Proloquo2Go update

I probably sound like a broken record, but I can hardly believe it's been so long since I've posted an update on our use of the communication software for iPod and iPad Proloquo2Go. I posted a response a while ago on this blogpost by Sam Flatow.

I wanted to elaborate here. Instead of responding to his (not entirely invalid) criticism on spending a arguably very large sum of money on iPads for kids, I wanted to tell more about how this has changed our live. And has it ever.

First off, we knew that the iPad was going to treated less than gently, so we invested in an Otterbox. It adds considerable bulk and some weight to the iPad, but it creates a rubber bumper around it and most importantly it's screen, and the iPad has survived all the very real challenges it faced, as listed in my comment on Sam Flatow's piece. I probably even forget some of the horrible abuse this intricate technological device has suffered over the months. In my response I forgot to add that I also got a film to cover the screen to protect it, it does not interfere with the otterbox, and so far, not a scratch.

But aside from it's surprising physical sturdiness, it has opened up a world of communication for my son he can take wherever he goes, and it's been an inspiration, and a source of hope. No exaggerations.

I wasn't kidding when I stated in my response that F2 had figured out how to work the iPad in 5 minutes. Granted, he's always been fairly visually driven, and his speech therapists have been working very hard with him to communicate with pictures for years. But still. He looked at it. Turned it around a few times, tried to take a bite off the edge, curiously touched one of the pictures on the screen, and off he went. Because we figure there always needed to be a functional iPad around, we got 2, and named them "Mork" and "Mindy."

About 3 weeks later we had gone to lunch with him, and he'd been playing around with Mork and Mindy without us knowing exactly what he was doing. When lunch arrived I tried to take it away, so he could eat, and suddenly Mork says "Why did you do that? I want Blue's Clues please." It was jarring to say the least. Needless to say I immediately gave Mork back, and retreated to my side of the boot.

When F1-3 was ill a while ago, and throwing up, he came over several times to say "Brush my teeth." He asks for "drink, flavored water," "Blue's Clues," "Face," (a character on Nickolodeon, "use the computer," "something to eat, breakfast, cereal." I mean, it's awesome. He's communicated 10 times more in the past 6 months, than he has his entire life before that. I can go on and on, but we learn new things every day, and we're not even trying very hard. For us, the iPad's been a lifesaver. It has greatly enhanced the quality of his life. It's fun, it encourages learning, and it's very intuitive. And even though he may be a special case, because of his communication issues, but I think the reason it works for him, applies to most kids.

Edit: Not quite the same arguments as mine, but there is at least one other person who thinks iPads are great for kids.

Proloquo2go

Proloquo2Go will soon be the latest rage in Makita's household.

F1-2 is totally, entirely non-verbal, which isn't exactly easy. Not being able to speak is not the same as not having anything to say.

F1-2 (like his parents) is often frustrated when he clearly has something to say, and we don't understand him. A few things have recently come together to allow us to take a gigantic leap in our interaction with him.

1. Since the Summer of 2009, F1-2 has discovered the wonderful world of computing, and he's quite good at it. We have a Netflix account and he can navigate to his favorite episodes of Blue's Clues (still his favorite, 8 years and counting). More than that, even with his limited fine motor skills he can navigate to his favorite part of each episode with remarkable ease. We've been looking for ways to use his skills in innovative ways, but never found anything that was quite right.

2. We started using a picture-based system called PECS to communicate with F1-2. It was a great idea, but there were some snags in the implementation. When we started our youngest, F1-3, thought there was nothing funnier than hiding the pictures that were attached to a board on the wall with Velcro. Later on, F1-2 caused problems himself.

When he wanted to use the computer, he would hide all the pictures except the one for "computer".

Of course, the pictures got crumbled, sucked on, lost, flushed down the toilet, you name it. And when the pictures aren't available the whole communication system just falls apart.

On the good side, F1-2 would very quickly pick up on the meaning of newly introduced pictures. We were running out of space, there were too many pictures. And we couldn't get very specific with the pictures either. We only had enough room for "drink", but couldn't ask "water" or "juice". We couldn't keep up with his increasing "vocabulary. This is a good thing.

