you. Thanks so much for your time.
Ester: Thank you. I hope I can help others who might be going through something like this to just never give up, and keep searching for answers, and remember that the brain can change itself.
Colin: Wonderful. We'll be sure to catch up with you in a couple of years, I'm certain.
Ester: Fantastic. I'd love that.
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