3. The makers of Proloquo developed a portable version called Proloquo2Go to be used with the iPod Touch. Within a few months it was a big, big hit, being used for many children with communication issues. Extremely portable, lots and lots of pictures were possible, a huge leap. Not perfect though. The screen is small, so it's sometimes hard for children with fine motor skill issues (such as F1-2). Also, the volume isn't quite high enough to allow the iPod to "speak" for the child.

4. Apple came out with the iPad.Wow! It's a humongous iPod. Large screen, much louder, still very portable. Amazing!

So, a training, and several hundred dollars lighter, we're expecting an iPad and a couple of iPods next week. The iPad is mainly for use at home, the iPod for on the road. The Otterbox has been ordered to prevent major damage to the iPad. You wouldn't believe how excited I am, and how much I'm looking forward to hear what F1-2 has to say.

There's a lot more going on in there than we know

My son, F1-2, has special needs. He is completely non-verbal, he makes some sounds, but if they mean anything in particular, I don't understand his language. Over the past year or so he's made tremendous progress in communication by using pictures. Specifically, the PECS system of communication. We have a board with velcro strips on the wall, and the pictures stick to the board. If he wants anything, he gets the appropriate picture and hands it to us. We started out with 1, then 2, and gradually worked our way up to about 8 pictures.

A few months ago he also learned how to open a web browser, and navigate his favorite tv show on Netflix. So it was time to add an additional picture to the board, a computer. By the end of the first day, it was by far his favorite picture. We didn't really have to teach him that one.

A few weeks ago, all of his pictures suddenly disappeared. It was hard to communicate with him without the pictures. I finally found them in a stack underneath the couch. I thought he might have slid them in the crack between the wall and the couch, but why would he do that? Maybe it was F1-3? She's been known to pull pranks. And so has F1-1.

I put all the pictures back on the board. Within a week they all disappeared again. All, except for "computer". Huh? Now I'm certain that he must have done it. He wasn't going to risk losing access to his computer, so he was careful to leave that one out. I still haven't found the pictures. There really is more going on in his little head than we give him credit for. Sneaky little fellow.

More talking

In an update on "talking", if we say to F1-3 "ma-ma-ma," which he is supposed to repeat back to us, he now consistently responds "eh-me-me." This is fantastic progress in two ways. He is actually trying to say "ma-ma," which is not trivial for him to do on command, but he the mimicry is something he has not been capable of before. We're so pleased. Just in time for his 7th birthday too! Woohoo!

Talking

Question: Ah-ah-ah?
Answer: Oh

It may seem silly to most people. Even parents. For the past few weeks, if I say to my 6-year old "ah-ah-ah" he consistently looks me in the eye and responds with "oh." That may not seem like much, but for my baby who is a week and a half short of 7 years old, it's huge. It's humongous. It's the closest thing to a miracle I've ever seen.

So when his speech therapist told me to switch to "ooh-ooh-ooh" and wait for a response of "eeee" (of course, after demonstrating this to him), I was sceptical but hopeful, considering that after months of practice he did latch on to the ah-ah-ah and oh sequence. But lo and behold, 2 days later, and every day since, he is consistently responding with "eeeee" if I "ask" him "oh-oh-oh." I'm left speechless. And I can assure you this doesn't happen very often. Being speechless that is. Not one of my problems.

A week after we started that sequence, the therapist is so pleased with his progress, that we're going for big now. I will say "ma-ma-ma" and I should teach him to say "da-da-da." The reverse will also be acceptable, which I prefer. We can't have F1-2 say "da-da" before he learns to say "ma-ma," right? He's got to be kidding me.

Think of the possibilities. If he can learn to say mama or dada, there are not enough words to describe how I would feel about that. I'm trying really, really hard not to get my hopes up too high, but I can hardly imagine a world in which F1-2 could really talk.

Ok, I've got to stop writing now. I'm at work, and it would be unacceptable for me to start bawling in the lab, and I feel the burning of tears behind my eyelids. There is real hope.

F1-2 likes older women

Now that F1-2 is growing older, and his disabilities make him stand out more from his peers than before, it sometimes is just a little weird.

Yesterday we went to a restaurant with him for the first time in about 3 years (I think, it's hard to keep track, it may even be 4 years). And he kept on wanting to cuddle up with one of the older women at another table. I think older women remind him of his loving grandmothers, which is kind of cute.

However, it's not socially acceptable to go up to a total stranger to start playing with her earlobes. A sure sign of affection coming from F1-2, but try explaining that to the woman who just had her space invaded by a squealing kid, trying to pull out her earring! My husband had to go over several times to retrieve F1-2, but as soon as he let go of his hand, F1-2 would let out a loud, happy yelp, and limp back as fast as he could. He must have thought it was some kind of game. The woman smiled politely at him, and eventually he decided he had had enough. She wasn't as much fun as he thought she would be.

But wait, what about her?? And off he went to accost some other woman sitting nearby. Again, P1 had to go after him (I had my hands full with F1-3, so my husband was in charge of running after F1-2). This woman actually high-fived him. Oh well, so much for a nice family outing. To avoid further embarrassment, we packed up and left as quickly as we could. It will probably be another 3-4 years before we try that again.

Not remarkable

My mother-in-law is in town for a week. This morning she came along while I brought F1-2 to school after his therapy session, so she could drop me of at work and use the car all day. She told me that she had seen some celebrity on tv who has a child with special needs (she told me the name, but I don't typically keep up with celebrity news, so it didn't mean anything to me). She told me how remarkable she thought this woman was for doing so much for her son. All the therapists she has, and all the wonderful things she and her son have accomplished as a result of that. Apparently many members of the audience commented on how much hope they derived from this woman's experience and how great it was bla bla bla.... My mother-in-law was ready to go on and on about this, when I interrupted her.

This does most certainly NOT fill me with hope. This very famous woman makes more money in a week than my dear hubby and I will make in our life. I look at my dear little F1-2 and see a sparkle in his eyes that tells me there is so much more in him than we give him credit for. But it requires a lot of time that we simply don't have, and probably will never have, because we have to work our butts off to keep a roof over our heads and food on the table. We will never be able to afford great therapists to work with him every waking moment to get every little ability out of him. And therefore, so much of what he is capable of will never come out. It is utterly depressing.

So many children out there with special needs do not have rich celebrity parents, and they are screwed. They will never reach their full potential. It does not fill me with hope that this woman could do it, although I'm glad for her son he does so well. I'm engulfed by sadness for all the thousands of children like my son who get left behind.

I think I may have have shocked my MIL. Obviously, she hadn't thought of it like that. But I do, and I feel guilty about not being able to spend more time with F1-2 to work with him, about not being able to afford more therapy for him, about the potential in him we will never witness. I'm so sorry my sweetheart.

See what I mean?

Life around me really is never boring. Remember how happy we were that F1-2 was in a class with 4 students, 1 teacher, 2 aides, and 1 intern? It didn't last long. Yesterday I was informed that he class had been scrapped. Yes, scrapped. Now his class had 1 less teacher, and 3 extra students. The school board decided that the kids in his classroom were over-served, and decided to combine the two functional classrooms, ship his teacher off to another school. Now he is in a classroom with 7 kids, 1 (different) teacher, and 2 (different) aides. All of the kids in F1-2's room were non-verbal,they now constitute more than 50% of his new classroom, and the new teachers has very limited experience with non-verbal kids.

So why was the teacher better qualified to teach non-verbal kids moved to another school, one might ask. And the answer is, she had not been there long enough. Yep, the other teacher had seniority, did not want to leave, forget about having teachers to meet the needs of the majority of the pupils. We've got our priorities straight here. And we most certainly wouldn't want to involve any parents while these decisions are being made, they might point out these little anomalies that will mess up the way we work. And around here, seniority rules. We'll inform the parents once it's too late to change stuff. We can't swap the teachers anymore, F1-2's teacher has already been assigned to another school. Never mind that she is leaving kicking and screaming that she is concerned that the children's aren't being met.

So here we go, having to fight for our son's already shaky future. He is going to be in the same classroom for the most important of his formative years, from Kindergarten through 5th grade. Whatever we do now, will impact the rest of his life. Overly dramatic? Maybe. But it just infuriates me that decisions can be made based on anything except what makes the most sense for the kids. If it wasn't for the fact that his current school is the *only* school in the county with therapists on site, I would have demanded him going to another school.

We haven't made up our minds yet where to go from here, but you can rest assured that noise is about to be made.

Touchy

I mean Touch Screens. They do wonders for my little F1-2. And since he is in his new Kindergarten class with a grand total of 4 students and 2 computers, he is been exploring the world of software for children with disabilities like never before. He seems to really like the software called "The Letter Machine" by Edmark. It uses a type-writer like interface on the screen, for the children to use the touch screen to touch a letter, which then results in cutsie pictures popping up and funny sounds. Perfect for F1-2. Now in December my parents (thanks!) purchased F1-2 a touch screen, but at that time he did not want to use the computer at home.

Now that we're in the final stages of re-constructing the kid's play area, the computer F1-2 used to use occasionally, has been taken over permanently by F1-1. I gave my old laptop to F1-2, and now we have it set up for him. But darn it, the touch screen doesn't fit the laptop monitor!! A screen for the laptop monitor would cost me another $175, and that is money we simply cannot shell out right now. And F1-2 is constantly hanging around his laptop, wanting to play with it, but frustrated at the lack of touch screen. My heart aches for him. I guess we're going to have to find a way for to get him another touch screen.

My husband suggested trying to sell the old touch screen, but from the little research I did, it doesn't seem there is a big market for used touch screens. I doubt we'll get much out of that. And of course, if I do splurge and buy the kid the touch screen, how much do you want to bet that the 6-year old laptop finally keels over within the week?

New schoolyear

This morning was the start of a new school year. An adventure for sure. With F1-1 starting middle school, and F1-2 starting Kindergarten, we have a lot of changes to deal with.

Needless to say the bus did not show up to pick up F1-2, so I had to take him in. Then quickly off to drop F1-3 at daycare, and then F1-1 to Middle School.

I think F1-2 will do well in his new class. His Kindergarten class is right next door to his pre-K clas, so it's almost like coming home. I was quite impressed to hear at the "meet-the-teacher" meeting on Friday that there are only 4 kids total in his "functional class room." Two Kindergarteners (of which F1-2 is one), and two 5th graders. They are all non-verbal, although the 5th graders are experts in using PECS. The class is lead by a teacher, two aids, and there is one intern. That makes the student-teacher ratio 1:1! Unless we move him out of the school, he will stay in the same class room through 5th grade. The focus will be on teaching him life skills like feeding himself, using the toilet, using PECS. He will also receive Physical, occupational, and speech therapy in group and individual sessions.

F1-1 did not want me to take him in, but I figured he'd be happier once he was in his home room without having to wander the halls endlessly in search of his home room. He walked several steps beside or behind me as if to say "I don't know this woman. I'm cool, and I don't need help." I tried to embarrass him as little as possible, and kept my distance.

What surprised me more than anything is how grown-up especially the 6th grade girls are. It's as if they all grew boobs over the Summer, and started wearing make-up and high heels. What happened to the little 5th grade kids I saw in the beginning of June? Will my son fit in with all these grown-ups. But I think he will do just fine. It's very interesting to watch pre-teen behavior. He ran into several kids he new and wordlessly hit his balled fist against theirs and turned his back on them without saying a word. I don't get it, but I think this must be an acceptable form of saying hello these days, because the other kids did the same thing and seemed nonplussed by my son's apparent lack of manners.

It's promising to be a very exciting year. Good luck to my both my big boys!!

Small victory?

Earlier this week, while waiting for F1-2 to finish his therapy session, I talked to another parent who was doing the same. He told me he was considering discontinuing immunization of his son. I talked to him for almost half an hour, and I think I've convinced that's not a good idea. If he is concerned about his son getting so many at the time, he can always spread out the immunizations. He and his wife seem like very dedicated parents to me, so they don't mind going back to the doctor more often to give their son all his shots. I had some help from another parent too, so I cannot take all the credit for this. It is good to know that he will make the best choice for his kid and protect him and others around him from some very serious diseases.

Update

In case anyone was wondering.... I am still alive. I just have several projects going on that sadly take priority over blogging.
1. Write a report on microarray analysis.
2. Keep current lab experiments going.
3. Work on construction project at home.
4. Schedule and prepare for a committee meeting.

In addition, P1 and I have signed up for a research project with to assist our communication efforts with F1-2. This will be quite intensive, with meetings twice a week, and activities every day.

Don't worry, I will be back.